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Sample records for palliative care unit

  1. Branding Palliative Care Units by Avoiding the Terms "Palliative" and "Hospice".

    Science.gov (United States)

    Dai, Ying-Xiu; Chen, Tzeng-Ji; Lin, Ming-Hwai

    2017-01-01

    The term "palliative care" has a negative connotation and may act as a barrier to early patient referrals. Rebranding has thus been proposed as a strategy to reduce the negative perceptions associated with palliative care. For example, using the term "supportive care" instead of "palliative care" in naming palliative care units has been proposed in several studies. In Taiwan, terms other than "palliative" and "hospice" are already widely used in the names of palliative care units. With this in mind, this study investigated the characteristics of palliative care unit names in order to better understand the role of naming in palliative care. Relevant data were collected from the Taiwan Academy of Hospice Palliative Medicine, the National Health Insurance Administration of the Ministry of Health and Welfare, and the open database maintained by the government of Taiwan. We found a clear phenomenon of avoiding use of the terms "palliative" and "hospice" in the naming of palliative care units, a phenomenon that reflects the stigma attached to the terms "palliative" and "hospice" in Taiwan. At the time of the study (September, 2016), there were 55 palliative care units in Taiwan. Only 20.0% (n = 11) of the palliative care unit names included the term "palliative," while 25.2% (n = 14) included the term "hospice." Religiously affiliated hospitals were less likely to use the terms "palliative" and "hospice" (χ 2 = 11.461, P = .001). There was also a lower prevalence of use of the terms "palliative" and "hospice" for naming palliative care units in private hospitals than in public hospitals (χ 2 = 4.61, P = .032). This finding highlights the strong stigma attached to the terms "palliative" and "hospice" in Taiwan. It is hypothesized that sociocultural and religious factors may partially account for this phenomenon.

  2. Participation of radiotherapy in interdisciplinary palliative care units. Challenge and chance

    International Nuclear Information System (INIS)

    Momm, F.; Frommhold, H.; Becker, G.; Ewald, H.; Baumgartner, J.; Adamietz, I.A.

    2004-01-01

    Background: in Germany, a sufficient system of palliative care does not exist. Possibilities for participation of radiooncologists in the further development of this promising part of medical action are reported. Material and methods: experiences from interdisciplinary work in the field of palliative care are described. This experience is communicated for use in the actual discussion about the future of palliative care in Germany, especially in the field of radiooncology. Results: a palliative care unit can only work in a team of different professions, which means different physicians, but also nurses, social workers, psychologists or pastors. A palliative care unit will benefit from working with radiooncologists as well as radiooncologists will do from working in the field of palliative care. Conclusion: in times of growing interest in and need for palliative care, radiooncologists should actively participate in the development of palliative care units in Germany. The aim of this participation should be to reasonably arrange the treatment of incurably ill patients with the chances of modern radiotherapy. Another aim should be to improve the treatment of ''classic'' radiation oncology patients by ideas of pallative care. The further development of palliative care in Germany should not take place without the participation of radiooncologists. This will meet the interests of palliative care and radiotherapy and - most importantly - the patients' interests. (orig.) [de

  3. Branding Palliative Care Units by Avoiding the Terms “Palliative” and “Hospice”

    Science.gov (United States)

    Dai, Ying-Xiu; Chen, Tzeng-Ji; Lin, Ming-Hwai

    2017-01-01

    The term “palliative care” has a negative connotation and may act as a barrier to early patient referrals. Rebranding has thus been proposed as a strategy to reduce the negative perceptions associated with palliative care. For example, using the term “supportive care” instead of “palliative care” in naming palliative care units has been proposed in several studies. In Taiwan, terms other than “palliative” and “hospice” are already widely used in the names of palliative care units. With this in mind, this study investigated the characteristics of palliative care unit names in order to better understand the role of naming in palliative care. Relevant data were collected from the Taiwan Academy of Hospice Palliative Medicine, the National Health Insurance Administration of the Ministry of Health and Welfare, and the open database maintained by the government of Taiwan. We found a clear phenomenon of avoiding use of the terms “palliative” and “hospice” in the naming of palliative care units, a phenomenon that reflects the stigma attached to the terms “palliative” and “hospice” in Taiwan. At the time of the study (September, 2016), there were 55 palliative care units in Taiwan. Only 20.0% (n = 11) of the palliative care unit names included the term “palliative,” while 25.2% (n = 14) included the term “hospice.” Religiously affiliated hospitals were less likely to use the terms “palliative” and “hospice” (χ2 = 11.461, P = .001). There was also a lower prevalence of use of the terms “palliative” and “hospice” for naming palliative care units in private hospitals than in public hospitals (χ2 = 4.61, P = .032). This finding highlights the strong stigma attached to the terms “palliative” and “hospice” in Taiwan. It is hypothesized that sociocultural and religious factors may partially account for this phenomenon. PMID:28140730

  4. Palliative Care in Romania.

    Science.gov (United States)

    Mosoiu, Daniela; Mitrea, Nicoleta; Dumitrescu, Malina

    2018-02-01

    HOSPICE Casa Sperantei has been pioneering palliative care development in Romania since 1992. The have developed specialist palliative care services in home-based settings, inpatient units, day care centers, and as hospital support teams. They have provided national and international education programs for professionals in the palliative care field, as well as promoting palliative care integration in the health care system. Legislative improvements were adopted, including funding mechanisms for the reimbursement of palliative care services through the health insurance funds, review of opioid policy, and quality standards of care. By the end of 2015, Romania had 115 specialist palliative care services (78 palliative care inpatient units, 24 home-based palliative care services, five outpatient palliative care clinics, four day care centers, and four hospital support teams). A palliative care subspecialty for doctors was recognized as early as 2000, and a multidisciplinary master's degree program has been available at Transilvania University since 2010, when the first palliative care academic position was established. Nursing education includes mandatory palliative care modules in nursing schools. For coordinated development of palliative care at the national level, a national strategy was proposed defining three levels of palliative care provision, local, district, and national. The implementation of the palliative care strategy is partially funded through a World Bank loan. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

  5. [Palliative sedation at a university palliative care unit--a descriptive analysis].

    Science.gov (United States)

    Hopprich, A; Günther, L D; Laufenberg-Feldmann, R; Reinholz, U; Weber, M

    2016-04-01

    Palliative sedation (pS) is indicated in the presence of end-stage disease with treatment-refractory symptoms not tolerable for the patient. We investigated the practice of pS at a university palliative care unit. Before starting pS the following data were documented: indication and decision making, type of sedation, life expectancy evaluated by the physician using the palliative prognostic index. Over the time of pS communication skills, depth of sedation, relief in symptoms, substitution of fluid and nutrition and used medications were collected. During evaluation time 99 patients died. 34 patients received pS (34 %). All patients suffered from cancer. Indications for palliative sedation were: terminal restlessness (56 %), dyspnea (39 %), pain (32 %), psychological distress (15 %), agitated delir (9 %), vomiting (3 %) and bleeding (3 %) (multiple nominations possible). In 31 cases (91 %) nurses were included for decision making. In 33 cases continuous sedation were initiated immediately (median duration 27.5 hours). The most applied medication was midazolam (94 %), sometimes combined with neuroleptics (44 %) and propofol (15 %). 91 % of the patients additionally received opioids. Artificial fluid was substituted in two cases. Palliative sedation started in the median 27.5 hours before death. The final physician assessment revealed complete symptom relief in 12 patients (35 %), very strong symptom relief in 20 patients (59 %) and moderate symptom relief in 2 patients (6 %). pS was successfully used as last resort for relief of treatment-refractory symptoms in one third of decedents at the investigated palliative care unit. © Georg Thieme Verlag KG Stuttgart · New York.

  6. Palliative Care Development in Mongolia.

    Science.gov (United States)

    Davaasuren, Odontuya; Ferris, Frank D

    2018-02-01

    Since the year 2000, Mongolia has established the foundation measures for a national palliative care program and has made several significant achievements. Systematic reviews and observational studies on palliative care development in Mongolia have taken place over the past 16 years. Mongolia began palliative care development in 2000 with the creation of the Mongolian Palliative Care Society and the Palliative Care Department. Palliative care is included in the Mongolia's Health Law, Health Insurance Law, Social Welfare Law, National Cancer Control Program, and the National Program for Non-Communicable Diseases, and has approved Palliative Care Standards and Pain Management Guidelines. Palliative care education is included in the undergraduate and postgraduate curriculum in all medical universities. Six hospice units in Ulaanbaatar have 50 beds; each of the nine districts and all 21 provinces have up to four to five palliative beds, and there are 36 palliative care units, for a total 190 beds for three million people. In 2014, a pediatric palliative care inpatient unit was established with five beds. Essential drugs for palliative care have been available in Mongolia since 2015. The pharmaceutical company IVCO produces morphine, codeine, pethidine, and oxycodone in Ulaanbaatar. Mongolia has made real progress in integrating palliative care into the health system. Copyright © 2017. Published by Elsevier Inc.

  7. [Palliative care in the intensive cardiac care unit: a new competence for the cardiac intensivist].

    Science.gov (United States)

    Romanò, Massimo; Bertona, Roberta; Zorzoli, Federica; Villani, Rosvaldo

    2017-10-01

    Admissions to the intensive care unit at the end of life of patients with chronic non-malignant diseases are increasing. This involves the need for the development of palliative care culture and competence, also in the field of intensive cardiology. Palliative care should be implemented in the treatment of all patients with critical stages of disease, irrespective of prognosis, in order to improve the quality of care at the end of life.This review analyzes in detail the main clinical, ethical and communicational issues to move toward the introduction of basics of palliative care in cardiac intensive care units. It outlines the importance of shared decision-making with the patient and his family, with special attention to withholding/withdrawing of life-sustaining treatments, palliative sedation, main symptom control, patient and family psychological support.

  8. [Nurses' perception, experience and knowledge of palliative care in intensive care units].

    Science.gov (United States)

    Piedrafita-Susín, A B; Yoldi-Arzoz, E; Sánchez-Fernández, M; Zuazua-Ros, E; Vázquez-Calatayud, M

    2015-01-01

    Adequate provision of palliative care by nursing in intensive care units is essential to facilitate a "good death" to critically ill patients. To determine the perceptions, experiences and knowledge of intensive care nurses in caring for terminal patients. A literature review was conducted on the bases of Pubmed, Cinahl and PsicINFO data using as search terms: cuidados paliativos, UCI, percepciones, experiencias, conocimientos y enfermería and their alternatives in English (palliative care, ICU, perceptions, experiences, knowledge and nursing), and combined with AND and OR Boolean. Also, 3 journals in intensive care were reviewed. Twenty seven articles for review were selected, most of them qualitative studies (n=16). After analysis of the literature it has been identified that even though nurses perceive the need to respect the dignity of the patient, to provide care aimed to comfort and to encourage the inclusion of the family in patient care, there is a lack of knowledge of the end of life care in intensive care units' nurses. This review reveals that to achieve quality care at the end of life, is necessary to encourage the training of nurses in palliative care and foster their emotional support, to conduct an effective multidisciplinary work and the inclusion of nurses in decision making. Copyright © 2014 Elsevier España, S.L.U. y SEEIUC. All rights reserved.

  9. Is there a role of palliative care in the neonatal intensive care unit in India?

    Directory of Open Access Journals (Sweden)

    Manjiri P Dighe

    2011-01-01

    Full Text Available Recent advances in medical care have improved the survival of newborn babies born with various problems. Despite this death in the neonatal intensive care unit (NICU is an inevitable reality. For babies who are not going to "get better," the health care team still has a duty to alleviate the physical suffering of the baby and to support the family. Palliative care is a multidisciplinary approach to relieve the physical, psycho social, and spiritual suffering of patients and their families. Palliative care provision in the Indian NICU settings is almost nonexistent at present. In this paper we attempt to "build a case" for palliative care in the Indian NICU setting.

  10. Differential Family Experience of Palliative Sedation Therapy in Specialized Palliative or Critical Care Units.

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    Shen, Hui-Shan; Chen, Szu-Yin; Cheung, Denise Shuk Ting; Wang, Shu-Yi; Lee, Jung Jae; Lin, Chia-Chin

    2018-02-21

    No study has examined the varying family experience of palliative sedation therapy (PST) for terminally ill patients in different settings. To examine and compare family concerns about PST use and its effect on the grief suffered by terminally ill patients' families in palliative care units (PCUs) or intensive care units (ICUs). A total of 154 family members of such patients were recruited in Taiwan, of whom 143 completed the study, with 81 from the PCU and 62 from the ICU. Data were collected on their concerns regarding PST during recruitment. Grief levels were assessed at three days and one month after the patient's death with the Texas Revised Inventory of Grief. Families' major concern about sedated patients in the PCU was that "there might be other ways to relieve symptoms" (90.2%), whereas families of ICU sedated patients gave the highest ratings to "feeling they still had something more to do" (93.55%), and "the patient's sleeping condition was not dignified" (93.55%). Family members recruited from the ICU tended to experience more grief than those from the PCU (P = 0.005 at Day 3 and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

  11. Developing collaborative person-centred practice: a pilot project on a palliative care unit.

    Science.gov (United States)

    Hall, Pippa; Weaver, Lynda; Gravelle, Debbie; Thibault, Hélène

    2007-02-01

    Maximizing interprofessional collaborative patient-centred practice holds promise for improving patient care and creating satisfying work roles. In Canada's evolving health care system, there are demands for increased efficiency, cost-effectiveness, and quality improvement. Interprofessional collaboration warrants re-examination because maximizing interprofessional collaboration, especially nurse-physician collaboration, holds promise for improving patient care and creating satisfying work roles. A palliative care team seized the opportunity to pilot a different approach to patient and family care when faced with a reduction in medical staff. Grounded in a collaborative patient-centred practice approach, the Canadian Hospice Palliative Care Association's National Model to Guide Hospice Palliative Care (2002), and outcomes from program retreats and workgroups, a collaborative person-centred model of care was developed for a 12-bed pilot project. Preliminary findings show that the pilot project team perceived some specific benefits in continuity of care and interprofessional collaboration, while the presence of the physician was reduced to an average of 3.82 hours on the pilot wing, compared with 8 hours on the non-pilot wings. This pilot study suggests that a person-centred model, when focused on the physician-nurse dyad, may offer improved efficiency, job satisfaction and continuity of care on a palliative care unit. Incorporating all team members and developing strategies to successfully expand the model across the whole unit are the next challenges. Further research into the impact of these changes on the health care professionals, management and patients and families is essential.

  12. Kenya Hospices and Palliative Care Association: integrating palliative care in public hospitals in Kenya.

    Science.gov (United States)

    Ali, Zipporah

    2016-01-01

    In Kenya, cancers as a disease group rank third as a cause of death after infectious and cardiovascular diseases. It is estimated that the annual incidence of cancer is about 37,000 new cases with an annual mortality of 28,000 cases (Kenya National Cancer Control Strategy 2010). The incidence of non-communicable diseases accounts for more than 50% of total hospital admissions and over 55% of hospital deaths (Kenya National Strategy for the Prevention and Control of Non Communicable Diseases 2015-2020). The prevalence of HIV is 6.8 (KIAS 2014). Most of these patients will benefit from palliative care services, hence the need to integrate palliative care services in the public healthcare system. The process of integrating palliative care in public hospitals involved advocacy both at the national level and at the institutional level, training of healthcare professionals, and setting up services within the hospitals that we worked with. Technical support was provided to each individual institution as needed. Eleven provincial hospitals across the country have now integrated palliative care services (Palliative Care Units) and are now centres of excellence. Over 220 healthcare providers have been trained, and approximately, over 30,000 patients have benefited from these services. Oral morphine is now available in the hospital palliative care units. As a success of the pilot project, Kenya Hospices and Palliative Care Association (KEHPCA) is now working with the Ministry of Health Kenya to integrate palliative care services in 30 other county hospitals across the country, thus ensuring more availability and access to more patients. Other developing countries can learn from Kenya's successful experience.

  13. How much does care in palliative care wards cost in Poland?

    Science.gov (United States)

    Ciałkowska-Rysz, Aleksandra D; Pokropska, Wieslawa; Łuczak, Jacek; Kaptacz, Anna; Stachowiak, Andrzej; Hurich, Krystyna; Koszela, Monika

    2016-04-01

    The main task of palliative care units is to provide a dignified life for people with advanced progressive chronic disease through appropriate symptom management, communication between medical specialists and the patient and his family, as well as the coordination of care. Many palliative care units struggle with low incomes from the National Health Fund (NHF), which causes serious economic problems. The aim of the study was to estimate of direct and administrative costs of care and the actual cost per patient per day in selected palliative care units and comparison of the results to the valuation of the NHF. The study of the costs of hospitalization of 175 patients was conducted prospectively in five palliative care units (PCUs). The costs directly associated with care were recorded on the specially prepared forms in each unit and also personnel and administrative costs provided by the accounting departments. The total costs of analyzed units amounted to 209 002 EUR (898 712 PLN), while the payment for palliative care services from the NHF amounted to 126 010 EUR (541 844 PLN), which accounted for only 60% of the costs incurred by the units. The average cost per person per day of hospitalization, calculated according to the actual duration of hospitalization in the unit, was 83 EUR (357 PLN), and the average payment from the NHF was 52.8 EUR (227 PLN). Underpayment per person per day was approximately 29.2 EUR (125 PLN). The study showed a significant difference between the actual cost of palliative care units and the level of refund from the NHF. Based on the analysis of costs, the application has been submitted to the NHF to change the reimbursement amount of palliative care services in 2013.

  14. Effective leadership within hospice and specialist palliative care units.

    Science.gov (United States)

    Barker, L

    2000-01-01

    In this study the Repertory Grid interview technique was used to investigate constructs of leadership held by a group of male and female senior managers from within hospice and Specialist Palliative Care Units (SPCUs) in the UK. The themes that emerged were compared with those from existing research models of leadership. Men and women in these roles describe different constructs of effective leadership. The women's constructs that emerged were predominantly transformational, whilst the men's were predominantly transactional. Themes were also identified in this study, which differed from previous studied, i.e. those of political and environment awareness and the valuing of others' views regardless of their status. These themes do not feature highly in other research, and may be in response to the environment within which hospice and specialist palliative care functions.

  15. Methicillin-resistant Staphylococcus aureus in palliative care: A prospective study of Methicillin-resistant Staphylococcus aureus prevalence in a hospital-based palliative care unit.

    Science.gov (United States)

    Schmalz, Oliver; Strapatsas, Tobias; Alefelder, Christof; Grebe, Scott Oliver

    2016-07-01

    Methicillin-resistant Staphylococcus aureus is a common organism in hospitals worldwide and is associated with morbidity and mortality. However, little is known about the prevalence in palliative care patients. Furthermore, there is no standardized screening protocol or treatment for patients for whom therapy concentrates on symptom control. Examining the prevalence of methicillin-resistant Staphylococcus aureus in palliative care patients as well as the level of morbidity and mortality. We performed a prospective study where methicillin-resistant Staphylococcus aureus screening was undertaken in 296 consecutive patients within 48 h after admission to our palliative care unit. Medical history was taken, clinical examination was performed, and the Karnofsky Performance Scale and Palliative Prognostic Score were determined. Prevalence of Methicillin-resistant Staphylococcus aureus was compared to data of general hospital patients. In total, 281 patients were included in the study having a mean age of 69.7 years (standard deviation = 12.9 years) and an average Karnofsky Performance Scale between 30% and 40%. The mean length of stay was 9.7 days (standard deviation = 7.6 days). A total of 24 patients were methicillin-resistant Staphylococcus aureus positive on the first swab. Median number of swabs was 2. All patients with a negative methicillin-resistant Staphylococcus aureus swab upon admission remained Methicillin-resistant Staphylococcus aureus negative in all subsequent swabs. Our study suggests that the prevalence of Methicillin-resistant Staphylococcus aureus among patients in an in-hospital palliative care unit is much higher than in other patient populations. © The Author(s) 2016.

  16. Palliative care in the neonatal unit: neonatal nursing staff perceptions of facilitators and barriers in a regional tertiary nursery.

    Science.gov (United States)

    Kilcullen, Meegan; Ireland, Susan

    2017-05-11

    Neonatology has made significant advances in the last 30 years. Despite the advances in treatments, not all neonates survive and a palliative care model is required within the neonatal context. Previous research has focused on the barriers of palliative care provision. A holistic approach to enhancing palliative care provision should include identifying both facilitators and barriers. A strengths-based approach would allow barriers to be addressed while also enhancing facilitators. The current study qualitatively explored perceptions of neonatal nurses about facilitators and barriers to delivery of palliative care and also the impact of the regional location of the unit. The study was conducted at the Townsville Hospital, which is the only regional tertiary neonatal unit in Australia. Semi-structured interviews were conducted with a purposive sample of eight neonatal nurses. Thematic analysis of the data was conducted within a phenomenological framework. Six themes emerged regarding family support and staff factors that were perceived to support the provision of palliative care of a high quality. Staff factors included leadership, clinical knowledge, and morals, values, and beliefs. Family support factors included emotional support, communication, and practices within the unit. Five themes emerged from the data that were perceived to be barriers to providing quality palliative care. Staff perceived education, lack of privacy, isolation, staff characteristics and systemic (policy, and procedure) factors to impact upon palliative care provision. The regional location of the unit also presented unique facilitators and barriers to care. This study identified and explored facilitators and barriers in the delivery of quality palliative care for neonates in a regional tertiary setting. Themes identified suggested that a strengths-approach, which engages and amplifies facilitating factors while identified barriers are addressed or minimized, would be successful in

  17. Intensive care unit team perception of palliative care: the discourse of the collective subject.

    Science.gov (United States)

    Gulini, Juliana El Hage Meyer de Barros; Nascimento, Eliane Regina Pereira do; Moritz, Rachel Duarte; Rosa, Luciana Martins da; Silveira, Natyele Rippel; Vargas, Mara Ambrosina de Oliveira

    2017-05-25

    To learn the perception of health professionals in an intensive care unit towards palliative care. This was a descriptive and qualitative study based on the converging care approach conducted at an intensive care unit in the South of Brazil. Semi-structured interviews were used to investigate the understanding of the professionals about palliative care in this unit. The data were organized and analyzed using the discourse of the collective subject method with the help of Qualiquantisoft® software. Participants included 37 professionals (12 nurses, 11nursing technicians, 5 physical therapists and 9 doctors). The key ideas extracted from the interviews were: care in the end stage of life that avoids futile measures; comfort care; lack of standardized care and lack of team training. The professionals perceived palliative care as appropriate in the last stages of life, with no need for futile treatment or as comfort measures. However, they are aware of the lack of standardization and lack of capacity building in this area, which leads them to conceive palliative care as terminal care, and measures are recommended to break with this stigma. Conhecer a percepção dos profissionais de saúde de uma Unidade de Terapia Intensiva acerca do cuidado paliativo. Pesquisa descritiva, qualitativa do tipo Convergente Assistencial realizada em uma Unidade de Terapia Intensiva da região sul do Brasil. Utilizou-se de entrevista semiestruturada que investigou o entendimento e a compreensão sobre cuidado paliativo nesta unidade. Os dados foram organizados e analisados pela técnica do discurso do sujeito coletivo com auxílio do software Qualiquantisoft®. Participaram do estudo 37 profissionais (12 enfermeiros, 11 técnicos de enfermagem, cinco fisioterapeutas e nove médicos). As ideias centrais extraídas dos relatos: cuidado na fase terminal da vida sem medidas fúteis; cuidados de conforto; falta uniformizar a assistência e falta capacitação para a equipe. Os profissionais

  18. Developing a costing framework for palliative care services.

    Science.gov (United States)

    Mosoiu, Daniela; Dumitrescu, Malina; Connor, Stephen R

    2014-10-01

    Palliative care services have been reported to be a less expensive alternative to traditional treatment; however, little is known about how to measure the cost of delivering quality palliative care. The purpose of this project was to develop a standardized method for measuring the cost of palliative care delivery that could potentially be replicated in multiple settings. The project was implemented in three stages. First, an interdisciplinary group of palliative care experts identified standards of quality palliative care delivery in the inpatient and home care services. Surveys were conducted of government agencies and palliative care providers to identify payment practices and budgets for palliative care services. In the second phase, unit costs were defined and a costing framework was designed to measure inpatient and home-based palliative care unit costs. The final phase was advocacy for inclusion of calculated costs into the national funding system. In this project, a reliable framework for determining the cost of inpatient and home-based palliative care services was developed. Inpatient palliative care cost in Romania was calculated at $96.58 per day. Home-based palliative care was calculated at $30.37 per visit, $723.60 per month, and $1367.71 per episode of care, which averaged 45 visits. A standardized methodology and framework for costing palliative care are presented. The framework allows a country or provider of care to substitute their own local costs to generate cost information relevant to the health-care system. In Romania, this allowed the palliative care provider community to advocate for a consistent payment system. Copyright © 2014 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

  19. Parkinson’s disease permanent care unit: managing the chronic-palliative interface

    Directory of Open Access Journals (Sweden)

    Lökk J

    2011-04-01

    Full Text Available Johan LökkDepartment of Neurobiology, Caring Sciences, and Society, Karolinska Institutet; Geriatric Department, Karolinska University Hospital Huddinge, Stockholm, SwedenBackground: Parkinson’s disease (PD eventually leads to severe functional decline and dependence. Specialized care units for PD patients in need of permanent care are lacking.Methods: Patients with severe PD are referred to the PD permanent care unit harboring 30 patients with specialized medical and health care provided by trained staff. Patients need to have intensive medical and care needs, and be no longer able to stay at home or at an ordinary institution. A written and continuously reviewed care plan is made for each patient at admission, with the overriding aim to preserve quality of life and optimize functionality.Results: After five years, the PD permanent care unit has cared for 70 patients (36 men and 34 women with a mean age of 76.6 years and a mean duration of Parkinsonism of 11.8 years. Hoehn and Yahr severity of disease was 3.7, cognition was 25.3 (Mini-Mental State Examination, and the mean daily levodopa dose was 739 mg. The yearly fatality rate was seven, and the mean duration of stay was 26.9 months. Only five patients moved out from the unit.Conclusion: A specially designed and staffed care unit for Parkinsonism patients seems to fill a need for patients and caregivers, as well as for social and health care authorities. This model is sensitive to the changing needs and capacities of patients, ensuring that appropriate services are available in a timely manner. There was a rather short duration of patient stay and remaining life span after admission to the unit. Despite the chronic/palliative state of patients at the PD permanent care unit, there are many therapeutic options, with the overriding objective being to allow the patients to end their days in a professional and comfortable environment.Keywords: Parkinsonism, palliative care, end-stage disease

  20. Palliative Care: A Partnership Across the Continuum of Care.

    Science.gov (United States)

    Spaulding, Aaron; Harrison, Debra A; Harrison, Jeffrey P

    2016-01-01

    Palliative care services are becoming more prevalent in the United States as greater portions of the population are requiring end-of-life services. Furthermore, recent policy changes and service foci have promoted more continuity and encompassing care. This study evaluates characteristics that distinguish hospitals with a palliative care program from hospitals without such a program in order to better define the markets and environments that promote the creation and usage of these programs. This study demonstrates that palliative care programs are more likely in communities with favorable economic factors and higher Medicare populations. Large hospitals with high occupancy rates and a high case mix index use palliative care programs to better meet patient needs and improve hospital efficiency. Managerial, nursing, and policy implications are discussed relating to further usage and implementation of palliative care programs.

  1. 'Palliative sedation'? A retrospective cohort study on the use and labelling of continuously administered sedatives on a palliative care unit.

    Science.gov (United States)

    Schildmann, Eva; Pörnbacher, Sebastian; Kalies, Helen; Bausewein, Claudia

    2018-03-01

    Sedatives are frequently used towards the end of life. However, there is scarce information when their use is labelled as 'palliative sedation'. To assess the use and labelling of 'continuous administration of sedatives within the last 7 days of life', based on objective operational criteria, on a palliative care unit. Retrospective cohort study, using medical records. Explorative statistical analysis (SPSS 23). Patients who died on a palliative care unit from August 2014 to July 2015. Sedatives recorded were benzodiazepines, levomepromazine, haloperidol ⩾5 mg/day and propofol. Of the 192 patients, 149 (78%) patients received continuous sedatives within the last week of life. The prevalence of delirium/agitation was significantly higher in patients with continuous sedatives compared to those without continuous sedatives at admission to the unit (35% vs 16%, p = 0.02) and on the day before death (58% vs 40%, p = 0.04). The term '(palliative) sedation' was used in the records for 22 of 149 (15%) patients with continuous sedatives. These patients had significantly higher total daily midazolam doses 2 days before death (median (range), 15.0 (6.0-185.0) mg vs 11.5 (1.0-70.0) mg, p = 0.04) and on the day of death (median (range), 19.5 (7.5-240.0) mg vs 12.5 (2.0-65.0) mg, p = 0.01). The dose range was large in both groups. The prevalence of delirium/agitation was associated with the administration of continuous sedatives. There was no consistent pattern regarding labelling the use of continuous sedatives as '(palliative) sedation'. Multicentre mixed-methods research is needed for a better characterization of sedation practices in palliative care.

  2. Costs of terminal patients who receive palliative care or usual care in different hospital wards.

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    Simoens, Steven; Kutten, Betty; Keirse, Emmanuel; Berghe, Paul Vanden; Beguin, Claire; Desmedt, Marianne; Deveugele, Myriam; Léonard, Christian; Paulus, Dominique; Menten, Johan

    2010-11-01

    In addition to the effectiveness of hospital care models for terminal patients, policy makers and health care payers are concerned about their costs. This study aims to measure the hospital costs of treating terminal patients in Belgium from the health care payer perspective. Also, this study compares the costs of palliative and usual care in different types of hospital wards. A multicenter, retrospective cohort study compared costs of palliative care with usual care in acute hospital wards and with care in palliative care units. The study enrolled terminal patients from a representative sample of hospitals. Health care costs included fixed hospital costs and charges relating to medical fees, pharmacy and other charges. Data sources consisted of hospital accountancy data and invoice data. Six hospitals participated in the study, generating a total of 146 patients. The findings showed that palliative care in a palliative care unit was more expensive than palliative care in an acute ward due to higher staffing levels in palliative care units. Palliative care in an acute ward is cheaper than usual care in an acute ward. This study suggests that palliative care models in acute wards need to be supported because such care models appear to be less expensive than usual care and because such care models are likely to better reflect the needs of terminal patients. This finding emphasizes the importance of the timely recognition of the need for palliative care in terminal patients treated in acute wards.

  3. Flemish palliative-care nurses' attitudes to palliative sedation: a quantitative study.

    Science.gov (United States)

    Gielen, Joris; Van den Branden, Stef; Van Iersel, Trudie; Broeckaert, Bert

    2012-09-01

    Palliative sedation is an option of last resort to control refractory suffering. In order to better understand palliative-care nurses' attitudes to palliative sedation, an anonymous questionnaire was sent to all nurses (589) employed in palliative care in Flanders (Belgium). In all, 70.5% of the nurses (n = 415) responded. A large majority did not agree that euthanasia is preferable to palliative sedation, were against non-voluntary euthanasia in the case of a deeply and continuously sedated patient and considered it generally better not to administer artificial floods or fluids to such a patient. Two clusters were found: 58.5% belonged to the cluster of advocates of deep and continuous sedation and 41.5% belonged to the cluster of nurses restricting the application of deep and continuous sedation. These differences notwithstanding, overall the attitudes of the nurses are in accordance with the practice and policy of palliative sedation in Flemish palliative-care units.

  4. The role of a palliative care inpatient unit in disease management of ...

    African Journals Online (AJOL)

    Objectives. To monitor the success of an inpatient palliative care unit combining private and state patients, and accessible to patients with cancer and AIDS. Design. An observational study was conducted of patients admitted to the unit in the first 3 months following opening of the ward (1 March - 31 May 2006). Methods.

  5. Palliative sedation, not slow euthanasia: a prospective, longitudinal study of sedation in Flemish palliative care units.

    Science.gov (United States)

    Claessens, Patricia; Menten, Johan; Schotsmans, Paul; Broeckaert, Bert

    2011-01-01

    Palliative sedation remains a much debated and controversial issue. The limited literature on the topic often fails to answer ethical questions concerning this practice. The aim of this study was to describe the characteristics of patients who are being sedated for refractory symptoms in palliative care units (PCUs) from the time of admission until the day of death. A prospective, longitudinal, descriptive design was used to assess data in eight PCUs. The total sample consisted of 266 patients. Information on demographics, medication, food and fluid intake, decision making, level of consciousness, and symptom experience were gathered by nurses and researchers three times a week. If patients received palliative sedation, extra information was gathered. Of all included patients (n=266), 7.5% received palliative sedation. Sedation started, on average, 2.5 days before death and for half of these patients, the form of sedation changed over time. At the start of sedation, patients were in the end stage of their illness and needed total care. Patients were fully conscious and had very limited oral food or fluid intake. Only three patients received artificial fluids at the start of sedation. Patients reported, on average, two refractory symptoms, the most important ones being pain, fatigue, depression, drowsiness, and loss of feeling of well-being. In all cases, the patient gave consent to start palliative sedation because of increased suffering. This study revealed that palliative sedation is only administered in exceptional cases where refractory suffering is evident and for those patients who are close to the ends of their lives. Moreover, this study supports the argument that palliative sedation has no life-shortening effect. Copyright © 2011 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.

  6. Dying in Palliative Care Units and in Hospital: A Comparison of the Quality of Life of Terminal Cancer Patients.

    Science.gov (United States)

    Viney, Linda L.; And Others

    1994-01-01

    Compared quality of life of terminal cancer patients (n=182) in two palliative care units with that of those in general hospital. Patients in specialized palliative care units were found to differ from those dying in hospital, showing less indirectly expressed anger but more positive feelings. They also reported more anxiety about death but less…

  7. Is there a Role of Palliative Care in the Neonatal Intensive Care Unit in India?

    OpenAIRE

    Dighe, Manjiri P; Muckaden, Maryann A; Manerkar, Swati A; Duraisamy, Balaji P

    2011-01-01

    Recent advances in medical care have improved the survival of newborn babies born with various problems. Despite this death in the neonatal intensive care unit (NICU) is an inevitable reality. For babies who are not going to "get better," the health care team still has a duty to alleviate the physical suffering of the baby and to support the family. Palliative care is a multidisciplinary approach to relieve the physical, psycho social, and spiritual suffering of patients and their families. P...

  8. Sedation at the end of life - a nation-wide study in palliative care units in Austria.

    Science.gov (United States)

    Schur, Sophie; Weixler, Dietmar; Gabl, Christoph; Kreye, Gudrun; Likar, Rudolf; Masel, Eva Katharina; Mayrhofer, Michael; Reiner, Franz; Schmidmayr, Barbara; Kirchheiner, Kathrin; Watzke, Herbert Hans

    2016-05-14

    Sedation is used to an increasing extent in end-of-life care. Definitions and indications in this field are based on expert opinions and case series. Little is known about this practice at palliative care units in Austria. Patients who died in Austrian palliative care units between June 2012 and June 2013 were identified. A predefined set of baseline characteristics and information on sedation during the last two weeks before death were obtained by reviewing the patients' charts. The data of 2414 patients from 23 palliative care units were available for analysis. Five hundred two (21 %) patients received sedation in the last two weeks preceding their death, 356 (71 %) received continuous sedation until death, and 119 (24 %) received intermittent sedation. The median duration of sedation was 48 h (IQR 10-72 h); 168 patients (34 %) were sedated for less than 24 h. Indications for sedation were delirium (51 %), existential distress (32 %), dyspnea (30 %), and pain (20 %). Midazolam was the most frequently used drug (79 %), followed by lorazepam (13 %), and haloperidol (10 %). Sedated patients were significantly younger (median age 67 years vs. 74 years, p ≤ 0.001, r = 0.22), suffered more often from an oncological disease (92 % vs. 82 %, p ≤ 0.001, φ = 0.107), and were hospitalized more frequently (94 % vs. 76 %, p ≤ 0.001, φ = 0.175). The median number of days between admission to a palliative care ward/mobile palliative care team and death did not differ significantly in sedated versus non-sedated patients (10 vs. 9 days; p = 0.491). This study provides insights into the practice of end-of-life sedation in Austria. Critical appraisal of these data will serve as a starting point for the development of nation-wide guidelines for palliative sedation in Austria.

  9. Palliative sedation in advanced cancer patients hospitalized in a specialized palliative care unit.

    Science.gov (United States)

    Parra Palacio, Santiago; Giraldo Hoyos, Clara Elisa; Arias Rodríguez, Camilo; Mejía Arrieta, Daniel; Vargas Gómez, John Jairo; Krikorian, Alicia

    2018-03-29

    To describe the practice of palliative sedation (PS) in patients with advanced cancer in a specialized palliative care (PC) unit in Colombia. Descriptive prospective study including all adults with cancer hospitalized under PS in a cancer institute between January and July 2015 in Colombia. Variables examined were diagnosis, physical functioning, symptoms at the start of sedation, medications and dosages used, and type, level, and time of sedation. Descriptive and correlational statistics were obtained. Sixty-six patients were included, 70% of which were women. The patients had an average age of 61 years (range 24-87), and 74% had a Karnofsky Index (KI) of 50% or less. The most frequent diagnosis was breast cancer (22%), and 82% had metastatic cancer. The prevalence of palliative sedation was 2% and the most common symptoms indicating it were dyspnea (59%), delirium (45%), and pain (32%). All patients received midazolam as a sedative. The average time between the interval start and culmination of sedation was 44 h. There was a significant and inverse relationship between functionality and time under sedation. Palliative sedation is a valid therapeutic option for refractory symptoms causing suffering. The results correspond to international reports and guidelines, which suggests that PS is tailored to the needs of the individual patient while maintaining a high scientific standard, even in a context where PC is under development. However, further development of strategies and clear indications towards the use of PS in Colombia are needed, given its still scarce use.

  10. Palliative care and neurology

    Science.gov (United States)

    Boersma, Isabel; Miyasaki, Janis; Kutner, Jean

    2014-01-01

    Palliative care is an approach to the care of patients and families facing progressive and chronic illnesses that focuses on the relief of suffering due to physical symptoms, psychosocial issues, and spiritual distress. As neurologists care for patients with chronic, progressive, life-limiting, and disabling conditions, it is important that they understand and learn to apply the principles of palliative medicine. In this article, we aim to provide a practical starting point in palliative medicine for neurologists by answering the following questions: (1) What is palliative care and what is hospice care? (2) What are the palliative care needs of neurology patients? (3) Do neurology patients have unique palliative care needs? and (4) How can palliative care be integrated into neurology practice? We cover several fundamental palliative care skills relevant to neurologists, including communication of bad news, symptom assessment and management, advance care planning, caregiver assessment, and appropriate referral to hospice and other palliative care services. We conclude by suggesting areas for future educational efforts and research. PMID:24991027

  11. Factors affecting rural volunteering in palliative care - an integrated review.

    Science.gov (United States)

    Whittall, Dawn; Lee, Susan; O'Connor, Margaret

    2016-12-01

    To review factors shaping volunteering in palliative care in Australian rural communities using Australian and International literature. Identify gaps in the palliative care literature and make recommendations for future research. A comprehensive literature search was conducted using Proquest, Scopus, Sage Premier, Wiley online, Ovid, Cochran, Google Scholar, CINAHL and Informit Health Collection. The literature was synthesised and presented in an integrated thematic narrative. Australian Rural communities. While Australia, Canada, the United States (US) and the United Kingdom (UK) are leaders in palliative care volunteer research, limited research specifically focuses on volunteers in rural communities with the least occurring in Australia. Several interrelated factors influence rural palliative care provision, in particular an increasingly ageing population which includes an ageing volunteer and health professional workforce. Also current and models of palliative care practice fail to recognise the innumerable variables between and within rural communities such as distance, isolation, lack of privacy, limited health care services and infrastructure, and workforce shortages. These issues impact palliative care provision and are significant for health professionals, volunteers, patients and caregivers. The three key themes of this integrated review include: (i) Geography, ageing rural populations in palliative care practice, (ii) Psychosocial impact of end-end-of life care in rural communities and (iii) Palliative care models of practice and volunteering in rural communities. The invisibility of volunteers in rural palliative care research is a concern in understanding the issues affecting the sustainability of quality palliative care provision in rural communities. Recommendations for future Australian research includes examination of the suitability of current models of palliative care practice in addressing the needs of rural communities; the recruitment

  12. Palliative Care

    Science.gov (United States)

    ... for Patients and Families What Is Palliative Care? Definition Palliative care (pronounced pal-lee-uh-tiv) is specialized medical care for people with serious illness. This type of care is focused on providing relief from the symptoms and stress of a serious illness. The goal is to ...

  13. Palliative Care: Delivering Comprehensive Oncology Nursing Care.

    Science.gov (United States)

    Dahlin, Constance

    2015-11-01

    To describe palliative care as part of comprehensive oncology nursing care. A review of the palliative care, oncology, and nursing literature over the past 10 years. Palliative care is mandated as part of comprehensive cancer care. A cancer diagnosis often results in distress in the physical, psychosocial, spiritual, and emotional domains of care. Oncology nurses are essential in providing palliative care from diagnosis to death to patients with cancer. They address the myriad aspects of cancer. With palliative care skills and knowledge, oncology nurses can provide quality cancer care. There are many opportunities in which oncology nurses can promote palliative care. Oncology nurses must obtain knowledge and skills in primary palliative care to provide comprehensive cancer care. Copyright © 2015 Elsevier Inc. All rights reserved.

  14. Specialist palliative care nursing and the philosophy of palliative care: a critical discussion.

    Science.gov (United States)

    Robinson, Jackie; Gott, Merryn; Gardiner, Clare; Ingleton, Christine

    2017-07-02

    Nursing is the largest regulated health professional workforce providing palliative care across a range of clinical settings. Historically, palliative care nursing has been informed by a strong philosophy of care which is soundly articulated in palliative care policy, research and practice. Indeed, palliative care is now considered to be an integral component of nursing practice regardless of the specialty or clinical setting. However, there has been a change in the way palliative care is provided. Upstreaming and mainstreaming of palliative care and the dominance of a biomedical model with increasing medicalisation and specialisation are key factors in the evolution of contemporary palliative care and are likely to impact on nursing practice. Using a critical reflection of the authors own experiences and supported by literature and theory from seminal texts and contemporary academic, policy and clinical literature, this discussion paper will explore the influence of philosophy on nursing knowledge and theory in the context of an evolving model of palliative care.

  15. Quality assessment of palliative home care in Italy.

    Science.gov (United States)

    Scaccabarozzi, Gianlorenzo; Lovaglio, Pietro Giorgio; Limonta, Fabrizio; Floriani, Maddalena; Pellegrini, Giacomo

    2017-08-01

    The complexity of end-of-life care, represented by a large number of units caring for dying patients, of different types of organizations motivates the importance of measure the quality of provided care. Despite the law 38/2010 promulgated to remove the barriers and provide affordable access to palliative care, measurement, and monitoring of processes of home care providers in Italy has not been attempted. Using data drawn by an institutional voluntary observatory established in Italy in 2013, collecting home palliative care units caring for people between January and December 2013, we assess the degree to which Italian home palliative care teams endorse a set of standards required by the 38/2010 law and best practices as emerged from the literature. The evaluation strategy is based on Rasch analysis, allowing to objectively measuring both performances of facilities and quality indicators' difficulty on the same metric, using 14 quality indicators identified by the observatory's steering committee. Globally, 195 home care teams were registered in the observatory reporting globally 40 955 cured patients in 2013 representing 66% of the population of home palliative care units active in Italy in 2013. Rasch analysis identifies 5 indicators ("interview" with caregivers, continuous training provided to medical and nursing staff, provision of specialized multidisciplinary interventions, psychological support to the patient and family, and drug supply at home) easy to endorse by health care providers and 3 problematic indicators (presence of a formally established Local Network of Palliative care in the area of reference, provision of the care for most problematic patient requiring high intensity of the care, and the percentage of cancer patient dying at Home). The lack of Local Network of Palliative care, required by law 38/2010, is, at the present, the main barrier to its application. However, the adopted methodology suggests that a clear roadmap for health facilities

  16. Integrated palliative care is about professional networking rather than standardisation of care: A qualitative study with healthcare professionals in 19 integrated palliative care initiatives in five European countries.

    Science.gov (United States)

    den Herder-van der Eerden, Marlieke; van Wijngaarden, Jeroen; Payne, Sheila; Preston, Nancy; Linge-Dahl, Lisa; Radbruch, Lukas; Van Beek, Karen; Menten, Johan; Busa, Csilla; Csikos, Agnes; Vissers, Kris; van Gurp, Jelle; Hasselaar, Jeroen

    2018-06-01

    Integrated palliative care aims at improving coordination of palliative care services around patients' anticipated needs. However, international comparisons of how integrated palliative care is implemented across four key domains of integrated care (content of care, patient flow, information logistics and availability of (human) resources and material) are lacking. To examine how integrated palliative care takes shape in practice across abovementioned key domains within several integrated palliative care initiatives in Europe. Qualitative group interview design. A total of 19 group interviews were conducted (2 in Belgium, 4 in the Netherlands, 4 in the United Kingdom, 4 in Germany and 5 in Hungary) with 142 healthcare professionals from several integrated palliative care initiatives in five European countries. The majority were nurses ( n = 66; 46%) and physicians ( n = 50; 35%). The dominant strategy for fostering integrated palliative care is building core teams of palliative care specialists and extended professional networks based on personal relationships, shared norms, values and mutual trust, rather than developing standardised information exchange and referral pathways. Providing integrated palliative care with healthcare professionals in the wider professional community appears difficult, as a shared proactive multidisciplinary palliative care approach is lacking, and healthcare professionals often do not know palliative care professionals or services. Achieving better palliative care integration into regular healthcare and convincing the wider professional community is a difficult task that will take time and effort. Enhancing standardisation of palliative care into education, referral pathways and guidelines and standardised information exchange may be necessary. External authority (policy makers, insurance companies and professional bodies) may be needed to support integrated palliative care practices across settings.

  17. Palliative Care.

    Science.gov (United States)

    Swetz, Keith M; Kamal, Arif H

    2018-03-06

    Palliative care prioritizes symptom management and quality of life throughout the course of serious illness. Regardless of whether care is inpatient or outpatient, primary or subspecialty, a solid understanding of the basics of effective communication, symptom management, and end-of-life care is crucial. This article reviews these essentials and provides an overview of current evidence to support patient-centered palliative care.

  18. Inter-Professional Palliative Care

    DEFF Research Database (Denmark)

    Madsen, Kirsten Halskov; Henriksen, Jette; Meldgaard, Anette

    2013-01-01

    Chapter 11 by Kirsten Halskov Madsen, Anette Meldgaard and Jette Henriksen deals with the development of palliative care programmes aimed at the basic level of palliative care practice. The need to develop educational opportunities at particularly this level – described as ‘the basic inter......-professional level of palliative care’ – has been increasing for many years where palliative care has conventionally and primarily been associated with specialist training. As the authors show – based on a mapping out of existing educational initiatives in a region of Denmark, a reading of the curriculum...... and a description of the organization of palliative care – there is a need for such inter-professional palliative care that raises the level of competences at the basic level and the sharing of knowledge as well as securing the continuous qualifying of healthcare staff working with palliative care....

  19. Internship report on palliative care at St Catherine's hospice

    OpenAIRE

    Monteiro, Andreia Marlene da Silva

    2016-01-01

    This report, performed in the context of the completion of the masters in Palliative Care, presents the activities and learning experiences that I have acquired during the months of training in the different settings of palliative care. This internship was performed at St Catherine’s Hospice (Inpatient unit, Day hospice and Community team) and with the National Health Service of East Surrey Hospital Specialist Palliative Care Team. Alongside the institutional involvement, internship activitie...

  20. Palliative or Comfort Care

    Science.gov (United States)

    ... is not under control Need help understanding your situation and coordinating care PALLIATIVE CARE Often a team of specialists provides palliative care. The team usually includes: Palliative care doctors and nurses Social workers and chaplains Pharmacists and nutritionists Counselors and others ...

  1. Education, implementation, and policy barriers to greater integration of palliative care: A literature review.

    Science.gov (United States)

    Aldridge, Melissa D; Hasselaar, Jeroen; Garralda, Eduardo; van der Eerden, Marlieke; Stevenson, David; McKendrick, Karen; Centeno, Carlos; Meier, Diane E

    2016-03-01

    Early integration of palliative care into the management of patients with serious disease has the potential to both improve quality of life of patients and families and reduce healthcare costs. Despite these benefits, significant barriers exist in the United States to the early integration of palliative care in the disease trajectory of individuals with serious illness. To provide an overview of the barriers to more widespread palliative care integration in the United States. A literature review using PubMed from 2005 to March 2015 augmented by primary data collected from 405 hospitals included in the Center to Advance Palliative Care's National Palliative Care Registry for years 2012 and 2013. We use the World Health Organization's Public Health Strategy for Palliative Care as a framework for analyzing barriers to palliative care integration. We identified key barriers to palliative care integration across three World Health Organization domains: (1) education domain: lack of adequate education/training and perception of palliative care as end-of-life care; (2) implementation domain: inadequate size of palliative medicine-trained workforce, challenge of identifying patients appropriate for palliative care referral, and need for culture change across settings; (3) policy domain: fragmented healthcare system, need for greater funding for research, lack of adequate reimbursement for palliative care, and regulatory barriers. We describe the key policy and educational opportunities in the United States to address and potentially overcome the barriers to greater integration of palliative care into the healthcare of Americans with serious illness. © The Author(s) 2015.

  2. Current status of palliative care--clinical implementation, education, and research.

    Science.gov (United States)

    Grant, Marcia; Elk, Ronit; Ferrell, Betty; Morrison, R Sean; von Gunten, Charles F

    2009-01-01

    Palliative and end-of-life care is changing in the United States. This dynamic field is improving care for patients with serious and life-threatening cancer through creation of national guidelines for quality care, multidisciplinary educational offerings, research endeavors, and resources made available to clinicians. Barriers to implementing quality palliative care across cancer populations include a rapidly expanding population of older adults who will need cancer care and a decrease in the workforce available to give care. Methods of integrating current palliative care knowledge into care of patients include multidisciplinary national education and research endeavors, and clinician resources. Acceptance of palliative care as a recognized medical specialty provides a valuable resource for improvement of care. Although compilation of evidence for the importance of palliative care specialities is in its initial stages, national research grants have provided support to build the knowledge necessary for appropriate palliative care. Opportunities are available to clinicians for understanding and applying appropriate palliative and end-of-life care to patients with serious and life-threatening cancers. (c) 2009 American Cancer Society, Inc.

  3. Patients' perceptions of palliative care: adaptation of the Quality from the Patient's Perspective instrument for use in palliative care, and description of patients' perceptions of care received.

    Science.gov (United States)

    Sandsdalen, Tuva; Rystedt, Ingrid; Grøndahl, Vigdis Abrahamsen; Hov, Reidun; Høye, Sevald; Wilde-Larsson, Bodil

    2015-11-02

    Instruments specific to palliative care tend to measure care quality from relative perspectives or have insufficient theoretical foundation. The instrument Quality from the Patient's Perspective (QPP) is based on a model for care quality derived from patients' perceptions of care, although it has not been psychometrically evaluated for use in palliative care. The aim of this study was to adapt the QPP for use in palliative care contexts, and to describe patients' perceptions of the care quality in terms of the subjective importance of the care aspects and the perceptions of the care received. A cross-sectional study was conducted between November 2013 and December 2014 which included 191 patients (73% response rate) in late palliative phase at hospice inpatient units, hospice day-care units, wards in nursing homes that specialized in palliative care and homecare districts, all in Norway. An explorative factor analysis using principal component analysis, including data from 184 patients, was performed for psychometric evaluation. Internal consistency was assessed by Cronbach's alpha and paired t-tests were used to describe patients' perceptions of their care. The QPP instrument was adapted for palliative care in four steps: (1) selecting items from the QPP, (2) modifying items and (3) constructing new items to the palliative care setting, and (4) a pilot evaluation. QPP instrument specific to palliative care (QPP-PC) consists of 51 items and 12 factors with an eigenvalue ≥1.0, and showed a stable factor solution that explained 68.25% of the total variance. The reliability coefficients were acceptable for most factors (0.79-0.96). Patients scored most aspects of care related to both subjective importance and actual care received as high. Areas for improvement were symptom relief, participation, continuity, and planning and cooperation. The QPP-PC is based on a theoretical model of quality of care, and has its roots in patients' perspectives. The instrument was

  4. Effect of nutritional support on terminally ill patients with cancer in a palliative care unit.

    Science.gov (United States)

    Amano, Koji; Morita, Tatsuya; Baba, Mika; Kawasaki, Muneyoshi; Nakajima, Shinichiro; Uemura, Minako; Kobayashi, Yuka; Hori, Moeko; Wakayama, Hiroshi

    2013-11-01

    The role of nutritional support on terminally ill patients with cancer in a palliative care unit has not been clarified. A total of 63 patients were retrospectively investigated; the patients receiving individualized nutritional support (intervention group [n = 22]) were compared to the others (control group [n = 41]). The intervention group received individualized nutritional support. There were no significant differences in the characteristics of patients between the groups. The prevalence of bedsores was significantly lower in the intervention group (14% vs 46%, P = .012). The prevalence of edema and the use of antibiotic therapies tended to be lower in the intervention group than in the control group (36% vs 54%, P = .19; 14% vs 27%, P = .34, respectively). Some terminally ill patients with cancer in a palliative care unit might benefit from nutritional support.

  5. When and Why Do Neonatal and Pediatric Critical Care Physicians Consult Palliative Care?

    Science.gov (United States)

    Richards, Claire A; Starks, Helene; O'Connor, M Rebecca; Bourget, Erica; Lindhorst, Taryn; Hays, Ross; Doorenbos, Ardith Z

    2018-06-01

    Parents of children admitted to neonatal and pediatric intensive care units (ICUs) are at increased risk of experiencing acute and post-traumatic stress disorder. The integration of palliative care may improve child and family outcomes, yet there remains a lack of information about indicators for specialty-level palliative care involvement in this setting. To describe neonatal and pediatric critical care physician perspectives on indicators for when and why to involve palliative care consultants. Semistructured interviews were conducted with 22 attending physicians from neonatal, pediatric, and cardiothoracic ICUs in a single quaternary care pediatric hospital. Transcribed interviews were analyzed using content and thematic analyses. We identified 2 themes related to the indicators for involving palliative care consultants: (1) palliative care expertise including support and bridging communication and (2) organizational factors influencing communication including competing priorities and fragmentation of care. Palliative care was most beneficial for families at risk of experiencing communication problems that resulted from organizational factors, including those with long lengths of stay and medical complexity. The ability of palliative care consultants to bridge communication was limited by some of these same organizational factors. Physicians valued the involvement of palliative care consultants when they improved efficiency and promoted harmony. Given the increasing number of children with complex chronic conditions, it is important to support the capacity of ICU clinical teams to provide primary palliative care. We suggest comprehensive system changes and critical care physician training to include topics related to chronic illness and disability.

  6. PALLIATIVE CARE – ITS ROLE IN HEALTHCARE SYSTEMS

    Directory of Open Access Journals (Sweden)

    Urška Lunder

    2003-11-01

    Full Text Available Background. In the last decades a palliative care has been well established in the majority of West European countries. However, majority of these countries are not able to follow needs for palliative care because of demographic changes (older population, changes of morbidity pattern (increase of chronic progressive diseases and social changes (disability of families to care for their relatives at their homes. Research is showing evidence on palliative care effectiveness at end of life and in bereavement. There is still a great need for healthcare professionals’ change in their attitudes, knowledge and skills. In many National strategic plans (United Kingdom, Ireland, Sweden, Australia, New Zealand and Canada palliative care becomes a priority in the national public health. New organizational planning supports establishement of palliative care departments in hospitals and other healthcare settings and consultant teams at all levels of healthcare system. Hospices, caritative and independent organizations, will remain as a source of good clinical practice and philosophy of care at the end of life also in the future.

  7. Acting with dedication and expertise: Relatives' experience of nurses' provision of care in a palliative unit.

    Science.gov (United States)

    Grøthe, Å; Biong, Stian; Grov, E K

    2015-12-01

    Admission of a cancer patient to a palliative unit when near the final stage of their disease trajectory undoubtedly impacts their relatives. The aim of our study was to illuminate and interpret relatives' lived experiences of health personnel's provision of care in a palliative ward. A phenomenological/hermeneutic approach was employed that was inspired by the philosophical tradition of Heidegger and Ricoeur and further developed by Lindseth and Nordberg. The perspectives of the narrator and the text were interpreted by highlighting relatives' views on a situation in which they have to face existential challenges. The analysis was undertaken in three steps: naïve reading, structural analysis, and comprehensive understanding, including the authors' professional experiences and theoretical background. Six subthemes appeared: the dying person, the bubble, the sight, the cover, the provision for children's needs, and the availability of immediate help. These components were further constructed into three themes: the meaning of relating, the meaning of action, and the meaning of resources. Our comprehensive understanding of the results suggests that the most important theme is "acting with dedication and expertise." The following aspects are crucial for relatives of cancer patients hospitalized in a palliative ward: time and existence, family dynamics, and care adjusted to the situation. Our study results led to reflections on the impact of how nurses behave when providing care to patients during the palliative phase, and how they interact with relatives in this situation. We found that cancer patients in a palliative unit most appreciate nurses who act with dedication and expertise.

  8. Palliative Care Leadership Centers Are Key To The Diffusion Of Palliative Care Innovation.

    Science.gov (United States)

    Cassel, J Brian; Bowman, Brynn; Rogers, Maggie; Spragens, Lynn H; Meier, Diane E

    2018-02-01

    Between 2000 and 2015 the proportion of US hospitals with more than fifty beds that had palliative care programs tripled, from 25 percent to 75 percent. The rapid adoption of this high-value program, which is voluntary and runs counter to the dominant culture in US hospitals, was catalyzed by tens of millions of dollars in philanthropic support for innovation, dissemination, and professionalization in the palliative care field. We describe the dissemination strategies of the Center to Advance Palliative Care in the context of the principles of social entrepreneurship, and we provide an in-depth look at its hallmark training initiative, Palliative Care Leadership Centers. Over 1,240 hospital palliative care teams have trained at the Leadership Centers to date, with 80 percent of them instituting palliative care services within two years. We conclude with lessons learned about the role of purposeful technical assistance in promoting the rapid diffusion of high-value health care innovation.

  9. Compared to Palliative Care, Working in Intensive Care More than Doubles the Chances of Burnout: Results from a Nationwide Comparative Study.

    Directory of Open Access Journals (Sweden)

    Sandra Martins Pereira

    Full Text Available Professionals working in intensive and palliative care units, hence caring for patients at the end-of-life, are at risk of developing burnout. Workplace conditions are determinant factors to develop this syndrome among professionals providing end-of-life care.To identify and compare burnout levels between professionals working in intensive and palliative care units; and to assess which workplace experiences are associated with burnout.A nationwide, multicentre quantitative comparative survey study was conducted in Portugal using the following instruments: Maslach Burnout Inventory-Human Services Survey, Questionnaire of workplace experiences and ethical decisions, and Questionnaire of socio-demographic and professional characteristics. A total of 355 professionals from 10 intensive care and 9 palliative care units participated in the survey. A series of univariate and multivariate logistic regression analyses were performed; odds ratio sidelong with 95% confidence intervals were calculated.27% of the professionals exhibited burnout. This was more frequent in intensive care units (OR = 2.525, 95% CI: 1.025-6.221, p = .006. Univariate regression analyses showed that higher burnout levels were significantly associated with conflicts, decisions to withhold/withdraw treatment, and implementing palliative sedation. When controlling for socio-demographic and educational characteristics, and setting (intensive care units versus palliative care units, higher burnout levels were significantly and positively associated with experiencing conflicts in the workplace. Having post-graduate education in intensive/palliative care was significantly but inversely associated to higher burnout levels.Compared to palliative care, working in intensive care units more than doubled the likelihood of exhibiting burnout. Experiencing conflicts (e.g., with patients and/or families, intra and/or inter-teams was the most significant determinant of burnout and having post

  10. Compared to Palliative Care, Working in Intensive Care More than Doubles the Chances of Burnout: Results from a Nationwide Comparative Study

    Science.gov (United States)

    Teixeira, Carla Margarida; Carvalho, Ana Sofia; Hernández-Marrero, Pablo

    2016-01-01

    Introduction Professionals working in intensive and palliative care units, hence caring for patients at the end-of-life, are at risk of developing burnout. Workplace conditions are determinant factors to develop this syndrome among professionals providing end-of-life care. Objectives To identify and compare burnout levels between professionals working in intensive and palliative care units; and to assess which workplace experiences are associated with burnout. Methods A nationwide, multicentre quantitative comparative survey study was conducted in Portugal using the following instruments: Maslach Burnout Inventory–Human Services Survey, Questionnaire of workplace experiences and ethical decisions, and Questionnaire of socio-demographic and professional characteristics. A total of 355 professionals from 10 intensive care and 9 palliative care units participated in the survey. A series of univariate and multivariate logistic regression analyses were performed; odds ratio sidelong with 95% confidence intervals were calculated. Results 27% of the professionals exhibited burnout. This was more frequent in intensive care units (OR = 2.525, 95% CI: 1.025–6.221, p = .006). Univariate regression analyses showed that higher burnout levels were significantly associated with conflicts, decisions to withhold/withdraw treatment, and implementing palliative sedation. When controlling for socio-demographic and educational characteristics, and setting (intensive care units versus palliative care units), higher burnout levels were significantly and positively associated with experiencing conflicts in the workplace. Having post-graduate education in intensive/palliative care was significantly but inversely associated to higher burnout levels. Conclusions Compared to palliative care, working in intensive care units more than doubled the likelihood of exhibiting burnout. Experiencing conflicts (e.g., with patients and/or families, intra and/or inter-teams) was the most significant

  11. Pediatric Palliative Care at a Glance

    Science.gov (United States)

    ® ™ ® Pediatric Palliative Care at a Glance A child’s serious illness affects the entire family. Pediatric palliative (pal-lee-uh-tiv) care can support ... extra support, palliative care can help. What is pediatric palliative care? Pediatric palliative care is supportive care ...

  12. Palliative Care in Cancer

    Science.gov (United States)

    ... care is usually provided by palliative care specialists, health care practitioners who have received special training and/or certification in palliative care. They provide holistic care to the patient and family or caregiver ...

  13. Association between burnout and cortisol secretion, perceived stress, and psychopathology in palliative care unit health professionals.

    Science.gov (United States)

    Fernández-Sánchez, José Carlos; Pérez-Mármol, José Manuel; Blásquez, Antonia; Santos-Ruiz, Ana María; Peralta-Ramírez, María Isabel

    2018-06-01

    ABSTRACTObjective:A high incidence of burnout has been reported in health professionals working in palliative care units. Our present study aims to determine whether there are differences in the secretion of salivary cortisol between palliative care unit health professionals with and without burnout, and to elucidate whether there is a relationship between burnout syndrome and perceived stress and psychopathological status in this population. A total of 69 health professionals who met the inclusion criteria participated in our study, including physicians, nurses, and nursing assistants. Some 58 were women (M = 29.65 years, SD = 8.64) and 11 men (M = 35.67 years, SD = 11.90). The level of daily cortisol was registered in six measurements taken over the course of a workday. Burnout syndrome was evaluated with the Maslach Burnout Inventory-Human Services Survey (MBI-HSS), the level of perceived stress was measured using the Perceived Stress Scale, and psychopathological status was gauged using the SCL-90-R Symptoms Inventory. There were statistically significant differences in secretion of cortisol in professionals with high scores on a single subscale of the MBI-HSS [F(3.5) = 2.48, p burnout showed higher scores on the psychopathology and stress subscales than professionals without it. A higher score in any dimension of the burnout syndrome in palliative care unit health professionals seems to be related to several physiological and psychological parameters. These findings may be relevant for further development of our understanding of the relationship between levels of burnout and cortisol secretion in the health workers in these units.

  14. Are Undergraduate Nurses Taught Palliative Care during Their Training?

    Science.gov (United States)

    Lloyd-Williams, Mari; Field, David

    2002-01-01

    Responses from 46 of 108 nurse educators in the United Kingdom indicated that diploma students received a mean of 7.8 hours and degree students 12.2 hours of palliative care training. Although 82% believed it should be a core component, 67% had difficulty finding qualified teachers. Palliative care knowledge was not formally assessed in most…

  15. Center to Advance Palliative Care palliative care clinical care and customer satisfaction metrics consensus recommendations.

    Science.gov (United States)

    Weissman, David E; Morrison, R Sean; Meier, Diane E

    2010-02-01

    Data collection and analysis are vital for strategic planning, quality improvement, and demonstration of palliative care program impact to hospital administrators, private funders and policymakers. Since 2000, the Center to Advance Palliative Care (CAPC) has provided technical assistance to hospitals, health systems and hospices working to start, sustain, and grow nonhospice palliative care programs. CAPC convened a consensus panel in 2008 to develop recommendations for specific clinical and customer metrics that programs should track. The panel agreed on four key domains of clinical metrics and two domains of customer metrics. Clinical metrics include: daily assessment of physical/psychological/spiritual symptoms by a symptom assessment tool; establishment of patient-centered goals of care; support to patient/family caregivers; and management of transitions across care sites. For customer metrics, consensus was reached on two domains that should be tracked to assess satisfaction: patient/family satisfaction, and referring clinician satisfaction. In an effort to ensure access to reliably high-quality palliative care data throughout the nation, hospital palliative care programs are encouraged to collect and report outcomes for each of the metric domains described here.

  16. Nursing workload for cancer patients under palliative care

    OpenAIRE

    Fuly, Patrícia dos Santos Claro; Pires, Livia Márcia Vidal; Souza, Claudia Quinto Santos de; Oliveira, Beatriz Guitton Renaud Baptista de; Padilha, Katia Grillo

    2016-01-01

    Abstract OBJECTIVE To verify the nursing workload required by cancer patients undergoing palliative care and possible associations between the demographic and clinical characteristics of the patients and the nursing workload. METHOD This is a quantitative, cross-sectional, prospective study developed in the Connective Bone Tissue (TOC) clinics of Unit II of the Brazilian National Cancer Institute José Alencar Gomes da Silva with patients undergoing palliative care. RESULTS Analysis of 197 ...

  17. [The cultural history of palliative care in primitive societies: an integrative review].

    Science.gov (United States)

    Siles González, José; Solano Ruiz, Maria Del Carmen

    2012-08-01

    The objective of this study is to describe the evolution of palliative care in order to reflect on the possibility of its origin in primitive cultures and their relationship with the beginnings of the cult of the dead. It describes the change in the symbolic structures and social interactions involved in palliative care during prehistory: functional unit, functional framework and functional element. The theoretical framework is based on cultural history, the dialectical structural model and symbolic interactionism. Categorization techniques, cultural history and dialectic structuralism analyses were performed. Palliative care existed in primitive societies, mostly associated with the rites of passage with a high symbolic content. The social structures - functional unit, functional framework and functional element - are the pillars that supported palliative care in prehistory societies.

  18. What is Pediatric Palliative Care?

    Science.gov (United States)

    ... FAQ Handout for Patients and Families What Is Pediatric Palliative Care? Pediatric Palliative care (pronounced pal-lee-uh-tiv) is ... life for both the child and the family. Pediatric palliative care is provided by a team of ...

  19. Delirium Frequency and Risk Factors Among Patients With Cancer in Palliative Care Unit.

    Science.gov (United States)

    Şenel, Gülcin; Uysal, Neşe; Oguz, Gonca; Kaya, Mensure; Kadioullari, Nihal; Koçak, Nesteren; Karaca, Serife

    2017-04-01

    Introductıon: Delirium is a complex but common disorder in palliative care with a prevalence between 13% and 88% but a particular frequency at the end of life yet often remains insufficiently diagnosed and managed. The aim of our study is to determine the frequency of delirium and identify factors associated with delirium at palliative care unit. Two hundred thirteen consecutive inpatients from October 1, 2012, to March 31, 2013, were studied prospectively. Age, gender, Palliative Performance Scale (PPS), Palliative Prognostic Index (PPI), length of stay in hospital, and delirium etiology and subtype were recorded. Delirium was diagnosed with using Delirium Rating Scale (DRS) and Diagnostic and Statistical Manual of Mental Disorders, 4th Edition Text Revision ( DSM-IV TR) criteria. The incidence of delirium among the patients with cancer was 49.8%. Mean age was 60.3 ± 14.8 (female 41%, male 59%, PPS 39.8%, PPI 5.9 ± 3.0, length of stay in hospital 8.6 ± 6.9 days). Univariate logistic regression analysis indicated that use of opioids, anticonvulsants, benzodiazepines, steroids, polypharmacy, infection, malnutrition, immobilization, sleep disturbance, constipation, hyperbilirubinemia, liver/renal failure, pulmonary failure/hypoxia, electrolyte imbalance, brain cancer/metastases, decreased PPS, and increased PPI were risk factors. Subtypes of delirium included hypoactive 49%, mixed 41%, and hyperactive 10%. The communicative impediments associated with delirium generate distress for the patient, their family, and health care practitioners who might have to contend with agitation and difficulty in assessing pain and other symptoms. To manage delirium in patients with cancer, clinicians must be able to diagnose it accurately and undertake appropriate assessment of underlying causes.

  20. Ethical validity of palliative sedation therapy: a multicenter, prospective, observational study conducted on specialized palliative care units in Japan.

    Science.gov (United States)

    Morita, Tatsuya; Chinone, Yoshikazu; Ikenaga, Masayuki; Miyoshi, Makoto; Nakaho, Toshimichi; Nishitateno, Kenji; Sakonji, Mitsuaki; Shima, Yasuo; Suenaga, Kazuyuki; Takigawa, Chizuko; Kohara, Hiroyuki; Tani, Kazuhiko; Kawamura, Yasuo; Matsubara, Tatsuhiro; Watanabe, Akihiko; Yagi, Yasuo; Sasaki, Toru; Higuchi, Akiko; Kimura, Hideyuki; Abo, Hirofumi; Ozawa, Taketoshi; Kizawa, Yoshiyuki; Uchitomi, Yosuke

    2005-10-01

    Although palliative sedation therapy is often required in terminally ill cancer patients to achieve acceptable symptom relief, empirical data supporting the ethical validity of this approach are lacking. The primary aim of this study was to systematically investigate whether empirical evidence supports the ethical validity of sedation. This was a multicenter, prospective, observational study, which was conducted by 21 specialized palliative care units in Japan. One-hundred two consecutive adult cancer patients who received continuous deep sedation were enrolled. Continuous deep sedation was defined as the continuous use of sedative medications to relieve intolerable and refractory distress by achieving almost or complete unconsciousness until death. Prior to the study, we conceptualized the ethical validity of sedation from the viewpoints of physicians' intent, proportionality, and autonomy. Sedation was performed mainly with midazolam and phenobarbital. The initial doses of midazolam and phenobarbital were 1.5 mg/hour and 20 mg/hour, respectively. Main administration routes were continuous subcutaneous infusion and continuous intravenous infusion, and no rapid intravenous injection was reported. Of 59 patients who received artificial hydration or could intake adequate fluids/foods orally before sedation, 63% received artificial hydration therapy after sedation, and in the remaining patients, artificial hydration was withheld or withdrawn due to fluid retention symptoms and/or patient wishes. Of 66 patients who were able to verbally express themselves, 95% explicitly stated that symptoms were intolerable. The etiologies of the symptoms requiring sedation were primarily related to the progression of the underlying malignancy, such as cancer cachexia and organ failure, and standard palliative treatments had failed: steroids in 68% of patients with fatigue, opioids in 95% of patients with dyspnea, antisecretion medications in 75% of patients with bronchial secretion

  1. Impact of a New Palliative Care Program on Health System Finances: An Analysis of the Palliative Care Program Inpatient Unit and Consultations at Johns Hopkins Medical Institutions.

    Science.gov (United States)

    Isenberg, Sarina R; Lu, Chunhua; McQuade, John; Chan, Kelvin K W; Gill, Natasha; Cardamone, Michael; Torto, Deirdre; Langbaum, Terry; Razzak, Rab; Smith, Thomas J

    2017-05-01

    Palliative care inpatient units (PCUs) can improve symptoms, family perception of care, and lower per-diem costs compared with usual care. In March 2013, Johns Hopkins Medical Institutions (JHMI) added a PCU to the palliative care (PC) program. We studied the financial impact of the PC program on JHMI from March 2013 to March 2014. This study considered three components of the PC program: PCU, PC consultations, and professional fees. Using 13 months of admissions data, the team calculated the per-day variable cost pre-PCU (ie, in another hospital unit) and after transfer to the PCU. These fees were multiplied by the number of patients transferred to the PCU and by the average length of stay in the PCU. Consultation savings were estimated using established methods. Professional fees assumed a collection rate of 50%. The total positive financial impact of the PC program was $3,488,863.17. There were 153 transfers to the PCU, 60% with cancer, and an average length of stay of 5.11 days. The daily loss pretransfer to the PCU of $1,797.67 was reduced to $1,345.34 in the PCU (-25%). The PCU saved JHMI $353,645.17 in variable costs, or $452.33 per transfer. Cost savings for PC consultations in the hospital, 60% with cancer, were estimated at $2,765,218. $370,000 was collected in professional fees savings. The PCU and PC program had a favorable impact on JHMI while providing expert patient-centered care. As JHMI moves to an accountable care organization model, value-based patient-centered care and increased intensive care unit availability are desirable.

  2. Is home-based palliative care cost-effective? An economic evaluation of the Palliative Care Extended Packages at Home (PEACH) pilot.

    Science.gov (United States)

    McCaffrey, Nikki; Agar, Meera; Harlum, Janeane; Karnon, Jonathon; Currow, David; Eckermann, Simon

    2013-12-01

    The aim of this study was to evaluate the cost-effectiveness of a home-based palliative care model relative to usual care in expediting discharge or enabling patients to remain at home. Economic evaluation of a pilot randomised controlled trial with 28 days follow-up. Mean costs and effectiveness were calculated for the Palliative Care Extended Packages at Home (PEACH) and usual care arms including: days at home; place of death; PEACH intervention costs; specialist palliative care service use; acute hospital and palliative care unit inpatient stays; and outpatient visits. PEACH mean intervention costs per patient ($3489) were largely offset by lower mean inpatient care costs ($2450) and in this arm, participants were at home for one additional day on average. Consequently, PEACH is cost-effective relative to usual care when the threshold value for one extra day at home exceeds $1068, or $2547 if only within-study days of hospital admission are costed. All estimates are high uncertainty. The results of this small pilot study point to the potential of PEACH as a cost-effective end-of-life care model relative to usual care. Findings support the feasibility of conducting a definitive, fully powered study with longer follow-up and comprehensive economic evaluation.

  3. Palliative care content on cancer center websites.

    Science.gov (United States)

    Vater, Laura B; Rebesco, Gina; Schenker, Yael; Torke, Alexia M; Gramelspacher, Gregory

    2018-03-01

    Professional guidelines recommend that palliative care begin early in advanced cancer management, yet integration of palliative and cancer care remains suboptimal. Cancer centers may miss opportunities to provide palliative care information online. In this study, we described the palliative care content on cancer center websites. We conducted a systematic content analysis of 62 National Cancer Institute- (NCI) designated cancer center websites. We assessed the content of center homepages and analyzed search results using the terms palliative care, supportive care, and hospice. For palliative and supportive care webpages, we assessed services offered and language used to describe care. Two researchers analyzed all websites using a standardized coding manual. Kappa values ranged from 0.78 to 1. NCI-designated cancer center homepages presented information about cancer-directed therapy (61%) more frequently than palliative care (5%). Ten percent of cancer centers had no webpage with palliative care information for patients. Among centers with information for patients, the majority (96%) defined palliative or supportive care, but 30% did not discuss delivery of palliative care alongside curative treatment, and 14% did not mention provision of care early in the disease process. Cancer center homepages rarely mention palliative care services. While the majority of centers have webpages with palliative care content, they sometimes omit information about early use of care. Improving accessibility of palliative care information and increasing emphasis on early provision of services may improve integration of palliative and cancer care.

  4. Criteria for successful multiprofessional cooperation in palliative care teams.

    Science.gov (United States)

    Jünger, S; Pestinger, M; Elsner, F; Krumm, N; Radbruch, L

    2007-06-01

    Team work is considered a central component of palliative care. Within this comparatively young field of medicine, the emergence of new institutions (eg, palliative care units) highlights the challenge of establishing a completely new team. This study focuses on the factors, which enhance both the success and outcome criteria of good team work from the perception of team members in a palliative care unit. The palliative care team at the University Hospital of Aachen (n = 19) was interviewed 1 year after the unit's startup by the means of semistructured interviews. Interview texts were analysed using qualitative content analysis. Factors crucial to cooperation in the team members' views were close communication, team philosophy, good interpersonal relationships, high team commitment, autonomy and the ability to deal with death and dying. Moreover, close communication was by far the most frequently mentioned criteria for cooperation. Team performance, good coordination of workflow and mutual trust underpin the evaluation of efficient team work. Inefficient team work is associated with the absence of clear goals, tasks and role delegation, as well as a lack of team commitment. In a new team, close communication is particularly important for staff as they reorientate themselves to the dynamics of a new peer group. The results confirm the overwhelming importance of clarity, commitment and close, positive exchange among team members for successful team work.

  5. Patient-Related Determinants of the Administration of Continuous Palliative Sedation in Hospices and Palliative Care Units: A Prospective, Multicenter, Observational Study.

    Science.gov (United States)

    van Deijck, Rogier H P D; Hasselaar, Jeroen G J; Verhagen, Stans C A H H V M; Vissers, Kris C P; Koopmans, Raymond T C M

    2016-05-01

    Knowledge of determinants that are associated with the administration of continuous palliative sedation (CPS) helps physicians identify patients who are at risk of developing refractory symptoms, thereby enabling proactive care planning. This study aims to explore which patient-related factors at admission are associated with receiving CPS later in the terminal phase of life. A prospective multicenter observational study was performed in six Dutch hospices and three nursing home-based palliative care units. The association between patient-related variables at admission (age, gender, diagnosis, use of opioids or psycholeptics, number of medications, Karnofsky Performance Status scale score, Edmonton Symptom Assessment System distress score, and Glasgow Coma Scale score) and the administration of CPS at the end of life was analyzed. A total of 467 patients died during the study period, of whom 130 received CPS. In univariate analysis, statistically significant differences were noted between the sedated and nonsedated patients with respect to younger age (P = 0.009), malignancy as a diagnosis (P = 0.05), higher Karnofsky Performance Status score (P = 0.03), the use of opioids (P Palliative Medicine. Published by Elsevier Inc. All rights reserved.

  6. Key features of palliative care service delivery to Indigenous peoples in Australia, New Zealand, Canada and the United States: a comprehensive review.

    Science.gov (United States)

    Shahid, Shaouli; Taylor, Emma V; Cheetham, Shelley; Woods, John A; Aoun, Samar M; Thompson, Sandra C

    2018-05-08

    Indigenous peoples in developed countries have reduced life expectancies, particularly from chronic diseases. The lack of access to and take up of palliative care services of Indigenous peoples is an ongoing concern. To examine and learn from published studies on provision of culturally safe palliative care service delivery to Indigenous people in Australia, New Zealand (NZ), Canada and the United States of America (USA); and to compare Indigenous peoples' preferences, needs, opportunities and barriers to palliative care. A comprehensive search of multiple databases was undertaken. Articles were included if they were published in English from 2000 onwards and related to palliative care service delivery for Indigenous populations; papers could use quantitative or qualitative approaches. Common themes were identified using thematic synthesis. Studies were evaluated using Daly's hierarchy of evidence-for-practice in qualitative research. Of 522 articles screened, 39 were eligible for inclusion. Despite diversity in Indigenous peoples' experiences across countries, some commonalities were noted in the preferences for palliative care of Indigenous people: to die close to or at home; involvement of family; and the integration of cultural practices. Barriers identified included inaccessibility, affordability, lack of awareness of services, perceptions of palliative care, and inappropriate services. Identified models attempted to address these gaps by adopting the following strategies: community engagement and ownership; flexibility in approach; continuing education and training; a whole-of-service approach; and local partnerships among multiple agencies. Better engagement with Indigenous clients, an increase in number of palliative care patients, improved outcomes, and understanding about palliative care by patients and their families were identified as positive achievements. The results provide a comprehensive overview of identified effective practices with regards to

  7. Funding models in palliative care: Lessons from international experience

    Science.gov (United States)

    Groeneveld, E Iris; Cassel, J Brian; Bausewein, Claudia; Csikós, Ágnes; Krajnik, Malgorzata; Ryan, Karen; Haugen, Dagny Faksvåg; Eychmueller, Steffen; Gudat Keller, Heike; Allan, Simon; Hasselaar, Jeroen; García-Baquero Merino, Teresa; Swetenham, Kate; Piper, Kym; Fürst, Carl Johan; Murtagh, Fliss EM

    2017-01-01

    Background: Funding models influence provision and development of palliative care services. As palliative care integrates into mainstream health care provision, opportunities to develop funding mechanisms arise. However, little has been reported on what funding models exist or how we can learn from them. Aim: To assess national models and methods for financing and reimbursing palliative care. Design: Initial literature scoping yielded limited evidence on the subject as national policy documents are difficult to identify, access and interpret. We undertook expert consultations to appraise national models of palliative care financing in England, Germany, Hungary, Republic of Ireland, New Zealand, The Netherlands, Norway, Poland, Spain, Sweden, Switzerland, the United States and Wales. These represent different levels of service development and a variety of funding mechanisms. Results: Funding mechanisms reflect country-specific context and local variations in care provision. Patterns emerging include the following: Provider payment is rarely linked to population need and often perpetuates existing inequitable patterns in service provision. Funding is frequently characterised as a mixed system of charitable, public and private payers. The basis on which providers are paid for services rarely reflects individual care input or patient needs. Conclusion: Funding mechanisms need to be well understood and used with caution to ensure best practice and minimise perverse incentives. Before we can conduct cross-national comparisons of costs and impact of palliative care, we need to understand the funding and policy context for palliative care in each country of interest. PMID:28156188

  8. Funding models in palliative care: Lessons from international experience.

    Science.gov (United States)

    Groeneveld, E Iris; Cassel, J Brian; Bausewein, Claudia; Csikós, Ágnes; Krajnik, Malgorzata; Ryan, Karen; Haugen, Dagny Faksvåg; Eychmueller, Steffen; Gudat Keller, Heike; Allan, Simon; Hasselaar, Jeroen; García-Baquero Merino, Teresa; Swetenham, Kate; Piper, Kym; Fürst, Carl Johan; Murtagh, Fliss Em

    2017-04-01

    Funding models influence provision and development of palliative care services. As palliative care integrates into mainstream health care provision, opportunities to develop funding mechanisms arise. However, little has been reported on what funding models exist or how we can learn from them. To assess national models and methods for financing and reimbursing palliative care. Initial literature scoping yielded limited evidence on the subject as national policy documents are difficult to identify, access and interpret. We undertook expert consultations to appraise national models of palliative care financing in England, Germany, Hungary, Republic of Ireland, New Zealand, The Netherlands, Norway, Poland, Spain, Sweden, Switzerland, the United States and Wales. These represent different levels of service development and a variety of funding mechanisms. Funding mechanisms reflect country-specific context and local variations in care provision. Patterns emerging include the following: Provider payment is rarely linked to population need and often perpetuates existing inequitable patterns in service provision. Funding is frequently characterised as a mixed system of charitable, public and private payers. The basis on which providers are paid for services rarely reflects individual care input or patient needs. Funding mechanisms need to be well understood and used with caution to ensure best practice and minimise perverse incentives. Before we can conduct cross-national comparisons of costs and impact of palliative care, we need to understand the funding and policy context for palliative care in each country of interest.

  9. Palliative care and the intensive care nurses: feelings that endure.

    Science.gov (United States)

    Silveira, Natyele Rippel; Nascimento, Eliane Regina Pereira do; Rosa, Luciana Martins da; Jung, Walnice; Martins, Sabrina Regina; Fontes, Moisés Dos Santos

    2016-01-01

    to know the feelings of nurses regarding palliative care in adult intensive care units. qualitative study, which adopted the theoretical framework of Social Representations, carried out with 30 nurses of the state of Santa Catarina included by Snowball sampling. Data were collected through semi-structured interviews conducted from April to August 2015, organized and analyzed through the Collective Subject Discourse. the results showed how central ideas are related to feelings of comfort, frustration, insecurity and anguish, in addition to the feeling that the professional training and performance are focused on the cure. the social representations of nurses regarding the feelings related to palliative care are represented mainly by negative feelings, probably as consequence of the context in which care is provided.

  10. Danish Palliative Care Database

    DEFF Research Database (Denmark)

    Grønvold, Mogens; Adsersen, Mathilde; Hansen, Maiken Bang

    2016-01-01

    Aims: The aim of the Danish Palliative Care Database (DPD) is to monitor, evaluate, and improve the clinical quality of specialized palliative care (SPC) (ie, the activity of hospital-based palliative care teams/departments and hospices) in Denmark. Study population: The study population is all...... patients were registered in DPD during the 5 years 2010–2014. Of those registered, 96% had cancer. Conclusion: DPD is a national clinical quality database for SPC having clinically relevant variables and high data and patient completeness....

  11. Volunteers in Specialist Palliative Care: A Survey of Adult Services in the United Kingdom

    Science.gov (United States)

    Burbeck, Rachel; Low, Joe; Sampson, Elizabeth L.; Bravery, Ruth; Hill, Matthew; Morris, Sara; Ockenden, Nick; Payne, Sheila

    2014-01-01

    Abstract Background: Worldwide, the demand for specialist palliative care is increasing but funding is limited. The role of volunteers is underresearched, although their contribution reduces costs significantly. Understanding what volunteers do is vital to ensure services develop appropriately to meet the challenges faced by providers of palliative care. Objective: The study's objective is to describe current involvement of volunteers with direct patient/family contact in U.K. specialist palliative care. Design: An online survey was sent to 290 U.K. adult hospices and specialist palliative care services involving volunteers covering service characteristics, involvement and numbers of volunteers, settings in which they are involved, extent of involvement in care services, specific activities undertaken in each setting, and use of professional skills. Results: The survey had a 67% response rate. Volunteers were most commonly involved in day care and bereavement services. They entirely ran some complementary therapy, beauty therapy/hairdressing, and pastoral/faith-based care services, and were involved in a wide range of activities, including sitting with dying patients. Conclusions: This comprehensive survey of volunteer activity in U.K. specialist palliative care provides an up-to-date picture of volunteer involvement in direct contact with patients and their families, such as providing emotional care, and the extent of their involvement in day and bereavement services. Further research could focus on exploring their involvement in bereavement care. PMID:24475743

  12. Palliative care in home care: perceptions of occupational therapists

    Directory of Open Access Journals (Sweden)

    Séfora Gomez Portela

    2015-03-01

    Full Text Available This research aimed at understanding and reflecting on the perceptions of occupational therapists regarding the implementation of palliative care in home care. This is an exploratory, qualitative study, through semi-structured interviews, conducted in the second semester of 2012 with eight occupational therapists with experience in palliative care in the city of São Paulo. Content analysis identified four themes: characterization and professional trajectory in the field, understanding the concepts of palliative care, home care and palliative care, and occupational therapy and palliative care in home care. The results suggest that the role of the occupational therapist in this field has taken place at different levels of health care, being addressed to people with varying needs. The use of the concept of palliative care by the interviewees exceeds the notion of end of life, following the changes in the epidemiological transition. They understand that professional services follow the trend of national palliative care services with focus on specialized levels, but manifest the importance of its implementation in primary and home care. Among the barriers to practice, they identified the complexity of “being at home “, peculiarities of palliative care with high cost demands, lack of infrastructure and implementation of the current policy. Professional training and scientific roduction in the area were viewed as inadequate, although they identified a call for change. The interviewees recognized palliative care in home care as a strong professional field, but one still requiring study and discussions regarding its limits and conditions of implementation, especially in the Unified Health System.

  13. Psychosocial issues in palliative care

    African Journals Online (AJOL)

    Repro

    work of all involved in palliative care and understanding this will ... palliative care. The quality of life for patients and the manner of ... In palliative care, the creation of a safe space for families to talk is important. Communication ... family finds balance only with, and in your ... those relationships that are signifi- cant for the ...

  14. Is admittance to specialised palliative care among cancer patients related to sex, age and cancer diagnosis? A nation-wide study from the Danish Palliative Care Database (DPD)

    DEFF Research Database (Denmark)

    Adsersen, Mathilde; Thygesen, Lau Caspar; Jensen, Anders Bonde

    2017-01-01

    /units. Patients with brain cancer were more often admitted to hospices, whereas patients with prostate cancer were more often admitted to hospital-based palliative care teams/units. CONCLUSION: It is unlikely that the variations in relation to sex, age and cancer diagnoses can be fully explained by differences...... to investigate whether cancer patients' admittance to SPC in Denmark varied in relation to sex, age and diagnosis, and whether the patterns differed by type of institution (hospital-based palliative care team/unit, hospice, or both). METHODS: This was a register-based study of adult patients living in Denmark......BACKGROUND: Specialised palliative care (SPC) takes place in specialised services for patients with complex symptoms and problems. Little is known about what determines the admission of patients to SPC and whether there are differences in relation to institution type. The aims of the study were...

  15. Palliative Care

    Science.gov (United States)

    Palliative care is treatment of the discomfort, symptoms, and stress of serious illness. It provides relief from distressing symptoms ... of the medical treatments you're receiving. Hospice care, care at the end of life, always includes ...

  16. Who to include in palliative care research? Consequences of different population definitions in palliative care epidemiology.

    NARCIS (Netherlands)

    Borgsteede, S.D.; Deliens, L.; Francke, A.L.; Stalman, W.A.B.; Willems, D.L.; Eijk, T.T.M. van; Wal, G. van der

    2003-01-01

    Object of the study: Epidemiological research into palliative care faces the problem of defining an adequate research population. Subjects in studies are alternately defined as patients receiving 'palliative care' , 'palliative treatment' or 'end of life care'. So far, it is not known how

  17. Pediatric Palliative Care Initiative in Cambodia

    Directory of Open Access Journals (Sweden)

    Mahmut Yaşar Çeliker

    2017-07-01

    Full Text Available Cancer care with curative intent remains difficult to manage in many resource-limited settings such as Cambodia. Cambodia has a small workforce with limited financial and health-care resources resulting in delayed diagnoses and availability of limited therapeutic tools. Thus, palliative care becomes the primary form of care in most cases. Although palliative care is becoming an integral part of medical care in developed countries, this concept remains poorly understood and utilized in developing countries. Angkor Hospital for Children serves a relatively large pediatric population in northern Cambodia. According to the modern definition of palliative care, approximately two-thirds of the patients admitted to the hospital were deemed candidates to receive palliative care. In an effort to develop a pediatric palliative care team utilizing existing resources and intensive training, our focus group recruited already existing teams with different health-care expertise and other motivated members of the hospital. During this process, we have also formed a palliative care training team of local experts to maintain ongoing palliative care education. Feedback from patients and health-care providers confirmed the effectiveness of these efforts. In conclusion, palliative and sustainable care was offered effectively in a resource-limited setting with adequately trained and motivated local providers. In this article, the steps and systems used to overcome challenges in Cambodia are summarized in the hope that our experience urges governmental and non-governmental agencies to support similar initiatives.

  18. Pediatric Palliative Care Initiative in Cambodia

    Science.gov (United States)

    Çeliker, Mahmut Yaşar; Pagnarith, Yos; Akao, Kazumi; Sophearin, Dim; Sorn, Sokchea

    2017-01-01

    Cancer care with curative intent remains difficult to manage in many resource-limited settings such as Cambodia. Cambodia has a small workforce with limited financial and health-care resources resulting in delayed diagnoses and availability of limited therapeutic tools. Thus, palliative care becomes the primary form of care in most cases. Although palliative care is becoming an integral part of medical care in developed countries, this concept remains poorly understood and utilized in developing countries. Angkor Hospital for Children serves a relatively large pediatric population in northern Cambodia. According to the modern definition of palliative care, approximately two-thirds of the patients admitted to the hospital were deemed candidates to receive palliative care. In an effort to develop a pediatric palliative care team utilizing existing resources and intensive training, our focus group recruited already existing teams with different health-care expertise and other motivated members of the hospital. During this process, we have also formed a palliative care training team of local experts to maintain ongoing palliative care education. Feedback from patients and health-care providers confirmed the effectiveness of these efforts. In conclusion, palliative and sustainable care was offered effectively in a resource-limited setting with adequately trained and motivated local providers. In this article, the steps and systems used to overcome challenges in Cambodia are summarized in the hope that our experience urges governmental and non-governmental agencies to support similar initiatives. PMID:28804708

  19. Pediatric Palliative Care: A Personal Story

    Medline Plus

    Full Text Available ... The story demonstrates how palliative care can positively influence a patient's and family's experience with illness. Category ... Cancer: Palliative Care - Duration: 3:29. American Cancer Society 4,364 views 3:29 Perinatal Palliative Care - ...

  20. Training Spiritual Care in Palliative Care in Teaching Hospitals in the Netherlands (SPIRIT-NL) : A Multicentre Trial

    NARCIS (Netherlands)

    Geer, Joep van de; Zock, Tanja; Leget, Carlo; Veeger, Nic; Prins, Jelle; de Groot, Marieke; Vissers, Kris

    Background: In the Netherlands, the spiritual dimension in healthcare became marginal in the second part of the twentieth century. In the Dutch healthcare sys- tem, palliative care is not a medical specialization and teaching hospitals do not have specialist palliative care units with specialized

  1. Community Palliative Care Nurses' Challenges and Coping Strategies on Delivering Home-Based Pediatric Palliative Care.

    Science.gov (United States)

    Chong, LeeAi; Abdullah, Adina

    2017-03-01

    The aim of this study was to explore the experience of community palliative care nurses providing home care to children. A qualitative study was conducted at the 3 community palliative care provider organizations in greater Kuala Lumpur from August to October 2014. Data were collected with semistructured interviews with 16 nurses who have provided care to children and was analyzed using thematic analysis. Two categories were identified: (1) challenges nurses faced and (2) coping strategies. The themes identified from the categories are (1) communication challenges, (2) inadequate training and knowledge, (3) personal suffering, (4) challenges of the system, (5) intrapersonal coping skills, (6) interpersonal coping strategies, and (7) systemic supports. These results reinforces the need for integration of pediatric palliative care teaching and communication skills training into all undergraduate health care programs. Provider organizational support to meet the specific needs of the nurses in the community can help retain them in their role. It will also be important to develop standards for current and new palliative care services to ensure delivery of quality pediatric palliative care.

  2. PALLIATIVE CARE IN SLOVENIA AND FUTURE CHALLENGES

    Directory of Open Access Journals (Sweden)

    Urška Lunder

    2003-11-01

    Full Text Available Background. Palliative care in Slovene health care system isn’t developed. Comparison with other countries is not possible in many aspects. There is no complete or appropriately educated palliative care team in hospitals or in primary care. Palliative care departments in hospitals and nursing homes do not exist. Holistic palliative home care is offered only by Slovene association of hospice. The pressure on nursing homes and nursing service departments is getting stronger. Standards and norms for staff, for living conditions and medical equipment do not allow any more admittances of patients with the needs of high category of care in these institutions.Conclusions. Indirect indicators of level of palliative care (e.g. morphine consumption, palliative care departments, home care network, undergraduate education, specialisation and research put Slovenia at the bade of the Europe. Statistics predict aging of population and more patients are also living with consequences of progressive chronic diseases and cancer.In the new healthcare reform there is an opportunity for palliative care to get an equal place in healthcare system. With coordinated implementation of palliative care departments, consultant teams and mobile specialistic teams, palliative care could reach a better level of quality. At the same time, quality permanent education is essential.

  3. ICU Bedside Nurses' Involvement in Palliative Care Communication: A Multicenter Survey.

    Science.gov (United States)

    Anderson, Wendy G; Puntillo, Kathleen; Boyle, Deborah; Barbour, Susan; Turner, Kathleen; Cimino, Jenica; Moore, Eric; Noort, Janice; MacMillan, John; Pearson, Diana; Grywalski, Michelle; Liao, Solomon; Ferrell, Bruce; Meyer, Jeannette; O'Neil-Page, Edith; Cain, Julia; Herman, Heather; Mitchell, William; Pantilat, Steven

    2016-03-01

    Successful and sustained integration of palliative care into the intensive care unit (ICU) requires the active engagement of bedside nurses. To describe the perspectives of ICU bedside nurses on their involvement in palliative care communication. A survey was designed, based on prior work, to assess nurses' perspectives on palliative care communication, including the importance and frequency of their involvement, confidence, and barriers. The 46-item survey was distributed via e-mail in 2013 to bedside nurses working in ICUs across the five academic medical centers of the University of California, U.S. The survey was sent to 1791 nurses; 598 (33%) responded. Most participants (88%) reported that their engagement in discussions of prognosis, goals of care, and palliative care was very important to the quality of patient care. A minority reported often discussing palliative care consultations with physicians (31%) or families (33%); 45% reported rarely or never participating in family meeting discussions. Participating nurses most frequently cited the following barriers to their involvement in palliative care communication: need for more training (66%), physicians not asking their perspective (60%), and the emotional toll of discussions (43%). ICU bedside nurses see their involvement in discussions of prognosis, goals of care, and palliative care as a key element of overall quality of patient care. Based on the barriers participants identified regarding their engagement, interventions are needed to ensure that nurses have the education, opportunities, and support to actively participate in these discussions. Copyright © 2016 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

  4. Rawlsian Justice and Palliative Care

    DEFF Research Database (Denmark)

    Knight, Carl; Albertsen, Andreas

    2015-01-01

    Palliative care serves both as an integrated part of treatment and as a last effort to care for those we cannot cure. The extent to which palliative care should be provided and our reasons for doing so have been curiously overlooked in the debate about distributive justice in health and healthcar...... to provide pain relief to those who need it as a supplement to treatment and, without justice-based reasons to provide palliative care to those whose opportunities cannot be restored. We conclude that this makes Daniels' framework much less attractive.......Palliative care serves both as an integrated part of treatment and as a last effort to care for those we cannot cure. The extent to which palliative care should be provided and our reasons for doing so have been curiously overlooked in the debate about distributive justice in health and healthcare....... We argue that one prominent approach, the Rawlsian approach developed by Norman Daniels, is unable to provide such reasons and such care. This is because of a central feature in Daniels' account, namely that care should be provided to restore people's opportunities. Daniels' view is both unable...

  5. Do gender-based disparities in authorship also exist in cancer palliative care? A 15-year survey of the cancer palliative care literature.

    Science.gov (United States)

    Singh, Preet Paul; Jatoi, Aminah

    2008-01-01

    Women physicians in the United States publish less than men and advance academically at a slower pace. Do such gender-based disparities also occur in cancer palliative care, a field in which women appear to hold a strong interest? We undertook a detailed survey of the cancer palliative care literature. We selected 5 cancer palliative care journals on the basis of their high impact factors, and we assessed authorship for the years 1990, 1995, 2000, and 2005. We determined gender and highest educational degree for all US first and last authors. A total of 794 authors are the focus of this report. In 2005, 50% of first authors were women, but only 14% were women physicians. Similarly, 39% of senior authors were women during this year, but only 8% were women physicians. Over this 15-year period, no statistically significant trends were detected to indicate an increase in the number of women authors. These findings are sobering. Future efforts might focus on strategies to improve rates of authorship and, ultimately, improve rates of academic promotion for women interested in cancer palliative care.

  6. Palliative care in Romania

    NARCIS (Netherlands)

    Dumitrescu, Luminita

    2006-01-01

    Palliative care concentrates on supporting and helping people with an incurable disease and aims to improve patient’s quality of life by reducing or eliminating pain and other physical symptoms. Palliative care is a new phenomenon in Romania . PhD student Luminita Dumitrescu describes the

  7. Keep in touch (KIT): perspectives on introducing internet-based communication and information technologies in palliative care.

    Science.gov (United States)

    Guo, Qiaohong; Cann, Beverley; McClement, Susan; Thompson, Genevieve; Chochinov, Harvey Max

    2016-08-02

    Hospitalized palliative patients need to keep in touch with their loved ones. Regular social contact may be especially difficult for individuals on palliative care in-patient units due to the isolating nature of hospital settings. Technology can help mitigate isolation by facilitating social connection. This study aimed to explore the acceptability of introducing internet-based communication and information technologies for patients on a palliative care in-patient unit. In the first phase of the Keep in Touch (KIT) project, a diverse group of key informants were consulted regarding their perspectives on web-based communication on in-patient palliative care units. Participants included palliative patients, family members, direct care providers, communication and information technology experts, and institutional administrators. Data was collected through focus groups, interviews and drop-in consultations, and was analyzed for themes, consensus, and major differences across participant groups. Hospitalized palliative patients and their family members described the challenges of keeping in touch with family and friends. Participants identified numerous examples of ways that communication and information technologies could benefit patients' quality of life and care. Patients and family members saw few drawbacks associated with the use of such technology. While generally supportive, direct care providers were concerned that patient requests for assistance in using the technology would place increased demands on their time. Administrators and IT experts recognized issues such as privacy and costs related to offering these technologies throughout an organization and in the larger health care system. This study affirmed the acceptability of offering internet-based communication and information technologies on palliative care in-patient units. It provides the foundation for trialing these technologies on a palliative in-patient unit. Further study is needed to confirm the

  8. A comprehensive palliative care center implementation in S.B. Ulus State Hospital

    Directory of Open Access Journals (Sweden)

    Ayla Kabalak

    2012-06-01

    Every people wants to best care and to die painless in their end-stage of life. This is a human right. Therefore, end-of-life care is considered an indicator of health quality all over the world. The ultimate goal of palliative care is to relieve the suffering of patients and their families by the comprehensive assessment and treatment of physical, psychosocial, and spiritual symptoms experienced by patients. After the patient\\s death, palliative care focuses primarily on bereavement of the family. T.C. Ministry of Health to find a solution of this important issue as a first step, the preparations for the establishment of palliative care centers and units, training of health personnel started. S.B. Ulus State Hospital as a team we have set out to open a comprehensive palliative care center. Our goal is to contribute on take place of palliative care organization in health system and to the spread across the country. [J Contemp Med 2012; 2(2.000: 122-126

  9. Palliative care team visits. Qualitative study through participant observation.

    Science.gov (United States)

    Alfaya Góngora, Maria Del Mar; Bueno Pernias, Maria José; Hueso Montoro, César; Guardia Mancilla, Plácido; Montoya Juárez, Rafael; García Caro, Maria Paz

    2016-03-30

    To describe the clinical encounters that occur when a palliative care team provides patient care and the features that influence these encounters and indicate whether they are favorable or unfavorable depending on the expectations and feelings of the various participants. A qualitative case study conducted via participant observation. A total of 12 observations of the meetings of palliative care teams with patients and families in different settings (home, hospital and consultation room) were performed. The visits were follow-up or first visits, either scheduled or on demand. Content analysis of the observation was performed. The analysis showed the normal follow-up activity of the palliative care unit that was focused on controlling symptoms, sharing information and providing advice on therapeutic regimens and care. The environment appeared to condition the patients' expressions and the type of patient relationship. Favorable clinical encounter conditions included kindness and gratitude. Unfavorable conditions were deterioration caused by approaching death, unrealistic family objectives and limited resources. Home visits from basic palliative care teams play an important role in patient and family well-being. The visits seem to focus on controlling symptoms and are conditioned by available resources.

  10. Family Caregivers’ Social Representations of Death in a Palliative Care Context

    OpenAIRE

    Sabrina Lessard; Bernard-Simon Leclerc; Suzanne Mongeau

    2016-01-01

    The objective of this study was to consider the social representations of death of family caregivers in a palliative care context. The authors focused on the analysis of 23 interviews with family caregivers who cared for a terminally ill person at home and/or in a specialized palliative care unit, in Québec, Canada. The finding showed that family caregivers had different images that specifically represented death: (a) ...

  11. Palliative care and palliative radiation therapy education in radiation oncology: A survey of US radiation oncology program directors.

    Science.gov (United States)

    Wei, Randy L; Colbert, Lauren E; Jones, Joshua; Racsa, Margarita; Kane, Gabrielle; Lutz, Steve; Vapiwala, Neha; Dharmarajan, Kavita V

    The purpose of this study was to assess the state of palliative and supportive care (PSC) and palliative radiation therapy (RT) educational curricula in radiation oncology residency programs in the United States. We surveyed 87 program directors of radiation oncology residency programs in the United States between September 2015 and November 2015. An electronic survey on PSC and palliative RT education during residency was sent to all program directors. The survey consisted of questions on (1) perceived relevance of PSC and palliative RT to radiation oncology training, (2) formal didactic sessions on domains of PSC and palliative RT, (3) effective teaching formats for PSC and palliative RT education, and (4) perceived barriers for integrating PSC and palliative RT into the residency curriculum. A total of 57 responses (63%) was received. Most program directors agreed or strongly agreed that PSC (93%) and palliative radiation therapy (99%) are important competencies for radiation oncology residents and fellows; however, only 67% of residency programs had formal educational activities in principles and practice of PSC. Most programs had 1 or more hours of formal didactics on management of pain (67%), management of neuropathic pain (65%), and management of nausea and vomiting (63%); however, only 35%, 33%, and 30% had dedicated lectures on initial management of fatigue, assessing role of spirituality, and discussing advance care directives, respectively. Last, 85% of programs reported having a formal curriculum on palliative RT. Programs were most likely to have education on palliative radiation to brain, bone, and spine, but less likely on visceral, or skin, metastasis. Residency program directors believe that PSC and palliative RT are important competencies for their trainees and support increasing education in these 2 educational domains. Many residency programs have structured curricula on PSC and palliative radiation education, but room for improvement exists in

  12. Intensive Care Nurses' Attitude on Palliative and End of Life Care.

    Science.gov (United States)

    Tripathy, Swagata; Routray, Pragyan K; Mishra, Jagdish C

    2017-10-01

    Intensive Care Unit (ICU) nurses have a vital role in the implementation of end of life (EOL) care. There is limited data on the attitude of ICU nurses toward EOL and palliation. This study aimed to investigate knowledge, attitude, and beliefs of intensive care nurses in eastern India toward EOL. A self-administered questionnaire was distributed to delegates in two regional critical care nurses' training programs. Of 178 questionnaires distributed, 138 completed, with a response rate of 75.5*. About half (48.5*) had more than 1 year ICU experience. A majority (81.9*) agreed that nurses should be involved in and initiate (62.3*) EOL discussions. Terms "EOL care or palliative care in ICU" were new for 19.6*; 21* and 55.8* disagreed with allowing peaceful death in terminal patients and unrestricted family visits, respectively. Work experience was associated with wanting unrestricted family visitation, discontinuing monitoring and investigations at EOL, equating withholding and withdrawal of treatment, and being a part of EOL team discussions ( P = 0.005, 0.01, 0.01, and 0.001), respectively. Religiousness was associated with a greater desire to initiate EOL discussions ( P = 0.001). Greater emphasis on palliative care in critical care curriculum may improve awareness among critical care nurses.

  13. Burnout among physicians in palliative care: Impact of clinical settings.

    Science.gov (United States)

    Dréano-Hartz, Soazic; Rhondali, Wadih; Ledoux, Mathilde; Ruer, Murielle; Berthiller, Julien; Schott, Anne-Marie; Monsarrat, Léa; Filbet, Marilène

    2016-08-01

    Burnout syndrome is a work-related professional distress. Palliative care physicians often have to deal with complex end-of-life situations and are at risk of presenting with burnout syndrome, which has been little studied in this population. Our study aims to identify the impact of clinical settings (in a palliative care unit (PCU) or on a palliative care mobile team (PCMT)) on palliative care physicians. We undertook a cross-sectional study using a questionnaire that included the Maslach Burnout Inventory (MBI), and we gathered sociodemographic and professional data. The questionnaire was sent to all 590 physicians working in palliative care in France between July of 2012 and February of 2013. The response rate was 61, 8% after three reminders. Some 27 (9%) participants showed high emotional exhaustion, 12 (4%) suffered from a high degree of depersonalization, and 71 (18%) had feelings of low personal accomplishment. Physicians working on a PCMT tended (p = 0.051) to be more likely to suffer from emotional exhaustion than their colleagues. Physicians working on a PCMT worked on smaller teams (fewer physicians, p < 0.001; fewer nonphysicians, p < 0.001). They spent less time doing research (p = 0.019), had fewer resources (p = 0.004), and their expertise seemed to be underrecognized by their colleagues (p = 0.023). The prevalence of burnout in palliative care physicians was low and in fact lower than that reported in other populations (e.g., oncologists). Working on a palliative care mobile team can be a more risky situation, associated with a lack of medical and paramedical staff.

  14. The Quality of Life of Palliative Care Staff: A Personal Construct Approach.

    Science.gov (United States)

    Viney, Linda L.; And Others

    1994-01-01

    Compared palliative care staff with staff from burn and neonatal units and with mature age general nursing trainees at end of training. Found that palliative care staff expressed better quality of life, in terms of significantly less anxiety and depression, as well as more good feelings than other staff groups. (Author/NB)

  15. A case report of dexmedetomidine used to treat intractable pain and delirium in a tertiary palliative care unit.

    Science.gov (United States)

    Hilliard, Neil; Brown, Stuart; Mitchinson, Steve

    2015-03-01

    This case report describes an end-stage cancer patient with intractable neuropathic pain and delirium who was successfully managed during the last 3 weeks of her life with a continuous subcutaneous infusion of dexmedetomidine. A 55-year-old woman with locally advanced cervical cancer and uncontrolled pelvic pain was admitted to a tertiary palliative care unit for pain management. As her disease progressed, the patient's pelvic pain intensified despite treatment with methadone, gabapentin, ketamine, and hydromorphone administered by continuous subcutaneous infusion plus frequent breakthrough doses of hydromorphone and sufentanil. A continuous subcutaneous infusion of dexmedetomidine was started and titrated to achieve pain relief. The patient's pain and delirium cleared. The treatment was successful in fulfilling the patient's goal of care: not to be deeply and continuously sedated, but to be rousable and of clear mind while still having good pain control. Dexmedetomidine is a potentially useful medication for the targeted treatment of intractable pain and delirium in the tertiary palliative care environment. Future research is required to compare dexmedetomidine infusion to standard treatment with midazolam infusion for treatment of intractable symptoms in the palliative care environment. © The Author(s) 2014.

  16. Neonatal palliative care: developing consensus among neonatologists using the Delphi technique in Portugal.

    Science.gov (United States)

    Mendes, Joana C C; Justo da Silva, Lincoln

    2013-12-01

    Pediatric palliative care in Portugal is improving, but there is still additional work to do concerning programs or guidelines for this subject. In Portugal, physicians are the stakeholders in the decision-making process with reference to the transition to palliative care in the neonatal intensive care unit, and it was considered very important to raise their awareness and motivation about neonatal palliative care. Our research was based on Catlin and Carter's protocol from 2002 and the main goal was to assess neonatologists' willingness to build a palliative care and end-of-life protocol that could be acceptable nationwide. The survey used the Delphi technique and was developed in 3 rounds. The expert panel was composed of 57 participants who represented 41% of the Portuguese neonatologists. The study was conducted via the Internet, based in a researcher-created private Web site, and e-mail was used for data collection and feedback. Neonatologists agreed on 7 areas: (1) planning (medical education, resources, and local), (2) prenatal palliative care, (3) neonatal palliative care criteria, (4) the parents (presenting neonatal palliative care to parents, including then in the daily care of newborns and in family-centered care), (5) physicians' needs, (6) pain and symptom management, and (7) end-of-life care (withholding/withdrawing ventilation and hydration/nutrition).

  17. Reporting of pediatric palliative care: A systematic review and quantitative analysis of research publications in palliative care journals

    Directory of Open Access Journals (Sweden)

    Senthil P Kumar

    2011-01-01

    Conclusions: The overall reporting rate for pediatric palliative care articles in palliative care journals was very low and there were no randomized clinical trials and systematic reviews found. The study findings indicate a lack of adequate evidence base for pediatric palliative care.

  18. The Cambia Sojourns Scholars Leadership Program: Conversations with Emerging Leaders in Palliative Care.

    Science.gov (United States)

    Cruz-Oliver, Dulce M; Bernacki, Rachelle; Cooper, Zara; Grudzen, Corita; Izumi, Seiko; Lafond, Deborah; Lam, Daniel; LeBlanc, Thomas W; Tjia, Jennifer; Walter, Jennifer

    2017-08-01

    There is a pressing workforce shortage and leadership scarcity in palliative care to adequately meet the demands of individuals with serious illness and their families. To address this gap, the Cambia Health Foundation launched its Sojourns Scholars Leadership Program in 2014, an initiative designed to identify, cultivate, and advance the next generation of palliative care leaders. This report intends to summarize the second cohort of Sojourns Scholars' projects and their reflection on their leadership needs. This report summarizes the second cohort of sojourns scholars' project and their reflection on leadership needs. After providing a written reflection on their own projects, the second cohort participated in a group interview (fireside chat) to elicit their perspectives on barriers and facilitators in providing palliative care, issues facing leadership in palliative care in the United States, and lessons from personal and professional growth as leaders in palliative care. They analyzed the transcript of the group interview using qualitative content analysis methodology. Three themes emerged from descriptions of the scholars' project experience: challenges in palliative care practice, leadership strategies in palliative care, and three lessons learned to be a leader were identified. Challenges included perceptions of palliative care, payment and policy, and workforce development. Educating and collaborating with other clinicians and influencing policy change are important strategies used to advance palliative care. Time management, leading team effort, and inspiring others are important skills that promote effectiveness as a leader. Emerging leaders have a unique view of conceptualizing contemporary palliative care and shaping the future. Providing comprehensive, coordinated care that is high quality, patient and family centered, and readily available depends on strong leadership in palliative care. The Cambia Scholars Program represents a unique opportunity.

  19. Diagnostic radiology in paediatric palliative care

    International Nuclear Information System (INIS)

    Patel, Preena; Koh, Michelle; Carr, Lucinda; McHugh, Kieran

    2014-01-01

    Palliative care is an expanding specialty within paediatrics, which has attracted little attention in the paediatric radiological literature. Paediatric patients under a palliative care team will have numerous radiological tests which we traditionally categorise under organ systems rather than under the umbrella of palliative medicine. The prevalence of children with life-limiting illness is significant. It has been estimated to be one per thousand, and this may be an underestimate. In this review, we will focus on our experience at one institution, where radiology has proven to be an invaluable partner to palliative care. We will discuss examples of conditions commonly referred to our palliative care team and delineate the crucial role of diagnostic radiology in determining treatment options. (orig.)

  20. Diagnostic radiology in paediatric palliative care

    Energy Technology Data Exchange (ETDEWEB)

    Patel, Preena; Koh, Michelle; Carr, Lucinda; McHugh, Kieran [Great Ormond Street Hospital, Radiology Department, London (United Kingdom)

    2014-01-15

    Palliative care is an expanding specialty within paediatrics, which has attracted little attention in the paediatric radiological literature. Paediatric patients under a palliative care team will have numerous radiological tests which we traditionally categorise under organ systems rather than under the umbrella of palliative medicine. The prevalence of children with life-limiting illness is significant. It has been estimated to be one per thousand, and this may be an underestimate. In this review, we will focus on our experience at one institution, where radiology has proven to be an invaluable partner to palliative care. We will discuss examples of conditions commonly referred to our palliative care team and delineate the crucial role of diagnostic radiology in determining treatment options. (orig.)

  1. Advancing palliative care as a human right.

    Science.gov (United States)

    Gwyther, Liz; Brennan, Frank; Harding, Richard

    2009-11-01

    The international palliative care community has articulated a simple but challenging proposition that palliative care is an international human right. International human rights covenants and the discipline of palliative care have, as common themes, the inherent dignity of the individual and the principles of universality and nondiscrimination. However, when we consider the evidence for the effectiveness of palliative care, the lack of palliative care provision for those who may benefit from it is of grave concern. Three disciplines (palliative care, public health, and human rights) are now interacting with a growing resonance. The maturing of palliative care as a clinical specialty and academic discipline has coincided with the development of a public health approach to global and community-wide health problems. The care of the dying is a public health issue. Given that death is both inevitable and universal, the care of people with life-limiting illness stands equal to all other public health issues. The International Covenant on Economic, Social and Cultural Rights (ICESCR) includes the right to health care and General Comment 14 (paragraph 34) CESCR stipulates that "States are under the obligation to respect the right to health by, inter alia, refraining from denying or limiting equal access for all persons, ... to preventive, curative and palliative health services." However, these rights are seen to be aspirational-rights to be achieved progressively over time by each signatory nation to the maximum capacity of their available resources. Although a government may use insufficient resources as a justification for inadequacies of its response to palliative care and pain management, General Comment 14 set out "core obligations" and "obligations of comparable priority" in the provision of health care and placed the burden on governments to justify "that every effort has nevertheless been made to use all available resources at its disposal in order to satisfy, as

  2. Creation of minimum standard tool for palliative care in India and self-evaluation of palliative care programs using it

    Directory of Open Access Journals (Sweden)

    M R Rajagopal

    2014-01-01

    Full Text Available Background: It is important to ensure that minimum standards for palliative care based on available resources are clearly defined and achieved. Aims: (1 Creation of minimum National Standards for Palliative Care for India. (2 Development of a tool for self-evaluation of palliative care organizations. (3 Evaluation of the tool in India. In 2006, Pallium India assembled a working group at the national level to develop minimum standards. The standards were to be evaluated by palliative care services in the country. Materials and Methods: The working group prepared a "standards" document, which had two parts - the first composed of eight "essential" components and the second, 22 "desirable" components. The working group sent the document to 86 hospice and palliative care providers nationwide, requesting them to self-evaluate their palliative care services based on the standards document, on a modified Likert scale. Results: Forty-nine (57% palliative care organizations responded, and their self-evaluation of services based on the standards tool was analyzed. The majority of the palliative care providers met most of the standards identified as essential by the working group. A variable percentage of organizations had satisfied the desirable components of the standards. Conclusions: We demonstrated that the "standards tool" could be applied effectively in practice for self-evaluation of quality of palliative care services.

  3. Burnout syndrome in nurses working in palliative care units: An analysis of associated factors.

    Science.gov (United States)

    Rizo-Baeza, Mercedes; Mendiola-Infante, Susana Virginia; Sepehri, Armina; Palazón-Bru, Antonio; Gil-Guillén, Vicente Francisco; Cortés-Castell, Ernesto

    2018-01-01

    To analyse the association between psychological, labour and demographic factors and burnout in palliative care nursing. There is a lack of published research evaluating burnout in palliative care nursing. This observational cross-sectional study involved 185 palliative care nurses in Mexico. The primary variables were burnout defined by its three dimensions (emotional exhaustion, depersonalization and personal accomplishment). As secondary variables, psychological, labour and demographic factors were considered. A binary logistic regression model was constructed to determine factors associated with burnout. A total of 69 nurses experienced high emotional exhaustion (37.3%), 65 had high depersonalization (35.1%) and 70 had low personal performance (37.8%). A higher proportion of burnout was found in the participants who were single parents, working >8 hr per day, with a medium/high workload, a lack of a high professional quality of life and a self-care deficit. Our multivariate models were very accurate in explaining burnout in palliative care nurses. These models must be externally validated to predict burnout and prevent future complications of the syndrome accurately. Nurses who present the factors found should be the focus of interventions to reduce work stress. © 2017 John Wiley & Sons Ltd.

  4. A Survey of Hospice and Palliative Care Physicians Regarding Palliative Sedation Practices.

    Science.gov (United States)

    Lux, Michael R; Protus, Bridget McCrate; Kimbrel, Jason; Grauer, Phyllis

    2017-04-01

    Patients nearing the end of life may experience symptoms that are refractory to standard therapeutic options. Physicians may consider palliative sedation to relieve intolerable suffering. There is limited clinical literature regarding preferred medications for palliative sedation. To determine the preferred medications physicians use when implementing palliative sedation. An Internet-based, cross-sectional survey of hospice and palliative care physicians in the United States. A link to the survey was e-mailed to 3130 physician members of the American Academy of Hospice and Palliative Medicine, of which 381 physicians completed the survey. Physicians were not required to answer all questions. Nearly all (n = 335, 99%) respondents indicated that palliative sedation may be used (acceptable by 73% [n = 248] for refractory symptoms and acceptable by 26% [n = 87] only for imminently dying patients). Seventy-nine percent (n = 252) believed that opioids should not be used to induce palliative sedation but should be continued to provide pain control. Midazolam was the most commonly selected first-line choice for palliative sedation (n = 155, 42%). The most commonly reported second-line agents for the induction of palliative sedation were lorazepam, midazolam (for those who did not select midazolam as first-line agent), and phenobarbital with a reported preference of 20% (n = 49), 19% (n = 46), and 17% (n = 40), respectively. Of the physicians surveyed, 99% (n = 335) felt that palliative sedation is a reasonable treatment modality. Midazolam was considered a drug of choice for inducing and maintaining sedation, and opioids were continued for pain control.

  5. Mapping the scope of occupational therapy practice in palliative care: A European Association for Palliative Care cross-sectional survey.

    Science.gov (United States)

    Eva, Gail; Morgan, Deidre

    2018-05-01

    Occupational therapists play an integral role in the care of people with life-limiting illnesses. However, little is known about the scope of occupational therapy service provision in palliative care across Europe and factors influencing service delivery. This study aimed to map the scope of occupational therapy palliative care interventions across Europe and to explore occupational therapists' perceptions of opportunities and challenges when delivering and developing palliative care services. A 49-item online cross-sectional survey comprised of fixed and free text responses was securely hosted via the European Association for Palliative Care website. Survey design, content and recruitment processes were reviewed and formally approved by the European Association for Palliative Care Board of Directors. Descriptive statistics and thematic analysis were used to analyse data. Setting/respondents: Respondents were European occupational therapists whose caseload included palliative care recipients (full-time or part-time). In total, 237 valid responses were analysed. Findings demonstrated a consistency in occupational therapy practice in palliative care between European countries. Clinician time was prioritised towards indirect patient care, with limited involvement in service development, leadership and research. A need for undergraduate and postgraduate education was identified. Organisational expectations and understanding of the scope of the occupational therapy role constrain the delivery of services to support patients and carers. Further development of occupational therapy in palliative care, particularly capacity building in leadership and research activities, is warranted. There is a need for continuing education and awareness raising of the role of occupational therapy in palliative care.

  6. Team networking in palliative care

    Directory of Open Access Journals (Sweden)

    Odette Spruyt

    2011-01-01

    Full Text Available "If you want to travel quickly, go alone. But if you want to travel far, you must go together". African proverb. The delivery of palliative care is often complex and always involves a group of people, the team, gathered around the patient and those who are close to them. Effective communication and functional responsive systems of care are essential if palliative care is to be delivered in a timely and competent way. Creating and fostering an effective team is one of the greatest challenges for providers of palliative care. Teams are organic and can be life giving or life sapping for their members.

  7. Team Networking in Palliative Care

    Science.gov (United States)

    Spruyt, Odette

    2011-01-01

    “If you want to travel quickly, go alone. But if you want to travel far, you must go together”. African proverb. The delivery of palliative care is often complex and always involves a group of people, the team, gathered around the patient and those who are close to them. Effective communication and functional responsive systems of care are essential if palliative care is to be delivered in a timely and competent way. Creating and fostering an effective team is one of the greatest challenges for providers of palliative care. Teams are organic and can be life giving or life sapping for their members. PMID:21811361

  8. Pediatric Oncology Palliative Care: Experiences of General Practitioners and Bereaved Parents.

    OpenAIRE

    Neilson, SJ; Gibson, F; Greenfield, SM

    2015-01-01

    Objective: This qualitative study set in the West Midlands region of the United Kingdom, aimed to examine the\\ud role of the general practitioner (GP) in children's oncology palliative care from the perspective of GPs who had cared for a child with cancer receiving palliative care at home and bereaved parents.\\ud Methods: One-to-one semi-structured interviews were undertaken with 18 GPs and 11 bereaved parents\\ud following the death. A grounded theory data analysis was undertaken; identifying...

  9. Implementing Outcome Measures Within an Enhanced Palliative Care Day Care Model.

    LENUS (Irish Health Repository)

    Kilonzo, Isae

    2015-04-23

    Specialist palliative care day care (SPDC) units provide an array of services to patients and their families and can increase continuity of care between inpatient and homecare settings. A multidisciplinary teamwork approach is emphasized, and different models of day care exist. Depending on the emphasis of care, the models can be social, medical, therapeutic, or mixed. We describe our experience of introducing an enhanced therapeutic specialist day care model and using both patient- and carer-rated tools to monitor patient outcomes.

  10. Palliative Care: Improving Nursing Knowledge, Attitudes, and Behaviors
.

    Science.gov (United States)

    Harden, Karen; Price, Deborah; Duffy, Elizabeth; Galunas, Laura; Rodgers, Cheryl

    2017-10-01

    Oncology nurses affect patient care at every point along the cancer journey. This creates the perfect opportunity to educate patients and caregivers about palliative care early and often throughout treatment. However, healthcare providers frequently do not have the knowledge and confidence to engage in meaningful conversations about palliative care.
. The specific aims were to improve oncology nurses' palliative care knowledge, attitudes, and behaviors by providing a palliative care nursing education program. An additional aim was to increase the number of conversations with patients and families about palliative care.
. This project had a pre-/post-test design to assess knowledge, attitudes, and behaviors at baseline and one month after implementation of an established education curriculum. The teaching strategy included one four-hour class for oncology RNs with topics about the definition of palliative care, pain and symptom management, and how to have palliative care conversations.
. Results showed a statistically significant difference after the educational intervention for knowledge, attitudes, and behaviors. The number of conversations with patients and caregivers about palliative and end-of-life care increased significantly.

  11. Assessment of a Statewide Palliative Care Team Training Course: COMFORT Communication for Palliative Care Teams.

    Science.gov (United States)

    Wittenberg, Elaine; Ferrell, Betty; Goldsmith, Joy; Ragan, Sandra L; Paice, Judith

    2016-07-01

    Despite increased attention to communication skill training in palliative care, few interprofessional training programs are available and little is known about the impact of such training. This study evaluated a communication curriculum offered to interprofessional palliative care teams and examined the longitudinal impact of training. Interprofessional, hospital-based palliative care team members were competitively selected to participate in a two-day training using the COMFORT(TM SM) (Communication, Orientation and options, Mindful communication, Family, Openings, Relating, Team) Communication for Palliative Care Teams curriculum. Course evaluation and goal assessment were tracked at six and nine months postcourse. Interprofessional palliative care team members (n = 58) representing 29 teams attended the course and completed course goals. Participants included 28 nurses, 16 social workers, 8 physicians, 5 chaplains, and one psychologist. Precourse surveys assessed participants' perceptions of institution-wide communication performance across the continuum of care and resources supporting optimum communication. Postcourse evaluations and goal progress monitoring were used to assess training effectiveness. Participants reported moderate communication effectiveness in their institutions, with the weakest areas being during bereavement and survivorship care. Mean response to course evaluation across all participants was greater than 4 (scale of 1 = low to 5 = high). Participants taught an additional 962 providers and initiated institution-wide training for clinical staff, new hires, and volunteers. Team member training improved communication processes and increased attention to communication with family caregivers. Barriers to goal implementation included a lack of institutional support as evidenced in clinical caseloads and an absence of leadership and funding. The COMFORT(TM SM) communication curriculum is effective palliative care communication

  12. Understanding the concept and challenges of palliative care medicine

    African Journals Online (AJOL)

    MJP

    2015-06-25

    Jun 25, 2015 ... 2 Nephrology Unit, Department of Internal Medicine, Federal Medical Centre Umuahia, Abia ... Key words: Palliative care, pain control, hospice, spirituality, cancer, end-stage organ ... surgeons, nurses, pharmacists, laboratory.

  13. Systematic Review of Palliative Care in the Rural Setting.

    Science.gov (United States)

    Bakitas, Marie A; Elk, Ronit; Astin, Meka; Ceronsky, Lyn; Clifford, Kathleen N; Dionne-Odom, J Nicholas; Emanuel, Linda L; Fink, Regina M; Kvale, Elizabeth; Levkoff, Sue; Ritchie, Christine; Smith, Thomas

    2015-10-01

    Many of the world's population live in rural areas. However, access and dissemination of the advances taking place in the field of palliative care to patients living in rural areas have been limited. We searched 2 large databases of the medical literature and found 248 relevant articles; we also identified another 59 articles through networking and a hand search of reference lists. Of those 307 articles, 39 met the inclusion criteria and were grouped into the following subcategories: intervention (n = 4), needs assessment (n = 2), program planning (n = 3), program evaluation (n = 4), education (n = 7), financial (n = 8), and comprehensive/systematic literature reviews (n = 11). We synthesized the current state of rural palliative care research and practice to identify important gaps for future research. Studies were conducted in the United States, Australia, Canada, Africa, Sweden, and India. Two randomized control trials were identified, both of which used telehealth approaches and had positive survival outcomes. One study demonstrated positive patient quality of life and depression outcomes. Research to guide rural palliative care practice is sparse. Approaches to telehealth, community- academic partnerships, and training rural health care professionals show promise, but more research is needed to determine best practices for providing palliative care to patients living in rural settings.

  14. Consultation with specialist palliative care services in palliative sedation: considerations of Dutch physicians.

    Science.gov (United States)

    Koper, Ian; van der Heide, Agnes; Janssens, Rien; Swart, Siebe; Perez, Roberto; Rietjens, Judith

    2014-01-01

    Palliative sedation is considered a normal medical practice by the Royal Dutch Medical Association. Therefore, consultation of an expert is not considered mandatory. The European Association of Palliative Care (EAPC) framework for palliative sedation, however, is more stringent: it considers the use of palliative sedation without consulting an expert as injudicious and insists on input from a multi-professional palliative care team. This study investigates the considerations of Dutch physicians concerning consultation about palliative sedation with specialist palliative care services. Fifty-four physicians were interviewed on their most recent case of palliative sedation. Reasons to consult were a lack of expertise and the view that consultation was generally supportive. Reasons not to consult were sufficient expertise, the view that palliative sedation is a normal medical procedure, time pressure, fear of disagreement with the service and regarding consultation as having little added value. Arguments in favour of mandatory consultation were that many physicians lack expertise and that palliative sedation is an exceptional intervention. Arguments against mandatory consultation were practical obstacles that may preclude fulfilling such an obligation (i.e. lack of time), palliative sedation being a standard medical procedure, corroding a physician's responsibility and deterring physicians from applying palliative sedation. Consultation about palliative sedation with specialist palliative care services is regarded as supportive and helpful when physicians lack expertise. However, Dutch physicians have both practical and theoretical objections against mandatory consultation. Based on the findings in this study, there seems to be little support among Dutch physicians for the EAPC recommendations on obligatory consultation.

  15. Family Caregivers’ Social Representations of Death in a Palliative Care Context

    Directory of Open Access Journals (Sweden)

    Sabrina Lessard

    2016-03-01

    Full Text Available The objective of this study was to consider the social representations of death of family caregivers in a palliative care context. The authors focused on the analysis of 23 interviews with family caregivers who cared for a terminally ill person at home and/or in a specialized palliative care unit, in Québec, Canada. The finding showed that family caregivers had different images that specifically represented death: (a losses as different kinds of “deaths,” (b palliative care as a place to negotiate with death, and (c last times as confirmation of the end. These images highlight the meaning attributed to the body and the position of the dying person in our Western society. Representations of palliative care reveal a kind of paradox, a place of respect and of “gentle death,” and a place where death is almost too omnipresent. They also show the strong beliefs surrounding the use of painkillers at the end of life. Finally, these images refer to end-of-life personal rituals viewed as support for the passage into a new state of being. This study provides a better understanding of the common sense of death for family caregivers in a palliative care context and of the meanings of this emotional subject.

  16. Palliative care and neurology: time for a paradigm shift.

    Science.gov (United States)

    Boersma, Isabel; Miyasaki, Janis; Kutner, Jean; Kluger, Benzi

    2014-08-05

    Palliative care is an approach to the care of patients and families facing progressive and chronic illnesses that focuses on the relief of suffering due to physical symptoms, psychosocial issues, and spiritual distress. As neurologists care for patients with chronic, progressive, life-limiting, and disabling conditions, it is important that they understand and learn to apply the principles of palliative medicine. In this article, we aim to provide a practical starting point in palliative medicine for neurologists by answering the following questions: (1) What is palliative care and what is hospice care? (2) What are the palliative care needs of neurology patients? (3) Do neurology patients have unique palliative care needs? and (4) How can palliative care be integrated into neurology practice? We cover several fundamental palliative care skills relevant to neurologists, including communication of bad news, symptom assessment and management, advance care planning, caregiver assessment, and appropriate referral to hospice and other palliative care services. We conclude by suggesting areas for future educational efforts and research. © 2014 American Academy of Neurology.

  17. Pediatric Palliative Care: A Personal Story

    Medline Plus

    Full Text Available ... The Keeney Family discuss pediatric palliative care - Duration: 12:07. Hospice of the Western Reserve 12,073 views 12:07 Perinatal Palliative Care - The Zimmer Family Story - ...

  18. How to Manage Hospital-Based Palliative Care Teams Without Full-Time Palliative Care Physicians in Designated Cancer Care Hospitals: A Qualitative Study.

    Science.gov (United States)

    Sakashita, Akihiro; Kishino, Megumi; Nakazawa, Yoko; Yotani, Nobuyuki; Yamaguchi, Takashi; Kizawa, Yoshiyuki

    2016-07-01

    To clarify how highly active hospital palliative care teams can provide efficient and effective care regardless of the lack of full-time palliative care physicians. Semistructured focus group interviews were conducted, and content analysis was performed. A total of 7 physicians and 6 nurses participated. We extracted 209 codes from the transcripts and organized them into 3 themes and 21 categories, which were classified as follows: (1) tips for managing palliative care teams efficiently and effectively (7 categories); (2) ways of acquiring specialist palliative care expertise (9 categories); and (3) ways of treating symptoms that are difficult to alleviate (5 categories). The findings of this study can be used as a nautical chart of hospital-based palliative care team (HPCT) without full-time PC physician. Full-time nurses who have high management and coordination abilities play a central role in resource-limited HPCTs. © The Author(s) 2015.

  19. Palliative nursing care for children and adolescents with cancer

    Directory of Open Access Journals (Sweden)

    Gilmer MJ

    2012-06-01

    Full Text Available Terrah L Foster,1,2 Cynthia J Bell,1 Carey F McDonald,2 Joy S Harris,3 Mary Jo Gilmer,1,21Vanderbilt University School of Nursing, Nashville, 2Monroe Carell Jr Children's Hospital at Vanderbilt, Nashville, 3Vanderbilt University, Nashville, TN, USAAbstract: Pediatric palliative care aims to enhance life and decrease suffering of children and adolescents living with life-threatening conditions and their loved ones. Oncology nurses are instrumental in providing palliative care to pediatric oncology populations. This paper describes pediatric palliative care and provides an overview of literature related to the physical, psychological, social, and spiritual domains of palliative nursing care for children and adolescents with cancer. Nurses can provide optimal palliative care by accounting for children's understanding of death, encouraging early initiation of palliative care services, and improving utilization of pediatric palliative care in cancer settings. Specific roles of registered nurses and advanced practice nurses in pediatric palliative care will be addressed. Recommendations for future research are made to further advance the science of pediatric palliative care and decrease suffering for children and teens with cancer.Keywords: pediatric palliative care, pediatric cancer, oncology, child, suffering

  20. Palliative care and spirituality

    Directory of Open Access Journals (Sweden)

    Narayanasamy Aru

    2007-01-01

    Full Text Available Critical junctures in patients′ lives such as chronic illnesses and advanced diseases may leave the persons in a state of imbalance or disharmony of body, mind and spirit. With regard to spirituality and healing, there is a consensus in literature about the influence of spirituality on recovery and the ability to cope with and adjust to the varying and demanding states of health and illness. Empirical evidence suggests that spiritual support may act as an adjunct to the palliative care of those facing advanced diseases and end of life. In this article, the author draws from his empirical work on spirituality and culture to develop a discourse on palliative care and spirituality in both secular and non-secular settings. In doing so, this paper offers some understanding into the concept of spirituality, spiritual needs and spiritual care interventions in palliative care in terms of empirical evidence. Responding to spiritual needs could be challenging, but at the same time it could be rewarding to both healthcare practitioner (HCP and patient in that they may experience spiritual growth and development. Patients may derive great health benefits with improvements in their quality of life, resolutions and meaning and purpose in life. It is hoped that the strategies for spiritual support outlined in this paper serve as practical guidelines to HCPs for development of palliative care in South Asia.

  1. Flemish Palliative-Care Nurses’ Attitudes to Palliative Sedation: Results of a Quantitative Study

    OpenAIRE

    Gielen, Joris; Van den Branden, Stef; van Iersel, Trudie; Broeckaert, Bert

    2012-01-01

    Palliative sedation is an option of last resort to control refractory suffering. In order to better understand palliative-care nurses’ attitudes to palliative sedation, an anonymous questionnaire was sent to all nurses (589) employed in palliative care in Flanders (Belgium). In all, 70.5% of the nurses (n=415) responded. A large majority did not agree that euthanasia is preferable to palliative sedation, were against non-voluntary euthanasia in the case of a deeply and continuously sedated pa...

  2. [New legal regulations for palliative care with implications for politics and practice].

    Science.gov (United States)

    Melching, Heiner

    2017-01-01

    In December 2015 two different laws were adopted. Both are of importance for palliative care. One of the laws criminalizes commercial, "business-like" assisted suicide (§ 217 German Criminal Code), the other one aims to improve hospice and palliative care in Germany. Through the latter far-reaching changes in Social Code Books V and XI, as well as of the Hospital Finance Act have been made. This new Act to Improve Hospice and Palliative Care (HPG) focuses, amongst others, on: (a) Better funding of hospice services, by raising the minimum grant for patients in inpatient hospices paid per day by the health insurance funds by about 28.5%, and for outpatient hospice services by about 18%; (b) further development of general outpatient nursing and medical palliative care, and the networking of different service providers; (c) introduction of an arbitration procedure for service provider agreements to be concluded between the health insurance funds and the teams providing specialized home palliative care (SAPV); (d) the right to individual advice and support by the health insurance funds; (e) care homes may offer their residents advance care planning programs to be funded by the statutory health insurers; (f) palliative care units in hospitals can be remunerated outside the DRG system by per diem rates; (g) separate funding and criteria for multi-professional palliative care services within a hospital.While little concrete impact on hospice and palliative care can be expected following the new § 217 German Criminal Code, the HPG provides a good basis to improve care. For this purpose, however, which complementary and more concrete agreements are made to put the new legal regulations into practice will be crucial.

  3. Palliative care in Pakistan.

    Science.gov (United States)

    Khan, Robyna Irshad

    2017-01-01

    Pakistan is a developing country of South East Asia, with all the incumbent difficulties currently being faced by the region. Insufficient public healthcare facilities, poorly regulated private health sector, low budgetary allocation for health, improper priority setting while allocating limited resources, have resulted essentially in an absence of palliative care from the healthcare scene. Almost 90% of healthcare expenditure is out of the patient's pocket with more than 45% of population living below the poverty line. All these factors have a collective potential to translate into an end-of-life care disaster as a large percentage of population is suffering from chronic debilitating/terminal diseases. So far, such a disaster has not materialised, the reason being a family based culture emphasising the care of the sick and old at home, supported by religious teachings. This culture is not limited to Pakistan but subsists in the entire sub-continent, where looking after the sick/elderly at home is considered to be the duty of the younger generation. With effects of globalisation, more and more older people are living alone and an increasing need for palliative care is being realised. However, there does not seem to be any plan on the part of the public or private sectors to initiate palliative care services. This paper seeks to trace the social and cultural perspectives in Pakistan with regards to accessing palliative care in the context of healthcare facilities available.

  4. Defining palliative care in cystic fibrosis: A Delphi study.

    Science.gov (United States)

    Dellon, E P; Goggin, J; Chen, E; Sabadosa, K; Hempstead, S E; Faro, A; Homa, K

    2018-05-01

    The goal of palliative care is to improve quality of life for people with serious illness. We aimed to create a cystic fibrosis (CF)-specific definition of palliative care. A working group of 36 CF care providers, researchers, palliative care providers, quality improvement experts, individuals with CF, and CF caregivers completed a series of questionnaires to rate the value of each of 22 attributes of palliative care, rank top attributes to construct definitions of palliative care, and then rate proposed definitions. An average of 28 participants completed each of four questionnaires, with consistent distribution of stakeholder roles across questionnaires. Many identified overlaps in routine CF care and palliative care and highlighted the importance of a definition that feels relevant across the lifespan. Modified Delphi methodology was used to define palliative care in CF. The definition will be used as the foundation for development of CF-specific palliative care guidelines. Copyright © 2017 European Cystic Fibrosis Society. Published by Elsevier B.V. All rights reserved.

  5. Pediatric Palliative Care: A Personal Story

    Medline Plus

    Full Text Available ... and Legacy through Pediatric Palliative Care - Duration: 5:39. Northeast Ohio Medical University (NEOMED) 26,045 views 5:39 Little Stars – Paediatric Palliative Care – Charlie's Story - Duration: ...

  6. Radiotherapy in Palliative Cancer Care: Development and Implementation

    International Nuclear Information System (INIS)

    2012-01-01

    It is estimated that in 2008 there were over 12 million new cancer diagnoses and 7 million cancer deaths worldwide. The World Health Organisation (WHO) predicts that cancer rates will increase from 10 million to 24 million in the next 50 years. More than half of cancer cases will be diagnosed in low income nations, where 80% or more of patients will have incurable disease at diagnosis. In situations where most patients are diagnosed with incurable disease or where curative treatment is logistically unavailable, as is the case in many low income countries, the allocation of limited health care resources should reflect a greater emphasis on palliative care. Ironically, access to palliative care is greater in health care systems with well developed infrastructures and facilities for prevention, early detection, and curative treatment of cancer. To provide comprehensive cancer care, a multidisciplinary approach is needed. This maximizes the available treatments and interventions, whilst ensuring a cost effective and ethically sound approach to the treatment of patients at each stage of the disease. Barriers to palliative care may result from its low prioritization in health care policy and education. The WHO expert committee on cancer pain and palliative care report of 1990 called for the integration of efforts directed at maintaining patient quality of life through all stages of cancer treatment. As a result supportive interventions aimed at improving quality of life are needed for patients undergoing both curative and palliative cancer treatment. The International Atomic Energy Agency is currently collaborating with the Open Society Institute to develop palliative care programmes in Eastern Europe, Africa and India, as well as supporting programmes in other regions of the world, through the International Palliative Care Initiative. OSI partners with the IAEA's Programme of Action for Cancer Therapy, the World Health Organization, the International Agency for Research

  7. Providing pediatric palliative care: PACT in action.

    Science.gov (United States)

    Duncan, Janet; Spengler, Emily; Wolfe, Joanne

    2007-01-01

    High-quality pediatric palliative care should be an expected standard in the United States, especially since the publication of the numerous position statements such as "Precepts of Palliative Care for Children and Adolescents and Their Families," a joint statement created by the Association of Pediatric Oncology Nurses, the National Association of Neonatal Nurses, and the Society of Pediatric Nurses. Although many barriers still exist, dedicated individuals and teams strive to promote models of excellence and improve care for children with life-threatening conditions and their families. The Pediatric Advanced Care Team, a joint project of Dana-Farber Cancer Institute and Children's Hospital, Boston, is one such interdisciplinary pediatric palliative care consultation service. Founded in 1997, we have grown and learned from formal study and our extensive clinical work with families, children, and our colleagues. This article describes our journey as an interdisciplinary team forging a new service within two renowned medical institutions in which historically the primary emphasis of care has been on cure and innovation. Although these values remain, our work has resulted in an increased acceptance of balancing treatment of the underlying disease or condition along with treatment of the physical, psychosocial, and spiritual needs of the child and family through life or death. One of our goals is to help promote a balance of hope for cure with hope for comfort, dignity, and integrity for every child and family.

  8. Policy analysis: palliative care in Ireland.

    LENUS (Irish Health Repository)

    Larkin, P

    2014-03-01

    Palliative care for patients with advanced illness is a subject of growing importance in health services, policy and research. In 2001 Ireland became one of the first nations to publish a dedicated national palliative care policy. This paper uses the \\'policy analysis triangle\\' as a framework to examine what the policy entailed, where the key ideas originated, why the policy process was activated, who were the key actors, and what were the main consequences. Although palliative care provision expanded following publication, priorities that were unaddressed or not fully embraced on the national policy agenda are identified. The factors underlying areas of non-fulfilment of policy are then discussed. In particular, the analysis highlights that policy initiatives in a relatively new field of healthcare face a trade-off between ambition and feasibility. Key policy goals could not be realised given the large resource commitments required; the competition for resources from other, better-established healthcare sectors; and challenges in expanding workforce and capacity. Additionally, the inherently cross-sectoral nature of palliative care complicated the co-ordination of support for the policy. Policy initiatives in emerging fields such as palliative care should address carefully feasibility and support in their conception and implementation.

  9. Specialist palliative care nurses' management of the needs of patients with depression.

    Science.gov (United States)

    Hayes, Jessica Elizabeth; Hart, Bethne; Phillips, Jane

    2017-06-02

    Depression is an important condition to consider if we are to optimise the care outcomes for patients with palliative care needs. Depression has a high incidence in palliative patients, with up to 15% diagnosed with major depression and 37% expressing some form of depressive symptoms ( O'Connor et al, 2010 ). The challenge is to ensure that palliative care patients with depression are identified in a timely manner and that their depression is effectively managed. To examine how Australian specialist inpatient palliative care nurses perceive, assess and respond to depression in a patient case study. This descriptive pilot study is a replication of a United States study by Little et al (2005) , exploring contemporary Australian specialist palliative care nurses' screening, assessment and management of depression in people with a progressive life-limiting illness. A survey titled 'Specialist palliative care nurses managing patients with complex care needs' questioned the nursing assessment, knowledge and clinical care priorities related to a case vignette of a patient demonstrating signs of depression. A total of 33 nurses completed this survey. Less than half (39.4%) of the participants identified depression as a major issue arising from the case vignette. Depression screening tools were not widely known. Functionality assessments measuring activities of daily living were the most recognised and widely used tools by participants. This small sample pilot study demonstrated that specialist palliative care nurses are still not confident in their screening and responding to a patient with depression. The available evidenced based depression screening tools were unfamiliar to these nurses and not widely used which can result in depression remaining undetected and undermanaged. The connections between physical health and mental health need stronger recognition and response within nursing care of palliative patients.

  10. The African Palliative Care Association (APCA Atlas of Palliative Care Development in Africa: a comparative analysis

    Directory of Open Access Journals (Sweden)

    John Y Rhee

    2018-03-01

    Funding: Arnhold Institute of Global Health at the Icahn School of Medicine at Mount Sinai, the African Palliative Care Association, the International Association for Hospice and Palliative Care, and the Institute for Culture and Society at the University of Navarra.

  11. PROGRAM OF PALLIATIVE CANCER CARE – OUR EXPERIENCE

    Directory of Open Access Journals (Sweden)

    Iva Slánská

    2013-01-01

    Full Text Available Introduction: Annually more than 27,000 persons die of cancer in the Czech Republic and the overall incidence of malignancies is still increasing. These data shows the need for affordable and good follow-up care especially for patients without any cancer treatment due to irreversible progression of tumor. Currently the outpatient palliative cancer care gets more into the forefront. Prerequisite for a well working outpatient palliative care is cooperation with general practitioners and home health care agencies. The purpose of the so called program of palliative cancer care is to guide a patient in palliative cancer care and to improve the cooperation among health care providers. Methods: During the period from January 2008 to October 2010 we evaluated in patient without any oncology treatment due to irreversible progression of tumor. Results: In palliative outpatient clinic we treated 446 patients, 119 of them received home care services with average length of 27.8 days. 77 patients died at home, 51 in health facilities and 41 in inpatient hospice care. Conclusion: We present pilot study focusing on outpatient palliative cancer care which shows the real benefit from early indication of palliative cancer care. This type of care allows patients to stay as long as possible at home among their close relatives.

  12. Palliative Care in Heart Failure

    Directory of Open Access Journals (Sweden)

    Hatice Mert

    2012-04-01

    Full Text Available Heart failure is an important health problem since its incidence and prevalence is increasing year by year. Since symptom burden and mortality are high in heart failure, supportive and palliative care should be provided. However, very few patients are referred to palliative care services. In comparison with cancer patients, it is difficult to identify end of life care for patients with heart failure, because these patients are hospitalized when the signs of acute decompensation appear, and their symptoms decrease and functional status improve before they are discharged. Therefore, palliative care, which is a holistic approach aiming to improve patients’ quality of life, to detect and treat the attacks of the disease before they become severe, and to deal with patients’ physical, psychological, social, and mental health altogether during their care, should be integrated into heart failure patients’ care. [TAF Prev Med Bull 2012; 11(2.000: 217-222

  13. Forensic nursing and the palliative approach to care: an empirical nursing ethics analysis.

    Science.gov (United States)

    Wright, David Kenneth; Vanderspank-Wright, Brandi; Holmes, Dave; Skinner, Elise

    2017-08-02

    A movement is underway to promote a palliative approach to care in all contexts where people age and live with life-limiting conditions, including psychiatric settings. Forensic psychiatry nursing-a subfield of mental health nursing- focuses on individuals who are in conflict with the criminal justice system. We know little about the values of nurses working in forensic psychiatry, and how these values might influence a palliative approach to care for frail and aging patients. Interviews with four nurses working on one of two forensic units of a university-affiliated mental health hospital in an urban area of eastern Canada. Three specific values were found to guide forensic nurses in their care of aging patients that are commensurate with a palliative approach: hope, inclusivity, and quality of life. When we started this project, we wondered whether the culture of forensic nursing practice was antithetical to the values of a palliative approach. Instead, we found several parallels between forensic nurses' moral identities and palliative philosophy. These findings have implications for how we think about the palliative approach in contexts not typically associated with palliative care, but in which patients will increasingly age and die.

  14. Culturally Relevant Palliative and End-of-Life Care for U.S. Indigenous Populations: An Integrative Review.

    Science.gov (United States)

    Isaacson, Mary J; Lynch, Anna R

    2018-03-01

    American Indians/Alaska Natives (AIs/ANs) have higher rates of chronic illness and lack access to palliative/end-of-life (EOL) care. This integrative review ascertained the state of the science on culturally acceptable palliative/EOL care options for Indigenous persons in the United States. Databases searched: CINAHL, PubMed/MEDLINE, SocINDEX, PsycINFO, PsycARTICLES, ERIC, Health Source: Nursing/Academic Edition, and EBSCO Discovery Service 1880s-Present. Key terms used: palliative care, EOL care, and AI/AN. peer-reviewed articles published in English. Findings/Results: Twenty-nine articles were identified, 17 remained that described culturally specific palliative/EOL care for AIs/ANs. Synthesis revealed four themes: Communication, Cultural Awareness/Sensitivity, Community Guidance for Palliative/EOL Care Programs, Barriers and two subthemes: Trust/Respect and Mistrust. Limitations are lack of research funding, geographic isolation, and stringent government requirements. Palliative/EOL care must draw on a different set of skills that honor care beyond cure provided in a culturally sensitive manner.

  15. Objective and subjective nutritional assessment of patients with cancer in palliative care.

    Science.gov (United States)

    Kwang, Ang Yee; Kandiah, Mirnalini

    2010-03-01

    This study aimed to evaluate the nutritional status of patients with cancer in palliative care and to examine the interrelationship between objective and subjective nutritional assessment measures. Patients' nutritional status in a palliative care unit of a Malaysian government hospital and a hospice facility were assessed using anthropometric measurements, weight loss at 1/6 months, and the scored patient-generated subjective global assessment (PG-SGA). Moderate-to-severe malnutrition was observed in a range from 31% to 69% using both measurements. Common nutritional impact symptoms were pain, xerostomia, and anorexia. Patient-generated subjective global assessment scores were significantly correlated with anthropometric measurements (P nutritional status assessment of patients with cancer in palliative care.

  16. Commissioning of specialist palliative care services in England.

    Science.gov (United States)

    Lancaster, Harriet; Finlay, Ilora; Downman, Maxwell; Dumas, James

    2018-03-01

    Some failures in end-of-life care have been attributed to inconsistent provision of palliative care across England. We aimed to explore the variation in commissioning of services by Clinical Commissioning Groups (CCGs) using a data collection exercise. We sent a Freedom of Information request in the form of an open questionnaire to all 209 CCGs in England to assess their commissioning of palliative and end-of-life care services, mainly focused on the provision of specialist palliative care services. 29 CCGs provided information about the number of patients with some form of palliative care needs in their population. For specialist palliative care services, CCGs allocated budgets ranging from £51.83 to £2329.19 per patient per annum. 163 CCGs (77.90%) currently commission 7-day admission to their specialist palliative care beds. 82.84% of CCGs commission 7-day specialist palliative care services in patients' own homes and out-of-hours services rely heavily on hospice provision. 64 CCGs (31.37%) commission pain control teams, the majority of whom only operate in regular working hours. 68.14% of CCGs reported commissioning palliative care education of any sort for healthcare professionals and 44.85% of CCGs had no plans to update or review their palliative care services. The most important finding from this exercise is that the information CCGs hold about their population and services is not standardised. However, information based on data that are more objective, for example, population and total budget for palliative care, demonstrate wide variations in commissioning. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.

  17. Strategies for Introducing Outpatient Specialty Palliative Care in Gynecologic Oncology.

    Science.gov (United States)

    Hay, Casey M; Lefkowits, Carolyn; Crowley-Matoka, Megan; Bakitas, Marie A; Clark, Leslie H; Duska, Linda R; Urban, Renata R; Creasy, Stephanie L; Schenker, Yael

    2017-09-01

    Concern that patients will react negatively to the idea of palliative care is cited as a barrier to timely referral. Strategies to successfully introduce specialty palliative care to patients have not been well described. We sought to understand how gynecologic oncologists introduce outpatient specialty palliative care. We conducted a national qualitative interview study at six geographically diverse academic cancer centers with well-established palliative care clinics between September 2015 and March 2016. Thirty-four gynecologic oncologists participated in semistructured telephone interviews focusing on attitudes, experiences, and practices related to outpatient palliative care. A multidisciplinary team analyzed interview transcripts using constant comparative methods to inductively develop and refine a coding framework. This analysis focuses on practices for introducing palliative care. Mean participant age was 47 years (standard deviation, 10 years). Mean interview length was 25 minutes (standard deviation, 7 minutes). Gynecologic oncologists described the following three main strategies for introducing outpatient specialty palliative care: focus initial palliative care referral on symptom management to dissociate palliative care from end-of-life care and facilitate early relationship building with palliative care clinicians; use a strong physician-patient relationship and patient trust to increase acceptance of referral; and explain and normalize palliative care referral to address negative associations and decrease patient fear of abandonment. These strategies aim to decrease negative patient associations and encourage acceptance of early referral to palliative care specialists. Gynecologic oncologists have developed strategies for introducing palliative care services to alleviate patient concerns. These strategies provide groundwork for developing system-wide best practice approaches to the presentation of palliative care referral.

  18. Hope in palliative care: A longitudinal qualitative study

    NARCIS (Netherlands)

    Olsman, E.

    2015-01-01

    This thesis describes hope in palliative care patients, their family members and their healthcare professionals. An interpretative synthesis of the literature (chapter 2) and a metaphor analysis of semi-structured interviews with palliative care professionals (chapter 3) highlight palliative care

  19. Pediatric Palliative Care: A Personal Story

    Medline Plus

    Full Text Available ... report inappropriate content. Sign in Transcript Add translations 4,609 views Like this video? Sign in to ... Palliative Care - Duration: 3:29. American Cancer Society 4,363 views 3:29 Pediatric Palliative Care and ...

  20. Pediatric Palliative Care: A Personal Story

    Medline Plus

    Full Text Available ... it free Find out why Close Pediatric Palliative Care: A Personal Story NINRnews Loading... Unsubscribe from NINRnews? ... and her family. The story demonstrates how palliative care can positively influence a patient's and family's experience ...

  1. Palliative Care Use Among Patients With Solid Cancer Tumors: A National Cancer Data Base Study.

    Science.gov (United States)

    Osagiede, Osayande; Colibaseanu, Dorin T; Spaulding, Aaron C; Frank, Ryan D; Merchea, Amit; Kelley, Scott R; Uitti, Ryan J; Ailawadhi, Sikander

    2018-01-01

    Palliative care has been increasingly recognized as an important part of cancer care but remains underutilized in patients with solid cancers. There is a current gap in knowledge regarding why palliative care is underutilized nationwide. To identify the factors associated with palliative care use among deceased patients with solid cancer tumors. Using the 2016 National Cancer Data Base, we identified deceased patients (2004-2013) with breast, colon, lung, melanoma, and prostate cancer. Data were described as percentages. Associations between palliative care use and patient, facility, and geographic characteristics were evaluated through multivariate logistic regression. A total of 1 840 111 patients were analyzed; 9.6% received palliative care. Palliative care use was higher in the following patient groups: survival >24 months (17% vs 2%), male (54% vs 46%), higher Charlson-Deyo comorbidity score (16% vs 8%), treatment at designated cancer programs (74% vs 71%), lung cancer (76% vs 28%), higher grade cancer (53% vs 24%), and stage IV cancer (59% vs 13%). Patients who lived in communities with a greater percentage of high school degrees had higher odds of receiving palliative care; Central and Pacific regions of the United States had lower odds of palliative care use than the East Coast. Patients with colon, melanoma, or prostate cancer had lower odds of palliative care than patients with breast cancer, whereas those with lung cancer had higher odds. Palliative care use in solid cancer tumors is variable, with a preference for patients with lung cancer, younger age, known insurance status, and higher educational level.

  2. Palliative care in Africa: a global challenge.

    Science.gov (United States)

    Ntizimira, Christian R; Nkurikiyimfura, Jean Luc; Mukeshimana, Olive; Ngizwenayo, Scholastique; Mukasahaha, Diane; Clancy, Clare

    2014-01-01

    We are often asked what challenges Rwanda has faced in the development of palliative care and its integration into the healthcare system. In the past, patients have been barred from accessing strong analgesics to treat moderate to severe pain, but thanks to health initiatives, this is slowly changing. Rwanda is an example of a country where only a few years ago, access to morphine was almost impossible. Albert Einsten said 'in the middle of difficulty lies opportunity' and this sentiment could not be more relevant to the development of palliative care programmes. Through advocacy, policy, and staunch commitment to compassion, Rwandan healthcare workers are proving how palliative care can be successfully integrated into a healthcare system. As a global healthcare community, we should be asking what opportunities exist to do this across the African continent. Champions of palliative care have a chance to forge lasting collaborations between international experts and African healthcare workers. This global network could not only advocate for palliative care programmes but it would also help to create a culture where palliative care is viewed as a necessary part of all healthcare systems.

  3. Distress, Stress and Solidarity in Palliative Care.

    Science.gov (United States)

    deMontigny, Johanne

    1993-01-01

    Notes that role of psychologist on palliative care unit is to be there for terminally ill, their friends, and their families, both during the dying and the bereavement and for the caregiver team. Focuses on work of decoding ordinary words which for many patients hide painful past. Stresses necessity to remain open to unexpected. (Author/NB)

  4. Healing ministry and palliative care in Christianity.

    Science.gov (United States)

    Jayard, S Stephen; Irudayadason, Nishant A; Davis, J Charles

    2017-01-01

    Death is inevitable, but that does not mean it can be planned or imposed. It is an ethical imperative that we attend to the unbearable pain and suffering of patients with incurable and terminal illnesses. This is where palliative care plays a vital role. Palliative care has been growing faster in the world of medicine since its emergence as a specialty in the last decade. Palliative care helps to reduce physical pain while affirming the aspect of human suffering and dying as a normal process. The goal of palliative care is to improve the quality of life both of the patient and the family. Palliative care resonates with the healing ministry of Christianity that affirms the sanctity and dignity of human life from the moment of conception to natural death. Christianity is convinced that patients at the very end of their lives, with all their ailments and agonies, are still people who have been created in the image and likeness of God. The human person is always precious, even when marked by age and sickness. This is one of the basic convictions that motivate Christians to take care of the sick and the dying. Palliative care is a great opportunity for Christians to manifest God's unfailing love for the terminally ill and the dying.

  5. Cooperating with a palliative home-care team

    DEFF Research Database (Denmark)

    Goldschmidt, Dorthe; Groenvold, Mogens; Johnsen, Anna Thit

    2005-01-01

    BACKGROUND: Palliative home-care teams often cooperate with general practitioners (GPs) and district nurses. Our aim was to evaluate a palliative home-care team from the viewpoint of GPs and district nurses. METHODS: GPs and district nurses received questionnaires at the start of home-care and one...... month later. Questions focussed on benefits to patients, training issues for professionals and cooperation between the home-care team and the GP/ district nurse. A combination of closed- and open-ended questions was used. RESULTS: Response rate was 84% (467/553). Benefits to patients were experienced...... by 91 %, mainly due to improvement in symptom management, 'security', and accessibility of specialists in palliative care. After one month, 57% of the participants reported to have learnt aspects of palliative care, primarily symptom control, and 89% of them found cooperation satisfactory...

  6. Palliative and end-of-life care in South Dakota.

    Science.gov (United States)

    Minton, Mary E; Kerkvliet, Jennifer L; Mitchell, Amanda; Fahrenwald, Nancy L

    2014-05-01

    Geographical disparities play a significant role in palliative and end-of-life care access. This study assessed availability of palliative and end of life (hospice) care in South Dakota. Grounded in a conceptual model of advance care planning, this assessment explored whether South Dakota health care facilities had contact persons for palliative care, hospice services, and advance directives; health care providers with specialized training in palliative and hospice care; and a process for advance directives and advance care planning. Trained research assistants conducted a brief telephone survey. Of 668 health care eligible facilities, 455 completed the survey for a response rate of 68 percent (455 out of 668). Over one-half of facilities had no specific contact person for palliative care, hospice services and advance directives. Nursing homes reported the highest percentage of contacts for palliative care, hospice services and advance directives. Despite a lack of a specific contact person, nearly 75 percent of facilities reported having a process in place for addressing advance directives with patients; slightly over one-half (53 percent) reported having a process in place for advance care planning. Of participating facilities, 80 percent had no staff members with palliative care training, and 73 percent identified lack of staff members with end-of-life care training. Palliative care training was most commonly reported among hospice/home health facilities (45 percent). The results of this study demonstrate a clear need for a health care and allied health care workforce with specialized training in palliative and end-of-life care.

  7. Palliative sedation in end-of-life care.

    Science.gov (United States)

    Maltoni, Marco; Scarpi, Emanuela; Nanni, Oriana

    2013-07-01

    The aim of this review was to present and comment on recent data published on palliative sedation in palliative and end-of-life care. Palliative sedation is a medical procedure used to deal with the refractory symptoms occurring in the advanced stages of cancer. It has clinical, nursing, relational and ethical implications, making it a highly sensitive issue. Over the last 12 months, a number of authors have published interesting new findings on different areas of palliative sedation, that is prevalence, indications, monitoring, duration and choice of drugs. In particular, a clear definition of palliative sedation and of its more pronounced form, deep continuous sedation (DCS), has emerged. It has been confirmed that, when performed in the correct way and with the right aims, palliative sedation does not have a detrimental impact on survival. Recent findings confirm that palliative sedation is an integral part of a medical palliative care approach and is needed in certain clinical situations. It is a legitimate clinical practice from any ethical point of view. While oncologists should have a basic knowledge of the procedure, its in depth study is a core competency for palliative care physicians.

  8. Can elearning be used to teach palliative care? - medical students' acceptance, knowledge, and self-estimation of competence in palliative care after elearning.

    Science.gov (United States)

    Schulz-Quach, Christian; Wenzel-Meyburg, Ursula; Fetz, Katharina

    2018-04-27

    Undergraduate palliative care education (UPCE) was mandatorily incorporated in medical education in Germany in 2009. Implementation of the new cross-sectional examination subject of palliative care (QB13) continues to be a major challenge for medical schools. It is clear that there is a need among students for more UPCE. On the other hand, there is a lack of teaching resources and patient availabilities for the practical lessons. Digital media and elearning might be one solution to this problem. The primary objective of this study is to evaluate the elearning course Palliative Care Basics, with regard to students' acceptance of this teaching method and their performance in the written examination on the topic of palliative care. In addition, students' self-estimation in competence in palliative care was assessed. To investigate students' acceptance of the elearning course Palliative Care Basics, we conducted a cross-sectional study that is appropriate for proof-of-concept evaluation. The sample consisted of three cohorts of medical students of Heinrich Heine University Dusseldorf (N = 670). The acceptance of the elearning approach was investigated by means of the standard evaluation of Heinrich Heine University. The effect of elearning on students' self-estimation in palliative care competencies was measured by means of the German revised version of the Program in Palliative Care Education and Practice Questionnaire (PCEP-GR). The elearning course Palliative Care Basics was well-received by medical students. The data yielded no significant effects of the elearning course on students' self-estimation in palliative care competencies. There was a trend of the elearning course having a positive effect on the mark in written exam. Elearning is a promising approach in UPCE and well-accepted by medical students. It may be able to increase students' knowledge in palliative care. However, it is likely that there are other approaches needed to change students' self

  9. PALLIATIVE CARE IN GERIATRICS: CURRENT ISSUES AND PROSPECTS

    Directory of Open Access Journals (Sweden)

    I. P. Рonomareva

    2016-01-01

    Full Text Available The purpose of the study is to identify the main problems and prospects of development of palliative care in geriatrics at the present stage. Method of research was to analyze the printed and electronic databases that meet the stated issues. The results of the study highlight the problems of the development of palliative care in geriatric practice: the lack of a developed procedure of rendering palliative care and adequate elderly patient selection criteria, the lack of trained professional staff. The main prospects-association of palliative practices and concepts of modern geriatrics required specialized geriatric assessment and the provision of clinical, medical, social and socio-psychological geriatric syndromes. While promising option for the development of palliative care geriatrics is the integration into the existing health care system, acceptance of the fact that it is a part of the specialized geriatric care. This requires the involvement and training of not only specialists with medical education, but also persons without medical training from among social workers and volunteers working in palliative care. Therefore, the obtained data allowed to conclude that topical is the development of palliative care in geriatrics, taking into account not only clinical but medico-social, socio-psychological features.

  10. Is Palliative Care Right for You?

    Science.gov (United States)

    ... to you, need help with: Coping with the stress of a serious illness Emotional support Spiritual or religious support Talking with your family about your illness and what is important to ... What Is Palliative Care Definition Pediatric Palliative Care Disease Types FAQ Handout for ...

  11. Prevalence of hyponatremia in palliative care patients

    Directory of Open Access Journals (Sweden)

    Shoba Nair

    2016-01-01

    Conclusions: Prevalence of hyponatremia is significant in palliative care patients. A prospective study looking at the causes and clinical outcomes associated with hyponatremia in palliative care patients is needed.

  12. Facilitating advance care planning in community palliative care: conversation starters across the client journey.

    Science.gov (United States)

    Blackford, Jeanine; Street, Annette F

    2013-03-01

    This paper describes the development of a tool for palliative care nurses to initiate and facilitate advance care planning (ACP) conversations in community palliative care practice. Seven community palliative care services located across Australia participated in a multi-site action research project. Data included participant observation, individual and focus group interviews with palliative care health professionals, and medical record audit. A directed content analysis used a pre-established palliative care practice framework of referral, admission, ongoing management, and terminal/discharge care. From this framework a Conversation Starter Tool for ACP was developed. The Tool was then used in orientation and continuing nurse education programmes. It provided palliative care nurses the opportunity to introduce and progress ACP conversations.

  13. Improving aspects of palliative care for children

    NARCIS (Netherlands)

    Jagt, C.T.

    2017-01-01

    This thesis is about improving aspects of palliative care for children, and covers three different areas of quality of care. First of all, palliative care should be anticipating. To be able to deliver this anticipating care, caregivers should know what to expect. The first two chapters of the thesis

  14. Palliative care for homeless people: a systematic review of the concerns, care needs and preferences, and the barriers and facilitators for providing palliative care.

    Science.gov (United States)

    Klop, Hanna T; de Veer, Anke J E; van Dongen, Sophie I; Francke, Anneke L; Rietjens, Judith A C; Onwuteaka-Philipsen, Bregje D

    2018-04-24

    Homeless people often suffer from complex and chronic comorbidities, have high rates of morbidity and die at much younger ages than the general population. Due to a complex combination of physical, psychosocial and addiction problems at the end of life, they often have limited access to palliative care. Both the homeless and healthcare providers experience a lot of barriers. Therefore, providing palliative care that fits the needs and concerns of the homeless is a challenge to healthcare providers. This systematic review aims to summarize evidence about the concerns, palliative care needs and preferences of homeless people, as well as barriers and facilitators for delivering high quality palliative care. PubMed, Embase, PsycINFO, CINAHL and Web of Science were searched up to 10 May 2016. Included were studies about homeless people with a short life expectancy, their palliative care needs and the palliative care provided, that were conducted in Western countries. Data were independently extracted by two researchers using a predefined extraction form. Quality was assessed using a Critical Appraisal instrument. The systematic literature review was based on the PRISMA statement. Twenty-seven publications from 23 different studies met the inclusion criteria; 15 studies were qualitative and eight were quantitative. Concerns of the homeless often related to end-of-life care not being a priority, drug dependence hindering adequate care, limited insight into their condition and little support from family and relatives. Barriers and facilitators often concerned the attitude of healthcare professionals towards homeless people. A respectful approach and respect for dignity proved to be important in good quality palliative care. A patient-centred, flexible and low-threshold approach embodying awareness of the concerns of homeless people is needed so that appropriate palliative care can be provided timely. Training, education and experience of professionals can help to

  15. An instrument to measure nurses' knowledge in palliative care: Validation of the Spanish version of Palliative Care Quiz for Nurses.

    Directory of Open Access Journals (Sweden)

    Elena Chover-Sierra

    Full Text Available Palliative care is nowadays essential in nursing care, due to the increasing number of patients who require attention in final stages of their life. Nurses need to acquire specific knowledge and abilities to provide quality palliative care. Palliative Care Quiz for Nurses is a questionnaire that evaluates their basic knowledge about palliative care. The Palliative Care Quiz for Nurses (PCQN is useful to evaluate basic knowledge about palliative care, but its adaptation into the Spanish language and the analysis of its effectiveness and utility for Spanish culture is lacking.To report the adaptation into the Spanish language and the psychometric analysis of the Palliative Care Quiz for Nurses.The Palliative Care Quiz for Nurses-Spanish Version (PCQN-SV was obtained from a process including translation, back-translation, comparison with versions in other languages, revision by experts, and pilot study. Content validity and reliability of questionnaire were analyzed. Difficulty and discrimination indexes of each item were also calculated according to Item Response Theory (IRT.Adequate internal consistency was found (S-CVI = 0.83; Cronbach's alpha coefficient of 0.67 and KR-20 test result of 0,72 reflected the reliability of PCQN-SV. The questionnaire had a global difficulty index of 0,55, with six items which could be considered as difficult or very difficult, and five items with could be considered easy or very easy. The discrimination indexes of the 20 items, show us that eight items are good or very good while six items are bad to discriminate between good and bad respondents.Although in shows internal consistency, reliability and difficulty indexes similar to those obtained by versions of PCQN in other languages, a reformulation of the items with lowest content validity or discrimination indexes and those showing difficulties with their comprehension is an aspect to take into account in order to improve the PCQN-SV.The PCQN-SV is a useful

  16. [eLearning service for home palliative care].

    Science.gov (United States)

    Sakuyama, Toshikazu; Komatsu, Kazuhiro; Inoue, Daisuke; Fukushima, Osamu

    2008-12-01

    In order to support the home palliative care learning, we made the eLearning service for home palliative care (beta version) and tried to teach the palliative care to the medical staffs in the community. The various learners (such as nurses, pharmacists and the like) accessed to the online learning and used this eLearning service. After the learners finished eLearning for home palliative care, some questionnaires were distributed to the learners and analyzed by us. The analysis of questionnaires revealed that almost all were satisfied with our eLearning services. Especially the learners were not only interested in using the skills of opioids and the management of pain control, but they had a good cognition for the usage of opioids.

  17. Music therapy for palliative care: A realist review.

    Science.gov (United States)

    McConnell, Tracey; Porter, Sam

    2017-08-01

    Music therapy has experienced a rising demand as an adjunct therapy for symptom management among palliative care patients. We conducted a realist review of the literature to develop a greater understanding of how music therapy might benefit palliative care patients and the contextual mechanisms that promote or inhibit its successful implementation. We searched electronic databases (CINAHL, Embase, Medline, and PsychINFO) for literature containing information on music therapy for palliative care. In keeping with the realist approach, we examined all relevant literature to develop theories that could explain how music therapy works. A total of 51 articles were included in the review. Music therapy was found to have a therapeutic effect on the physical, psychological, emotional, and spiritual suffering of palliative care patients. We also identified program mechanisms that help explain music therapy's therapeutic effects, along with facilitating contexts for implementation. Music therapy may be an effective nonpharmacological approach to managing distressing symptoms in palliative care patients. The findings also suggest that group music therapy may be a cost-efficient and effective way to support staff caring for palliative care patients. We encourage others to continue developing the evidence base in order to expand our understanding of how music therapy works, with the aim of informing and improving the provision of music therapy for palliative care patients.

  18. Integration of palliative care in the context of rapid response: a report from the Improving Palliative Care in the ICU advisory board.

    Science.gov (United States)

    Nelson, Judith E; Mathews, Kusum S; Weissman, David E; Brasel, Karen J; Campbell, Margaret; Curtis, J Randall; Frontera, Jennifer A; Gabriel, Michelle; Hays, Ross M; Mosenthal, Anne C; Mulkerin, Colleen; Puntillo, Kathleen A; Ray, Daniel E; Weiss, Stefanie P; Bassett, Rick; Boss, Renee D; Lustbader, Dana R

    2015-02-01

    Rapid response teams (RRTs) can effectively foster discussions about appropriate goals of care and address other emergent palliative care needs of patients and families facing life-threatening illness on hospital wards. In this article, The Improving Palliative Care in the ICU (IPAL-ICU) Project brings together interdisciplinary expertise and existing data to address the following: special challenges for providing palliative care in the rapid response setting, knowledge and skills needed by RRTs for delivery of high-quality palliative care, and strategies for improving the integration of palliative care with rapid response critical care. We discuss key components of communication with patients, families, and primary clinicians to develop a goal-directed treatment approach during a rapid response event. We also highlight the need for RRT expertise to initiate symptom relief. Strategies including specific clinician training and system initiatives are then recommended for RRT care improvement. We conclude by suggesting that as evaluation of their impact on other outcomes continues, performance by RRTs in meeting palliative care needs of patients and families should also be measured and improved.

  19. Improving communication on hope in palliative care. A qualitative study of palliative care professionals' metaphors of hope: grip, source, tune, and vision

    NARCIS (Netherlands)

    Olsman, Erik; Duggleby, Wendy; Nekolaichuk, Cheryl; Willems, Dick; Gagnon, Judith; Kruizinga, Renske; Leget, Carlo

    2014-01-01

    Hope is important in palliative care. However, palliative care professionals' perspectives on hope are not well understood. Metaphors of hope are a way of better understanding these perspectives. To describe palliative care professionals' perspectives on hope by examining the hope metaphors they

  20. Palliative care nurses' views on euthanasia.

    Science.gov (United States)

    Verpoort, Charlotte; Gastmans, Chris; Dierckx de Casterlé, Bernadette

    2004-09-01

    In debates on euthanasia legalization in Belgium, the voices of nurses were scarcely heard. Yet studies have shown that nurses are involved in the caring process surrounding euthanasia. Consequently, they are in a position to offer valuable ideas about this problem. For this reason, the views of these nurses are important because of their palliative expertise and their daily confrontation with dying patients. The aim of this paper is to report a study of the views of palliative care nurses about euthanasia. A grounded theory approach was chosen, and interviews were carried out with a convenience sample of 12 palliative care nurses in Flanders (Belgium). The data were collected between December 2001 and April 2002. The majority of the nurses were not a priori for or against euthanasia, and their views were largely dependent on the situation. What counted was the degree of suffering and available palliative options. Depending on the situation, we noted both resistance and acceptance towards euthanasia. The underlying arguments for resistance included respect for life and belief in the capabilities of palliative care; arguments underlying acceptance included the quality of life and respect for patient autonomy. The nurses commented that working in palliative care had a considerable influence on one's opinion about euthanasia. In light of the worldwide debate on euthanasia, it is essential to know how nurses, who are confronted with terminally ill patients every day, think about it. Knowledge of these views can also contribute to a realistic and qualified view on euthanasia itself. This can be enlightening to the personal views of caregivers working in a diverse range of care settings.

  1. Demoralization Scale in Spanish-Speaking Palliative Care Patients.

    Science.gov (United States)

    Rudilla, David; Galiana, Laura; Oliver, Amparo; Barreto, Pilar

    2016-04-01

    Among the approaches to the demoralization syndrome, the one proposed by Kissane et al. is prevalent in the literature. These authors developed the Demoralization Scale (DS) to assess emotional distress, conceived as demoralization. To present the Spanish adaptation of the Demoralization Scale in palliative care patients, with a new and more comprehensive approach to its factorial structure. A cross-sectional study was carried out in 226 Spanish palliative care patients in three different settings: hospital, home care unit, and continued care unit. Outcome measures included the DS and the Hospital Anxiety and Depression Scale. Analyses comprised confirmatory factor analyses to test the original, German, and Irish structure of the DS, exploratory structural equation modeling (ESEM), estimations of internal consistency, and multivariate analyses of variance for criterion-related validity. The confirmatory factor analyses showed inappropriate fit for the previous structures when studied in the Spanish version of the DS. With ESEM, the best fitting structure was the five-factor solution, without item 18. Reliability results offered good estimations of internal consistency for all the dimensions except for sense of failure. Cronbach alpha coefficients were appropriate for the dimensions of loss of meaning (0.86), helplessness (0.79), disheartenment (0.88), and dysphoria (0.80), but low reliability was found for sense of failure (0.62). Convergent and discriminant validity showed positive correlations between demoralization, anxiety, and depression. Patients with higher levels of anxiety had higher scores on every dimension of demoralization, and those with higher levels of depression had higher scores on loss of meaning, disheartenment, and sense of failure, but not on dysphoria or helplessness. The Spanish adaptation of the DS has shown appropriate psychometric properties. It has been useful to differentiate between depression and the demoralization syndrome, pointing

  2. Differences between early and late involvement of palliative home care in oncology care: A focus group study with palliative home care teams.

    Science.gov (United States)

    Dhollander, Naomi; Deliens, Luc; Van Belle, Simon; De Vleminck, Aline; Pardon, Koen

    2018-05-01

    To date, no randomised controlled trials on the integration of specialised palliative home care into oncology care have been identified. Information on whether existing models of integrated care are applicable to the home care system and how working procedures and skills of the palliative care teams might require adaptation is missing. To gain insight into differences between early and late involvement and the effect on existing working procedures and skills as perceived by palliative home care teams. Qualitative study - focus group interviews. Six palliative home care teams in Flanders, Belgium. Participants included physicians, nurses and psychologists. Differences were found concerning (1) reasons for initiation, (2) planning of care process, (3) focus on future goals versus problems, (4) opportunity to provide holistic care, (5) empowerment of patients and (6) empowerment of professional caregivers. A shift from a medical approach to a more holistic approach is the most noticeable. Being involved earlier also results in a more structured follow-up and in empowering the patient to be part of the decision-making process. Early involvement creates the need for transmural collaboration, which leads to the teams taking on more supporting and coordinating tasks. Being involved earlier leads to different tasks and working procedures and to the need for transmural collaboration. Future research might focus on the development of an intervention model for the early integration of palliative home care into oncology care. To develop this model, components of existing models might need to be adapted or extended.

  3. Ethical Dilemmas in Hospice and Palliative Care Units for Advanced Cancer Patients

    Directory of Open Access Journals (Sweden)

    Beyhan Bag

    2013-02-01

    Full Text Available Ethical dilemmas that face heathcare team members referring patients to hospice programs include the ability of clinicians to predict accurately a patient bad prognosis. They affect day-to-day patient management in palliative care programs including healthcare team members concern over the use of morphine because possible respiratory depression in the patient, the question of providing enteral or parenteral nutritional support to patients who refuse to eat and the question of providing parenteral fluids to patients who are unable to take fluids during the terminal phrases of illness. A final ethical dilemma concerns the methodology for quality of life research in palliative care. Understanding and resolving these ethical dilemmas is an important factor determining the quality of the caring for the patient. The ethical dilemmas that are discussed in the article likely to occur in this period can be prevented through his/her participation in the decisions concerning his or her treatment. [Archives Medical Review Journal 2013; 22(1.000: 65-79

  4. Patterns of Cost for Patients Dying in the Intensive Care Unit and Implications for Cost Savings of Palliative Care Interventions.

    Science.gov (United States)

    Khandelwal, Nita; Benkeser, David; Coe, Norma B; Engelberg, Ruth A; Teno, Joan M; Curtis, J Randall

    2016-11-01

    Terminal intensive care unit (ICU) stays represent an important target to increase value of care. To characterize patterns of daily costs of ICU care at the end of life and, based on these patterns, examine the role for palliative care interventions in enhancing value. Secondary analysis of an intervention study to improve quality of care for critically ill patients. 572 patients who died in the ICU between 2003 and 2005 at a Level-1 trauma center. Data were linked with hospital financial records. Costs were categorized into direct fixed, direct variable, and indirect costs. Patterns of daily costs were explored using generalized estimating equations stratified by length of stay, cause of death, ICU type, and insurance status. Estimates from the literature of effects of palliative care interventions on ICU utilization were used to simulate potential cost savings under different time horizons and reimbursement models. Mean cost for a terminal ICU stay was 39.3K ± 45.1K. Direct fixed costs represented 45% of total hospital costs, direct variable costs 20%, and indirect costs 34%. Day of admission was most expensive (mean 9.6K ± 7.6K); average cost for subsequent days was 4.8K ± 3.4K and stable over time and patient characteristics. Terminal ICU stays display consistent cost patterns across patient characteristics. Savings can be realized with interventions that align care with patient preferences, helping to prevent unwanted ICU utilization at end of life. Cost modeling suggests that implications vary depending on time horizon and reimbursement models.

  5. Introducing a model incorporating early integration of specialist palliative care: A qualitative research study of staff's perspectives.

    Science.gov (United States)

    Michael, Natasha; O'Callaghan, Clare; Brooker, Joanne E; Walker, Helen; Hiscock, Richard; Phillips, David

    2016-03-01

    Palliative care has evolved to encompass early integration, with evaluation of patient and organisational outcomes. However, little is known of staff's experiences and adaptations when change occurs within palliative care services. To explore staff experiences of a transition from a service predominantly focused on end-of-life care to a specialist service encompassing early integration. Qualitative research incorporating interviews, focus groups and anonymous semi-structured questionnaires. Data were analysed using a comparative approach. Service activity data were also aggregated. A total of 32 medical, nursing, allied health and administrative staff serving a 22-bed palliative care unit and community palliative service, within a large health service. Patients cared for within the new model were significantly more likely to be discharged home (7.9% increase, p = 0.003) and less likely to die in the inpatient unit (10.4% decrease, p management was considered valuable, nurses particularly found additional skill expectations challenging, and perceived patients' acute care needs as detracting from emotional and end-of-life care demands. Staff views varied on whether they regarded the new model's faster-paced work-life as consistent with fundamental palliative care principles. Less certainty about care goals, needing to prioritise care tasks, reduced shared support rituals and other losses could intensify stress, leading staff to develop personalised coping strategies. Services introducing and researching innovative models of palliative care need to ensure adequate preparation, maintenance of holistic care principles in faster work-paced contexts and assist staff dealing with demands associated with caring for patients at different stages of illness trajectories. © The Author(s) 2015.

  6. Palliative care in India: Current progress and future needs

    Directory of Open Access Journals (Sweden)

    Divya Khosla

    2012-01-01

    Full Text Available Despite its limited coverage, palliative care has been present in India for about 20 years. Obstacles in the growth of palliative care in India are too many and not only include factors like population density, poverty, geographical diversity, restrictive policies regarding opioid prescription, workforce development at base level, but also limited national palliative care policy and lack of institutional interest in palliative care. Nonetheless we have reasons to be proud in that we have overcome several hurdles and last two decades have seen palpable changes in the mindset of health care providers and policy makers with respect to need of palliative care in India. Systematic and continuous education for medical staff is mandatory, and a major break-through for achieving this purpose would be to increase the number of courses and faculties in palliative medicine at most universities.

  7. Awareness of palliative care among diploma nursing students

    Directory of Open Access Journals (Sweden)

    Suja Karkada

    2011-01-01

    Full Text Available Background: The goal of palliative care is not to cure, but to provide comfort and maintain the highest possible quality of life for as long as life remains. The knowledge of nurses influences the quality of care provided to these patients. The present study aimed at identifying the level of knowledge and attitude of nursing students who are the future caretakers of patients, which helps to make recommendations in incorporating palliative care concepts in the nursing curriculum. Objectives: (1 To assess the level of knowledge of nursing students on palliative care; (2 To identify the attitude of nursing students towards palliative care; (3 To find the correlation between the knowledge and attitude of nursing students; (4 To find the association between nursing students′ knowledge, attitude and selected demographic variables. Materials and Methods: A correlative survey was carried out among 83 third-year Diploma Nursing students by using cluster sampling method from selected nursing schools of Udupi district. Results: The data analyzed showed that the majority (51% of them was in the age group of 21years and 92% of them were females. Only 43.4% of them were aware of the term palliative care and it was during their training period. The data showed that 79.5% of students had poor knowledge (6.4± 1.64 on palliative care and 92.8% of them had favorable attitude (56.7± 8.5 towards palliative care. The chi-square showed a significant association between knowledge and age (χ2 =18.52,P<0.01 of the nursing students. Conclusion: Palliative care aspects should be incorporated in the diploma nursing curriculum.

  8. How integrated are neurology and palliative care services? Results of a multicentre mapping exercise.

    Science.gov (United States)

    van Vliet, Liesbeth M; Gao, Wei; DiFrancesco, Daniel; Crosby, Vincent; Wilcock, Andrew; Byrne, Anthony; Al-Chalabi, Ammar; Chaudhuri, K Ray; Evans, Catherine; Silber, Eli; Young, Carolyn; Malik, Farida; Quibell, Rachel; Higginson, Irene J

    2016-05-10

    Patients affected by progressive long-term neurological conditions might benefit from specialist palliative care involvement. However, little is known on how neurology and specialist palliative care services interact. This study aimed to map the current level of connections and integration between these services. The mapping exercise was conducted in eight centres with neurology and palliative care services in the United Kingdom. The data were provided by the respective neurology and specialist palliative care teams. Questions focused on: i) catchment and population served; ii) service provision and staffing; iii) integration and relationships. Centres varied in size of catchment areas (39-5,840 square miles) and population served (142,000-3,500,000). Neurology and specialist palliative care were often not co-terminus. Service provisions for neurology and specialist palliative care were also varied. For example, neurology services varied in the number and type of provided clinics and palliative care services in the settings they work in. Integration was most developed in Motor Neuron Disease (MND), e.g., joint meetings were often held, followed by Parkinsonism (made up of Parkinson's Disease (PD), Multiple-System Atrophy (MSA) and Progressive Supranuclear Palsy (PSP), with integration being more developed for MSA and PSP) and least in Multiple Sclerosis (MS), e.g., most sites had no formal links. The number of neurology patients per annum receiving specialist palliative care reflected these differences in integration (range: 9-88 MND, 3-25 Parkinsonism, and 0-5 MS). This mapping exercise showed heterogeneity in service provision and integration between neurology and specialist palliative care services, which varied not only between sites but also between diseases. This highlights the need and opportunities for improved models of integration, which should be rigorously tested for effectiveness.

  9. Need for palliative care for neurological diseases.

    Science.gov (United States)

    Provinciali, Leandro; Carlini, Giulia; Tarquini, Daniela; Defanti, Carlo Alberto; Veronese, Simone; Pucci, Eugenio

    2016-10-01

    The new concept of palliative care supports the idea of palliation as an early approach to patients affected by disabling and life-limiting disease which focuses on the patient's quality of life along the entire course of disease. This model moves beyond the traditional concept of palliation as an approach restricted to the final stage of disease and widens the fields of intervention. There is a growing awareness of the importance of palliative care not only in oncological diseases but also in many other branches of medicine, and it appears particularly evident in the approach to many of the most frequent neurological diseases that are chronic, incurable and autonomy-impairing illnesses. The definition and implementation of palliative goals and procedures in neurology must take into account the specific features of these conditions in terms of the complexity and variability of symptoms, clinical course, disability and prognosis. The realization of an effective palliative approach to neurological diseases requires specific skills and expertise to adapt the concept of palliation to the peculiarities of these diseases; this approach should be realized through the cooperation of different services and the action of a multidisciplinary team in which the neurologist should play a central role to identify and face the patient's needs. In this view, it is paramount for the neurologist to be trained in these issues to promote the integration of palliative care in the care of neurological patients.

  10. A randomised, multicentre clinical trial of specialised palliative care plus standard treatment versus standard treatment alone for cancer patients with palliative care needs: the Danish palliative care trial (DanPaCT) protocol

    DEFF Research Database (Denmark)

    Johnsen, Anna Thit; Damkier, Anette; Vejlgaard, Tove Bahn

    2013-01-01

    Advanced cancer patients experience considerable symptoms, problems, and needs. Early referral of these patients to specialised palliative care (SPC) could improve their symptoms and problems.The Danish Palliative Care Trial (DanPaCT) investigates whether patients with metastatic cancer, who report...... palliative needs in a screening, will benefit from being referred to 'early SPC'....

  11. Palliative care - managing pain

    Science.gov (United States)

    ... page, please enable JavaScript. Palliative care is a holistic approach to care that focuses on treating pain ... stressful for you and your family. But with treatment, pain can be managed. How Pain is Measured ...

  12. What is palliative care?

    Science.gov (United States)

    ... A Guide to Advance Directives, the Health Care Power of Attorney, and Other Key Documents . Cambridge, MA: Harvard Health Publications. 2013. Oxenham D. Palliative care and pain. In: Walker BR, Colledge NR, Ralston SH, Penman ...

  13. An Innovative Role for Faith Community Nursing: Palliative Care Ministry.

    Science.gov (United States)

    Lentz, Judy C

    Although the specialty of palliative nursing and palliative care continues to grow in hospital and outpatient settings, a paucity of home-based palliative services remains. This article discusses a new paradigm of faith-based palliative care ministry using faith community nurses (FCNs). Under the leadership of a palliative care doula (a nurse expert in palliative care), nurses in the faith community can offer critical support to those with serious illness. Models such as this provide stimulating content for FCN practice and opportunity to broaden health ministry within faith communities.

  14. Poverty Reduction in India through Palliative Care: A Pilot Project.

    Science.gov (United States)

    Ratcliff, Cathy; Thyle, Ann; Duomai, Savita; Manak, Manju

    2017-01-01

    EMMS International and Emmanuel Hospital Association (EHA) implemented a pilot project, poverty reduction in India through palliative care (PRIPCare). A total of 129 interviews with patients and family enrolled in palliative care at three EHA hospitals (in Fatehpur, Lalitpur and Utraula) and staff discussions established that 66% of palliative care patients had lost livelihoods due to illness, 26% of patients' families had members who had lost livelihoods due to the illness, 98% of enrolled households had debts, 59% had loans for which they had sold assets, 69% of households took out debt after their family member fell ill, many patients do not know about government benefits and lack necessary documents, many village headmen require bribes to give people access to benefits, and many bereaved women and children lose everything. Palliative care enabled 85% of patients and families to spend less on medicines, 31% of patients received free medicines, all patients reduced use of out-patient departments (OPDs), 20% reduced use of inpatient departments (IPDs), and therefore spent less on travel, 8% of patients had started earning again due to improved health, members of 10% of families started earning again, and one hospital educated 171 village headmen and increased by 5% the number of patients and their families receiving government benefits. If only 0.7% of needy adults are receiving palliative care, these benefits could be delivered to 143 times more families, targeted effectively at poverty reduction. Palliative care has great scope to reduce that most desperate poverty in India caused by chronic illness. This article concerns a study by the UK NGO EMMS International and Indian NGO EHA, to assess whether palliative care reduces household poverty. EHA staff had noticed that many patients spend a lot on ineffective treatment before joining palliative care, many families do not know their entitlement to government healthcare subsidies or government pensions, and many

  15. Palliative Care Specialist Consultation Is Associated With Supportive Care Quality in Advanced Cancer.

    Science.gov (United States)

    Walling, Anne M; Tisnado, Diana; Ettner, Susan L; Asch, Steven M; Dy, Sydney M; Pantoja, Philip; Lee, Martin; Ahluwalia, Sangeeta C; Schreibeis-Baum, Hannah; Malin, Jennifer L; Lorenz, Karl A

    2016-10-01

    Although recent randomized controlled trials support early palliative care for patients with advanced cancer, the specific processes of care associated with these findings and whether these improvements can be replicated in the broader health care system are uncertain. The aim of this study was to evaluate the occurrence of palliative care consultation and its association with specific processes of supportive care in a national cohort of Veterans using the Cancer Quality ASSIST (Assessing Symptoms Side Effects and Indicators of Supportive Treatment) measures. We abstracted data from 719 patients' medical records diagnosed with advanced lung, colorectal, or pancreatic cancer in 2008 over a period of three years or until death who received care in the Veterans Affairs Health System to evaluate the association of palliative care specialty consultation with the quality of supportive care overall and by domain using a multivariate regression model. All but 54 of 719 patients died within three years and 293 received at least one palliative care consult. Patients evaluated by a palliative care specialist at diagnosis scored seven percentage points higher overall (P specialist consultation is associated with better quality of supportive care in three advanced cancers, predominantly driven by improvements in information and care planning. This study supports the effectiveness of early palliative care consultation in three common advanced cancers within the Veterans Affairs Health System and provides a greater understanding of what care processes palliative care teams influence. Published by Elsevier Inc.

  16. [Providing regular relief; considerations for palliative care in the Netherlands].

    Science.gov (United States)

    Crul, B J; van Weel, C

    2001-10-20

    Over the last few decades the attention devoted to the palliative aspects of medicine, particularly those in hospital care, has declined due to the emphasis on medical technology. In Anglo-Saxon countries a review of this development resulted in structured palliative care that benefited terminally ill patients with a progressive fatal disease, especially cancer patients. Due to increasing national and international criticism of both the practice of euthanasia (assumed to be too liberal) and the lack of attention devoted to structured palliative care in the Netherlands, the Dutch government decided to improve the structure of palliative care. The government's viewpoint is based on the assumption that good palliative care that includes adequate pain control benefits patient care and might eventually lead to fewer requests for euthanasia. The improvements to palliative care should be realised by means of improvements in the structure, training and knowledge. Six academic medical clusters have been designated as Centres for the Development of Palliative Care (Dutch acronym: COPZ) for a 5-year period. Each COPZ must develop the various aspects needed to improve palliative care within the region it serves and ensure that its activities are carefully coordinated with those in the other centres. Research will focus on measuring the efficacy of palliative care as well as ethical and epidemiological aspects. A government committee will assess the appropriateness of the activities undertaken by each of the centres.

  17. Qualitative Research in Palliative Care: Applications to Clinical Trials Work.

    Science.gov (United States)

    Lim, Christopher T; Tadmor, Avia; Fujisawa, Daisuke; MacDonald, James J; Gallagher, Emily R; Eusebio, Justin; Jackson, Vicki A; Temel, Jennifer S; Greer, Joseph A; Hagan, Teresa; Park, Elyse R

    2017-08-01

    While vast opportunities for using qualitative methods exist within palliative care research, few studies provide practical advice for researchers and clinicians as a roadmap to identify and utilize such opportunities. To provide palliative care clinicians and researchers descriptions of qualitative methodology applied to innovative research questions relative to palliative care research and define basic concepts in qualitative research. Body: We describe three qualitative projects as exemplars to describe major concepts in qualitative analysis of early palliative care: (1) a descriptive analysis of clinician documentation in the electronic health record, (2) a thematic content analysis of palliative care clinician focus groups, and (3) a framework analysis of audio-recorded encounters between patients and clinicians as part of a clinical trial. This study provides a foundation for undertaking qualitative research within palliative care and serves as a framework for use by other palliative care researchers interested in qualitative methodologies.

  18. Suboptimal palliative sedation in primary care: an exploration.

    Science.gov (United States)

    Pype, Peter; Teuwen, Inge; Mertens, Fien; Sercu, Marij; De Sutter, An

    2018-02-01

    Palliative sedation is a therapeutic option to control refractory symptoms in terminal palliative patients. This study aims at describing the occurrence and characteristics of suboptimal palliative sedations in primary care and at exploring the way general practitioners (GPs) experience suboptimal palliative sedation in their practice. We conducted a mixed methods study with a quantitative prospective survey in primary care and qualitative semi-structured interviews with GPs. The research team defined suboptimal palliative sedation as a time interval until deep sleep >1.5 h and/ or >2 awakenings after the start of the unconsciousness. Descriptive statistics were calculated on the quantitative data. Thematic analysis was used to analyse interview transcripts. We registered 63 palliative sedations in 1181 home deaths, 27 forms were completed. Eleven palliative sedations were suboptimal: eight due to the long time span until deep sleep; three due the number of unintended awakenings. GPs' interview analysis revealed two major themes: the shifting perception of failure and the burden of responsibility. Suboptimal palliative sedation occurs frequently in primary palliative care. Efficient communication towards family members is needed to prevent them from having unrealistic expectations and to prevent putting pressure on the GP to hasten the procedure. Sharing the burden of decision-making during the procedure with other health care professionals might diminish the heavy responsibility as perceived by GPs.

  19. Consultation with specialist palliative care services in palliative sedation: considerations of Dutch physicians

    NARCIS (Netherlands)

    Koper, I.; Heide, A.; Janssens, M.J.P.A.; Swart, S.; Perez, R.S.G.M.; Rietjens, J.A.C.

    2014-01-01

    Purpose: Palliative sedation is considered a normal medical practice by the Royal Dutch Medical Association. Therefore, consultation of an expert is not considered mandatory. The European Association of Palliative Care (EAPC) framework for palliative sedation, however, is more stringent: it

  20. European Association for Palliative Care: Forging a Vision of Excellence in Palliative Care in Central and Eastern European and Former Soviet Union Countries.

    Science.gov (United States)

    Radbruch, Lukas; Ling, Julie; Hegedus, Katalin; Larkin, Philip

    2018-02-01

    The European Association for Palliative Care (EAPC) represents many thousands of health care workers and volunteers working in or with an interest in palliative care. In 2016, the EAPC has individual members from 48 nations across the world, and collective members from 57 national palliative care associations in 32 European countries. Throughout its history, the EAPC has produced guidance on a range of palliative care issues. The biennial congresses and research congresses and the comprehensive Web site (www.eapcnet.eu) are renowned and well utilized platforms for dissemination and exchange of palliative care information. The EAPC has also published a newsletter specifically for Eastern European and Central Asian countries that has been available in both English and Russian from 2005 to 2012. In addition, for a period of time, a Russian Web site (www.eapcspeaksrussian.eu) was also available. A survey of palliative care in Central and Eastern European nations sponsored by Open Society Foundation's International Palliative Care Initiative found that in most countries, the national language is preferred rather than using English or Russian for the provision of information. Accordingly, the EAPC Web site provides translations of white papers, position papers, and blog posts in a number of languages. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

  1. [For the betterment of home palliative care].

    Science.gov (United States)

    Midorikawa, Yasuhiko; Iiduka, Masashi

    2010-12-01

    The problems we have identified to overcome for a betterment of home palliative care were as follows:(1) Staffs' low level of knowledge and a lack of interest in home care, (2) Lack of cooperation between hospital and clinic, (3) Hard to keep the medical and caregiver staffs employed in the home care settings and a technical training is behind, (4) Insufficient cooperative networks for elderly care and welfare in the region, and (5) Misunderstanding of home palliative care by patient, family and people in the region. It is important to solve these problems one by one for a betterment of home palliative care. In this paper, we reported these problems through actual activities of our hospital and Iwaki city, and we propose to deal with them.

  2. Lumbar paravertebral blockade as intractable pain management method in palliative care

    OpenAIRE

    Zaporowska-Stachowiak I; Kotlinska-Lemieszek A; Kowalski G; Kosicka K; Hoffmann K; Główka F; Łuczak J

    2013-01-01

    Iwona Zaporowska-Stachowiak,1,2 Aleksandra Kotlinska-Lemieszek,3 Grzegorz Kowalski,3 Katarzyna Kosicka,4 Karolina Hoffmann,5 Franciszek Główka,4 Jacek Łuczak2 1Department of Pharmacology, 2Palliative Medicine In-patient Unit, University Hospital of Lord’s Transfiguration, 3Department of Palliative Care, 4Department of Physical Pharmacy and Pharmacokinetics, 5Department of Internal Medicine, Metabolic Disorders and Arterial Hypertension, Poznan University of Medical Scie...

  3. Evaluating palliative care needs in Middle Eastern countries.

    Science.gov (United States)

    Silbermann, Michael; Fink, Regina M; Min, Sung-Joon; Mancuso, Mary P; Brant, Jeannine; Hajjar, Ramzi; Al-Alfi, Nesreen; Baider, Lea; Turker, Ibrahim; ElShamy, Karima; Ghrayeb, Ibtisam; Al-Jadiry, Mazin; Khader, Khaled; Kav, Sultan; Charalambous, Haris; Uslu, Ruchan; Kebudi, Rejin; Barsela, Gil; Kuruku, Nilgün; Mutafoglu, Kamer; Ozalp-Senel, Gulsin; Oberman, Amitai; Kislev, Livia; Khleif, Mohammad; Keoppi, Neophyta; Nestoros, Sophia; Abdalla, Rasha Fahmi; Rassouli, Maryam; Morag, Amira; Sabar, Ron; Nimri, Omar; Al-Qadire, Mohammad; Al-Khalaileh, Murad; Tayyem, Mona; Doumit, Myrna; Punjwani, Rehana; Rasheed, Osaid; Fallatah, Fatimah; Can, Gulbeyaz; Ahmed, Jamila; Strode, Debbie

    2015-01-01

    Cancer incidence in Middle Eastern countries, most categorized as low- and middle-income, is predicted to double in the next 10 years, greater than in any other part of the world. While progress has been made in cancer diagnosis/treatment, much remains to be done to improve palliative care for the majority of patients with cancer who present with advanced disease. To determine knowledge, beliefs, barriers, and resources regarding palliative care services in Middle Eastern countries and use findings to inform future educational and training activities. Descriptive survey. Fifteen Middle Eastern countries; convenience sample of 776 nurses (44.3%), physicians (38.3%) and psychosocial, academic, and other health care professionals (17.4%) employed in varied settings. Palliative care needs assessment. Improved pain management services are key facilitators. Top barriers include lack of designated palliative care beds/services, community awareness, staff training, access to hospice services, and personnel/time. The nonexistence of functioning home-based and hospice services leaves families/providers unable to honor patient wishes. Respondents were least satisfied with discussions around advance directives and wish to learn more about palliative care focusing on communication techniques. Populations requiring special consideration comprise: patients with ethnic diversity, language barriers, and low literacy; pediatric and young adults; and the elderly. The majority of Middle Eastern patients with cancer are treated in outlying regions; the community is pivotal and must be incorporated into future plans for developing palliative care services. Promoting palliative care education and certification for physicians and nurses is crucial; home-based and hospice services must be sustained.

  4. Constipation in specialized palliative care: factors related to constipation when applying different definitions.

    Science.gov (United States)

    Erichsén, E; Milberg, A; Jaarsma, T; Friedrichsen, M

    2016-02-01

    For patients in palliative care, constipation is primarily a result of opioid treatment. Impacts from other factors related to constipation in palliative care are rarely studied. The aim was to identify factors related to constipation in patients in palliative care, and then to compare these factors between patients with different types of constipation and patients without constipation. Cross-sectional data on constipation was collected with a 26-item questionnaire from 485 patients in 38 specialist palliative care units in Sweden. Three different constipation groups were used; MC ONLY, PC ONLY, and MC & PC. Logistic regression analyses were used to calculate odds ratios. Patients with hospitalized, bed-restricted, in need of personal assistance for toilet visits, and of having a poor fluid intake. Patients with the perception of being constipated, PC ONLY, (n = 93) had higher odds of having poor appetite, hemorrhoids, hard stool, more opioid treatment, less laxative treatment and of being more dissatisfied with constipation information. Patients with both constipated, MC & PC, (n = 78) had higher odds of having cancer- disease. There were several significant factors related to constipation with higher odds than opioid- treatment, for patients in palliative care, such as; hard stool, cancer diagnosis, dissatisfaction with information, low fluid intake, hemorrhoids, bed restriction, hospitalization, and need of personal assistance for toilet visits.

  5. Does Tramadol Have a Role in Pain Control in Palliative Care?

    Science.gov (United States)

    Gonçalves, José António Ferraz; Silva, Paula; Araújo, Patrícia

    2015-09-01

    The effectiveness of the step II of the World Health Organization analgesic ladder including tramadol has been questioned recently. Retrospective study of patients treated with tramadol admitted as inpatients to one palliative care unit between November 1, 2009, and October 30, 2012. In the study period, 730 patients were admitted and 66 (9%) of them met the criteria for inclusion; 45 (68%) continued medication with tramadol until discharge from the unit, while 21 (32%) had to switch to an opioid for moderate to severe pain. The reason for switching was uncontrolled pain in 16 (76%) patients, and for 5 (24%) patients, the switch was made for other reasons. The data suggest that tramadol may have a role to play in the treatment of pain in palliative care. © The Author(s) 2014.

  6. PRIMARY PALLIATIVE CARE? - Treating terminally ill cancer patients in the primary care sector

    DEFF Research Database (Denmark)

    Neergaard, Mette Asbjørn; Jensen, Anders Bonde; Olesen, Frede

    BACKGROUND. Palliative care for cancer patients is an important part of a GP's work. Although every GP is frequently involved in care for terminally ill cancer patients, only little is known about how these palliative efforts are perceived by the patients and their families, a knowledge...... that is vital to further improve palliative care in the primary sector.AIM. The aim of the study was to analyse the quality of palliative home care with focus on the GP's role based on evaluations by relatives of recently deceased cancer patients and professionals from both the primary and secondary health care...... approach.RESULTS. The analyses revealed several key areas, e.g.: 1) How to take, give and maintain professional responsibility for palliative home care. 2) A need for transparent communication both among primary care professionals and among professionals across the primary/secondary interface. 3...

  7. Flemish palliative care nurses' attitudes toward euthanasia: a quantitative study.

    Science.gov (United States)

    Gielen, Joris; van den Branden, Stef; van Iersel, Trudie; Broeckaert, Bert

    2009-10-01

    To adequately measure the attitudes of Flemish palliative care nurses toward euthanasia, and assess the relationship between these attitudes and demographic factors and the (perceived) influence of experience in palliative care on death anxiety. An anonymous questionnaire was sent to all nurses (n=589) employed in palliative care in Flanders, Belgium: 70.5% of the nurses (n=415) responded. A majority of the nurses supported the Belgian law regulating euthanasia but also believed that most euthanasia requests disappear as soon as a patient experiences the benefits of good palliative care. Three clusters were discovered: staunch advocates of euthanasia (150 nurses, 41.1%); moderate advocates of euthanasia (135 nurses, 37%); and (moderate) opponents of euthanasia (80 nurses, 21.9%). An absolute opposition between advocates and opponents of euthanasia was not observed. A statistically significant relationship was found between the euthanasia clusters and years of experience in palliative care, and (perceived) influence of experience in palliative care on anxiety when a patient dies. Flemish palliative care nurses' attitudes toward euthanasia are nuanced and contextual. By indicating that most euthanasia requests disappear as soon as a patient experiences the benefits of good palliative care, the nurses applied a 'palliative filter' a standard procedure in the case of a euthanasia request.

  8. Palliative care guidelines in oncology

    International Nuclear Information System (INIS)

    Krizanova, K.

    2006-01-01

    Palliative care has its roots in hospice movement arising in the 1970s in Europe and later also in America. From its beginning it has had connection with patients in terminal phase of cancer disease who suffered from many serious symptoms. Nowadays palliative care is also being provided to patients in terminal phase of certain neurological disorders, AIDS, exceptionally for patients with heart, lung or kidney failure. It has become part of modern medicine and of good clinical practice. (author)

  9. Palliative care in Argentina: perspectives from a country in crisis.

    Science.gov (United States)

    De Simone, Gustavo G

    2003-01-01

    Argentina is a large South American country with a high prevalence of chronic disease-related mortality and a clear need for implementation of palliative care. Primary concerns related to palliative care are cultural, socio-economic and educational. Increasing poverty, patients and families receiving inadequate information about their diagnosis or prognosis, drug availability and costs, and insufficient knowledge by health care providers are obstacles to palliative care. Palliative care programs are developing throughout the country and methods by which they are meeting their needs are described. Several Argentinean palliative care initiatives are described and the role of the Pallium Latinomérica training program is discussed.

  10. A cost analysis of a hospital-based palliative care outreach program: implications for expanding public sector palliative care in South Africa.

    Science.gov (United States)

    Hongoro, Charles; Dinat, Natalya

    2011-06-01

    Increasing access to palliative care services in low- and middle-income countries is often perceived as unaffordable despite the growing need for such services because of the increasing burden of chronic diseases including HIV and AIDS. The aim of the study was to establish the costs and cost drivers for a hospital outreach palliative care service in a low-resource setting, and to elucidate possible consequential quality-of-life improvements and potential cost savings. The study used a cost accounting procedure to cost the hospital outreach services--using a step-down costing method to measure unit (average) costs. The African Palliative Care Association Palliative Outcome Score (APCA POS) was applied at five intervals to a cohort of 72 consecutive and consenting patients, enrolled in a two-month period. The study found that of the 481 and 1902 patients registered for outreach and in-hospital visits, respectively, 4493 outreach hospital visits and 3412 in-hospital visits were done per year. The costs per hospital outreach visit and in-hospital visit were US$71 and US$80, respectively. The cost per outreach visit was 50% less than the average cost of a patient day equivalent for district hospitals of $142. Some of the POS of a subsample (n=72) showed statistically significant improvements. Hospital outreach services have the potential to avert hospital admissions in generally overcrowded services in low-resource settings and may improve the quality of life of patients in their home environments. Copyright © 2011 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.

  11. Communication that heals: mindful communication practices from palliative care leaders.

    Science.gov (United States)

    Omilion-Hodges, Leah M; Swords, Nathan M

    2016-01-01

    Though research has begun to highlight the centrality of communication in palliative care, studies have yet to focus on the use of mindful communication. Mindful communication is associated with increases in patient care and decreases in physician burnout. Through in-depth, semi-structured interviews the authors sought mindful communication practices from palliative care leaders in American Hospital Association Circle of Life® award-wining units. Four key mindful communication practices emerged: Know your audience, ask questions, discard scripts, and recognize your role. The discussion articulates how key mindful communication practices may be used as a stage model, where key practices may be used individually or in concert, by sole practitioners or within interdisciplinary teams and by new and seasoned clinicians. Theoretical contributions and areas for future inquiry are also discussed.

  12. Self-assessment in cancer patients referred to palliative care

    DEFF Research Database (Denmark)

    Strömgren, Annette S; Goldschmidt, Dorthe; Groenvold, Mogens

    2002-01-01

    the symptomatology of participating patients and examines differences in symptomatology between patients in three palliative care functions: inpatient, outpatient, and palliative home care. RESULTS: Of 267 eligible patients who were referred to a department of palliative medicine, initial self......-based study of symptomatology in consecutive cancer patients in palliative care, achieving rather complete data from the participants. The symptomatology in these patients was very pronounced. The questionnaires were able to detect clinically important differences between places of service....

  13. Leadership Development Initiative: Growing Global Leaders… Advancing Palliative Care.

    Science.gov (United States)

    Ferris, Frank D; Moore, Shannon Y; Callaway, Mary V; Foley, Kathleen M

    2018-02-01

    The International Palliative Care Leadership Development Initiative (LDI) was a model demonstration project that aimed to expand the global network of palliative care leaders in low- and moderate-resource countries who are well positioned to apply their new leadership skills. Thirty-nine palliative medicine physicians from 25 countries successfully completed the two-year curriculum that included three thematic residential courses, mentorship, and site visits by senior global palliative care leaders and personal projects to apply their new leadership skills. The focus on self-reflection, leadership behaviors and practices, strategic planning, high-level communication, and teaching skills led to significant personal and professional transformation among the participants, mentors, and the LDI team. The resulting residential course curriculum and the personal leadership stories and biosketches of the leaders are now available open access at IPCRC.net. Already, within their first-year postgraduation, the leaders are using their new leadership skills to grow palliative care capacity through significant changes in policy, improved opioid/other medication availability, new and enhanced educational curricula and continuing education activities, and development/expansion of palliative care programs in their organizations and regions. We are not aware of another palliative care initiative that achieves the global reach and ripple effect that LDI has produced. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

  14. Quality of care in palliative sedation: audit and compliance monitoring of a clinical protocol.

    Science.gov (United States)

    Benitez-Rosario, Miguel Angel; Castillo-Padrós, Manuel; Garrido-Bernet, Belén; Ascanio-León, Belen

    2012-10-01

    The European Association for Palliative Care and the U.S. National Hospice and Palliative Care Organization have published statements that recommend an audit of palliative sedation practices. The aim was to assess the feasibility of a quality care project in palliative sedation. We carried out an audit of adherence to a guideline regarding palliative sedation, undertaken as a yearly assessment during two years, of a sample of patient charts. With an audit tool, the charts were evaluated as to the presence of the ethical sedation checklist, information that justified palliative sedation, patient and/or family agreement, and the appropriateness of treatment in concordance with the clinical protocol. An educational program and result feedback meetings were used as the implementation strategy. Roughly 25% of the medical charts of patients who died in the palliative care unit were evaluated, 94 in 2007 and 110 in 2008. In 2007 and 2008, 63% and 57% of the patients, respectively, whose median age was 65 years, were sedated, with a median length of two days. The main reason for sedation was agitation concomitant with respiratory failure in roughly 60% and 75% of the cases in 2007 and 2008, respectively. Agreement of the patient/family about sedation was collected from 100% of the cases. The concordance of procedures with the sedation guideline was 100% in both years. Our quality-of-care strategy was shown to obtain a higher level of compliance with the palliative sedation guideline for at least two years. Copyright © 2012 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.

  15. [Palliative care and end-of-life patients in emergency situations. Recommendations on optimization of out-patient care].

    Science.gov (United States)

    Wiese, C H R; Vagts, D A; Kampa, U; Pfeiffer, G; Grom, I-U; Gerth, M A; Graf, B M; Zausig, Y A

    2011-02-01

    At the end of life acute exacerbations of medical symptoms (e.g. dyspnea) in palliative care patients often result in emergency medical services being alerted. The goals of this study were to discuss cooperation between emergency medical and palliative care structures to optimize the quality of care in emergencies involving palliative care patients. For data collection an open discussion of the main topics by experts in palliative and emergency medical care was employed. Main outcome measures and recommendations included responses regarding current practices related to expert opinions and international literature sources. As the essential points of consensus the following recommendations for optimization of care were named: (1) integration of palliative care in the emergency medicine curricula for pre-hospital emergency physicians and paramedics, (2) development of outpatient palliative care, (3) integration of palliative care teams into emergency medical structures, (4) cooperation between palliative and emergency medical care, (5) integration of crisis intervention into outpatient palliative emergency medical care, (6) provision of emergency plans and emergency medical boxes, (7) provision of palliative crisis cards and do not attempt resuscitation (DNAR) orders, (8) psychosocial aspects concerning palliative emergencies and (9) definition of palliative patients and their special situation by the physician responsible for prior treatment. Prehospital emergency physicians are confronted with emergencies in palliative care patients every day. In the treatment of these emergencies there are potentially serious conflicts due to the different therapeutic concepts of palliative medical care and emergency medical services. This study demonstrates that there is a need for regulated criteria for the therapy of palliative patients and patients at the end of life in emergency situations. Overall, more clinical investigations concerning end-of-life care and unresponsive

  16. Attitude to Euthanasia of Workers in Palliative Care

    OpenAIRE

    Poštová, Lenka

    2015-01-01

    This bsachelor thesis is devided into two parts, theoretical and practical. The work focuses on opinions of workers in palliative care on euthanasia. The theoretical part deals with the definition of palliative care, its goals and principles. Futhermore, it also introduced quality of palliative care in Czech Republic. Second chapter explains the term euthanasia and its forms. It also contains opinions of citizens of the Czech Republic on euthanasia. Third chapter is dedicated to terms such as...

  17. Function of local networks in palliative care: a Dutch view.

    Science.gov (United States)

    Nikbakht-Van de Sande, C V M Vahedi; van der Rijt, C C D; Visser, A Ph; ten Voorde, M A; Pruyn, J F A

    2005-08-01

    Although network formation is considered an effective method of stimulating the integrated delivery of palliative care, scientific evidence on the usefulness of network formation is scarce. In 1998 the Ministry of Health of The Netherlands started a 5-year stimulation program on palliative care by founding and funding six regional Centres for the Development of Palliative Care. These centers were structured around pivotal organizations such as university hospitals and comprehensive cancer centers. As part of the stimulation program a locoregional network model was introduced within each center for the Development of Palliative Care to integrate palliative care services in the Dutch health care system. We performed a study on network formation in the southwestern area of The Netherlands with 2.4 million inhabitants. The study aimed to answer the following questions: (1) how do networks in palliative care develop, which care providers participate and how do they function? (2) which are the achievements of the palliative care networks as perceived by their participants? (3) which are the success factors of the palliative care networks according to their participants and which factors predict the achievements? Between September 2000 and January 2004 eight local palliative care networks in the region of the Center for Development of Palliative Care-Rotterdam (southwestern area of The Netherlands) were closely followed to gain information on their characteristics and developmental course. At the start of the study semistructured interviews were held with the coordinators of the eight networks. The information from these interviews and from the network documents were used to constitute a questionnaire to assess the opinions and experiences of the network participants. According to the vast majority of responders, the most important reason to install the networks was the lack of integration between the existing local health care services. The networks were initiated to

  18. The Attitudes of Indian Palliative-care Nurses and Physicians to Pain Control and Palliative Sedation.

    Science.gov (United States)

    Gielen, Joris; Gupta, Harmala; Rajvanshi, Ambika; Bhatnagar, Sushma; Mishra, Seema; Chaturvedi, Arvind K; den Branden, Stef Van; Broeckaert, Bert

    2011-01-01

    We wanted to assess Indian palliative-care nurses and physicians' attitudes toward pain control and palliative sedation. From May to September 2008, we interviewed 14 physicians and 13 nurses working in different palliative-care programs in New Delhi, using a semi-structured questionnaire, and following grounded-theory methodology (Glaser and Strauss). The interviewees did not consider administration of painkillers in large doses an ethical problem, provided the pain killers are properly titrated. Mild palliative sedation was considered acceptable. The interviewees disagreed whether palliative sedation can also be deep and continuous. Arguments mentioned against deep continuous palliative sedation were the conviction that it may cause unacceptable side effects, and impedes basic daily activities and social contacts. A few interviewees said that palliative sedation may hasten death. Due to fears and doubts regarding deep continuous palliative sedation, it may sometimes be too easily discarded as a treatment option for refractory symptoms.

  19. Core attitudes of professionals in palliative care: a qualitative study.

    Science.gov (United States)

    Simon, Steffen T; Ramsenthaler, Christina; Bausewein, Claudia; Krischke, Norbert; Geiss, Gerlinde

    2009-08-01

    Self-awareness of one's own reactions towards patients and their relatives is of paramount importance for all professionals in palliative care. 'Core attitude' describes the way in which a person perceives himself and the world, and forms the basis for his actions and thoughts. The aim of this study is to explore what core attitude means for palliative care professionals and whether there is a specific core attitude in palliative care. Qualitative study with 10 face-to-face in-depth interviews with experts in palliative care (nurses, physicians, social workers, psychologists, chaplain) in Germany. Core attitude in palliative care can be best described with the following three domains: 1) personal characteristics; 2) experience of care; and 3) competence in care. Authenticity is the most important characteristic of professionals, along with honesty and mindfulness. Core attitude primarily becomes apparent in the relationship with the patient. Perception and listening are key competences. The experts emphasized the universality of the core attitude in the care of ill people. They stressed the importance and relevance of teaching core attitudes in palliative care education. In the field of palliative care, core attitude consists predominately of authenticity, manifests itself in relationships, and requires a high degree of perceptiveness.

  20. Consensus guidelines on analgesia and sedation in dying intensive care unit patients

    Directory of Open Access Journals (Sweden)

    Lemieux-Charles Louise

    2002-08-01

    Full Text Available Abstract Background Intensivists must provide enough analgesia and sedation to ensure dying patients receive good palliative care. However, if it is perceived that too much is given, they risk prosecution for committing euthanasia. The goal of this study is to develop consensus guidelines on analgesia and sedation in dying intensive care unit patients that help distinguish palliative care from euthanasia. Methods Using the Delphi technique, panelists rated levels of agreement with statements describing how analgesics and sedatives should be given to dying ICU patients and how palliative care should be distinguished from euthanasia. Participants were drawn from 3 panels: 1 Canadian Academic Adult Intensive Care Fellowship program directors and Intensive Care division chiefs (N = 9; 2 Deputy chief provincial coroners (N = 5; 3 Validation panel of Intensivists attending the Canadian Critical Care Trials Group meeting (N = 12. Results After three Delphi rounds, consensus was achieved on 16 statements encompassing the role of palliative care in the intensive care unit, the management of pain and suffering, current areas of controversy, and ways of improving palliative care in the ICU. Conclusion Consensus guidelines were developed to guide the administration of analgesics and sedatives to dying ICU patients and to help distinguish palliative care from euthanasia.

  1. Overcoming recruitment challenges in palliative care clinical trials.

    Science.gov (United States)

    LeBlanc, Thomas W; Lodato, Jordan E; Currow, David C; Abernethy, Amy P

    2013-11-01

    Palliative care is increasingly viewed as a necessary component of cancer care, especially for patients with advanced disease. Rigorous clinical trials are thus needed to build the palliative care evidence base, but clinical research-especially participant recruitment-is difficult. Major barriers include (1) patient factors, (2) "gatekeeping," and (3) ethical concerns. Here we discuss an approach to overcoming these barriers, using the Palliative Care Trial (PCT) as a case study. The PCT was a 2 × 2 × 2 factorial randomized controlled trial (RCT) of different service delivery models to improve pain control in the palliative setting. It used a recruitment protocol that fused evidence-based strategies with principles of "social marketing," an approach involving the systematic application of marketing techniques. Main components included (1) an inclusive triage algorithm, (2) information booklets targeting particular stakeholders, (3) a specialized recruitment nurse, and (4) standardization of wording across all study communications. From an eligible pool of 607 patients, the PCT enrolled 461 patients over 26 months. Twenty percent of patients referred to the palliative care service were enrolled (76% of those eligible after screening). Several common barriers were minimized; among those who declined participation, family disinterest was uncommon (5%), as was the perception of burden imposed (4%). Challenges to clinical trial recruitment in palliative care are significant but not insurmountable. A carefully crafted recruitment and retention protocol can be effective. Our experience with designing and deploying a social-marketing-based protocol shows the benefits of such an approach.

  2. Continuous Palliative Sedation for Existential Distress? A Survey of Canadian Palliative Care Physicians' Views.

    Science.gov (United States)

    Voeuk, Anna; Nekolaichuk, Cheryl; Fainsinger, Robin; Huot, Ann

    2017-01-01

    Palliative sedation can be used for refractory symptoms during end-of-life care. However, continuous palliative sedation (CPS) for existential distress remains controversial due to difficulty determining when this distress is refractory. The aim was to determine the opinions and practices of Canadian palliative care physicians regarding CPS for existential distress. A survey focusing on experience and views regarding CPS for existential distress was sent to 322 members of the Canadian Society of Palliative Care Physicians. Eighty-one surveys returned (accessible target, 314), resulting in a response rate of 26%. One third (31%) of the respondents reported providing CPS for existential distress. On a 5-point Likert-type scale, 40% of participants disagreed, while 43% agreed that CPS could be used for existential distress alone. Differing opinions exist regarding this complex and potentially controversial issue, necessitating the education of health-care professionals and increased awareness within the general public.

  3. Pediatric Palliative Care: A Personal Story

    Medline Plus

    Full Text Available ... Queue __count__/__total__ It’s YouTube. Uninterrupted. Loading... Want music and videos with zero ads? Get YouTube Red. ... 014 views 6:28 Seasons Hospice & Palliative Care Music Therapy & Alzheimer's - Duration: 6:24. Seasons Hospice & Palliative ...

  4. Pediatric Palliative Care: A Personal Story

    Medline Plus

    Full Text Available ... Queue __count__/__total__ It’s YouTube. Uninterrupted. Loading... Want music and videos with zero ads? Get YouTube Red. ... 010 views 1:55 Seasons Hospice & Palliative Care Music Therapy & Alzheimer's - Duration: 6:24. Seasons Hospice & Palliative ...

  5. PALLIATIVE CARE IN ROMANIA : NEEDS AND RIGHTS

    NARCIS (Netherlands)

    van den Heuvel, Wim J. A.; Olaroiu, Marinela

    2008-01-01

    Palliative care is directed to maintenance of quality of life and to prevent and to relief suffering of those with a life-threatening disease. Palliative care does not only concern the patient, but also the quality of life of family members and it deals with physical symptoms as well as with

  6. Admittance to specialized palliative care (SPC) of patients with an assessed need

    DEFF Research Database (Denmark)

    Adsersen, Mathilde; Thygesen, Lau Caspar; Neergaard, Mette Asbjoern

    2017-01-01

    BACKGROUND: Admittance to specialized palliative care (SPC) has been discussed in the literature, but previous studies examined exclusively those admitted, not those with an assessed need for SPC but not admitted. The aim was to investigate whether admittance to SPC for referred adult patients...... with cancer was related to sex, age, diagnosis, geographic region or referral unit. MATERIAL AND METHODS: A register-based study with data from the Danish Palliative Care Database (DPD). From DPD we identified all adult patients with cancer, who died in 2010-2012 and who were referred to and assessed to have...

  7. A survey of the domiciliary situation of urban and rural patients of a palliative care unit in south India

    Directory of Open Access Journals (Sweden)

    Ramu Kandasamy

    2008-01-01

    Full Text Available Aim: A demographic study was conducted to understand the social status of the urban and rural patients attending a palliative care unit in South India. Methods: Fifty rural and 50 urban patients attending the palliative care outpatient clinic of the Christian Medical College and Hospital, South India were prospectively surveyed using a structured interview and home visits. Parameters studied included age, gender, marital status, education, occupation, religion, caste, housing, economic status, diagnosis, distance to the nearest health resource personnel and hospitals. Results: Occupation, religion, caste, housing, electricity, toilet and accessibility to health care were found to be significantly different between urban and rural patients. Seventy percent of the patients were below 60 years of age. The majority were unskilled laborers or housewives. One-third had never been to school and only 3% had been educated beyond high school. Half the patients slept on the floor, 50% of the dwellings had only one or two rooms and did not have toilets or running water. Ninety-five percent had electricity. The economic status of the patients correlated significantly with age, occupation and facilities in the house such as number of rooms, availability of beds, toilets and water supply. Women and older patients were significantly less likely to have completed school education. Women were less likely to be the main decision-makers and more likely to be the main caregivers. Conclusion: Economic status was a strong predictor of the various facilities available to the patient. A significant proportion of this population lived in deprived circumstances. A knowledge and understanding of the social conditions of the palliative care patients helps provide better-tailored care.

  8. Evaluation of Managerial Needs for Palliative Care Centers: Perspectives of Medical Directors.

    Science.gov (United States)

    Kafadar, Didem; Ince, Nurhan; Akcakaya, Adem; Gumus, Mahmut

    2015-01-01

    Palliative therapies have an important role in increasing the quality of healthcare and in dealing with physical and psychosocial problems due to cancer. We here aimed to evaluate the managerial perspectives and opinions of the hospital managers and clinical directors about specialized palliative care centers. This study was conducted in two large-scale hospitals in which oncology care is given with medical directors (n:70). A questionnaire developed by the researchers asking about demographic characteristics and professional experience, opinions and suggestions of medical directors about providing and integrating palliative care into healthcare was used and responses were analyzed. Potential barriers in providing palliative care (PC) and integrating PC into health systems were perceived as institutional by most of the doctors (97%) and nurses (96%). Social barriers were reported by 54% of doctors and 82% of nurses. Barriers due to interest and knowledge of health professionals about PC were reported by 76% of doctors and 75% of nurses. Among encouragement ideas to provide PC were dealing with staff educational needs (72%), improved working conditions (77%) and establishing a special PC unit (49)%. An independent PC unit was suggested by 27.7% of participants and there was no difference between the hospitals. To overcome the barriers for integration of PC into health systems, providing education for health professionals and patient relatives, raising awareness in society, financial arrangements and providing infrastructure were suggested. The necessity for planning and programming were emphasized. In our study, the opinions and perspectives of hospital managers and clinical directors were similar to current approaches. Managerial needs for treating cancer in efficient cancer centers, increasing the capacity of health professionals to provide care in every stage of cancer, effective education planning and patient care management were emphasized.

  9. An Australian casemix classification for palliative care: technical development and results.

    Science.gov (United States)

    Eagar, Kathy; Green, Janette; Gordon, Robert

    2004-04-01

    To develop a palliative care casemix classification for use in all settings including hospital, hospice and home-based care. 3866 palliative care patients who, in a three-month period, had 4596 episodes of care provided by 58 palliative care services in Australia and New Zealand. A detailed clinical and service utilization profile was collected on each patient with staff time and other resources measured on a daily basis. Each day of care was costed using actual cost data from each study site. Regression tree analysis was used to group episodes of care with similar costs and clinical characteristics. In the resulting classification, the Australian National Sub-acute and Non-acute Patient (AN-SNAP) Classification Version 1, the branch for classifying inpatient palliative care episodes (including hospice care) has 11 classes and explains 20.98% of the variance in inpatient palliative care phase costs using trimmed data. There are 22 classes in the ambulatory palliative care branch that explains 17.14% variation in ambulatory phase cost using trimmed data. The term 'subacute' is used in Australia to describe health care in which the goal--a change in functional status or improvement in quality of life--is a better predictor of the need for, and the cost of, care than the patient's underlying diagnosis. The results suggest that phase of care (stage of illness) is the best predictor of the cost of Australian palliative care. Other predictors of cost are functional status and age. In the ambulatory setting, symptom severity and the model of palliative care are also predictive of cost. These variables are used in the AN-SNAP Version 1 classification to create 33 palliative care classes. The classification has clinical meaning but the overall statistical performance is only moderate. The structure of the classification allows for it to be improved over time as models of palliative care service delivery develop.

  10. The Attitudes of Indian Palliative-care Nurses and Physicians to Pain Control and Palliative Sedation

    Science.gov (United States)

    Gielen, Joris; Gupta, Harmala; Rajvanshi, Ambika; Bhatnagar, Sushma; Mishra, Seema; Chaturvedi, Arvind K; den Branden, Stef Van; Broeckaert, Bert

    2011-01-01

    Aim: We wanted to assess Indian palliative-care nurses and physicians’ attitudes toward pain control and palliative sedation. Materials and Methods: From May to September 2008, we interviewed 14 physicians and 13 nurses working in different palliative-care programs in New Delhi, using a semi-structured questionnaire, and following grounded-theory methodology (Glaser and Strauss). Results: The interviewees did not consider administration of painkillers in large doses an ethical problem, provided the pain killers are properly titrated. Mild palliative sedation was considered acceptable. The interviewees disagreed whether palliative sedation can also be deep and continuous. Arguments mentioned against deep continuous palliative sedation were the conviction that it may cause unacceptable side effects, and impedes basic daily activities and social contacts. A few interviewees said that palliative sedation may hasten death. Conclusion: Due to fears and doubts regarding deep continuous palliative sedation, it may sometimes be too easily discarded as a treatment option for refractory symptoms. PMID:21633619

  11. Multidisciplinary perspectives of music therapy in adult palliative care.

    Science.gov (United States)

    O'Kelly, Julian; Koffman, Jonathan

    2007-04-01

    Music therapy aims to provide holistic support to individuals through the sensitive use of music by trained clinicians. A recent growth in music therapy posts in UK palliative care units has occurred despite a paucity of rigorous research. To explore the role of music therapy within multidisciplinary palliative care teams, and guide the future development of the discipline. In-depth qualitative interviews with 20 multidisciplinary colleagues of music therapists, based in five UK hospices. Analysis of interview material revealed a number of themes relevant to the study aims. Music therapy was valued by most interviewees; however there exists some lack of understanding of the role of the music therapist, particularly amongst nurses. Emotional, physical, social, environmental, creative and spiritual benefits of music therapy were described, with some benefits perceived as synergistic, arising from collaborations with other disciplines. Interviewees found experiencing or witnessing music therapy is effective in developing an understanding of the discipline. Music therapy is an appropriate therapeutic intervention for meeting the holistic needs of palliative care service users. More understanding and integration of music therapy could be encouraged with collaborative work, educational workshops, and the utilization of environmentally focused techniques. The study merits further research to explore and develop these findings.

  12. Palliative care experiences of adult cancer patients from ethnocultural groups: a qualitative systematic review protocol.

    Science.gov (United States)

    Busolo, David; Woodgate, Roberta

    2015-01-01

    , chaplains, home health aides and volunteers.Palliative care needs for cancer patients are numerous and may include needs related to activities of daily living, communication, sexuality, physical needs, psychological needs, fear, spiritual wellbeing, socioeconomic aspects and insufficiency of information. Cancer patients often report of suffering, pain and being in constant need of support. In dealing with their suffering, some patients seek internal motivation by looking at the disease as a life challenge. Other patients turn to external sources of motivation like religion, or peer and family support groups.Patients from different ethnocultural groups report similar as well as dissimilar palliative care needs and experiences. With respect to similarities, a study from the United States found that African American and Caucasian patients alike valued practical assistance from social groups. Participants from both ethnocultural groups valued friends and families that listened to their cancer-related concerns. Similarly, Turkish and Moroccan patients in a study conducted in Netherlands valued friends and family members that were there for them. Additionally, participants particularly of African American descent treasured positive attitudes from people around them and valued support from religion and faith communities. These sentiments are echoed in a palliative care study conducted in the United Kingdom. In the UK study, Caribbean Blacks and British White patients appreciated the significance of social networks and partner or spousal support in their cancer trajectory.In regards to unsupportive palliative care experiences, authors of the United States study report that African Americans and Caucasians had more similarities than differences. Firstly, both ethnocultural groups shared experiences of losing association with family and close friends after they learnt of the patients' diagnosis. These sentiments were also reported by Danish-born and immigrant patients in a study by

  13. Palliative Care To The Elderly Patient With Cancer: Speech Of Nurses

    Directory of Open Access Journals (Sweden)

    Irany Carvalho da Silva

    2017-02-01

    Full Text Available Palliative care is aimed at people with diseases without perspective of cure or terminally, aiming to provide a better quality of life. This study aims to investigating the discourse of nurses about their understanding of palliative care to elderly patient with cancer and identify strategies used by nurses to promote palliative care to the elderly cancer patient. It is an exploratory research of a qualitative nature, carried out with thirteen nurses from a philanthropic institution in the city of João Pessoa, through a questionnaire. The empirical material was subjected to thematic content analysis, resulting in three categories: design of nurses to assist the elderly in Palliative Care: promoting comfort and minimizing the suffering, the importance of palliative care in humanized care to the elderly with cancer and strategies for the Promotion of Care of the Elderly with Cancer. Participants highlighted the palliative care as essential in the humanization of care, ensuring the dignity and quality of life among the elderly with cancer without possibilities of cure, adding such assistance, the family. Keywords: Palliative Care; Nurse; Elderly; Cancer.

  14. [Secondary traumatization/trauma among employees in palliative care units--the products of prolonged repeated exposure to suffering and death].

    Science.gov (United States)

    Samson, Tali; Shvartzman, Pesach

    2012-11-01

    The palliative care philosophy accepts the dying process as a natural phase in the life cycle and provides quality end of life care for terminal patients and their family members. Prolonged exposure to the physical symptoms and pain, as well as the psychological, spiritual, and existential suffering of the dying patient, may be fertile ground for the development of post-traumatic stress symptoms among palliative care teams. Work-related positive outcomes (such as compassion, satisfaction and meaning) and work-related negative outcomes (such as compassion fatigue, secondary traumatization and burnout) can exist side by side, and the unique balance between them will determine the quality of life of the worker. This review presents the current knowledge about the prevalence and causes of work-related stress outcomes among palliative care teams and measurement tools that are available. The literature review discusses secondary traumatization in palliative care teams and relevant messages for the development of treatment options, burnout prevention programs and support interventions for professionals who lead the care for terminal patients in Israel.

  15. Patients' sense of security during palliative care-what are the influencing factors?

    Science.gov (United States)

    Milberg, Anna; Friedrichsen, Maria; Jakobsson, Maria; Nilsson, Eva-Carin; Niskala, Birgitta; Olsson, Maria; Wåhlberg, Rakel; Krevers, Barbro

    2014-07-01

    Having a sense of security is vitally important to patients who have a limited life expectancy. We sought to identify the factors associated with patients' sense of security during the palliative care period. We recruited 174 adult patients (65% of those eligible) from six palliative home care units. The relationship between the patients' sense of security during palliative care and individual factors was evaluated in a stepwise procedure using the generalized linear model (ordinal multinomial distribution and logit link). Respondents' ratings of their sense of security ranged from 1 (never) to 6 (always), with a mean value of 4.6 (SD 1.19). Patients with lower feelings of security experienced higher stress; more worry about personal finances; lower feelings of self-efficacy; a lower sense of security with the palliative care provided (lower ratings on subscales of care interaction); mastery; prevailed own identity; higher symptom intensity (especially depression, anxiety, and lack of well-being); lower health-related quality of life; lower attachment anxiety and avoidance; less support from family, relatives, and friends; lower comfort for those closest to them; and more often had gynecological cancer. Six variables (mastery, nervousness and stress, gynecological cancer, self-efficacy, worrying about personal finances, and avoidance) were selected in building the stepwise model. These findings stress the importance of palliative care services in supporting dying patients' sense of security through symptom management with a wide scope and through supporting the patients' sense of mastery, identity, and perception of a secure care interaction and also through attention to the family members' situation. Copyright © 2014 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.

  16. Requests from professional care providers for consultation with palliative care consultation teams.

    NARCIS (Netherlands)

    Groot, M.F. de; Vernooy-Dassen, M.J.F.J.; Courtens, A.M.; Kuin, A.; Linden, B.A. van der; Zuylen, L. van; Crul, B.J.P.; Grol, R.P.T.M.

    2005-01-01

    GOALS OF WORK: Professional care providers need a substantial basis of competence and expertise to provide appropriate palliative care. Little is known about the problems professionals experience in their palliative care provision in daily practice or about the nature of the advice and support they

  17. The views of patients with brain cancer about palliative care: a qualitative study.

    Science.gov (United States)

    Vierhout, M; Daniels, M; Mazzotta, P; Vlahos, J; Mason, W P; Bernstein, M

    2017-12-01

    Palliative care, a specialty aimed at providing optimal care to patients with life-limiting and chronic conditions, has several benefits. Although palliative care is appropriate for neurosurgical conditions, including brain cancer, few studies have examined the views of brain cancer patients about palliative care. We aimed to explore the thoughts of brain cancer patients about palliative care, their opinions about early palliative care, and their preferred care setting. Semi-structured interviews and the qualitative research methodologies of grounded theory were used to explore perceptions of palliative care on the part of 39 brain cancer outpatients. Seven overarching actions emerged: ■Patients would prefer to receive palliative care in the home.■Increased time with caregivers and family are the main appeals of home care.■Patients express dissatisfaction with brief and superficial interactions with health care providers.■Patients believe that palliative care can contribute to their emotional well-being.■Patients are open to palliative care if they believe that it will not diminish optimism.■There is a preconceived idea that palliative care is directly linked to active dying, and that supposed link generates fear in some patients.■Patients prefer to be educated about palliative care as an option early in their illness, even if they are fearful of it. Overall, when educated about the true meaning of palliative care, most patients express interest in accessing palliative care services. Although the level of fear concerning palliative care varies in patients, most recognize the associated benefits.

  18. Barriers to palliative care in people with chronic obstructive pulmonary disease in home care

    DEFF Research Database (Denmark)

    Mousing, Camilla Askov; Timm, Helle; Lomborg, Kirsten

    2018-01-01

    . Non-awareness and organisational barriers led to difficulties in identifying PC needs and reluctance to initiate conversations about PC. CONCLUSION: The findings indicate a need for education, training and reflection among professional caregivers in home care. Also, organisational changes may...... vague understanding of palliative care and lack of knowledge about the disease. Organisational barriers, such as lack of time and continuity in patient care and lack of opportunity to discuss palliative care and lack of peer learning were experienced as challenging in the provision of palliative care...... be needed to reduce the barriers to palliative care. This article is protected by copyright. All rights reserved....

  19. Improving communication on hope in palliative care. A qualitative study of palliative care professionals' metaphors of hope: grip, source, tune, and vision.

    Science.gov (United States)

    Olsman, Erik; Duggleby, Wendy; Nekolaichuk, Cheryl; Willems, Dick; Gagnon, Judith; Kruizinga, Renske; Leget, Carlo

    2014-11-01

    Hope is important in palliative care. However, palliative care professionals' perspectives on hope are not well understood. Metaphors of hope are a way of better understanding these perspectives. To describe palliative care professionals' perspectives on hope by examining the hope metaphors they spontaneously used to describe their own hope and their perspectives on the hope of patients and their families. Semistructured interviews with palliative care professionals were recorded, transcribed, and analyzed using a narrative approach. Results were discussed until the researchers reached consensus and reinforced by other health-care professionals and by observing several palliative care settings. The 64 participants (mean (SD) age, 48.42 (9.27) years and 72% female) were physicians (41%), nurses (34%), chaplains (20%), or other professionals (5%), working in Canada (19%) or The Netherlands (81%). Participants described the hope of patients, their families, or themselves as a 1) grip, which implied safety; 2) source, which implied strength; 3) tune, which implied harmony; and 4) vision, which implied a positive perspective. Compared with Dutch participants, Canadian participants generally put more emphasis on spirituality and letting go of their own hope as a grip (safety). Compared with other included professionals, physicians used hope as a grip (safety) most often, whereas chaplains used hope as a tune (harmony) most often. Our findings help to increase the understanding of hope and contribute to improving communication skills in palliative care professionals. Copyright © 2014 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

  20. A comparative study of the palliative care needs of heart failure and cancer patients.

    LENUS (Irish Health Repository)

    O'Leary, Norma

    2012-02-01

    AIMS: Studies suggest that patients with advanced heart failure (HF) have unmet palliative care (PC) needs. However, many of these studies have been retrospective or based on patients receiving poorly coordinated ad hoc care. We aimed to demonstrate whether the PC needs of patients with advanced HF receiving specialist multidisciplinary coordinated care are similar to cancer patients deemed to have specialist PC needs; thereby justifying the extension of specialist PC services to HF patients. METHODS AND RESULTS: This was a cross-sectional comparative cohort study of 50 HF patients and 50 cancer patients, using quantitative and qualitative methods. Both patient cohorts were statistically indistinguishable in terms of symptom burden, emotional wellbeing, and quality-of-life scores. HF patients had good access to community and social support. HF patients particularly valued the close supervision, medication monitoring, ease of access to service, telephone support, and key worker provided at the HF unit. A small subset of patients had unmet PC needs. A palliative transition point is described. CONCLUSION: HF patients should not be excluded from specialist PC services. However, the majority of their needs can be met at a HF unit. Recognition of the palliative transition point may be key to ensuring that end-of-life issues are addressed. The palliative transition point needs further evaluation.

  1. A team approach in palliative care: enhancing outcomes.

    Science.gov (United States)

    Schrader, Susan L; Horner, Arlene; Eidsness, LuAnn; Young, Sandy; Wright, Chris; Robinson, Michael

    2002-07-01

    While most Americans envision a "good death" as one occurring quickly and painlessly at home surrounded by loved ones, many people do not die in this fashion. Palliative care focuses on holistic treatment of patients whose disease is not responsive to curative treatment, and strives to improve quality of life for patients and families at end-of-life (EOL). This hospital-based study examines the extent to which a palliative care consultant team makes a difference in EOL for patients and families. Data were collected from a convenience sample of 50 hospitalized patients referred to an interdisciplinary palliative care consulting team at a South Dakota tertiary hospital during 2001. Various palliative care interventions were introduced during the course of hospitalization, and data were collected two days later to see if quality of life had improved. Statistically significant improvements were found in pain levels, non-pain symptom management, numerous psychosocial measures of quality of life, change in code status, and perceptions of communication and treatment during hospitalization. The study demonstrates that consultations with a palliative care team are beneficial and enhance the EOL experience for patients and families.

  2. Shared Care in Basic Level Palliative Home Care: Organizational and Interpersonal Challenges

    DEFF Research Database (Denmark)

    Neergaard, Mette Asbjørn; Olesen, Frede; Jensen, Anders Bonde

    2010-01-01

    Little is known about the existing barriers to cooperation among health professionals in basic level palliative care for terminally ill patients with cancer in primary health care.......Little is known about the existing barriers to cooperation among health professionals in basic level palliative care for terminally ill patients with cancer in primary health care....

  3. Attitudes of palliative home care physicians towards palliative sedation at home in Italy.

    Science.gov (United States)

    Mercadante, Sebastiano; Masedu, Francesco; Mercadante, Alessandro; Marinangeli, Franco; Aielli, Federica

    2017-05-01

    Information about the attitudes towards palliative sedation (PS) at home is limited. The aim of this survey was to assess the attitudes of palliative care physicians in Italy regarding PS at home. A questionnaire was submitted to a sample of palliative care physicians, asking information about their activity and attitudes towards PS at home. This is a survey of home care physicians in Italy who were involved in end-of-life care decisions at home. One hundred and fifty participants responded. A large heterogeneity of home care organizations that generate some problems was found. Indications, intention and monitoring of PS seem to be appropriate, although some cultural and logistic conditions were limiting the use of PS. Specialized home care physicians are almost involved to start PS at home. Midazolam was seldom available at home and opioids were more frequently used. These data should prompt health care agencies to make a minimal set of drugs easily available for home care. Further research is necessary to compare attitudes in countries with different sociocultural profiles.

  4. Palliative Care and Death Anxiety

    Directory of Open Access Journals (Sweden)

    Figen Inci

    2012-06-01

    Full Text Available Diminishing treatment alternatives, losing hope for a possible recovery, insufficient control of pain and inability to provide the necessary technical support lead palliative care to bring multiple problems with itself. Along with technical and professional challenges, palliative care can put a humanitarian strain on the nurse. Caring for a dying patient is a worrisome experience which causes spiritual pain. An increase in nurses’ death anxiety may cause unwillingness to be together with a dying patient. In terms of the end of life, it is expected that the nurse stands by patient’s family to help them in sustaining their psychosocial wellness. In order to meet this expectation, nurses should get a qualitative training for end of life care along with good interpersonal communication skills and coping strategies.

  5. Physician Perspectives on Palliative Care for Children With Neuroblastoma: An International Context.

    Science.gov (United States)

    Balkin, Emily M; Thompson, Daria; Colson, K Ellicott; Lam, Catherine G; Matthay, Katherine K

    2016-05-01

    Studies have shown that children with cancer globally lack access to palliative care. Little is known regarding physicians' perceptions of palliative care, treatment access, and self-reported competence in providing palliative care. Members of the Global Neuroblastoma Network (online tumor board) were surveyed. Eighty-three respondents met inclusion criteria; 53 (64%) completed the survey. Most respondents trained in high-income countries (HIC) but practice in low- and middle-income countries (LMIC), and care for more than five patients with neuroblastoma annually. WHO Essential Medicines in palliative care varied in availability, with incomplete access across LMIC centers. Nonpharmacologic therapies were inconsistently available. Contrary to international definitions, 17% of respondents inappropriately considered palliative care as that initiated only after curative therapy is stopped. Mean physician competence composite score (Likert scale 1-5, 5 = very competent) in providing symptomatic relief and palliative care across phases of care was 2.93 (95% CI 2.71-3.22). Physicians reported significantly greater competence in symptom management during cure-directed therapy than during end-of-life (P = 0.02) or when patients are actively dying (P = 0.007). Practicing in HIC, prior palliative care training, having access to radiotherapy, and not having to turn patients away due to bed shortages were significantly predictive of perceived competence in providing palliative care at end of life. An international sample identified gaps in treatment and palliative care service availability, in understanding the definition of palliative care, and in self-reported competence in providing palliative care. Increased perceived competence was associated with training, which supports the need for increased palliative care education and advocacy, especially in LMIC. © 2016 Wiley Periodicals, Inc.

  6. The Attitudes of Indian Palliative-Care Nurses and Physicians toward Pain Control and Palliative Sedation

    OpenAIRE

    Gielen, Joris; Gupta, Harmala; Rajvanshi, Ambika; Bhatnagar, Sushma; Mishra, Seema; Chaturvedi, Arvind K.; Van den Branden, Stef; Broeckaert, Bert

    2011-01-01

    Aim: We wanted to assess Indian palliative-care nurses and physicians’ attitudes toward pain control and palliative sedation. Materials and Methods: From May to September 2008, we interviewed 14 physicians and 13 nurses working in different palliative-care programs in New Delhi, using a semi-structured questionnaire, and following grounded-theory methodology (Glaser and Strauss). Results: The interviewees did not consider administration of painkillers in large doses an ethical problem, ...

  7. The attitudes of Indian palliative-care nurses and physicians to pain control and palliative sedation

    OpenAIRE

    Joris Gielen; Harmala Gupta; Ambika Rajvanshi; Sushma Bhatnagar; Seema Mishra; Arvind K Chaturvedi; Stef Van den Branden; Bert Broeckaert

    2011-01-01

    Aim: We wanted to assess Indian palliative-care nurses and physicians′ attitudes toward pain control and palliative sedation. Materials and Methods: From May to September 2008, we interviewed 14 physicians and 13 nurses working in different palliative-care programs in New Delhi, using a semi-structured questionnaire, and following grounded-theory methodology (Glaser and Strauss). Results: The interviewees did not consider administration of painkillers in large doses an ethical problem...

  8. Pediatric Oncology Palliative Care: Experiences of General Practitioners and Bereaved Parents.

    Science.gov (United States)

    Neilson, Sue J; Gibson, Faith; Greenfield, Sheila M

    2015-03-01

    This qualitative study set in the West Midlands region of the United Kingdom, aimed to examine the role of the general practitioner (GP) in children's oncology palliative care from the perspective of GPs who had cared for a child with cancer receiving palliative care at home and bereaved parents. One-to-one semi-structured interviews were undertaken with 18 GPs and 11 bereaved parents following the death. A grounded theory data analysis was undertaken; identifying generated themes through chronological comparative data analysis. Similarity in GP and parent viewpoints was found, the GPs role seen as one of providing medication and support. Time pressures GPs faced influenced their level of engagement with the family during palliative and bereavement care and their ability to address their identified learning deficits. Lack of familiarity with the family, coupled with an acknowledgment that it was a rare and could be a frightening experience, also influenced their level of interaction. There was no consistency in GP practice nor evidence of practice being guided by local or national policies. Parents lack of clarity of their GPs role resulted in missed opportunities for support. Time pressures influence GP working practices. Enhanced communication and collaboration between the GP and regional childhood cancer centre may help address identified GP challenges, such as learning deficits, and promote more time-efficient working practices through role clarity. Parents need greater awareness of their GP's wide-ranging role; one that transcends palliative care incorporating bereavement support and on-going medical care for family members.

  9. Palliative Care Needs Assessment in the Neuro-ICU: Effect on Family.

    Science.gov (United States)

    Creutzfeldt, Claire J; Hanna, Marina G; Cheever, C Sherry; Lele, Abhijit V; Spiekerman, Charles; Engelberg, Ruth A; Curtis, J Randall

    2017-10-01

    Examine the association of a daily palliative care needs checklist on outcomes for family members of patients discharged from the neurosciences intensive care unit (neuro-ICU). We conducted a prospective, longitudinal cohort study in a single, thirty-bed neuro-ICU in a regional comprehensive stroke and level 1 trauma center. One of two neuro-ICU services that admit patients to the same ICU on alternating days used a palliative care needs checklist during morning work rounds. Between March and October, 2015, surveys were mailed to family members of patients discharged from the neuro-ICU. Nearly half of surveys (n = 91, 48.1%) were returned at a median of 4.7 months. At the time of survey completion, mean Modified rankin scale score (mRS) of neuro-ICU patients was 3.1 (SD 2). Overall ratings of quality of care were relatively high (82.2 on a 0-100 scale) with 32% of family members meeting screening criteria for depressive syndrome. The primary outcome measuring family satisfaction, consisting of eight items from the Family Satisfaction in the ICU questionnaire, did not differ significantly between families of patients from either ICU service nor did family ratings of depression (PHQ-8) and post-traumatic stress (PCL-17). Among families of patients discharged from the neuro-ICU, the daily use of a palliative care needs checklist had no measurable effect on family satisfaction scores or long-term psychological outcomes. Further research is needed to identify optimal interventions to meet the palliative care needs specific to family members of patients treated in the neuro-ICU.

  10.  Cancer palliation in primary care - what is good and bad?

    DEFF Research Database (Denmark)

    Neergaard, Mette Asbjørn

     CANCER PALLIATION IN PRIMARY CARE -WHAT IS GOOD AND BAD?MA Neergaard, MD, specialist in general medicine, PhD student*F Olesen, general practitioner, Dr.Med.Sci., professor* J Soendergaard, general practitioner, senior researcher, PhD*AB Jensen, MD, consultant in oncology, PhD** *The Research Unit...... sectors. Methods. A series of focus group interviews is presently being conducted with participation of relatives of recently deceased cancer patients, GPs, community nurses and hospital physicians working with palliative patients. The interviews are transcribed and analysed  according...

  11. [Psychiatry and palliative care, collaboration for the benefit of the patient].

    Science.gov (United States)

    Regard, Lionel

    2018-01-01

    As palliative care units continue to develop, the provision of end-of-life care for patients with a chronic mental illness needs to be addressed. Aside from the somatic comorbidities to which these patients are particularly exposed and in view of the specificity of psychiatric treatment, the forms of end-of-life support for a patient with schizophrenia are described here, based on the experience of a psychiatric unit in the Var region. Copyright © 2017 Elsevier Masson SAS. All rights reserved.

  12. Palliative care - shortness of breath

    Science.gov (United States)

    ... page, please enable JavaScript. Palliative care is a holistic approach to care that focuses on treating pain ... the cause will help the team decide the treatment. The nurse may check how much oxygen is ...

  13. The Changes of Ethical Dilemmas in Palliative Care. A Lesson Learned from Comparison Between 1998 and 2013 in Taiwan.

    Science.gov (United States)

    Chih, An-Hsuan; Su, Peijen; Hu, Wen-Yu; Yao, Chien-An; Cheng, Shao-Yi; Lin, Yen-Chun; Chiu, Tai-Yuan

    2016-01-01

    The current ethical dilemmas met by healthcare professionals were never compared with those 15 years ago when the palliative care system was newly developing in Taiwan. The aim of the study was to investigate the ethical dilemmas met by palliative care physicians and nurses in 2013 and compare the results with the survey in 1998. This cross-sectional study surveyed 213 physicians and nurses recruited from 9 representative palliative care units across Taiwan in 2013. The compared survey in 1998 studied 102 physicians and nurses from the same palliative care units. All participants took a questionnaire to survey the "frequency" and "difficulty" of 20 frequently encountered ethical dilemmas, which were grouped into 4 domains by factor analysis. The "ethical dilemma" scores were calculated and then compared across 15 years by Student's t tests. A general linear model analysis was used to identify significant factors relating to a high average "ethical dilemma" score in each domain. All of the highest-ranking ethical dilemmas in 2013 were related to insufficient resources. Physicians with less clinical experience had a higher average "ethical dilemma" score in clinical management. Physicians with dissatisfaction in providing palliative care were associated a higher average "ethical dilemma" score in communication. Nurses reported higher "ethical dilemma" scores in all items of resource allocation in 2013. Further analysis confirmed that, in 2013, nurses had a higher average "ethical dilemma" score in resource allocation after adjustment for other relating factors. Palliative care nursing staff in Taiwan are more troubled by ethical dilemmas related to insufficient resources than they were 15 years ago. Training of decision making in nurses under the framework of ethical principles and community palliative care programs may improve the problems. To promote the dignity of terminal cancer patients, long-term fundraising plans are recommended for countries in which the

  14. Impact of Oncologists’ Attitudes Toward End-of-Life Care on Patients’ Access to Palliative Care

    Science.gov (United States)

    Cerana, Maria Agustina; Park, Minjeong; Hess, Kenneth; Bruera, Eduardo

    2016-01-01

    Background. It is unclear how oncologists’ attitudes toward end-of-life (EOL) care affect the delivery of care. The present study examined the association between oncologists’ EOL care attitudes and (a) timely specialist palliative care referral, (b) provision of supportive care, and (c) EOL cancer treatment decisions. Methods. We randomly surveyed 240 oncology specialists at our tertiary care cancer center to assess their attitudes toward EOL care using a score derived from the Jackson et al. qualitative conceptual framework (0 = uncomfortable and 8 = highly comfortable with EOL care). We determined the association between this score and clinicians’ report of specialist palliative care referral, provision of supportive care, and EOL cancer treatment decisions. Results. Of the 182 respondents (response rate of 76%), the median composite EOL care score was 6 (interquartile range, 5–7). A higher EOL score was significantly associated with solid tumor oncology (median 7 vs. 6 for hematologic oncology; p = .003), a greater willingness to refer patients with newly diagnosed cancer to specialist palliative care (median, 7 vs. 6; p = .01), greater comfort with symptom management (median, 6 vs. 5; p = .01), and provision of counseling (median, 7 vs. 4; p EOL care was associated with higher rates of specialist palliative care referral and self-reported primary palliative care delivery. More support and education are needed for oncologists who are less comfortable with EOL care. Implications for Practice: In the present survey of oncology specialists, most reported that they were comfortable with end-of-life (EOL) care, which was in turn, associated with greater provision of primary palliative care and higher rates of referral to specialist palliative care. The results of the present study highlight the need for more support and education for oncologists less comfortable with EOL care because their patients might receive lower levels of both primary and secondary

  15. Pediatric Palliative Care Resources for You | NIH MedlinePlus the Magazine

    Science.gov (United States)

    ... Pediatric Palliative Care Resources for You Follow us Pediatric Palliative Care Resources for You Dealing with a ... The National Institute of Nursing Research (NINR) offers pediatric palliative care resources to help you, your family, ...

  16. Smarter palliative care for cancer: Use of smartphone applications

    Directory of Open Access Journals (Sweden)

    Nisha Rani Jamwal

    2016-01-01

    Full Text Available Smartphones are technologically advanced mobile phone devices which use software similar to computer-based devices as a user-friendly interface. This review article is aimed to inform the palliative care professionals, cancer patients and their caregivers about the role of smartphone applications (apps in the delivery of palliative care services, through a brief review of existing literature on the development, feasibility, analysis, and effectiveness of such apps. There is a dearth need for sincere palliative care clinicians to work together with software professionals to develop the suitable smartphone apps in accordance with the family/caregivers' necessities and patients' biopsychosocial characteristics that influence the technology driven evidence informed palliative cancer care.

  17. Mobile Technology Applications in Cancer Palliative Care.

    Science.gov (United States)

    Freire de Castro Silva, Sandro Luís; Gonçalves, Antônio Augusto; Cheng, Cezar; Fernandes Martins, Carlos Henrique

    2018-01-01

    Mobile devices frequently used in other specialties can find great utility in palliative care. For healthcare professionals, the use of mobile technology not only can bring additional resources to the care, but it can actually radically change the cancer remote care practices. The Brazilian National Cancer Institute (INCA) has developed the largest cancer home care program in Latin America, which currently benefits more than 500 patients. The purpose of this paper is to show the development of an ICT environment of mobile applications developed to support the palliative cancer care program at INCA.

  18. Knowledge in palliative care of nursing professionals at a Spanish hospital

    Directory of Open Access Journals (Sweden)

    Elena Chover-Sierra

    2017-10-01

    Full Text Available Resume Objective: to determine the level of knowledge in palliative care of nursing staff at a Spanish tertiary care hospital. Method: descriptive, cross-sectional study. Data were collected about the results of the Spanish version of the Palliative Care Quiz for Nurses (PCQN, sociodemographic aspects, education level and experience in the field of palliative care. Univariate and bivariate descriptive analysis was applied. Statistical significance was set at p < 0.05 in all cases. Results: 159 professionals participated (mean age 39.51 years ± 10.25, with 13.96 years ± 10.79 of professional experience 54.7% possessed experience in palliative care and 64.2% educational background (mainly basic education. The mean percentage of hits on the quiz was 54%, with statistically significant differences in function of the participants’ education and experience in palliative care. Conclusions: although the participants show sufficient knowledge on palliative care, they would benefit from a specific training program, in function of the mistaken concepts identified through the quiz, which showed to be a useful tool to diagnose professionals’ educational needs in palliative care.

  19. Development and Implementation of a Pediatric Palliative Care Program in a Developing Country

    Directory of Open Access Journals (Sweden)

    Megan Doherty

    2018-04-01

    Full Text Available BackgroundPalliative care is recognized as an important component of care for children with cancer and other life-limiting conditions. In resource limited settings, palliative care is a key component of care for children with cancer and other life-limiting conditions. Globally, 98% of children who need palliative care live in low- or middle-income countries, where there are very few palliative care services available. There is limited evidence describing the practical considerations for the development and implementation of sustainable and cost-effective palliative care services in developing countries.ObjectivesOur aim is to describe the key considerations and initiatives that were successful in planning and implementing a hospital-based pediatric palliative care service specifically designed for a resource-limited setting.SettingBangabandu Sheikh Mujib Medical University (BSMMU is a tertiary referral hospital in Bangladesh. Local palliative care services are very limited and focused on adult patients. In partnership with World Child Cancer, a project establishing a pediatric palliative care service was developed for children with cancer at BSMMU.ResultsWe describe four key elements which were crucial for the success of this program: (1 raising awareness and sensitizing hospital administrators and clinical staff about pediatric palliative care; (2 providing education and training on pediatric palliative care for clinical staff; (3 forming a pediatric palliative care team; and (4 collecting data to characterize the need for pediatric palliative care.ConclusionThis model of a hospital-based pediatric palliative care service can be replicated in other resource-limited settings and can be expanded to include children with other life-limiting conditions. The development of pilot programs can generate interest among local physicians to become trained in pediatric palliative care and can be used to advocate for the palliative care needs of children.

  20. Organisation and Evaluation of General Palliative Care in a Danish Hospital

    DEFF Research Database (Denmark)

    Bergenholtz, Heidi; Hølge-Hazelton, Bibi; Jarlbæk, Lene

    2015-01-01

    and evaluation of generalist palliative care in hospitals. Therefore the aim of the study was to investigate the organization and evaluation of generalist palliative care in a large regional hospital by comparing results from existing evaluations. Methods: Results from three different data sets, all aiming...... of palliative care in order to identify concordances and/or discrepancies. Results: The triangulation indicated poor validity of the results from existing methods used to evaluate palliativecare in hospitals. When the datasets were compared, several discrepancies occurred with regard to the organizationand...... the performance of generalist palliative care. Five types of discrepancies were found in 35 out of 56 sections inthe fulfilment of the national accreditation standard for palliative care. Responses from the hospital management and the department managements indicated that generalist palliative care was organized...

  1. World Health Organization Public Health Model: A Roadmap for Palliative Care Development.

    Science.gov (United States)

    Callaway, Mary V; Connor, Stephen R; Foley, Kathleen M

    2018-02-01

    The Open Society Foundation's International Palliative Care Initiative (IPCI) began to support palliative care development in Central and Eastern Europe and the Former Soviet Union in 1999. Twenty-five country representatives were invited to discuss the need for palliative care in their countries and to identify key areas that should be addressed to improve the care of adults and children with life-limiting illnesses. As a public health concern, progress in palliative care requires integration into health policy, education and training of health care professionals, availability of essential pain relieving medications, and health care services. IPCI created the Palliative Care Roadmap to serve as a model for government and/or nongovernment organizations to use to frame the necessary elements and steps for palliative care integration. The roadmap includes the creation of multiple Ministry of Health-approved working groups to address: palliative care inclusion in national health policy, legislation, and finance; availability of essential palliative care medications, especially oral opioids; education and training of health care professionals; and the implementation of palliative care services at home or in inpatient settings for adults and children. Each working group is tasked with developing a pathway with multiple signposts as indicators of progress made. The roadmap may be entered at different signposts depending upon the state of palliative care development in the country. The progress of the working groups often takes place simultaneously but at variable rates. Based on our experience, the IPCI Roadmap is one possible framework for palliative care development in resource constrained countries but requires both health care professional engagement and political will for progress to be made. Copyright © 2017. Published by Elsevier Inc.

  2. Establishment and preliminary outcomes of a palliative care research network.

    Science.gov (United States)

    Hudson, Peter; Street, Annette; Graham, Suzanne; Aranda, Sanchia; O'Connor, Margaret; Thomas, Kristina; Jackson, Kate; Spruyt, Odette; Ugalde, Anna; Philip, Jennifer

    2016-02-01

    The difficulties in conducting palliative care research have been widely acknowledged. In order to generate the evidence needed to underpin palliative care provision, collaborative research is considered essential. Prior to formalizing the development of a research network for the state of Victoria, Australia, a preliminary study was undertaken to ascertain interest and recommendations for the design of such a collaboration. Three data-collection strategies were used: a cross-sectional questionnaire, interviews, and workshops. The questionnaire was completed by multidisciplinary palliative care specialists from across the state (n = 61); interviews were conducted with senior clinicians and academics (n = 21) followed by two stakeholder workshops (n = 29). The questionnaire was constructed specifically for this study, measuring involvement of and perceptions of palliative care research. Both the interview and the questionnaire data demonstrated strong support for a palliative care research network and aided in establishing a research agenda. The stakeholder workshops assisted with strategies for the formation of the Palliative Care Research Network Victoria (PCRNV) and guided the development of the mission and strategic plan. The research and efforts to date to establish the PCRNV are encouraging and provide optimism for the evolution of palliative care research in Australia. The international implications are highlighted.

  3. Identifying palliative care issues in inpatients dying following stroke.

    Science.gov (United States)

    Ntlholang, O; Walsh, S; Bradley, D; Harbison, J

    2016-08-01

    Stroke leads to high mortality and morbidity but often there is a conflict between need for palliative care and avoidance of 'therapeutic nihilism'. We aimed to elicit the palliative care needs of stroke patients at the end of their lives in our unit with a low overall mortality rate (1 month: 8.8 %, inpatient: 12.9 %). We identified consecutive stroke patients who died over 2 years. Their clinical records were used for data collection. Of 54 deaths, 33 (61.1 %) were females, mean (SD) age at death was 79.3 ± 12.9 years. 41 (75.9 %) died after first stroke, 9 (16.7 %) were inpatient strokes, 7 (13.0 %) thrombolysed and 7 (13.0 %) had strokes as treatment complication. There were clear statements recorded in 26 (48.1 %) that patients were dying and death was thought to be due primarily to extent of brain injury in 24 (44.4 %). Palliative needs identified included dyspnoea 21 (38.9 %), pain 17 (31.5 %), respiratory secretions 17 (31.5 %), agitation 14 (25.9 %) and psychological distress 1 (1.9 %). Symptoms were due to premorbid diseases in 6 (11.1 %). Palliative care expertise were sought in 13 (24.1 %) and continuous subcutaneous infusion was used in 18 (33.3 %) to control symptoms. 4 (7.4 %) subjects underwent cardiac arrest calls and 9 (16.7 %) deaths occurred in ICU/HDU. The median Stroke-Death interval was 20 days (range 0-389). Do Not Attempt Resuscitation (DNAR) orders were in place in 86.8 % of patients. The median DNAR-Death interval was 7 days (range 0-311) with 7-day DNAR-Death rate of 53.2 % and 30-day of 78.7 % of the total deaths. Dyspnoea, pain and respiratory secretions were identified as the main palliative care needs.

  4. The role of dentist in palliative care team

    Directory of Open Access Journals (Sweden)

    Rani P Mol

    2010-01-01

    Full Text Available The palliative doctor gives the ′touch of God′ as he/she takes care of the terminally ill patient. The oncologist encounters great difficulties in managing oral cavity problems of these patients. A trained dental doctor can help other doctors in dealing with these situations. But the general dental surgeon does not have enough idea about his part in these treatments. The community is also unaware of the role that a nearby dentist can play. Adequate training programs have to be conducted and awareness has to be created. A trained dentist will be a good team mate for the oncologist or radiotherapist or other doctors of the palliative care team. In this paper, a brief attempt is made to list a few areas in which a palliative care dentist can help other members of the palliative care team and also the patient in leading a better life.

  5. Ideology and Palliative Care: Moral Hazards at the Bedside.

    Science.gov (United States)

    Rhodes, Rosamond; Strain, James J

    2018-01-01

    Palliative care has had a long-standing commitment to teaching medical students and other medical professionals about pain management, communication, supporting patients in their decisions, and providing compassionate end-of-life care. Palliative care programs also have a critical role in helping patients understand medical conditions, and in supporting them in dealing with pain, fear of dying, and the experiences of the terminal phase of their lives. We applaud their efforts to provide that critical training and fully support their continued important work in meeting the needs of patients and families. Although we appreciate the contributions of palliative care services, we have noted a problem involving some palliative care professionals' attitudes, methods of decisionmaking, and use of language. In this article we explain these problems by discussing two cases that we encountered.

  6. Practice Patterns, Attitudes, and Barriers to Palliative Care Consultation by Gynecologic Oncologists.

    Science.gov (United States)

    Buckley de Meritens, Alexandre; Margolis, Benjamin; Blinderman, Craig; Prigerson, Holly G; Maciejewski, Paul K; Shen, Megan J; Hou, June Y; Burke, William M; Wright, Jason D; Tergas, Ana I

    2017-09-01

    We sought to describe practice patterns, attitudes, and barriers to the integration of palliative care services by gynecologic oncologists. Members of the Society of Gynecologic Oncology were electronically surveyed regarding their practice of incorporating palliative care services and to identify barriers for consultation. Descriptive statistics were used, and two-sample z-tests of proportions were performed to compare responses to related questions. Of the 145 respondents, 71% were attending physicians and 58% worked at an academic medical center. The vast majority (92%) had palliative care services available for consultation at their hospital; 48% thought that palliative care services were appropriately used, 51% thought they were underused, and 1% thought they were overused. Thirty percent of respondents thought that palliative care services should be incorporated at first recurrence, whereas 42% thought palliative care should be incorporated when prognosis for life expectancy is ≤ 6 months. Most participants (75%) responded that palliative care consultation is reasonable for symptom control at any stage of disease. Respondents were most likely to consult palliative care services for pain control (53%) and other symptoms (63%). Eighty-three percent of respondents thought that communicating prognosis is the primary team's responsibility, whereas the responsibilities for pain and symptom control, resuscitation status, and goals of care discussions were split between the primary team only and both teams. The main barrier for consulting palliative care services was the concern that patients and families would feel abandoned by the primary oncologist (73%). Ninety-seven percent of respondents answered that palliative care services are useful to improve patient care. The majority of gynecologic oncologists perceived palliative care as a useful collaboration that is underused. Fear of perceived abandonment by the patient and family members was identified as a

  7. The diverse landscape of palliative care clinics.

    Science.gov (United States)

    Smith, Alexander K; Thai, Julie N; Bakitas, Marie A; Meier, Diane E; Spragens, Lynn H; Temel, Jennifer S; Weissman, David E; Rabow, Michael W

    2013-06-01

    Many health care organizations are interested in instituting a palliative care clinic. However, there are insufficient published data regarding existing practices to inform the development of new programs. Our objective was to obtain in-depth information about palliative care clinics. We conducted a cross-sectional survey of 20 outpatient palliative care practices in diverse care settings. The survey included both closed- and open-ended questions regarding practice size, utilization of services, staffing, referrals, services offered, funding, impetus for starting, and challenges. Twenty of 21 (95%) practices responded. Practices self-identified as: hospital-based (n=7), within an oncology division/cancer center (n=5), part of an integrated health system (n=6), and hospice-based (n=2). The majority of referred patients had a cancer diagnosis. Additional common diagnoses included chronic obstructive pulmonary disease, neurologic disorders, and congestive heart failure. All practices ranked "pain management" and "determining goals of care" as the most common reasons for referrals. Twelve practices staffed fewer than 5 half-days of clinic per week, with 7 operating only one half-day per week. Practices were staffed by a mixture of physicians, advanced practice nurses or nurse practitioners, nurses, or social workers. Eighteen practices expected their practice to grow within the next year. Eleven practices noted a staffing shortage and 8 had a wait time of a week or more for a new patient appointment. Only 12 practices provide 24/7 coverage. Billing and institutional support were the most common funding sources. Most practices described starting because inpatient palliative providers perceived poor quality outpatient care in the outpatient setting. The most common challenges included: funding for staffing (11) and being overwhelmed with referrals (8). Once established, outpatient palliative care practices anticipate rapid growth. In this context, outpatient practices

  8. Palliative Care Edema: Patient Population, Causal Factors, and Types of Edema Referred to a Specialist Palliative Care Edema Service.

    Science.gov (United States)

    Real, Shirley; Cobbe, Sinead; Slattery, Sinead

    2016-07-01

    Edema in palliative care patients is a common symptom, however, the research base for all aspects of its care is extremely poor. To evaluate a specialist palliative care edema service in order to report on the patient population referred, the types of edema encountered, and the causes of edema. Prior to study, three different edema types were described for evaluation: lymphedema, nonlymphatic edema, and a combination of the two. Retrospective chart evaluation was completed from August 2013 through January 2014. Patients with edema assessed by the specialist palliative care physiotherapy edema service. Sixty-three cases were included, comprising 10.5% of all new palliative care referrals during the study period. Ninety-two percent (n = 58) had a diagnosis of cancer and 57% (n = 36) were female. Age ranged from 45-97 years. The most common edema type was a mixed edema (46%, n = 29), followed by lymphedema (27%, n = 18) and nonlymphatic edema (16%, n = 10). Lymphorrhea occurred in 9.5% of cases. The most common reasons for edema, based on clinical opinion, were blocked lymphatics (33%) and dependency from immobility (27%). The most common site for edema was in the lower limbs (89%, n = 56). The time lapse from the last treatment to death ranged from 1-225 days. Having a mixed edema type or lymphorrhea was a relatively poor prognostic sign. This is the first study to describe in detail the occurrence of edema in palliative care patients. Edema may be present for many months prior to death making the search for effective treatments imperative.

  9. Prescription Pattern of Analgesic Drugs for Patients Receiving Palliative Care in a Teaching Hospital in India.

    Science.gov (United States)

    Menezes, Vishma Hydie; Nair, Shoba N; Soumya, M S; Tarey, S D

    2016-01-01

    Drugs used in the palliative care unit for managing symptoms are major contributors toward the expenditure occurring in palliative care. This study was conducted to understand the prescription pattern of analgesic drugs in the patients who are receiving palliative care in a teaching hospital in India by a retrospective study of case records. Case record based, retrospective, descriptive study was conducted at the Pain and Palliative Care Department of St. John's Medical College Hospital, Bengaluru. Case record files of all patients referred to Pain and Palliative Care Department for the treatment of pain in the year of 2012 were studied. Patients' age, gender, diagnoses, numerical pain rating scale (0-10), drugs prescribed, dosage, frequency, route of administration were recorded. The difference in drug utilization between the genders was done using Chi-square test. Data were collected from 502 patients of which 280 (56%) were males and 222 (44%) were females. Twelve percent of patients had mild pain (1-3), 34% had moderate pain (4-6), and 54% had severe pain (7-10). The most commonly used analgesic drugs were opioids (47%), followed by nonsteroidal anti-inflammatory drugs (36%). The opioids used were tramadol (56%), and morphine (38%). Ninety percent of patients with numerical pain scale more than 6 received morphine. There was no difference in analgesic drug utilization with regards to gender. Prescription pattern differed depending on the severity of pain. Opioids were the most commonly used drugs for pain management. The study shows that prescription pattern in palliative care unit of this hospital was in accordance with WHO pain management guidelines. The study showed the current trend in prescription of analgesic drugs in the teaching hospital where the study was conducted.

  10. A prospective study on the characteristics and subjects of pediatric palliative care case management provided by a hospital based palliative care team

    NARCIS (Netherlands)

    Jagt-van Kampen, Charissa T.; Kars, Marijke C.; Colenbrander, Derk A.; Bosman, Diederik K.; Grootenhuis, Martha A.; Caron, Huib N.; Schouten-van Meeteren, Antoinette Y. N.

    2017-01-01

    Case management is a subject of interest within pediatric palliative care. Detailed descriptions of the content of this type of case management are lacking. We aim to describe the contents of care provided, utilization of different disciplines, and times of usage of a pediatric palliative care case

  11. Palliative care for Parkinson's disease: Patient and carer's perspectives explored through qualitative interview.

    Science.gov (United States)

    Fox, Siobhan; Cashell, Alison; Kernohan, W George; Lynch, Marie; McGlade, Ciara; O'Brien, Tony; O'Sullivan, Sean S; Foley, Mary J; Timmons, Suzanne

    2017-07-01

    Palliative care is recommended for non-malignant illnesses, including Parkinson's disease. However, past research with healthcare workers highlights unmet palliative needs in this population and referral rates to Specialist Palliative Care are low. Some healthcare workers perceive a 'fear' in their patients about introducing palliative care. However, less is known about the views of people with Parkinson's disease and their carers about palliative care. (1) To explore the palliative care and related issues most affecting people with Parkinson's disease and their families and (2) to examine perceptions about/understanding of palliative care. This was a qualitative study; semi-structured interviews were conducted, transcribed and analysed using thematic analysis. A total of 31 people participated, both people with Parkinson's disease ( n = 19) and carers ( n = 12), across three Movement Disorder Clinics in the Republic of Ireland. People with Parkinson's disease and their carers were unfamiliar with the term palliative care. When informed of the role of palliative care, most felt that they would benefit from this input. People with Parkinson's disease and carers experienced a high illness burden and wanted extra support. Crises requiring Specialist Palliative Care involvement may occur at diagnosis and later, with advancing illness. Participants wanted more information about palliative care and especially further supports to address their psychosocial needs. A holistic palliative care approach could address the complex physical and psychosocial symptoms experienced by people with Parkinson's disease and their carers, and people with Parkinson's disease and their carers are open to palliative care. Further research needs to explore how palliative care can be introduced into the routine care for people with Parkinson's disease.

  12. Palliative care and elderly health in Brazil

    Directory of Open Access Journals (Sweden)

    Angela Maria Amaral Soares Abou Ali

    2011-09-01

    Full Text Available In recent years elderly population is increasing substantially, about 650,000 per year, as well as the concept of unifamílies, ie, families consisting of a single person. In this paper, is proposed a reflection about health of elderly in Brazil, and the conditions of a chronic disease and its acute state - terminal. In the actual society, capitalist and capitalized, the individual is valued by his production, losing his value when acquires a disabling illnesses. There is a growing need for work, and each time there is less time and resources to manage the permanence of an elderly patient at home, or pay for a caregiver. This situation leads families to resort to hospitalization, which in turn makes the hospitals overcrowded with patients in this state, affecting both emergency care as the treatment of chronic patients. This fact occurs due to lack of hospital infrastructure, as well by the lack of units of the healthy system capable of providing palliative care. The questioning about the elderly who need palliative care, and reflection about the type of care dispended for this kind of patient, should be the focal point of professional's reflections, capable to lead him to a new way of thinking and, consequently, to inspire him to act in a new way.

  13. Measuring relatives’ perspectives on the quality of palliative care: the Consumer Quality Index Palliative Care.

    NARCIS (Netherlands)

    Claessen, S.J.J.; Francke, A.L.; Sixma, H.J.; Veer, A.J.E. de; Deliens, L.

    2013-01-01

    Context: A Consumer Quality Index (CQ-index) is a questionnaire assessing the actual care experiences and how important the recipient finds certain care aspects, as well as the priorities for improving quality. A CQ-index Palliative Care (CQ-index PC) for bereaved relatives was developed to measure

  14. Psyche at the end of life: Psychiatric symptoms are prevalent in patients admitted to a palliative care unit.

    Science.gov (United States)

    Masel, Eva K; Berghoff, Anna S; Mladen, Aleksandra; Schur, Sophie; Maehr, Bruno; Kirchhoff, Magdalena; Simanek, Ralph; Bauer, Martin; Watzke, Herbert H; Amering, Michaela

    2016-06-01

    Our aim was to evaluate the frequency and treatment of psychiatric symptoms in patients at palliative care units (PCUs). Patients admitted to one of five participating PCUs in Austria were included. The short version of the Patient Health Questionnaire (PHQ-D) was used to evaluate their mental health status. Pain intensity was rated on a numeric rating scale (NRS) from 0 to 10 by patients and physicians. Patients with a previously diagnosed psychiatric disorder were compared to those without or with newly diagnosed psychiatric symptoms, based on PHQ-D results. Pain and psychopharmacological medication were assessed. Opioid doses were converted into oral morphine equivalents (OMEs). Some 68 patients were included. Previously undetected psychiatric symptoms were identified in 38% (26 of 68), preexisting psychiatric comorbidities were evident in 25% (17), and no psychiatric symptoms were observed in 37% (25). Patients with a preexisting psychiatric comorbidity received antidepressants and benzodiazepines significantly more often than patients without or with previously undetected psychiatric symptoms (p < 0.001). Patient and physician median NRS ratings of pain intensity correlated significantly (p = 0.001). Median NRS rating showed no significant difference between patients with preexisting, previously undetected, or without psychiatric symptoms. OMEs did not differ significantly between preexisting, without, or previously undetected psychiatric symptoms. Patients with undetected and preexisting psychiatric comorbidities had a greater impairment in their activities of daily living than patients without psychiatric symptoms (p = 0.003). Undetected psychiatric comorbidities are common in patients receiving palliative care. Screening for psychiatric symptoms should be integrated into standard palliative care to optimize treatment and reduce the psychosocial burden of the disease.

  15. Improved knowledge of and difficulties in palliative care among physicians during 2008 and 2015 in Japan: Association with a nationwide palliative care education program.

    Science.gov (United States)

    Nakazawa, Yoko; Yamamoto, Ryo; Kato, Masashi; Miyashita, Mitsunori; Kizawa, Yoshiyuki; Morita, Tatsuya

    2018-02-01

    Palliative care education for health care professionals is a key element in improving access to quality palliative care. The Palliative Care Emphasis Program on Symptom Management and Assessment for Continuous Medical Education (PEACE) was designed to provide educational opportunities for all physicians in Japan. As of 2015, 57,764 physicians had completed it. The objective of this study was to estimate the effects of the program. This study was an analysis of 2 nationwide observational studies from 2008 and 2015. We conducted 2 questionnaire surveys for representative samples of physicians. The measurements used were the Palliative Care Knowledge Test (range, 0-100) and the Palliative Care Difficulties Scale (range, 1-4). Comparisons were made with the unpaired Student t test and with a multivariate linear regression model using 2 cohorts and a propensity score-matched sample. This study analyzed a total of 48,487 physicians in 2008 and a total of 2720 physicians in 2015. Between 2008 and 2015, physicians' knowledge and difficulties significantly improved on the Palliative Care Knowledge Test with total scores of 68 and 78, respectively (P PEACE program had a higher knowledge score (74 vs 86; P PEACE program may have contributed to these improvements. Cancer 2018;124:626-35. © 2017 American Cancer Society. © 2017 American Cancer Society.

  16. Culture and Palliative Care: Preferences, Communication, Meaning, and Mutual Decision Making.

    Science.gov (United States)

    Cain, Cindy L; Surbone, Antonella; Elk, Ronit; Kagawa-Singer, Marjorie

    2018-05-01

    Palliative care is gaining acceptance across the world. However, even when palliative care resources exist, both the delivery and distribution of services too often are neither equitably nor acceptably provided to diverse population groups. The goal of this study was to illustrate tensions in the delivery of palliative care for diverse patient populations to help clinicians to improve care for all. We begin by defining and differentiating culture, race, and ethnicity, so that these terms-often used interchangeably-are not conflated and are more effectively used in caring for diverse populations. We then present examples from an integrative literature review of recent research on culture and palliative care to illustrate both how and why varied responses to pain and suffering occur in different patterns, focusing on four areas of palliative care: the formation of care preferences, communication patterns, different meanings of suffering, and decision-making processes about care. For each area, we provide international and multiethnic examples of variations that emphasize the need for personalization of care and the avoidance of stereotyping beliefs and practices without considering individual circumstances and life histories. We conclude with recommendations for improving palliative care research and practice with cultural perspectives, emphasizing the need to work in partnerships with patients, their family members, and communities to identify and negotiate culturally meaningful care, promote quality of life, and ensure the highest quality palliative care for all, both domestically and internationally. Copyright © 2018 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

  17. Teleconsultation for integrated palliative care at home: A qualitative study

    NARCIS (Netherlands)

    van Gurp, J.; van Selm, M.; van Leeuwen, E.; Vissers, K.; Hasselaar, J.

    2016-01-01

    Background: Interprofessional consultation contributes to symptom control for home-based palliative care patients and improves advance care planning. Distance and travel time, however, complicate the integration of primary care and specialist palliative care. Expert online audiovisual

  18. Singing and Vocal Interventions in Palliative and Cancer Care: Music Therapists' Perceptions of Usage.

    Science.gov (United States)

    Clements-Cortés, Amy

    2017-11-01

    Music therapists in palliative and cancer care settings often use singing and vocal interventions. Although benefits for these interventions are emerging, more information is needed on what type of singing interventions are being used by credentialed music therapists, and what goal areas are being addressed. To assess music therapists' perceptions on how they use singing and vocal interventions in palliative and cancer care environments. Eighty credentialed music therapists from Canada and the United States participated in this two-part convergent mixed-methods study that began with an online survey, followed by individual interviews with 50% (n = 40) of the survey participants. In both palliative and cancer care, singing client-preferred music and singing for relaxation were the most frequently used interventions. In palliative care, the most commonly addressed goals were to increase self-expression, improve mood, and create a feeling of togetherness between individuals receiving palliative care and their family. In cancer care, the most commonly addressed goals were to support breathing, improve mood, and support reminiscence. Seven themes emerged from therapist interviews: containing the space, connection, soothing, identity, freeing the voice within, letting go, and honoring. Music therapists use singing to address the physical, emotional, social, and spiritual goals of patients, and described singing interventions as accessible and effective. Further research is recommended to examine intervention efficacy and identify factors responsible that contribute to clinical benefit. © the American Music Therapy Association 2017. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com

  19. Palliative care nursing education features more prominently in 2015 than 2005: Results from a nationwide survey and qualitative analysis of curricula.

    Science.gov (United States)

    Martins Pereira, Sandra; Hernández-Marrero, Pablo

    2016-10-01

    Making palliative care accessible to all citizens who are in need of this type of care requires effective policies and education. Moreover, healthcare professionals have an ethical and legal responsibility to ensure quality palliative care. Nevertheless, palliative care has had traditionally a limited emphasis in healthcare professionals' undergraduate education. To study the current status of palliative care education in nursing undergraduate curricula and compare 2005 and 2015 findings. An online survey was sent to all state schools providing nursing undergraduate education in Portugal (N = 21). The survey assessed if and how palliative care was included in the curricula, and whether or not national and international recommendations for palliative care nursing education were followed. Further analysis included the content of available curricula/syllabi. A total of 19 schools completed the survey (90% of response rate). These institutions are geographically dispersed and representative of state nursing educational institutions in Portugal. In 2015, all participant schools integrated palliative care in their curricula; nine schools had palliative care as an independent curricular unit (an 800% increase compared to 2005). While in 2005, only 14 out of 23 (61%) schools included palliative care explicitly in their curricula; in 2015, all 19 participant schools did so. National and international recommendations were followed. The inclusion of palliative care within nursing undergraduate curricula strongly increased from 2005 to 2015. Further research is needed to understand the contribution of education in the access, care provision, quality and development of palliative care in this country. © The Author(s) 2016.

  20. Niveles de estrés en el personal de enfermería de unidades de cuidados paliativos Stress levels on nursing staff of palliative care units

    Directory of Open Access Journals (Sweden)

    Cristina Gómez Cantorna

    2012-06-01

    Full Text Available Mediante este estudio, nos gustaría saber cuál es el nivel de estrés que padecen las enfermeras, que trabajan en unidades de cuidados paliativos. Para ello hemos elegido una muestra de 94 enfermeras del SERGAS (Servicio Galego de Saúde, de las distintas unidades de cuidados paliativos, utilizando un cuestionario de datos sociodemográficos y organizacionales junto con el Maslach Burnout Inventory, como instrumentos evaluatorios. Después del análisis de los datos observamos que el personal de enfermería que trabaja en dichas unidades de cuidados paliativos, no presenta un nivel de estrés tan elevado como el que nosotros planteábamos al principio de nuestro estudio.Through this study, we would like to know what level of stress experienced by nurses working in palliative care units. We have chosen a sample of 94 nurses of SERGAS (Servicio Galego de las Saúde of the different palliative care units, using a questionnaire on demographic and organizational data with the Maslach Burnout Inventory, for assessment tools. After analyzin the dat we note that the nursing staff working in this departament of palliative care, no estres levels as high as we posed at the beginning of our study.

  1. Humor Assessment and Interventions in Palliative Care: A Systematic Review

    Directory of Open Access Journals (Sweden)

    Lisa M. Linge-Dahl

    2018-06-01

    Full Text Available Background: The central goal of palliative care is to optimize the quality of life of patients suffering from life-limiting illnesses, which includes psychosocial and spiritual wellbeing. Research has demonstrated positive correlations between humor and laughter with life satisfaction and other aspects of wellbeing, and physiological symptoms can be improved by humorous stimuli.Objectives: The aim of this review is to evaluate humor interventions and assessments that have been applied in palliative care and to derive implications for future research.Methods: A systematic review of four databases identified 13 included studies. Criteria for inclusion were peer-reviewed English-language studies on humor interventions or assessments in a palliative care context.Results: Two studies on humor interventions and 11 studies on humor assessment were included in the systematic review. Most of these studies were about the patients' perspective on humor in palliative care. Findings showed that humor had a positive effect on patients, their relatives, and professional caregivers. Humor was widely perceived as appropriate and seen as beneficial to care in all studies.Conclusions: Even though humor interventions seem to be potentially useful in palliative care, descriptions evaluating their use are scarce. Overall, research on humor assessment and interventions in palliative care has remained limited in terms of quantity and quality. More research activities are needed to build a solid empirical foundation for implementing humor and laughter as part of regular palliative care activities.

  2. The perceived impact of public involvement in palliative care in a provincial palliative care network in the Netherlands : a qualitative study

    NARCIS (Netherlands)

    Henk van Rijswijk; Esther Stoffers; Anna Beurskens; M. Beckers; F.A. Haarsma; Albine Moser

    2015-01-01

    Background and objective Public involvement in palliative care is challenging and difficult, because people in need of palliative care are often not capable of speaking up for themselves. Patient representatives advocate for their common interests. The aim of our study was to examine in depth the

  3. Postgraduate palliative care education: Evaluation of a South ...

    African Journals Online (AJOL)

    Aim. We aimed to assess the postgraduate palliative care distance education programme of the University of Cape Town (UCT) in terms of its perceived ability to influence palliative care delivery. Methods. A mixed-methods approach, consisting of two surveys using open-ended and multiple-choice options, was conducted ...

  4. Palliative care awareness amongst religious leaders and seminarians

    African Journals Online (AJOL)

    Introduction: There exists scanty literature on the awareness of Nigerians towards palliative care. This study was conducted to determine the level of awareness of religious leaders and seminarians in Ibadan, Nigeria, on palliative care. Methods: Data obtained from a cross-section of 302 religious leaders and seminarians in ...

  5. Coverage and development of specialist palliative care services across the World Health Organization European Region (2005-2012): Results from a European Association for Palliative Care Task Force survey of 53 Countries.

    Science.gov (United States)

    Centeno, Carlos; Lynch, Thomas; Garralda, Eduardo; Carrasco, José Miguel; Guillen-Grima, Francisco; Clark, David

    2016-04-01

    The evolution of the provision of palliative care specialised services is important for planning and evaluation. To examine the development between 2005 and 2012 of three specialised palliative care services across the World Health Organization European Region - home care teams, hospital support teams and inpatient palliative care services. Data were extracted and analysed from two editions of the European Association for Palliative Care Atlas of Palliative Care in Europe. Significant development of each type of services was demonstrated by adjusted residual analysis, ratio of services per population and 2012 coverage (relationship between provision of available services and demand services estimated to meet the palliative care needs of a population). For the measurement of palliative care coverage, we used European Association for Palliative Care White Paper recommendations: one home care team per 100,000 inhabitants, one hospital support team per 200,000 inhabitants and one inpatient palliative care service per 200,000 inhabitants. To estimate evolution at the supranational level, mean comparison between years and European sub-regions is presented. Of 53 countries, 46 (87%) provided data. Europe has developed significant home care team, inpatient palliative care service and hospital support team in 2005-2012. The improvement was statistically significant for Western European countries, but not for Central and Eastern countries. Significant development in at least a type of services was in 21 of 46 (46%) countries. The estimations of 2012 coverage for inpatient palliative care service, home care team and hospital support team are 62%, 52% and 31% for Western European and 20%, 14% and 3% for Central and Eastern, respectively. Although there has been a positive development in overall palliative care coverage in Europe between 2005 and 2012, the services available in most countries are still insufficient to meet the palliative care needs of the population. © The

  6. Assessing palliative care needs: views of patients, informal carers and healthcare professionals.

    Science.gov (United States)

    McIlfatrick, Sonja

    2007-01-01

    This paper reports a study to assess the palliative care needs of the adult population served by a healthcare provider organization in Northern Ireland from the perspectives of patients, informal carers and healthcare providers. Assessing palliative care need is a key factor for health service planning. Traditionally, palliative care has been associated with end-of-life care and cancer. More recently, the concept has been extended to include care for both cancer and non-cancer populations. Various approaches have been advocated for assessing need, including the exploration of professional provider and user perspectives of need. Semi-structured qualitative interviews were undertaken with a purposive sample of patients and lay carers receiving palliative care services (n = 24). Focus groups were also conducted with multi-professional palliative care providers (n = 52 participants) and face to face interviews were undertaken with key managerial stakeholders in the area (n = 7). The focus groups and interviews concentrated on assessment of palliative care need. All the interviews were transcribed verbatim and analysed using Burnard's framework. Professional providers experienced difficulty in defining the term palliative care. Difficulties in communication and information exchange, and fragmented co-ordination between services were identified. The main areas of need identified by all participants were social and psychological support; financial concerns; and the need for choice and information. All participants considered that there was inequity between palliative care service provision for patients with cancer and non-cancer diseases. All patients, regardless of diagnosis, should be able to access palliative care appropriate to their individual needs. For this to happen in practice, an integrated approach to palliative care is essential. The study methodology confirms the value of developing a comprehensive approach to assessing palliative care need.

  7. Developing organisational ethics in palliative care.

    Science.gov (United States)

    Sandman, Lars; Molander, Ulla; Benkel, Inger

    2017-03-01

    Palliative carers constantly face ethical problems. There is lack of organised support for the carers to handle these ethical problems in a consistent way. Within organisational ethics, we find models for moral deliberation and for developing organisational culture; however, they are not combined in a structured way to support carers' everyday work. The aim of this study was to describe ethical problems faced by palliative carers and develop an adapted organisational set of values to support the handling of these problems. Ethical problems were mapped out using focus groups and content analysis. The organisational culture were developed using normative analysis and focus group methodology within a participatory action research approach. Main participants and research context: A total of 15 registered nurses and 10 assistant nurses at a palliative unit (with 19 patient beds) at a major University Hospital in Sweden. Ethical considerations: The study followed standard ethics guidelines concerning informed consent and confidentiality. We found six categories of ethical problems (with the main focus on problems relating to the patient's loved ones) and five categories of organisational obstacles. Based on these findings, we developed a set of values in three levels: a general level, an explanatory level and a level of action strategies. The ethical problems found corresponded to problems in other studies with a notable exception, the large focus on patient loved ones. The three-level set of values is a way to handle risks of formulating abstract values not providing guidance in concrete care voiced in other studies. Developing a three-level set of values adapted to the specific ethical problems in a concrete care setting is a first step towards a better handling of ethical problems.

  8. Why we need more poetry in palliative care.

    Science.gov (United States)

    Davies, Elizabeth A

    2018-03-23

    Although many well-known poems consider illness, loss and bereavement, medicine tends to view poetry more as an extracurricular than as a mainstream pursuit. Within palliative care, however, there has been a long-standing interest in how poetry may help patients and health professionals find meaning, solace and enjoyment. The objective of this paper is to identify the different ways in which poetry has been used in palliative care and reflect on their further potential for education, practice and research. A narrative review approach was used, drawing on searches of the academic literature through Medline and on professional, policy and poetry websites to identify themes for using poetry in palliative care. I identified four themes for using poetry in palliative care. These concerned (1) leadership, (2) developing organisational culture, (3) the training of health professionals and (4) the support of people with serious illness or nearing the end of life. The academic literature was mostly made up of practitioner perspectives, case examples or conceptual pieces on poetry therapy. Patients' accounts were rare but suggested poetry can help some people express powerful thoughts and emotions, create something new and feel part of a community. Poetry is one way in which many people, including patients and palliative care professionals, may seek meaning from and make sense of serious illnesses and losses towards the end of life. It may have untapped potential for developing person-centred organisations, training health professionals, supporting patients and for promoting public engagement in palliative care. © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2018. All rights reserved. No commercial use is permitted unless otherwise expressly granted.

  9. Raising the bar for the care of seriously ill patients: results of a national survey to define essential palliative care competencies for medical students and residents.

    Science.gov (United States)

    Schaefer, Kristen G; Chittenden, Eva H; Sullivan, Amy M; Periyakoil, Vyjeyanth S; Morrison, Laura J; Carey, Elise C; Sanchez-Reilly, Sandra; Block, Susan D

    2014-07-01

    Given the shortage of palliative care specialists in the United States, to ensure quality of care for patients with serious, life-threatening illness, generalist-level palliative care competencies need to be defined and taught. The purpose of this study was to define essential competencies for medical students and internal medicine and family medicine (IM/FM) residents through a national survey of palliative care experts. Proposed competencies were derived from existing hospice and palliative medicine fellowship competencies and revised to be developmentally appropriate for students and residents. In spring 2012, the authors administered a Web-based, national cross-sectional survey of palliative care educational experts to assess ratings and rankings of proposed competencies and competency domains. The authors identified 18 comprehensive palliative care competencies for medical students and IM/FM residents, respectively. Over 95% of survey respondents judged the competencies as comprehensive and developmentally appropriate (survey response rate = 72%, 71/98). Using predefined cutoff criteria, experts identified 7 medical student and 13 IM/FM resident competencies as essential. Communication and pain/symptom management were rated as the most critical domains. This national survey of palliative care experts defines comprehensive and essential palliative care competencies for medical students and IM/FM residents that are specific, measurable, and can be used to report educational outcomes; provide a sequence for palliative care curricula in undergraduate and graduate medical education; and highlight the importance of educating medical trainees in communication and pain management. Next steps include seeking input and endorsement from stakeholders in the broader medical education community.

  10. Intercultural palliative care: do we need cultural competence?

    Science.gov (United States)

    Gunaratnam, Yasmin

    2007-10-01

    Recognition of the importance of 'cultural competence' is now central to health care policy and to nurse education and training across the international spectrum. Detailed engagement with models of cultural competence is comparatively recent in palliative care nursing. This article presents the findings from a development project on elders and carers from 'minority ethnic' groups, funded by the Department of Health, to increase awareness of palliative care and to improve understanding of the needs of these groups of service users. The article describes the experiences of nurses involved in the delivery of palliative care who were interviewed in focus groups as a part of the project. It draws attention to the complicated relationships between cultural knowledge and practice and to the non-rational and visceral dimensions of intercultural care. These aspects of nursing are marginalised in current approaches to cultural competence, which emphasise the rational acquisition and application of cultural knowledge and skills by practitioners. It is suggested that recognition of these marginalised experiences can contribute to the development of new approaches to intercultural nursing that are also more attuned to the ethos and values of palliative care.

  11. Professional competence and palliative care: an ethical perspective.

    Science.gov (United States)

    Olthuis, Gert; Dekkers, Wim

    2003-01-01

    The aim of this article is to explore an ethical view of professional competence by examining the professional competence of physicians in the context of palliative care. A discussion of the four dimensions of professional competence--knowledge, technical skills, relationships, and affective and moral attitude--leads us to the conclusion that "habits of mind" are important in every aspect of professional competence. This observation is then considered in the context of virtue ethics and ethics of care. Virtue ethics focuses on personal qualities and moral attitudes, while the ethics of care concentrates on the way these qualities are lived out in specific care relationships. Our conclusion points up the importance of education in ethics in the development of professional competence, and argues that because palliative care involves intense human interactions, integrating palliative care into the medical curriculum may improve the ethical culture of health care as a whole.

  12. Improving palliative care outcomes for Aboriginal Australians: service providers' perspectives.

    Science.gov (United States)

    Shahid, Shaouli; Bessarab, Dawn; van Schaik, Katherine D; Aoun, Samar M; Thompson, Sandra C

    2013-07-23

    Aboriginal Australians have a lower rate of utilisation of palliative care services than the general population. This study aimed to explore care providers' experiences and concerns in providing palliative care for Aboriginal people, and to identify opportunities for overcoming gaps in understanding between them and their Aboriginal patients and families. In-depth, qualitative interviews with urban, rural and remote palliative care providers were undertaken in inpatient and community settings in Western Australia. Interviews were audio-recorded, transcribed verbatim and coded independently by two researchers with QSR NVivo 10 software used to help manage data. Data analysis was informed by multiple theoretical standpoints, including the social ecological model, critical cultural theories and the 'cultural security' framework. Thematic analysis was carried out that identified patterns within data. Fifteen palliative care providers were interviewed. Overall they reported lack of understanding of Aboriginal culture and being uncertain of the needs and priorities of Aboriginal people during end-of-life care. According to several participants, very few Aboriginal people had an understanding of palliative care. Managing issues such as anger, denial, the need for non-medical support due to socioeconomic disadvantage, and dealing with crises and conflicts over funeral arrangements were reported as some of the tensions between Aboriginal patients and families and the service providers. Early referral to palliative care is important in demonstrating and maintaining a caring therapeutic relationship. Paramount to meeting the needs for Aboriginal patients was access to appropriate information and logistical, psychological and emotional support. These were often seen as essential but additional to standard palliative care services. The broader context of Aboriginal history and historical distrust of mainstream services was seen to impinge on Aboriginal people's willingness and

  13. Improving palliative care outcomes for Aboriginal Australians: service providers’ perspectives

    Science.gov (United States)

    2013-01-01

    Background Aboriginal Australians have a lower rate of utilisation of palliative care services than the general population. This study aimed to explore care providers’ experiences and concerns in providing palliative care for Aboriginal people, and to identify opportunities for overcoming gaps in understanding between them and their Aboriginal patients and families. Methods In-depth, qualitative interviews with urban, rural and remote palliative care providers were undertaken in inpatient and community settings in Western Australia. Interviews were audio-recorded, transcribed verbatim and coded independently by two researchers with QSR NVivo 10 software used to help manage data. Data analysis was informed by multiple theoretical standpoints, including the social ecological model, critical cultural theories and the ‘cultural security’ framework. Thematic analysis was carried out that identified patterns within data. Results Fifteen palliative care providers were interviewed. Overall they reported lack of understanding of Aboriginal culture and being uncertain of the needs and priorities of Aboriginal people during end-of-life care. According to several participants, very few Aboriginal people had an understanding of palliative care. Managing issues such as anger, denial, the need for non-medical support due to socioeconomic disadvantage, and dealing with crises and conflicts over funeral arrangements were reported as some of the tensions between Aboriginal patients and families and the service providers. Conclusion Early referral to palliative care is important in demonstrating and maintaining a caring therapeutic relationship. Paramount to meeting the needs for Aboriginal patients was access to appropriate information and logistical, psychological and emotional support. These were often seen as essential but additional to standard palliative care services. The broader context of Aboriginal history and historical distrust of mainstream services was seen to

  14. Stand by me: a volunteer's reflection on working on an academic palliative care unit in Germany.

    Science.gov (United States)

    Böddeker, Andrea; Smeding, Ruthmarijke; Voltz, Raymond

    2010-09-01

    To relate personal experience and reflections on the tasks and role of a volunteer in an academic palliative care unit into the context of the English publications of 2009. We took a snapshot of the most recent publications as a way of placing the rather unique experiences of this German volunteer in an international context. Five recent studies were found discussing the importance of volunteers in an interdisciplinary context, but mainly focusing on the volunteer's role in the community, interacting with terminally ill patients and their caregivers. Furthermore, aspects of ethical issues, reasons for starting and continuing to volunteer for hospice and the role of male volunteers were evaluated in these studies. The studies feature on the one hand the positive recognition of volunteers, for example, two studies revealed a significant interest by the respondents of having volunteers if they were dying. Also, these articles focused on family carers, who voted for the service of hospice/palliative care volunteers; on the other hand, efforts have to be made to improve the recruitment of volunteers especially if it comes to male support. A further study, reporting on ethical issues, indicates that little is known about these issues when it comes to a volunteer's interaction with a patient in difficult situations, how these are to be managed. These studies give us valuable clues on how and where to make continuous improvements.

  15. A Multiorganization Approach to Improving Palliative Care in Honduras.

    Science.gov (United States)

    Kennedy Sheldon, Lisa; Dahlin, Constance; Maingi, Shail; Sanchez, Jose

    2017-01-01

    Since 2011, oncology nurses and physicians in the United States have been volunteering in Honduras with the International Cancer Corps (ICC), organized by the American Society of Clinical Oncology (ASCO), in partnership with Health Volunteers Overseas (HVO). In this article, the authors will summarize the work of the ASCO/HVO ICC teams that developed educational programs with local partners to improve cancer and palliative care in Honduras.

  16. [Communication strategies used by health care professionals in providing palliative care to patients].

    Science.gov (United States)

    Trovo de Araújo, Monica Martins; da Silva, Maria Júlia Paes

    2012-06-01

    The objective of this study is to verify the relevance and utilization of communication strategies in palliative care. This is a multicenter qualitative study using a questionnaire, performed from August of 2008 to July of 2009 with 303 health care professionals who worked with patients receiving palliative care. Data were subjected to descriptive statistical analysis. Most participants (57.7%) were unable to state at least one verbal communication strategy, and only 15.2% were able to describe five signs or non-verbal communication strategies. The verbal strategies most commonly mentioned were those related to answering questions about the disease/treatment. Among the non-verbal strategies used, the most common were affective touch, looking, smiling, physical proximity, and careful listening. Though professionals have assigned a high degree of importance to communication in palliative care, they showed poor knowledge regarding communication strategies. Final considerations include the necessity of training professionals to communicate effectively in palliative care.

  17. Patient Outcomes After Palliative Care Consultation Among Patients Undergoing Therapeutic Hypothermia.

    Science.gov (United States)

    Pinto, Priya; Brown, Tartania; Khilkin, Michael; Chuang, Elizabeth

    2018-04-01

    To compare the clinical outcomes of patients who did and did not receive palliative care consultation among those who experienced out-of-hospital cardiac arrest and underwent therapeutic hypothermia. We identified patients at a single academic medical center who had undergone therapeutic hypothermia after out-of-hospital cardiac arrest between 2009 and 2013. We performed a retrospective chart review for demographic data, hospital and critical care length of stay, and clinical outcomes of care. We reviewed the charts of 62 patients, of which 35 (56%) received a palliative care consultation and 27 (44%) did not. Palliative care consultation occurred an average of 8.3 days after admission. Patients receiving palliative care consultation were more likely to have a do-not-resuscitate (DNR) order placed (odds ratio: 2.3, P care or not (16.7 vs 17.1 days, P = .90). Intensive care length of stay was also similar (11.3 vs 12.6 days, P = .55). Palliative care consultation was underutilized and utilized late in this cohort. Palliative consultation was associated with DNR orders but did not affect measures of utilization such as hospital and intensive care length of stay.

  18. Telemedicine and Palliative Care: an Increasing Role in Supportive Oncology.

    Science.gov (United States)

    Worster, Brooke; Swartz, Kristine

    2017-06-01

    With the emergence of telemedicine as a routine form of care in various venues, the opportunities to use technology to care for the most vulnerable, most ill cancer patients are extremely appealing. Increasingly, evidence supports early integration of palliative care with standard oncologic care, supported by recent NCCN guidelines to increase and improve access to palliative care. This review looks at the use of telemedicine to expand access to palliative care as well as provide better care for patients and families where travel is difficult, if not impossible. When telemedicine has been used, often in Europe, for palliative care, the results show improvements in symptom management, comfort with care as well as patient and family satisfaction. One barrier to use of telemedicine is the concerns with technology and technology-related complications in population that is often elderly, frail and not always comfortable with non-face-to-face physician care. There remain significant opportunities to explore this intersection of supportive care and telemedicine.

  19. Home Palliative Care for Patients with Advanced Chronic Kidney Disease: Preliminary Results

    Directory of Open Access Journals (Sweden)

    José L. Teruel

    2015-10-01

    Full Text Available Healthcare for patients with advanced chronic kidney disease (ACKD on conservative treatment very often poses healthcare problems that are difficult to solve. At the end of 2011, we began a program based on the care and monitoring of these patients by Primary Care Teams. ACKD patients who opted for conservative treatment were offered the chance to be cared for mainly at home by the Primary Care doctor and nurse, under the coordination of the Palliative Care Unit and the Nephrology Department. During 2012, 2013, and 2014, 76 patients received treatment in this program (mean age: 81 years; mean Charlson age-comorbidity index: 10, and mean glomerular filtration rate: 12.4 mL/min/1.73 m2. The median patient follow-up time (until death or until 31 December 2014 was 165 days. During this period, 51% of patients did not have to visit the hospital’s emergency department and 58% did not require hospitalization. Forty-eight of the 76 patients died after a median time of 135 days in the program; 24 (50% died at home. Our experience indicates that with the support of the Palliative Care Unit and the Nephrology Department, ACKD patients who are not dialysis candidates may be monitored at home by Primary Care Teams.

  20. Home Palliative Care for Patients with Advanced Chronic Kidney Disease: Preliminary Results

    Science.gov (United States)

    Teruel, José L.; Rexach, Lourdes; Burguera, Victor; Gomis, Antonio; Fernandez-Lucas, Milagros; Rivera, Maite; Diaz, Alicia; Collazo, Sergio; Liaño, Fernando

    2015-01-01

    Healthcare for patients with advanced chronic kidney disease (ACKD) on conservative treatment very often poses healthcare problems that are difficult to solve. At the end of 2011, we began a program based on the care and monitoring of these patients by Primary Care Teams. ACKD patients who opted for conservative treatment were offered the chance to be cared for mainly at home by the Primary Care doctor and nurse, under the coordination of the Palliative Care Unit and the Nephrology Department. During 2012, 2013, and 2014, 76 patients received treatment in this program (mean age: 81 years; mean Charlson age-comorbidity index: 10, and mean glomerular filtration rate: 12.4 mL/min/1.73 m2). The median patient follow-up time (until death or until 31 December 2014) was 165 days. During this period, 51% of patients did not have to visit the hospital’s emergency department and 58% did not require hospitalization. Forty-eight of the 76 patients died after a median time of 135 days in the program; 24 (50%) died at home. Our experience indicates that with the support of the Palliative Care Unit and the Nephrology Department, ACKD patients who are not dialysis candidates may be monitored at home by Primary Care Teams. PMID:27417813

  1. Opioid use in palliative care

    African Journals Online (AJOL)

    Repro

    care. The confident and safe use of opioids in palliative care is an essential skill required by all. d o c t o r s . ... patient for ongoing clinical review. Start the elderly and frail .... (24 hour subcutaneous infusion ... (nursing or medical), pain special-.

  2. Palliative Care Training in Cardiology Fellowship: A National Survey of the Fellows.

    Science.gov (United States)

    Dabbouseh, Noura M; Kaushal, Shivtej; Peltier, Wendy; Johnston, Fabian M

    2018-02-01

    To address perspectives of cardiology fellows on the current state of palliative education and palliative and hospice resource utilization within their fellowship experiences. We conducted an online national survey of cardiology fellows during the 2015 to 2016 academic year. Survey questions aimed to assess perceived importance of palliative care education, level of palliative care education during fellowship, and the structure of palliative care support at respondent institutions. Responses were collected anonymously. A total of 519 programs, including subspecialty programs, were contacted. We received 365 responses, a number that represents roughly 14% of all cardiology fellows nationwide during the 2015 to 2016 academic year. Fellows reported discordance in the quality of education between general cardiology and palliative care principles as it relates to care of the patient approaching the end of life. Fellows infrequently received explicit training nor were observed or mentored in delivering end-of-life discussions. Respondents reported an underutilization of palliative care and hospice resources during fellowship training and also a perception that attending faculty were not routinely addressing goals of care. Our survey results highlight a need for enhanced palliative care and end-of-life training experiences for cardiology fellows and also suggest underutilization of hospice and palliative care resources for patients with advanced cardiac diseases. These findings create a platform for future work that might: (1) confirm this training deficit, (2) lead to exploration of educational models that could reconcile this deficit, and (3) potentially help improve palliative care support for patients and families facing advanced heart disease.

  3. Parental experiences with a paediatric palliative care team: A qualitative study.

    Science.gov (United States)

    Verberne, Lisa M; Schouten-van Meeteren, Antoinette Yn; Bosman, Diederik K; Colenbrander, Derk A; Jagt, Charissa T; Grootenhuis, Martha A; van Delden, Johannes Jm; Kars, Marijke C

    2017-12-01

    Parents of children with a life-limiting disease have to rely on themselves at home while adequate paediatric palliative care is lacking. In several countries, paediatric palliative care teams are introduced to ensure continuity and quality of care and to support the child and the family. Yet, little is known about how parents experience such multidisciplinary teams. To obtain insight into the support provided by a new paediatric palliative care team from the parents' perspective. An interpretative qualitative interview study using thematic analysis was performed. A total of 47 single or repeated interviews were undertaken with 42 parents of 24 children supported by a multidisciplinary paediatric palliative care team located at a university children's hospital. The children suffered from malignant or non-malignant diseases. In advance, parents had limited expectations of the paediatric palliative care team. Some had difficulty accepting the need for palliative care for their child. Once parents experienced what the team achieved for their child and family, they valued the team's involvement. Valuable elements were as follows: (1) process-related aspects such as continuity, coordination of care, and providing one reliable point of contact; (2) practical support; and (3) the team members' sensitive and reliable attitude. As a point of improvement, parents suggested more concrete clarification upfront of the content of the team's support. Parents feel supported by the paediatric palliative care team. The three elements valued by parents probably form the structure that underlies quality of paediatric palliative care. New teams should cover these three valuable elements.

  4. Early Integration of Palliative Care in Oncology Practice: Results of the Italian Association of Medical Oncology (AIOM) Survey.

    Science.gov (United States)

    Zagonel, Vittorina; Torta, Riccardo; Franciosi, Vittorio; Brunello, Antonella; Biasco, Guido; Cattaneo, Daniela; Cavanna, Luigi; Corsi, Domenico; Farina, Gabriella; Fioretto, Luisa; Gamucci, Teresa; Lanzetta, Gaetano; Magarotto, Roberto; Maltoni, Marco; Mastromauro, Cataldo; Melotti, Barbara; Meriggi, Fausto; Pavese, Ida; Piva, Erico; Sacco, Cosimo; Tonini, Giuseppe; Trentin, Leonardo; Ermacora, Paola; Varetto, Antonella; Merlin, Federica; Gori, Stefania; Cascinu, Stefano; Pinto, Carmine

    2016-01-01

    Early integration of palliative care in oncology practice ("simultaneous care", SC) has been shown to provide better care resulting in improved quality-of-life and also survival. We evaluated the opinions of Italian Association of Medical Oncology (AIOM) members. A 37-item questionnaire was delivered to 1119 AIOM members. Main areas covered were: social, ethical, relational aspects of disease and communication, training, research, organizational and management models in SC. Three open questions explored the definition of Quality of Life, Medical Oncologist and Palliative Care. Four hundred and forty-nine (40.1%) medical oncologists returned the questionnaires. Forty-nine percent stated they address non-curability when giving a diagnosis of metastatic tumor, and 43% give the information only to patients who clearly ask for it. Fifty-five percent say the main formative activity in palliative medicine came from attending meetings and 90% agree that specific palliative care training should be part of the core curriculum in oncology. Twenty-two percent stated they consulted guidelines for symptom management, 45% relied upon personal experience and 26% make a referral to a palliative care specialist. Seventy-four percent were in favor of more research in palliative medicine. An integration between Units of Oncology and Palliative Care Services early in the course of advanced disease was advocated by 86%. Diverse and multifaceted definitions were given for the concepts of Quality of Life, Palliative Care and Medical Oncologist. SC is felt as an important task, as well as training of medical oncologists in symptom management and research in this field.

  5. Satisfaction with palliative care after stroke: a prospective cohort study.

    Science.gov (United States)

    Blacquiere, Dylan; Bhimji, Khadija; Meggison, Hilary; Sinclair, John; Sharma, Michael

    2013-09-01

    The determinants of satisfaction for families of acute stroke patients receiving palliative care have not been extensively studied. We surveyed families to determine how they perceived palliative care after stroke. Families of patients palliated after ischemic stroke, intracerebral, or subarachnoid hemorrhage were approached. Four weeks after the patient's death, families were administered the After-Death Bereaved Family Member Interview to determine satisfaction with the care provided. Fifteen families participated. Families were most satisfied with participation in decision making and least satisfied with attention to emotional needs. In stroke-specific domains, families had less satisfaction with artificial feeding, hydration, and communication. Overall satisfaction was high (9.04 out of 10). Families of patients receiving palliative care at our institution showed generally high satisfaction with palliation after stroke; specific domains were identified for improvement. Further study in larger populations is required.

  6. PALLIATIVE CARE ELDERLY PATIENTS WITH SLEEPING DISORDERS ARE POORLY TREATED

    OpenAIRE

    Bellido-Estevez, Inmaculada

    2015-01-01

    Background: Sleep disorders are frequent in patients with advanced cancer receiving palliative-care, especially in elderly patients (1). Sleep disorders during palliative-care may be related with anxiety, opioids related central-sleep apnoea or corticoids therapy between others (2). Our aim was to quantify the effectiveness of hypnotic medication in the sleep quality in advanced cancer receiving palliative-care elderly patients. Material and methods: A descriptive cross-sectional study was...

  7. Day-to-day care in palliative sedation: survey of nurses' experiences with decision-making and performance.

    Science.gov (United States)

    Arevalo, Jimmy J; Rietjens, Judith A; Swart, Siebe J; Perez, Roberto S G M; van der Heide, Agnes

    2013-05-01

    Continuous palliative sedation has been the focus of extensive international debates in the field of end-of-life decision making. Although nurses may be important participants in the performance of continuous palliative sedation, research has focused primarily on the role and experience of physicians. Nurses' experiences differ from that of physicians; they more often describe that continuous palliative sedation is used with the intention of hastening death and to have experienced serious emotional burden. Therefore, it is important to understand the experience of nurses in continuous palliative sedation. To describe nurses' experiences with the decision-making and performance of continuous palliative sedation in terminally ill patients. Cross-sectional study. In 2008, a structured questionnaire was sent to 576 nurses in six professional home care organizations, ten units for palliative care in nursing homes and in-patient hospices and seven hospitals in the western region of the Netherlands. Respondents provided information about the last patient receiving continuous palliative sedation whom they had cared for. Two-hundred seventy-seven questionnaires were returned and 199 (71.84%) reported a case of continuous palliative sedation. Nurses felt involved in the decision to use sedation in 84% of cases, albeit to a lesser extent in home care (68.75%, p=0.002). They agreed with the performance of continuous palliative sedation in 95.97% of cases and they proposed the use of continuous palliative sedation in 16.16%. Nurses were present at the start of sedation in 81.40% of cases and reported physicians to be present in 45.22%. In 72.77%, arrangements had been made among caregivers about the coordination of health care regarding the sedation. Nurses seem to play an important role in the use of continuous sedation. This role is mainly supportive toward physicians and patients during the decision-making process, but shifts to an active performance of sedation

  8. Threading the cloak: palliative care education for care providers of adolescents and young adults with cancer.

    Science.gov (United States)

    Wiener, Lori; Weaver, Meaghann Shaw; Bell, Cynthia J; Sansom-Daly, Ursula M

    2015-01-09

    Medical providers are trained to investigate, diagnose, and treat cancer. Their primary goal is to maximize the chances of curing the patient, with less training provided on palliative care concepts and the unique developmental needs inherent in this population. Early, systematic integration of palliative care into standard oncology practice represents a valuable, imperative approach to improving the overall cancer experience for adolescents and young adults (AYAs). The importance of competent, confident, and compassionate providers for AYAs warrants the development of effective educational strategies for teaching AYA palliative care. Just as palliative care should be integrated early in the disease trajectory of AYA patients, palliative care training should be integrated early in professional development of trainees. As the AYA age spectrum represents sequential transitions through developmental stages, trainees experience changes in their learning needs during their progression through sequential phases of training. This article reviews unique epidemiologic, developmental, and psychosocial factors that make the provision of palliative care especially challenging in AYAs. A conceptual framework is provided for AYA palliative care education. Critical instructional strategies including experiential learning, group didactic opportunity, shared learning among care disciplines, bereaved family members as educators, and online learning are reviewed. Educational issues for provider training are addressed from the perspective of the trainer, trainee, and AYA. Goals and objectives for an AYA palliative care cancer rotation are presented. Guidance is also provided on ways to support an AYA's quality of life as end of life nears.

  9. Patients' experiences of care and support at home after a family member's participation in an intervention during palliative care.

    Science.gov (United States)

    Norinder, Maria; Goliath, Ida; Alvariza, Anette

    2017-06-01

    Patients who receive palliative home care are in need of support from family members, who take on great responsibility related to caregiving but who often feel unprepared for this task. Increasing numbers of interventions aimed at supporting family members in palliative care have been described and evaluated. It is not known whether and how these interventions actually affect the care or support provided to a patient, even though it has been suggested that family members would be likely to provide better care and support and thus allow for positive experiences for patients. However, this has not been studied from the perspective of the patients themselves. The objective of our study was to explore patients' experiences of care and support at home after family members' participation in a psychoeducational intervention during palliative care. Our study took a qualitative approach, and interviews were conducted with 11 patients whose family members had participated in a psychoeducational intervention during palliative home care. The interviews were analyzed employing interpretive description. Patients' experiences were represented by three themes: "safe at home," "facilitated and more honest communication," and "feeling like a unit of care." Patients felt that their needs were better met and that family members became more confident at home without risking their own health. Patients felt relieved when family members were given the opportunity to talk and reflect with others and hoped that the intervention would contribute to more honest communications between themselves and their family members. Further, it was of great importance to patients that family members receive attention from and be confirmed and supported by healthcare professionals. Our findings show how an intervention targeted at family members during palliative home care also benefits the patients.

  10. Productivity in Pediatric Palliative Care: Measuring and Monitoring an Elusive Metric.

    Science.gov (United States)

    Kaye, Erica C; Abramson, Zachary R; Snaman, Jennifer M; Friebert, Sarah E; Baker, Justin N

    2017-05-01

    Workforce productivity is poorly defined in health care. Particularly in the field of pediatric palliative care (PPC), the absence of consensus metrics impedes aggregation and analysis of data to track workforce efficiency and effectiveness. Lack of uniformly measured data also compromises the development of innovative strategies to improve productivity and hinders investigation of the link between productivity and quality of care, which are interrelated but not interchangeable. To review the literature regarding the definition and measurement of productivity in PPC; to identify barriers to productivity within traditional PPC models; and to recommend novel metrics to study productivity as a component of quality care in PPC. PubMed ® and Cochrane Database of Systematic Reviews searches for scholarly literature were performed using key words (pediatric palliative care, palliative care, team, workforce, workflow, productivity, algorithm, quality care, quality improvement, quality metric, inpatient, hospital, consultation, model) for articles published between 2000 and 2016. Organizational searches of Center to Advance Palliative Care, National Hospice and Palliative Care Organization, National Association for Home Care & Hospice, American Academy of Hospice and Palliative Medicine, Hospice and Palliative Nurses Association, National Quality Forum, and National Consensus Project for Quality Palliative Care were also performed. Additional semistructured interviews were conducted with directors from seven prominent PPC programs across the U.S. to review standard operating procedures for PPC team workflow and productivity. Little consensus exists in the PPC field regarding optimal ways to define, measure, and analyze provider and program productivity. Barriers to accurate monitoring of productivity include difficulties with identification, measurement, and interpretation of metrics applicable to an interdisciplinary care paradigm. In the context of inefficiencies

  11. The frequency of alcoholism in patients with advanced cancer admitted to an acute palliative care unit and a home care program.

    Science.gov (United States)

    Mercadante, Sebastiano; Porzio, Giampiero; Caruselli, Amanda; Aielli, Federica; Adile, Claudio; Girelli, Nicola; Casuccio, Alessandra

    2015-02-01

    Cancer patients with a history of alcoholism may be problematic. The frequency of alcoholism among patients with advanced cancer has never been reported in Italy or other European countries. The aim of this prospective study was to determine the frequency of alcoholism, assessed with a simple and validated instrument, among patients with advanced cancer who were referred to two different palliative care settings: an acute inpatient palliative care unit (PCU) of a comprehensive cancer center in a metropolitan area and a home care program (HCP) in a territorial district, localized in the mountains of Italy. A consecutive sample of patients admitted to an inpatient PCU and to an HCP was assessed for a period of eight months. Each patient who agreed to be interviewed completed the Cut down, Annoyed, Guilty, Eye-opener (CAGE) questionnaire. Patients were then interviewed informally to gather information about their history with alcohol. In total, 443 consecutive patients were surveyed; data from 249 to 194 patients were collected in the PCU and HCP, respectively, in the eight-month period. The mean age was 66.4 (SD 12.7) years, and 207 were males. The mean Karnofsky level was 54.2 (SD 14.6). Eighteen patients were CAGE positive (4.06%). Males (Pearson Chi-squared, P = 0.027) and younger patients (analysis of variance test, P = 0.009) were more likely to be CAGE positive. Informal interviews revealed that 17 patients (3.83%) were alcoholics or had a history of alcoholism, and that alcoholism was strongly correlated with CAGE (Pearson Chi-squared, P alcoholism. As CAGE patients express more symptom distress, it is important to detect this problem with a simple tool that has a high sensitivity and specificity and is easy to use even in patients with advanced disease. Copyright © 2015 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

  12. Generalist palliative care in hospital: cultural and organisational interactions

    DEFF Research Database (Denmark)

    Bergenholtz, Heidi; Jarlbaek, Lene; Hølge-Hazelton, Bibi

    2016-01-01

    : a quantitative study, in which three independent datasets were triangulated to study the organisation and evaluation of generalist palliative care, and a qualitative, ethnographic study exploring the culture of generalist palliative nursing care in medical departments. SETTING/PARTICIPANTS: A Danish regional...

  13. Living with Dying in the Pediatric Intensive Care Unit: A Nursing Perspective.

    Science.gov (United States)

    Stayer, Debbie; Lockhart, Joan Such

    2016-07-01

    Despite reported challenges encountered by nurses who provide palliative care to children, few researchers have examined this phenomenon from the perspective of nurses who care for children with life-threatening illnesses in pediatric intensive care units. To describe and interpret the essence of the experiences of nurses in pediatric intensive care units who provide palliative care to children with life-threatening illnesses and the children's families. A hermeneutic phenomenological study was conducted with 12 pediatric intensive care unit nurses in the northeastern United States. Face-to-face interviews and field notes were used to illuminate the experiences. Five major themes were detected: journey to death; a lifelong burden; and challenges delivering care, maintaining self, and crossing boundaries. These themes were illuminated by 12 subthemes: the emotional impact of the dying child, the emotional impact of the child's death, concurrent grieving, creating a peaceful ending, parental burden of care, maintaining hope for the family, pain, unclear communication by physicians, need to hear the voice of the child, remaining respectful of parental wishes, collegial camaraderie and support, and personal support. Providing palliative care to children with life-threatening illnesses was complex for the nurses. Findings revealed sometimes challenging intricacies involved in caring for dying children and the children's families. However, the nurses voiced professional satisfaction in providing palliative care and in support from colleagues. Although the nurses reported collegial camaraderie, future research is needed to identify additional supportive resources that may help staff process and cope with death and dying. ©2016 American Association of Critical-Care Nurses.

  14. Palliative care knowledge, attitudes and perceived self-competence of nurses working in Vietnam.

    Science.gov (United States)

    Nguyen, Ly Thuy; Yates, Patsy; Osborne, Yvonne

    2014-09-01

    To explore palliative care knowledge, attitudes and perceived self-competence of nurses working in oncology settings in Hanoi, Vietnam. The study employed a cross-sectional descriptive survey design. The self-administered questionnaires consisted of three validated instruments: the Expertise and Insight Test for Palliative Care, the Attitude Toward Care of the Dying Scale B and the Palliative Care Nursing Self Competence Scale. The sample consisted of 251 nurses caring for cancer patients in three oncology hospitals in Vietnam. The responses identified low scores in nurses' palliative care knowledge related to pain and other symptom management and psychological and spiritual aspects. Nurses' responses reflected discomfort in communicating about death and establishing therapeutic relationship with oncology patients who require palliative care. Additionally, nurses reported low scores in perceived self-competence when providing pain management and addressing social and spiritual domains of palliative care. The findings also revealed that nurses who had higher palliative care knowledge scores demonstrated attitudes which were more positive and expressed greater perceived self-competence. Nurses working in oncology wards need more education to develop their knowledge and skills of palliative care, especially in the areas of pain management, psychological and spiritual care, and communication.

  15. Assessment of a Hospital Palliative Care Unit (HPCU) for Cancer Patients; A Conceptual Framework.

    Science.gov (United States)

    Rouhollahi, Mohammad Reza; Saghafinia, Masoud; Zandehdel, Kazem; Motlagh, Ali Ghanbari; Kazemian, Ali; Mohagheghi, Mohammad Ali; Tahmasebi, Mamak

    2015-01-01

    The first hospital palliative care unit (HPCU) in Iran (FARS-HPCU) has been established in 2008 in the Cancer Institute, which is the largest referral cancer center in the country. We attempted to assess the performance of the HPCU based on a comprehensive conceptual framework. The main aim of this study was to develop a conceptual framework for assessment of the HPCU performances through designing a value chain in line with the goals and the main processes (core and support). We collected data from a variety of sources, including international guidelines, international best practices, and expert opinions in the country and compared them with national policies and priorities. We also took into consideration the trend of the HPCU development in the Cancer Institute of Iran. Through benchmarking the gap area with the performance standards, some recommendations for better outcome are proposed. The framework for performance assessment consisted of 154 process indicators (PIs), based on which the main stakeholders of the HPCU (including staff, patients, and families) offered their scoring. The outcome revealed the state of the processes as well as the gaps. Despite a significant improvement in many processes and indicators, more development in the comprehensive and integrative aspects of FARS-HPCU performance is required. Consideration of all supportive and palliative requirements of the patients through interdisciplinary and collaborative approaches is recommended.

  16. Evaluating Palliative Care Resources Available to the Public Using the Internet and Social Media.

    Science.gov (United States)

    Claudio, Celeste H; Dizon, Zoelle B; October, Tessie W

    2018-01-01

    Accessible information about palliative care available to the public on the Internet is growing. We do not know whether this information is consistent with the current accepted definition of palliative care. To identify resources on the Internet and social media regarding palliative care and evaluate the information conveyed. A cross-sectional study of "palliative care" search results. Top 10 Google websites, top 10 most viewed YouTube videos, and social media platforms, Facebook and Twitter, were searched. The most popular Google websites were mostly from national organizations promoting palliative care, whose definitions of palliative care consistently mention "quality of life" and "relief from symptoms and stress." None of the websites mentioned children, and 77% cited palliative care as treatment for cancer with less focus on other diseases. No personal stories were included in Google websites, while 60% of YouTube videos included personal stories. Five main themes were generated from 266 YouTube video comments analyzed. The most common theme was emotionality, of which 91% were positive statements. Facebook and Twitter were mostly used by health-care professionals and not the public. Palliative care resources are mostly positive and consistent with the current definition of palliative care. Major Internet search engines such as Google and YouTube provide valuable insight into information the public receives about palliative care. Future development of Internet resources on palliative care should consider including children and emphasizing palliative care for all life-limiting illnesses.

  17. Palliative Care and Human Rights: A Decade of Evolution in Standards.

    Science.gov (United States)

    Ezer, Tamar; Lohman, Diederik; de Luca, Gabriela B

    2018-02-01

    Human rights standards to address palliative care have developed over the last decade. This article aims to examine key milestones in the evolution of human rights standards to address palliative care, relevant advocacy efforts, and areas for further growth. The article provides an analysis of human rights standards in the context of palliative care through the lens of the right to health, freedom from torture and ill treatment, and the rights of older persons and children. Significant developments include the following: 1) the first human rights treaty to explicitly recognize the right to palliative care, the Inter-American Convention on the Rights of Older Persons; 2) the first World Health Assembly resolution on palliative care; 3) a report by the UN Special Rapporteur on Torture with a focus on denial of pain treatment; 4) addressing the availability of controlled medicines at the UN General Assembly Special Session on the World Drug Problem. Development of human rights standards in relation to palliative care has been most notable in the context of the right to health, freedom from torture and ill treatment, and the rights of older persons. More work is needed in the context of the rights of children, and human rights treaty bodies are still not consistently addressing state obligations with regards to palliative care. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

  18. Paediatric palliative care providers' experiences in rural KwaZulu ...

    African Journals Online (AJOL)

    based palliative care (including paediatric palliative care) is available to patients in rural ... reported that one of the most distressing tasks a nurse has to carry out is telling any .... die, as a miracle (such as a cure) is presented as a possibility.

  19. Developing rural palliative care: validating a conceptual model.

    Science.gov (United States)

    Kelley, Mary Lou; Williams, Allison; DeMiglio, Lily; Mettam, Hilary

    2011-01-01

    The purpose of this research was to validate a conceptual model for developing palliative care in rural communities. This model articulates how local rural healthcare providers develop palliative care services according to four sequential phases. The model has roots in concepts of community capacity development, evolves from collaborative, generalist rural practice, and utilizes existing health services infrastructure. It addresses how rural providers manage challenges, specifically those related to: lack of resources, minimal community understanding of palliative care, health professionals' resistance, the bureaucracy of the health system, and the obstacles of providing services in rural environments. Seven semi-structured focus groups were conducted with interdisciplinary health providers in 7 rural communities in two Canadian provinces. Using a constant comparative analysis approach, focus group data were analyzed by examining participants' statements in relation to the model and comparing emerging themes in the development of rural palliative care to the elements of the model. The data validated the conceptual model as the model was able to theoretically predict and explain the experiences of the 7 rural communities that participated in the study. New emerging themes from the data elaborated existing elements in the model and informed the requirement for minor revisions. The model was validated and slightly revised, as suggested by the data. The model was confirmed as being a useful theoretical tool for conceptualizing the development of rural palliative care that is applicable in diverse rural communities.

  20. Hospital-based palliative care: A case for integrating care with cure

    Directory of Open Access Journals (Sweden)

    Priya Darshini Kulkarni

    2011-01-01

    Full Text Available The reason that probably prompted Dame Cicely Saunders to launch the palliative care movement was the need to move away from the impersonal, technocratic approach to death that had become the norm in hospitals after the Second World War. Palliative care focuses on relieving the suffering of patients and families. Not limited to just management of pain, it includes comprehensive management of any symptom, which affects the quality of life. Care is optimized through early initiation and comprehensive implementation throughout the disease trajectory. Effective palliative care at the outset can help accelerate a positive clinical outcome. At the end of life, it can enhance the opportunity for the patient and family to achieve a sense of growth, resolve differences, and find a comfortable closure. It helps to reduce the suffering and fear associated with dying and prepares the family for bereavement.

  1. Palliative home care: A designer′s perspective

    Directory of Open Access Journals (Sweden)

    Tigmanshu Bhatnagar

    2015-01-01

    Full Text Available The purpose for this observational research was to understand how Can Support provides palliative care at home and analyze its strengths and weaknesses in various socioeconomic scenarios for future development. In the period of 2 weeks, patients and their caregivers were silently observed in their natural surroundings during home care visits in order to listen their problems, identify the pattern of questions for the home care team, their natural way of storytelling, organizational techniques for medicines and medical reports, care givers lives, patient journey, etc. Such observations have enabled the understanding of the phenomena of home palliative care and have led to the identification of certain influential variables of the practice.

  2. The process of palliative sedation as viewed by physicians and nurses working in palliative care in Brazil.

    Science.gov (United States)

    Spineli, Vívian Marina Calixto Damasceno; Kurashima, Andrea Yamaguchi; De Gutiérrez, Maria Gaby Rivero

    2015-10-01

    Our aim was to describe the process of palliative sedation from the point of view of physicians and nurses working in palliative care in Brazil. Ours was a descriptive study conducted between May and December of 2011, with purposeful snowball sampling of 32 physicians and 29 nurses working in facilities in Brazil that have adopted the practice of palliative care. The symptoms prioritized for an indication of palliative sedation were dyspnea, delirium, and pain. Some 65.6% of respondents believed that the survival time of a patient in the final phase was not a determining factor for the indication of this measure, and that the patient, family, and healthcare team should participate in the decision-making process. For 42.6% of these professionals, the opinion of the family was the main barrier to an indication of this therapy. The opinion of the physicians and nurses who participated in this study converged with the principal national and international guidelines on palliative sedation. However, even though it is a therapy that has been adopted in palliative care, it remains a controversial practice.

  3. Internal Medicine Residents' Beliefs, Attitudes, and Experiences Relating to Palliative Care: A Qualitative Study.

    Science.gov (United States)

    Kawaguchi, S; Mirza, R; Nissim, R; Ridley, J

    2017-05-01

    Internal medicine residents are frequently called upon to provide palliative care to hospitalized patients, but report feeling unprepared to do so effectively. Curricular development to enhance residents' palliative care skills and competencies requires an understanding of current beliefs, attitudes and learning priorities. We conducted a qualitative study consisting of semi-structured interviews with ten internal medicine residents to explore their understanding of and experiences with palliative care. All of the residents interviewed had a sound theoretical understanding of palliative care, but faced many challenges in being able to provide care in practice. The challenges described by residents were system-related, patient-related and provider-related. They identified several priority areas for further learning, and discussed ways in which their current education in palliative care could be enhanced. Our findings provide important insights to guide curricular development for internal medicine trainees. The top five learning priorities in palliative care that residents identified in our study were: 1) knowing how and when to initiate a palliative approach, 2) improving communication skills, 3) improving symptom management skills, 4) identifying available resources, and 5) understanding the importance of palliative care. Residents felt that their education in palliative care could be improved by having a mandatory rotation in palliative care, more frequent didactic teaching sessions, more case-based teaching from palliative care providers, opportunities to be directly observed, and increased support from palliative care providers after-hours.

  4. The positioning of palliative care in acute care: A multiperspective qualitative study in the context of metastatic melanoma.

    Science.gov (United States)

    Fox, Jennifer; Windsor, Carol; Connell, Shirley; Yates, Patsy

    2016-06-01

    The positioning and meaning of palliative care within the healthcare system lacks clarity which adds a level of complexity to the process of transition to palliative care. This study explores the transition to the palliative care process in the acute care context of metastatic melanoma. A theoretical framework drawing on interpretive and critical traditions informs this research. The pragmatism of symbolic interactionism and the critical theory of Habermas brought a broad orientation to the research. Integration of the theoretical framework and grounded-theory methods facilitated data generation and analysis of 29 interviews with patients, family carers, and healthcare professionals. The key analytical findings depict a scope of palliative care that was uncertain for users of the system and for those working within the system. Becoming "palliative" is not a defined event; nor is there unanimity around referral to a palliative care service. As such, ambiguity and tension contribute to the difficulties involved in negotiating the transition to palliative care. Our findings point to uncertainty around the scopes of practice in the transition to palliative care. The challenge in the transition process lies in achieving greater coherency of care within an increasingly specialized healthcare system. The findings may not only inform those within a metastatic melanoma context but may contribute more broadly to palliative practices within the acute care setting.

  5. Palliative care among heart failure patients in primary care: a comparison to cancer patients using English family practice data.

    Directory of Open Access Journals (Sweden)

    Amy Gadoud

    Full Text Available Patients with heart failure have a significant symptom burden and other palliative care needs often over a longer period than patients with cancer. It is acknowledged that this need may be unmet but by how much has not been quantified in primary care data at the population level.This was the first use of Clinical Practice Research Datalink, the world's largest primary care database to explore recognition of the need for palliative care. Heart failure and cancer patients who had died in 2009 aged 18 or over and had at least one year of primary care records were identified. A palliative approach to care among patients with heart failure was compared to that among patients with cancer using entry onto a palliative care register as a marker for a palliative approach to care.Among patients with heart failure, 7% (234/3 122 were entered on the palliative care register compared to 48% (3 669/7 608 of cancer patients. Of heart failure patients on the palliative care register, 29% (69/234 were entered onto the register within a week of their death.This confirms that the stark inequity in recognition of palliative care needs for people with heart failure in a large primary care dataset. We recommend a move away from prognosis based criteria for palliative care towards a patient centred approach, with assessment of and attention to palliative needs including advance care planning throughout the disease trajectory.

  6. Measuring the diffusion of palliative care in long-term care facilities – a death census

    Directory of Open Access Journals (Sweden)

    Santos-Eggimann Brigitte

    2009-01-01

    Full Text Available Abstract Background The dissemination of palliative care for patients presenting complex chronic diseases at various stages has become an important matter of public health. A death census in Swiss long-term care facilities (LTC was set up with the aim of monitoring the frequency of selected indicators of palliative care. Methods The survey covered 150 LTC facilities (105 nursing homes and 45 home health services, each of which was asked to complete a questionnaire for every non-accidental death over a period of six months. The frequency of 4 selected indicators of palliative care (resort to a specialized palliative care service, the administration of opiates, use of any pain measurement scale or other symptom measurement scale was monitored in respect of the stages of care and analysed based on gender, age, medical condition and place of residence. Results Overall, 1200 deaths were reported, 29.1% of which were related to cancer. The frequencies of each indicator varied according to the type of LTC, mostly regarding the administration of opiate. It appeared that the access to palliative care remained associated with cancer, terminal care and partly with age, whereas gender and the presence of mental disorders had no effect on the indicators. In addition, the use of drugs was much more frequent than the other indicators. Conclusion The profile of patients with access to palliative care must become more diversified. Among other recommendations, equal access to opiates in nursing homes and in home health services, palliative care at an earlier stage and the systematic use of symptom management scales when resorting to opiates have to become of prime concern.

  7. Phenomenological and neuropsychological profile across motor variants of delirium in a palliative care unit

    LENUS (Irish Health Repository)

    Leonard, Maeve

    2011-01-01

    Studies using composite measurement of cognition suggest that cognitive performance is similar across motor variants of delirium. The authors assessed neuropsychological and symptom profiles in 100 consecutive cases of DSM-IV delirium allocated to motor subtypes in a palliative-care unit: Hypoactive (N=33), Hyperactive (N=18), Mixed (N=26), and No-Alteration motor groups (N=23). The Mixed group had more severe delirium, with highest scores for DRS-R-98 sleep-wake cycle disturbance, hallucinations, delusions, and language abnormalities. Neither the total Cognitive Test for Delirium nor its five neuropsychological domains differed across Hyperactive, Mixed, and Hypoactive motor groups. Most patients (70%) with no motor alteration had DRS-R-98 scores in the mild or subsyndromal range even though they met DSM-IV criteria. Motor variants in delirium have similar cognitive profiles, but mixed cases differ in expression of several noncognitive features.

  8. Empowering nurses in providing palliative care to cancer patients: Action research study

    Directory of Open Access Journals (Sweden)

    Fariba Taleghani

    2018-01-01

    Full Text Available Background: Chronic diseases such as cancer would lead to various health needs in patients and their families. To meet needs, developing new educational nursing courses is necessary. Therefore this study was conducted to empower nurses through designing and conducting short-term educational courses for training palliative care nurses. Materials and Methods: This study was a community-based action research which was conducted at Isfahan hospitals that provide services for cancer patients during 2015 at four stages (planning, acting, reflection, and evaluation. Participants (33 samples included nurses, head nurses, managers of nursing services, nursing professors and professors of oncology department. Data were gathered through individual and group interviews and analyzed using content analysis. Results: Data analysis resulted in 3 categories of "professional development of nursing in palliative care" which included subcategories of: knowledge-based performance and positive change in attitude, "obstacles to provide palliative care" with subcategories of: insufficient professional responsibility, insufficient ability in managing some of patients' symptoms and inappropriate interaction between nurses and physicians and "strategies for improving provision of palliative care" with subcategories of: improving the interactions between physicians and nurses, continuous trainings for palliative care and the necessity of developing palliative care in the country. Conclusions: To facilitate the process of providing palliative care to cancer patients, necessary actions and measures must be conducted including improvement of interaction between the members of health team, organizing continuing educational courses on palliative care and development of providing palliative care all over the country by managers of health centers.

  9. Development and validation of the quality care questionnaire -palliative care (QCQ-PC): patient-reported assessment of quality of palliative care.

    Science.gov (United States)

    Yun, Young Ho; Kang, Eun Kyo; Lee, Jihye; Choo, Jiyeon; Ryu, Hyewon; Yun, Hye-Min; Kang, Jung Hun; Kim, Tae You; Sim, Jin-Ah; Kim, Yaeji

    2018-03-05

    In this study, we aimed to develop and validate an instrument that could be used by patients with cancer to evaluate their quality of palliative care. Development of the questionnaire followed the four-phase process: item generation and reduction, construction, pilot testing, and field testing. Based on the literature, we constructed a list of items for the quality of palliative care from 104 quality care issues divided into 14 subscales. We constructed scales of 43 items that only the cancer patients were asked to answer. Using relevance and feasibility criteria and pilot testing, we developed a 44-item questionnaire. To assess the sensitivity and validity of the questionnaire, we recruited 220 patients over 18 years of age from three Korean hospitals. Factor analysis of the data and fit statistics process resulted in the 4-factor, 32-item Quality Care Questionnaire-Palliative Care (QCQ-PC), which covers appropriate communication with health care professionals (ten items), discussing value of life and goals of care (nine items), support and counseling for needs of holistic care (seven items), and accessibility and sustainability of care (six items). All subscales and total scores showed a high internal consistency (Cronbach alpha range, 0.89 to 0.97). Multi-trait scaling analysis showed good convergent (0.568-0.995) and discriminant (0.472-0.869) validity. The correlation between the total and subscale scores of QCQ-PC and those of EORTC QLQ-C15-PAL, MQOL, SAT-SF, and DCS was obtained. This study demonstrates that the QCQ-PC can be adopted to assess the quality of care in patients with cancer.

  10. The importance of measuring customer satisfaction in palliative care.

    Science.gov (United States)

    Turriziani, Adriana; Attanasio, Gennaro; Scarcella, Francesco; Sangalli, Luisa; Scopa, Anna; Genualdo, Alessandra; Quici, Stefano; Nazzicone, Giulia; Ricciotti, Maria Adelaide; La Commare, Francesco

    2016-03-01

    In the last decades, palliative care has been more and more focused on the evaluation of patients' and families' satisfaction with care. However, the evaluation of customer satisfaction in palliative care presents a number of issues such as the presence of both patients and their families, the frail condition of the patients and the complexity of their needs, and the lack of standard quality indicators and appropriate measurement tools. In this manuscript, we critically review existing evidence and literature on the evaluation of satisfaction in the palliative care context. Moreover, we provide - as a practical example - the preliminary results of our experience in this setting with the development of a dedicated tool for the measurement of satisfaction.

  11. The Japan HOspice and Palliative Care Evaluation Study (J-HOPE Study): views about legalization of death with dignity and euthanasia among the bereaved whose family member died at palliative care units.

    Science.gov (United States)

    Okishiro, Nao; Miyashita, Mitsunori; Tsuneto, Satoru; Sato, Kazuki; Shima, Yasuo

    2009-01-01

    There has been a debate in appropriateness of legalization of death with dignity and euthanasia in Japan. To clarify views about these issues, we conducted a large nationwide study of the bereaved whose family member died at palliative care units. The percentages of 429 bereaved family members (response rate 65%) who affirmed legal authorization were 52 for death with dignity and 45 for euthanasia and who affirmed assignment at the discretion of the physician involved were 37 for death with dignity and 38 for euthanasia. In conclusion, views about legalization of death with dignity and euthanasia among the bereaved are inconsistent. No consensus is reached as to legislation of these issues.

  12. Nurse-family interaction in Malaysian palliative care settings: a focused literature review.

    Science.gov (United States)

    Namasivayam, Pathma; O Connor, Margaret; Barnett, Tony; Lee, Susan; Peters, Louise

    2011-10-01

    Palliative care in Malaysia developed in the 1990s to improve the quality of life of people with advanced cancer. Like many other countries, Malaysia faces its own challenges in providing palliative care to patients and their families. In Malaysian culture, families play a significant part in providing care to the dying. Connecting with families in patient care is therefore important. This paper reports a focused literature review evaluating studies on the care of the families of terminally ill people in palliative care environments in Malaysia. The search engines CINAHL, Medline, PsycINFO, and Google Scholar were searched for literature published from January 2000 to April 2010 relating to family care in palliative care environments. Due to a paucity of research on family care in Malaysia, the search was broadened to include relevant studies on family care internationally. Four themes were identified: delivering palliative care in Malaysia, communicating with families, crossing cultural boundaries, and the caring experience of nurses. The studies indicate the importance of the nurse-family interaction in providing optimal and culturally appropriate palliative care. This paper emphasizes the need for research into the nurse's role in family care and for developing a theory appropriate to the Malaysian culture and other countries with cultural diversity.

  13. Music Therapy in Palliative Care.

    Science.gov (United States)

    Warth, Marco; Keßler, Jens; Hillecke, Thomas K; Bardenheuer, Hubert J

    2015-11-13

    Music therapy has been used successfully for over 30 years as part of palliative care programs for severely ill patients. There is nonetheless a lack of high-quality studies that would enable an evidence-based evaluation of its psychological and physiological effects. In a randomized controlled trial, 84 hospitalized patients in palliative care were assigned to one of two treatment arms--music therapy and control. The music therapy intervention consisted of two sessions of live music-based relaxation exercises; the patients in the control group listened to a verbal relaxation exercise. The primary endpoints were self-ratings of relaxation, well-being, and acute pain, assessed using visual analog scales. Heart rate variability and health-related quality of life were considered as secondary outcomes. The primary data analysis was performed according to the intention-to-treat principle. Analyses of covariance revealed that music therapy was more effective than the control treatment at promoting relaxation (F = 13.7; p Music therapy did not differ from control treatment with respect to pain reduction (F = 0.4; p = 0.53), but it led to a significantly greater reduction in the fatigue score on the quality-of-life scale (F = 4.74; p = 0.03). Music therapy is an effective treatment with a low dropout rate for the promotion of relaxation and well-being in terminally ill persons undergoing palliative care.

  14. Usage Patterns of a Mobile Palliative Care Application.

    Science.gov (United States)

    Zhang, Haipeng; Liu, David; Marks, Sean; Rickerson, Elizabeth M; Wright, Adam; Gordon, William J; Landman, Adam

    2018-06-01

    Fast Facts Mobile (FFM) was created to be a convenient way for clinicians to access the Fast Facts and Concepts database of palliative care articles on a smartphone or tablet device. We analyzed usage patterns of FFM through an integrated analytics platform on the mobile versions of the FFM application. The primary objective of this study was to evaluate the usage data from FFM as a way to better understand user behavior for FFM as a palliative care educational tool. This is an exploratory, retrospective analysis of de-identified analytics data collected through the iOS and Android versions of FFM captured from November 2015 to November 2016. FFM App download statistics from November 1, 2015, to November 1, 2016, were accessed from the Apple and Google development websites. Further FFM session data were obtained from the analytics platform built into FFM. FFM was downloaded 9409 times over the year with 201,383 articles accessed. The most searched-for terms in FFM include the following: nausea, methadone, and delirium. We compared frequent users of FFM to infrequent users of FFM and found that 13% of all users comprise 66% of all activity in the application. Demand for useful and scalable tools for both primary palliative care and specialty palliative care will likely continue to grow. Understanding the usage patterns for FFM has the potential to inform the development of future versions of Fast Facts. Further studies of mobile palliative care educational tools will be needed to further define the impact of these educational tools.

  15. Patterns of Palliative Care Referral in Patients Admitted With Heart Failure Requiring Mechanical Ventilation.

    Science.gov (United States)

    Wiskar, Katie J; Celi, Leo Anthony; McDermid, Robert C; Walley, Keith R; Russell, James A; Boyd, John H; Rush, Barret

    2018-04-01

    Palliative care is recommended for advanced heart failure (HF) by several major societies, though prior studies indicate that it is underutilized. To investigate patterns of palliative care referral for patients admitted with HF exacerbations, as well as to examine patient and hospital factors associated with different rates of palliative care referral. Retrospective nationwide cohort analysis utilizing the National Inpatient Sample from 2006 to 2012. Patients referred to palliative care were compared to those who were not. Patients ≥18 years of age with a primary diagnosis of HF requiring mechanical ventilation (MV) were included. A cohort of non-HF patients with metastatic cancer was created for temporal comparison. Between 2006 and 2012, 74 824 patients underwent MV for HF. A referral to palliative care was made in 2903 (3.9%) patients. The rate of referral for palliative care in HF increased from 0.8% in 2006 to 6.4% in 2012 ( P care referral in patients with cancer increased from 2.9% in 2006 to 11.9% in 2012 ( P care ( P care. The use of palliative care for patients with advanced HF increased during the study period; however, palliative care remains underutilized in this setting. Patient factors such as race and SES affect access to palliative care.

  16. Defining High-Quality Palliative Care in Oncology Practice: An American Society of Clinical Oncology/American Academy of Hospice and Palliative Medicine Guidance Statement.

    Science.gov (United States)

    Bickel, Kathleen E; McNiff, Kristen; Buss, Mary K; Kamal, Arif; Lupu, Dale; Abernethy, Amy P; Broder, Michael S; Shapiro, Charles L; Acheson, Anupama Kurup; Malin, Jennifer; Evans, Tracey; Krzyzanowska, Monika K

    2016-09-01

    Integrated into routine oncology care, palliative care can improve symptom burden, quality of life, and patient and caregiver satisfaction. However, not all oncology practices have access to specialist palliative medicine. This project endeavored to define what constitutes high-quality primary palliative care as delivered by medical oncology practices. An expert steering committee outlined 966 palliative care service items, in nine domains, each describing a candidate element of primary palliative care delivery for patients with advanced cancer or high symptom burden. Using modified Delphi methodology, 31 multidisciplinary panelists rated each service item on three constructs: importance, feasibility, and scope within medical oncology practice. Panelists endorsed the highest proportion of palliative care service items in the domains of End-of-Life Care (81%); Communication and Shared Decision Making (79%); and Advance Care Planning (78%). The lowest proportions were in Spiritual and Cultural Assessment and Management (35%) and Psychosocial Assessment and Management (39%). In the largest domain, Symptom Assessment and Management, there was consensus that all symptoms should be assessed and managed at a basic level, with more comprehensive management for common symptoms such as nausea, vomiting, diarrhea, dyspnea, and pain. Within the Appropriate Palliative Care and Hospice Referral domain, there was consensus that oncology practices should be able to describe the difference between palliative care and hospice to patients and refer patients appropriately. This statement describes the elements comprising high-quality primary palliative care for patients with advanced cancer or high symptom burden, as delivered by oncology practices. Oncology providers wishing to enhance palliative care delivery may find this information useful to inform operational changes and quality improvement efforts. Copyright © 2016 by American Society of Clinical Oncology.

  17. Muslim physicians and palliative care: attitudes towards the use of palliative sedation.

    Science.gov (United States)

    Muishout, George; van Laarhoven, Hanneke W M; Wiegers, Gerard; Popp-Baier, Ulrike

    2018-05-08

    Muslim norms concerning palliative sedation can differ from secular and non-Muslim perceptions. Muslim physicians working in a Western environment are expected to administer palliative sedation when medically indicated. Therefore, they can experience tension between religious and medical norms. To gain insight into the professional experiences of Muslim physicians with palliative sedation in terms of religious and professional norms. Interpretative phenomenological study using semi-structured interviews to take a closer look at the experiences of Muslim physicians with palliative sedation. Data were recorded, transcribed and analysed by means of interpretative phenomenological analysis (IPA). Ten Muslim physicians, working in the Netherlands, with professional experience of palliative sedation. Two main themes were identified: professional self-concept and attitudes towards death and dying. Participants emphasized their professional responsibility when making treatment decisions, even when these contravened the prevalent views of Islamic scholars. Almost all of them expressed the moral obligation to fight their patients' pain in the final stage of life. Absence of acceleration of death was considered a prerequisite for using palliative sedation by most participants. Although the application of palliative sedation caused friction with their personal religious conceptions on a good death, participants followed a comfort-oriented care approach corresponding to professional medical standards. All of them adopted efficient strategies for handling of palliative sedation morally and professionally. The results of this research can contribute to and provide a basis for the emergence of new, applied Islamic ethics regarding palliative sedation.

  18. Should palliative care patients' hope be truthful, helpful or valuable? An interpretative synthesis of literature describing healthcare professionals' perspectives on hope of palliative care patients

    NARCIS (Netherlands)

    Olsman, Erik; Leget, Carlo; Onwuteaka-Philipsen, Bregje; Willems, Dick

    2014-01-01

    Healthcare professionals' perspectives on palliative care patients' hope influence communication. However, these perspectives have hardly been examined. To describe healthcare professionals' perspectives on palliative care patients' hope found in the literature. The interpretative synthesis

  19. Integrating palliative care within acute stroke services: developing a programme theory of patient and family needs, preferences and staff perspectives

    Directory of Open Access Journals (Sweden)

    Burton Christopher R

    2012-11-01

    Full Text Available Abstract Background Palliative care should be integrated early into the care trajectories of people with life threatening illness such as stroke. However published guidance focuses primarily on the end of life, and there is a gap in the evidence about how the palliative care needs of acute stroke patients and families should be addressed. Synthesising data across a programme of related studies, this paper presents an explanatory framework for the integration of palliative and acute stroke care. Methods Data from a survey (n=191 of patient-reported palliative care needs and interviews (n=53 exploring experiences with patients and family members were explored in group interviews with 29 staff from 3 United Kingdom stroke services. A realist approach to theory building was used, constructed around the mechanisms that characterise integration, their impacts, and mediating, contextual influences. Results The framework includes two cognitive mechanisms (the legitimacy of palliative care and individual capacity, and behavioural mechanisms (engaging with family; the timing of intervention; working with complexity; and the recognition of dying through which staff integrate palliative and stroke care. A range of clinical (whether patients are being ‘actively treated’, and prognostic uncertainty and service (leadership, specialty status and neurological focus factors appear to influence how palliative care needs are attended to. Conclusions Our framework is the first, empirical explanation of the integration of palliative and acute stroke care. The specification in the framework of factors that mediate integration can inform service development to improve the outcomes and experiences of patients and families.

  20. Pediatric Palliative Care: A Personal Story

    Medline Plus

    Full Text Available ... views 4:24 The Ugly Truth of Pediatric Cancer - Duration: 5:21. KidsCancerChannel 63,636 views 5: ... 27. HammondCare 29,011 views 22:27 Childhood Cancer: Palliative Care - Duration: 3:29. American Cancer Society ...

  1. Home-based palliative care: challenges in the care of technology-dependent children.

    Science.gov (United States)

    Floriani, Ciro A

    2010-01-01

    To conceptualize palliative care and its indications in Pediatrics; to describe the difficulties involved in the delivery of such care at home for technology-dependent children; and to analyze, from a bioethical perspective, the moral dilemmas of palliative care assistance. A literature review of palliative care for technology-dependent children and a bioethical analysis of moral dilemmas. There are several obstacles to palliative care for technology-dependent children: structural difficulties at home; social isolation of both children and families; health professionals' sense of disbelief regarding this type of care; an excessive number of medical devices at home; uncertainty of a terminal prognosis; physical, emotional, social, material, and financial burden for parents and family; changes in family dynamics to adjust to these children; paternalistic relationship between professionals and family; changes in family roles, with shifts in the caregiver role. It is essential to outline an agenda based on the premise that the medical apparatus for technology-dependent children will change the landscape of the home, and such a change might become a problem to be faced by all those living together. Based on this assumption, actions performed in a setting other than a health care facility might exert an actual protective effect on children and family, offering support in their several needs and developing a model of care delivery that includes interventions in the different levels of burden on these vulnerated and unprotected individuals.

  2. [Hospice and palliative care in the outpatient department].

    Science.gov (United States)

    Ikenaga, M; Tsuneto, S

    2000-10-01

    In the medical environment, information disclosure to patients and respect of autonomy have spread rapidly. Today, many terminally-ill cancer patients wish to spend as much time at home as possible. In such situations the patient who has been informed that curative treatments are no longer expected to be beneficial can now hope to receive home care and visiting care from hospice/palliative care services. The essential concepts of hospice/palliative care are symptom management, communication, family care and a multidisciplinary approach. These concepts are also important in the outpatient department. In particular, medical staff need to understand and utilize management strategies for common symptoms from which terminally-ill cancer patients suffer (ex. cancer pain, anorexia/fatigue, dyspnea, nausea/vomiting, constipation, hypercalcemia and psychological symptoms). They also need to know how to use continuous subcutaneous infusion for symptom management in the patients last few days. The present paper explains the clinical practices of hospice/palliative care in the outpatient department. Also discussed is support of individual lives so that maximum QOL is provided for patients kept at home.

  3. Should palliative care patients' hope be truthful, helpful or valuable? An interpretative synthesis of literature describing healthcare professionals' perspectives on hope of palliative care patients

    NARCIS (Netherlands)

    Olsman, E.; Leget, C.; Onwuteaka-Philipsen, B.D.; Willems, D.

    2014-01-01

    Background: Healthcare professionals? perspectives on palliative care patients? hope influence communication. However, these perspectives have hardly been examined. Aim: To describe healthcare professionals? perspectives on palliative care patients? hope found in the literature. Design: The

  4. Identifying patients suitable for palliative care - a descriptive analysis of enquiries using a Case Management Process Model approach

    Directory of Open Access Journals (Sweden)

    Kuhn Ulrike

    2012-11-01

    Full Text Available Abstract Background In Germany, case management in a palliative care unit was first implemented in 2005 at the Department of Palliative Medicine at the University Hospital Cologne. One of the purposes of this case management is to deal with enquiries from patients and their relatives as well as medical professionals. Using the Case Management Process Model of the Case Management Society of America as a reference, this study analysed (a how this case management was used by different enquiring groups and (b how patients were identified for case management and for palliative care services. The first thousand enquiries were analysed considering patient variables, properties of the enquiring persons and the content of the consultations. Results Most enquiries to the case management were made by telephone. The majority of requests regarded patients with oncological disease (84.3 %. The largest enquiring group was composed of patients and relatives (40.8 %, followed by internal professionals of the hospital (36.1 %. Most of the enquiring persons asked for a patient’s admission to the palliative care ward (46.4 %. The second most frequent request was for consultation and advice (30.9 %, followed by requests for the palliative home care service (13.3 %. Frequent reasons for actual admissions were the need for the treatment of pain, the presence of symptoms and the need for nursing care. More than half of the enquiries concerning admission to the palliative care ward were followed by an admission. Conclusions Case management has been made public among the relevant target groups. Case management as described by the Case Management Process Model helps to identify patients likely to benefit from case management and palliative care services. In addition, with the help of case management palliative patients may be allocated to particular health care services.

  5. Feasibility and Pilot Studies in Palliative Care Research: A Systematic Review.

    Science.gov (United States)

    Jones, Terry A; Olds, Timothy S; Currow, David C; Williams, Marie T

    2017-07-01

    Feasibility and pilot study designs are common in palliative care research. Finding standard guidelines on the structure and reporting of these study types is difficult. In feasibility and pilot studies in palliative care research, to determine 1) how commonly a priori feasibility are criteria reported and whether results are subsequently reported against these criteria? and 2) how commonly are participants' views on acceptability of burden of the study protocol assessed? Four databases (OVID Medline, EMBASE, CINAHL, and PubMed via caresearch.com.au.) were searched. Search terms included palliative care, terminal care, advance care planning, hospice, pilot, feasibility, with a publication date between January 1, 2012 and December 31, 2013. Articles were selected and appraised by two independent reviewers. Fifty-six feasibility and/or pilot studies were included in this review. Only three studies had clear a priori criteria to measure success. Sixteen studies reported participant acceptability or burden with measures. Forty-eight studies concluded feasibility. The terms "feasibility" and "pilot" are used synonymously in palliative care research when describing studies that test for feasibility. Few studies in palliative care research outline clear criteria for success. The assessment of participant acceptability and burden is uncommon. A gold standard for feasibility study design in palliative care research that includes both clear criteria for success and testing of the study protocol for participant acceptability and burden is needed. Such a standard would assist with consistency in the design, conduct and reporting of feasibility and pilot studies. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

  6. Palliative care in advanced HIV

    African Journals Online (AJOL)

    Repro

    FEATURES OF PALLIATIVE CARE. IN AIDS ... rent infection e.g. IV ampho- tericin B on an in-patient ... nurses for case management, to communicate ... evaluation — an ongoing process of assessment, to .... Rectal, subcutaneous, intravenous.

  7. [Use of music in palliative care].

    Science.gov (United States)

    Skrbina, Dijana; Simunović, Dubravka; Santek, Vjerocka; Njegovan-Zvonarević, Tatjana

    2011-12-01

    Man is mortal, which means that as the earthly body perishes being, final. Disease and death will always be an inevitable and integral part of human experience. The way in which we try to identify and respond to the unique and individual needs of the dying is an indication of our maturity as a society. The number of people requiring palliative care is growing. Palliative care does not intend to either accelerate or postpone death she emphasizes the life and looks at dying as a normal process. It is an active form of care for patients with advanced, progressive illness, with the aim of suppressing pain and other symptoms in addition to providing psychological, social and spiritual support which ensures the best possible quality of life for patients and their families. Therefore requires a coordinated and interdisciplinary contribution team. The variety of professions in a team, and determine the needs of patients should be ready to provide physical, psychological, social and spiritual support using methods that result from an interdisciplinary, collaborative team approach. Development of a holistic approach and awareness in the medical and allied professions has led to a renewal of interest in the inclusion of music and other expressive media in contemporary concepts of palliative care, which are consistent with problem areas, clinical manifestations and the needs of patients. Music offers a direct and uncomplicated medium of intimacy, living in a man who listens to her, has a place where words lose their power. Music is like our existence, constantly polarizing and emotionally stimulating, as it touches the medium of the earliest layers of our becoming. The use of music in palliative care has proved very effective for a variety of effects that music creates in patients. These effects are achieved through the use of various musical techniques, such as musical improvisation, songwriting, receiving creative techniques, guided by imagination and music. These techniques

  8. [Multiprofessional team working in palliative medicine].

    Science.gov (United States)

    Osaka, Iwao

    2013-04-01

    Now, more than ever, palliative medicine has been gaining recognition for its essential role in cancer treatment. Since its beginning, it has emphasized the importance of collaboration among multidisciplinary professionals, valuing a comprehensive and holistic philosophy, addressing a wide range of hopes and suffering that patients and families experience. There are three models (approaches) for the medical teams: multidisciplinary, interdisciplinary, and transdisciplinary. Palliative care teams often choose the interdisciplinary team model, and the teams in the palliative care units may often choose the transdisciplinary team model. Recently, accumulating research has shown the clinical benefits of the interdisciplinary/transdisciplinary approach in palliative care settings. Clarifying appropriate functions and ideal features of physicians in the health care team, and enforcing the suitable team approach will contribute to improve the quality of whole medical practice beyond the framework of "palliative medicine".

  9. A critical realist evaluation of a music therapy intervention in palliative care.

    Science.gov (United States)

    Porter, Sam; McConnell, Tracey; Clarke, Mike; Kirkwood, Jenny; Hughes, Naomi; Graham-Wisener, Lisa; Regan, Joan; McKeown, Miriam; McGrillen, Kerry; Reid, Joanne

    2017-12-08

    Music therapy is increasingly used as an adjunct therapy to support symptom management in palliative care. However, studies to date have paid little attention to the processes that lead to changes in patient outcomes. To fill this gap, we examined the processes and experiences involved in the introduction of music therapy as an adjunct complementary therapy to palliative care in a hospice setting in the United Kingdom (UK). Using a realistic evaluation approach, we conducted a qualitative study using a variety of approaches. These consisted of open text answers from patients (n = 16) on how music therapy helped meet their needs within one hospice in Northern Ireland, UK. We also conducted three focus groups with a range of palliative care practitioners (seven physicians, seven nursing staff, two social workers and three allied health professionals) to help understand their perspectives on music therapy's impact on their work setting, and what influences its successful implementation. This was supplemented with an interview with the music therapist delivering the intervention. Music therapy contains multiple mechanisms that can provide physical, psychological, emotional, expressive, existential and social support. There is also evidence that the hospice context, animated by a holistic approach to healthcare, is an important facilitator of the effects of music therapy. Examination of patients' responses helped identify specific benefits for different types of patients. There is a synergy between the therapeutic aims of music therapy and those of palliative care, which appealed to a significant proportion of participants, who perceived it as effective.

  10. Launching a palliative care homepage: the Edmonton experience.

    Science.gov (United States)

    Pereira, J; Macmillan, A; Bruera, E

    1997-11-01

    The Internet, with its graphical subdivision, the World Wide Web (WWW). has become a powerful tool for the dissemination of information and for communication. This paper discusses the authors' experiences with creating, launching and maintaining an official publication on the Internet by the Edmonton Regional Palliative Care Program and the Division of Palliative Medicine, University of Alberta, Canada. It describes the content and format of the homepage and the process of publication. Over a six-month period there were 892 visits to the site and 84 separate items of correspondence to the site's editors. Of these correspondence items, 36 were requesting further information regarding clinical and other programme information. Sixty-nine of the 84 communications came from North America and Europe. The pattern of readership is briefly discussed as are some of the potential advantages and challenges when utilizing this electronic medium. To promote the dissemination of reliable information on the Internet, the authors encourage other palliative care groups and organizations to publish on the WWW. The URL is http:/(/)www.palliative.org (previously http:/(/)www.caritas.ab.ca/approximately palliate).

  11. Generalist palliative care in hospital - Cultural and organisational interactions. Results of a mixed-methods study.

    Science.gov (United States)

    Bergenholtz, Heidi; Jarlbaek, Lene; Hølge-Hazelton, Bibi

    2016-06-01

    It can be challenging to provide generalist palliative care in hospitals, owing to difficulties in integrating disease-oriented treatment with palliative care and the influences of cultural and organisational conditions. However, knowledge on the interactions that occur is sparse. To investigate the interactions between organisation and culture as conditions for integrated palliative care in hospital and, if possible, to suggest workable solutions for the provision of generalist palliative care. A convergent parallel mixed-methods design was chosen using two independent studies: a quantitative study, in which three independent datasets were triangulated to study the organisation and evaluation of generalist palliative care, and a qualitative, ethnographic study exploring the culture of generalist palliative nursing care in medical departments. A Danish regional hospital with 29 department managements and one hospital management. Two overall themes emerged: (1) 'generalist palliative care as a priority at the hospital', suggesting contrasting issues regarding prioritisation of palliative care at different organisational levels, and (2) 'knowledge and use of generalist palliative care clinical guideline', suggesting that the guideline had not reached all levels of the organisation. Contrasting issues in the hospital's provision of generalist palliative care at different organisational levels seem to hamper the interactions between organisation and culture - interactions that appear to be necessary for the provision of integrated palliative care in the hospital. The implementation of palliative care is also hindered by the main focus being on disease-oriented treatment, which is reflected at all the organisational levels. © The Author(s) 2015.

  12. Experiences of security and continuity of care: Patients' and families' narratives about the work of specialized palliative home care teams.

    Science.gov (United States)

    Klarare, Anna; Rasmussen, Birgit H; Fossum, Bjöörn; Fürst, Carl Johan; Hansson, Johan; Hagelin, Carina Lundh

    2017-04-01

    Those who are seriously ill and facing death are often living with physical, emotional, social, and spiritual suffering. Teamwork is considered to be necessary to holistically meet the diverse needs of patients in palliative care. Reviews of studies regarding palliative care team outcomes have concluded that teams provide benefits, especially regarding pain and symptom management. Much of the research concerning palliative care teams has been performed from the perspective of the service providers and has less often focused on patients' and families' experiences of care. Our aim was to investigate how the team's work is manifested in care episodes narrated by patients and families in specialized palliative home care (SPHC). A total of 13 interviews were conducted with patients and families receiving specialized home care. Six patients and seven family members were recruited through SPHC team leaders. Interviews were transcribed verbatim and the transcripts qualitatively analyzed into themes. Two themes were constructed through thematic analysis: (1) security ("They are always available," "I get the help I need quickly"); and (2) continuity of care ("They know me/us, our whole situation and they really care"). Of the 74 care episodes, 50 were descriptions of regularly scheduled visits, while 24 related to acute care visits and/or interventions. Patients' and family members' descriptions of the work of SPHC teams are conceptualized through experiences of security and continuity of care. Experiences of security are fostered through the 24/7 availability of the team, sensitivity and flexibility in meeting patients' and families' needs, and practical adjustments to enable care at home. Experiences of continuity of care are fostered through the team's collective approach, where the individual team member knows the patients and family members, including their whole situation, and cares about the little things in life as well as caring for the family unit.

  13. Impact of specialist palliative care on coping with Parkinson's disease: patients and carers.

    Science.gov (United States)

    Badger, Nathan J; Frizelle, Dorothy; Adams, Debi; Johnson, Miriam J

    2018-01-09

    UK guidelines recommend palliative care access for people with Parkinson's disease; however, this remains sporadic, and it is unknown whether specialist palliative care helps patients and carers cope with this distressing condition. This study aimed to explore whether, and how, access to specialist palliative care services affected patients' and carers' coping with Parkinson's disease. Semistructured interviews were conducted, audio-recorded and verbatim transcribed. Data were analysed using interpretative phenomenological analysis. Participants were patients with advanced idiopathic Parkinson's disease (n=3), and carers of people with Parkinson's disease (n=5, however, one diagnosis was reviewed) receiving care from an integrated specialist palliative care and Parkinson's disease service in North East England. Access to specialist palliative care helped participants cope with some aspects of advanced Parkinson's disease. Three superordinate themes were developed:' managing uncertainty', 'impacts on the self' and 'specialist palliative care maintaining a positive outlook'. Specialist palliative care helped patients and carers cope with advanced Parkinson's disease. Specialist palliative care is a complex intervention that acknowledges the complex and holistic nature of Parkinson's disease, enabling health in some domains despite continued presence of pathology. These exploratory findings support the utility of this approach for people living with Parkinson's disease. © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2018. All rights reserved. No commercial use is permitted unless otherwise expressly granted.

  14. The view of pulmonologists on palliative care for patients with COPD: a survey study

    Directory of Open Access Journals (Sweden)

    Duenk RG

    2017-01-01

    Full Text Available RG Duenk,1 C Verhagen,1 PNR Dekhuijzen,2 KCP Vissers,1 Y Engels,1,* Y Heijdra2,* 1Department of Anesthesiology, Pain and Palliative Medicine, 2Department of Lung Diseases, Radboud University Nijmegen Medical Centre, Nijmegen, the Netherlands *These authors contributed equally to this work Introduction: Early palliative care is not a common practice for patients with COPD. Important barriers are the identification of patients for palliative care and the organization of such care in this patient group. Objective: Pulmonologists have a central role in providing good quality palliative care for patients with COPD. To guide future research and develop services, their view on palliative care for these patients was explored. Methods: A survey study was performed by the members of the Netherlands Association of Physicians for Lung Diseases and Tuberculosis. Results: The 256 respondents (31.8% covered 85.9% of the hospital organizations in the Netherlands. Most pulmonologists (92.2% indicated to distinguish a palliative phase in the COPD trajectory, but there was no consensus about the different criteria used for its identification. Aspects of palliative care in COPD considered important were advance care planning conversation (82%, communication between pulmonologist and general practitioner (77%, and identification of the palliative phase (75.8%, while the latter was considered the most important aspect for improvement (67.6%. Pulmonologists indicated to prefer organizing palliative care for hospitalized patients with COPD themselves (55.5%, while 30.9% indicated to prefer cooperation with a specialized palliative care team (SPCT. In the ambulatory setting, a multidisciplinary cooperation between pulmonologist, general practitioner, and a respiratory nurse specialist was preferred (71.1%. Conclusion: To encourage pulmonologists to timely initiate palliative care in COPD, we recommend to conduct further research into more specific identification

  15. Professional carers' experiences of providing a pediatric palliative care service in Ireland.

    Science.gov (United States)

    Clarke, Jean; Quin, Suzanne

    2007-11-01

    In this article the authors present findings on professional carers' experience of providing pediatric palliative care to children with life-limiting conditions. For this qualitative study, part of a national pediatric palliative care needs analysis, the authors engaged in 15 focus group interviews and drew on the responses of open-ended questions to give voice to the experiences of professional carers and to situate the humanity of their caring reality. This humanity is articulated through three themes: clarity of definition and complexity of engagement, seeking to deliver a palliative care service, and the emotional cost of providing palliative care. Further analysis of these themes points to a work-life experience of skilled and emotional engagement with children, and their parents, in complex processes of caregiving and decision making. Pediatric palliative care occurs in an environment where parents shoulder a large burden of the care and professionals find themselves working in underresourced services.

  16. Palliative Care Planner: A Pilot Study to Evaluate Acceptability and Usability of an Electronic Health Records System-integrated, Needs-targeted App Platform.

    Science.gov (United States)

    Cox, Christopher E; Jones, Derek M; Reagan, Wen; Key, Mary D; Chow, Vinca; McFarlin, Jessica; Casarett, David; Creutzfeldt, Claire J; Docherty, Sharron L

    2018-01-01

    The quality and patient-centeredness of intensive care unit (ICU)-based palliative care delivery is highly variable. To develop and pilot an app platform for clinicians and ICU patients and their family members that enhances the delivery of needs-targeted palliative care. In the development phase of the study, we developed an electronic health record (EHR) system-integrated mobile web app system prototype, PCplanner (Palliative Care Planner). PCplanner screens the EHR for ICU patients meeting any of five prompts (triggers) for palliative care consultation, allows families to report their unmet palliative care needs, and alerts clinicians to these needs. The evaluation phase included a prospective before/after study conducted at a large academic medical center. Two control populations were enrolled in the before period to serve as context for the intervention. First, 25 ICU patients who received palliative care consults served as patient-level controls. Second, 49 family members of ICU patients who received mechanical ventilation for at least 48 hours served as family-level controls. Afterward, 14 patients, 18 family members, and 10 clinicians participated in the intervention evaluation period. Family member outcomes measured at baseline and 4 days later included acceptability (Client Satisfaction Questionnaire [CSQ]), usability (Systems Usability Scale [SUS]), and palliative care needs, assessed with the adapted needs of social nature, existential concerns, symptoms, and therapeutic interaction (NEST) scale; the Patient-Centeredness of Care Scale (PCCS); and the Perceived Stress Scale (PSS). Patient outcomes included frequency of goal concordant treatment, hospital length of stay, and discharge disposition. Family members reported high PCplanner acceptability (mean CSQ, 14.1 [SD, 1.4]) and usability (mean SUS, 21.1 [SD, 1.7]). PCplanner family member recipients experienced a 12.7-unit reduction in NEST score compared with a 3.4-unit increase among controls (P

  17. Caring for families of the terminally ill in Malaysia from palliative care nurses' perspectives.

    Science.gov (United States)

    Namasivayam, Pathma; Lee, Susan; O'Connor, Margaret; Barnett, Tony

    2014-01-01

    To describe the process that nurses experienced in engaging with families in Malaysian palliative care settings and the challenges they faced. In palliative care settings, nurses and the terminally ill person's family members interact very closely with each other. It is important for nurses to work with families to ensure that the care of the terminally ill person is optimised. A qualitative design using grounded theory methods was used to describe how nurses engaged with families and the challenges they faced. Twenty-two nurses from home care and inpatient palliative care settings across Malaysia participated in this study. Data were collected through seven interviews and eight focus group discussions conducted between 2007-2009. The main problem identified by nurses was the different expectations to patient care with families. The participants used the core process of Engaging with families to resolve these differences and implemented strategies described as Preparing families for palliative care, Modifying care and Staying engaged to promote greater consistency and quality of care. When participants were able to resolve their different expectations with families, these resulted in positive outcomes, described as Harmony. However, negative outcomes of participants not being able to resolve their different expectations with families were Disharmony. This study highlights the importance of engaging and supporting families of the terminally ill as well as providing a guide that may be used by nurses and carers to better respond to families' needs and concerns. The study draws attention to the need for formal palliative care education, inclusive of family care, to enable nurses to provide the terminally ill person and their family effective and appropriate care. © 2013 John Wiley & Sons Ltd.

  18. The development of hospitalbased palliative care services in public hospitals in the Western Cape South Africa

    Directory of Open Access Journals (Sweden)

    L Gwyther

    2018-02-01

    Full Text Available With the recent approval of a South African (SA National Policy Framework and Strategy for Palliative Care by the National Health Council, it is pertinent to reflect on initiatives to develop palliative care services in public hospitals. This article reviews the development of hospital-based palliative care services in the Western Cape, SA. Palliative care services in SA started in the non-governmental sector in the 1980s. The first SA hospital-based palliative care team was established in Charlotte Maxeke Johannesburg Academic Hospital in 2001. The awareness of the benefit of palliative care in the hospital setting led to the development of isolated pockets of excellence providing palliative care in the public health sector in SA. This article describes models for palliative care at tertiary, provincial and district hospital level, which could inform development of hospital-based palliative care as the national policy for palliative care is implemented in SA.

  19. 77 FR 76053 - Proposed Collection; Comment Request; Pediatric Palliative Care Campaign Pilot Survey

    Science.gov (United States)

    2012-12-26

    ... Request; Pediatric Palliative Care Campaign Pilot Survey Summary: In compliance with the requirement of...-days of the date of this publication. Proposed Collection: Pediatric Palliative Care Campaign Pilot... serious illness or life-limiting conditions. The Pediatric Palliative Care Campaign Pilot Survey will...

  20. Volunteers in Palliative Care - A Comparison of Seven European Countries: A Descriptive Study.

    Science.gov (United States)

    Woitha, Kathrin; Hasselaar, Jeroen; van Beek, Karen; Radbruch, Lukas; Jaspers, Birgit; Engels, Yvonne; Vissers, Kris

    2015-07-01

    In Europe, volunteers have an important role in the delivery of palliative care. As part of the EU co-funded Europall project, 4 aspects of volunteering in palliative care were studied for 7 European countries (Belgium, England, France, Germany, the Netherlands, Poland, and Spain). These included (1) involvement of volunteers in palliative care, (2) organization of palliative care volunteering, (3) legal regulations concerning volunteering, and (4) education and training of palliative care volunteering. A literature search combined with an interview study. Information from the scientific literature, and country-specific policy documents were obtained and completed, along with data of consecutive semi-structured interviews with experts in the field of palliative care in the participating countries. In all countries, volunteers appeared to be involved in palliative care, yet their involvement across health care settings differed per country. England, for example, has the highest number of volunteers whereas Spain has the lowest number. Volunteering is embedded in law and regulations in all participating countries except for England and the Netherlands. In all participating countries, training programs are available and volunteers are organized, both on a national and a regional level. This study provides a descriptive overview of volunteer work in palliative care in 7 European countries, with a focus on the organizational aspects. Further research should concentrate on the roles and responsibilities of volunteers in the care for the terminally ill in different European health systems. © 2014 World Institute of Pain.

  1. Physicians' opinions on palliative care and euthanasia in the Netherlands.

    Science.gov (United States)

    Georges, Jean-Jacques; Onwuteaka-Philipsen, Bregje D; van der Heide, Agnes; van der Wal, Gerrit; van der Maas, Paul J

    2006-10-01

    In recent decades significant developments in end-of-life care have taken place in The Netherlands. There has been more attention for palliative care and alongside the practice of euthanasia has been regulated. The aim of this paper is to describe the opinions of physicians with regard to the relationship between palliative care and euthanasia, and determinants of these opinions. Cross-sectional. Representative samples of physicians (n = 410), relatives of patients who died after euthanasia and physician-assisted suicide (EAS; n = 87), and members of the Euthanasia Review Committees (ERCs; n = 35). Structured interviews with physicians and relatives of patients, and a written questionnaire for the members of the ERCs. Approximately half of the physicians disagreed and one third agreed with statements describing the quality of palliative care in The Netherlands as suboptimal and describing the expertise of physicians with regard to palliative care as insufficient. Almost two thirds of the physicians disagreed with the suggestion that adequate treatment of pain and terminal care make euthanasia redundant. Having a religious belief, being a nursing home physician or a clinical specialist, never having performed euthanasia, and not wanting to perform euthanasia were related to the belief that adequate treatment of pain and terminal care could make euthanasia redundant. The study results indicate that most physicians in The Netherlands are not convinced that palliative care can always alleviate all suffering at the end of life and believe that euthanasia could be appropriate in some cases.

  2. The Richmond Agitation-Sedation Scale modified for palliative care inpatients (RASS-PAL): a pilot study exploring validity and feasibility in clinical practice.

    Science.gov (United States)

    Bush, Shirley H; Grassau, Pamela A; Yarmo, Michelle N; Zhang, Tinghua; Zinkie, Samantha J; Pereira, José L

    2014-03-31

    The Richmond Agitation-Sedation Scale (RASS), which assesses level of sedation and agitation, is a simple observational instrument which was developed and validated for the intensive care setting. Although used and recommended in palliative care settings, further validation is required in this patient population. The aim of this study was to explore the validity and feasibility of a version of the RASS modified for palliative care populations (RASS-PAL). A prospective study, using a mixed methods approach, was conducted. Thirteen health care professionals (physicians and nurses) working in an acute palliative care unit assessed ten consecutive patients with an agitated delirium or receiving palliative sedation. Patients were assessed at five designated time points using the RASS-PAL. Health care professionals completed a short survey and data from semi-structured interviews was analyzed using thematic analysis. The inter-rater intraclass correlation coefficient range of the RASS-PAL was 0.84 to 0.98 for the five time points. Professionals agreed that the tool was useful for assessing sedation and was easy to use. Its role in monitoring delirium however was deemed problematic. Professionals felt that it may assist interprofessional communication. The need for formal education on why and how to use the instrument was highlighted. This study provides preliminary validity evidence for the use of the RASS-PAL by physicians and nurses working in a palliative care unit, specifically for assessing sedation and agitation levels in the management of palliative sedation. Further validity evidence should be sought, particularly in the context of assessing delirium.

  3. The Richmond Agitation-Sedation Scale modified for palliative care inpatients (RASS-PAL): a pilot study exploring validity and feasibility in clinical practice

    Science.gov (United States)

    2014-01-01

    Background The Richmond Agitation-Sedation Scale (RASS), which assesses level of sedation and agitation, is a simple observational instrument which was developed and validated for the intensive care setting. Although used and recommended in palliative care settings, further validation is required in this patient population. The aim of this study was to explore the validity and feasibility of a version of the RASS modified for palliative care populations (RASS-PAL). Methods A prospective study, using a mixed methods approach, was conducted. Thirteen health care professionals (physicians and nurses) working in an acute palliative care unit assessed ten consecutive patients with an agitated delirium or receiving palliative sedation. Patients were assessed at five designated time points using the RASS-PAL. Health care professionals completed a short survey and data from semi-structured interviews was analyzed using thematic analysis. Results The inter-rater intraclass correlation coefficient range of the RASS-PAL was 0.84 to 0.98 for the five time points. Professionals agreed that the tool was useful for assessing sedation and was easy to use. Its role in monitoring delirium however was deemed problematic. Professionals felt that it may assist interprofessional communication. The need for formal education on why and how to use the instrument was highlighted. Conclusion This study provides preliminary validity evidence for the use of the RASS-PAL by physicians and nurses working in a palliative care unit, specifically for assessing sedation and agitation levels in the management of palliative sedation. Further validity evidence should be sought, particularly in the context of assessing delirium. PMID:24684942

  4. The Impact of a Novel Tool for Comprehensive Assessment of Palliative Care (MPCAT) on Assessment Outcome at 6- and 12-Month Follow-Up.

    LENUS (Irish Health Repository)

    O'Reilly, Martina

    2016-07-01

    Assessment in palliative care settings should be focused, sensitive, specific, and effective to minimize discomfort to vulnerable and often highly morbid patients. This report describes the development of an admission assessment protocol for a Specialist Palliative Care Inpatient Unit and its implementation into clinical practice.

  5. Paediatric palliative care and intellectual disability-A unique context.

    Science.gov (United States)

    Duc, Jacqueline K; Herbert, Anthony Robert; Heussler, Helen S

    2017-11-01

    Paediatric palliative care is a nuanced area of practice with additional complexities in the context of intellectual disability. There is currently minimal research to guide clinicians working in this challenging area of care. This study describes the complex care of children with life-limiting conditions and intellectual disability by means of a literature synthesis and commentary with "best-practice" guide. As few articles concerning children with intellectual disability and palliative care needs were identified by formal systematic review, our expert consensus group has drawn from the paediatric palliative, oncology and adult intellectual disability literature to highlight common clinical challenges encountered in the day-to-day care of children with intellectual disability and life-limiting conditions. A longitudinal child- and family-centred approach is key to ensuring best-practice care for families of children with life-limiting conditions and intellectual disability. As highlighted by the great absence of literature addressing this important patient population, further research in this area is urgently required. © 2017 John Wiley & Sons Ltd.

  6. Study protocol: evaluation of specialized outpatient palliative care (SOPC) in the German state of Hesse (ELSAH study) - work package II: palliative care for pediatric patients.

    Science.gov (United States)

    Ulrich, Lisa-R; Gruber, Dania; Hach, Michaela; Boesner, Stefan; Haasenritter, Joerg; Kuss, Katrin; Seipp, Hannah; Gerlach, Ferdinand M; Erler, Antje

    2018-01-05

    In 2007, the European Association of Palliative Care (EAPC) provided a comprehensive set of recommendations and standards for the provision of adequate pediatric palliative care. A number of studies have shown deficits in pediatric palliative care compared to EAPC standards. In Germany, pediatric palliative care patients can be referred to specialized outpatient palliative care (SOPC) services, which are known to enhance quality of life, e.g. by avoiding hospitalization. However, current regulations for the provision of SOPC in Germany do not account for the different circumstances and needs of children and their families compared to adult palliative care patients. The "Evaluation of specialized outpatient palliative care (SOPC) in the German state of Hesse (ELSAH)" study aims to perform a needs assessment for pediatric patients (children, adolescents and young adults) receiving SOPC. This paper presents the study protocol for this assessment (work package II). The study uses a sequential mixed-methods study design with a focus on qualitative research. Data collection from professional and family caregivers and, as far as possible, pediatric patients, will involve both a written questionnaire based on European recommendations for pediatric palliative care, and semi-structured interviews. Additionally, professional caregivers will take part in focus group discussions and participatory observations. Interviews and focus groups will be tape- or video-recorded, transcribed verbatim and analyzed in accordance with the principles of grounded theory (interviews) and content analysis (focus groups). A structured field note template will be used to record notes taken during the participatory observations. Statistical Package for Social Sciences (SPSS, version 22 or higher) will be used for descriptive statistical analyses. The qualitative data analyses will be software-assisted by MAXQDA (version 12 or higher). This study will provide important information on what matters

  7. Psychosocial care and the role of clinical psychologists in palliative care.

    Science.gov (United States)

    Fan, Sheng-Yu; Lin, Wei-Chun; Lin, I-Mei

    2015-12-01

    The aim of this study was to explore the works of clinical psychologists in palliative care in Taiwan. Clinical psychologists who were working or had experience in palliative care were recruited. A 2-stage qualitative method study was conducted, including semistructured interviews and a focus group. The following 4 main themes were identified: (1) the essential nature of the psychologists' care were caring and company; (2) the dynamic process included psychological assessment, intervention, and evaluation based on psychological knowledge; (3) they needed to modify their care using an integrative framework, by setting practical goals and using techniques with flexibility; and (4) they faced external and internal challenges in this field. Clinical psychologists have beneficial contributions but have to modify psychosocial care based on the patients' needs and clinical situations. © The Author(s) 2014.

  8. Palliative Care Exposure in Internal Medicine Residency Education: A Survey of ACGME Internal Medicine Program Directors.

    Science.gov (United States)

    Edwards, Asher; Nam, Samuel

    2018-01-01

    As the baby boomer generation ages, the need for palliative care services will be paramount and yet training for palliative care physicians is currently inadequate to meet the current palliative care needs. Nonspecialty-trained physicians will need to supplement the gap between supply and demand. Yet, no uniform guidelines exist for the training of internal medicine residents in palliative care. To our knowledge, no systematic study has been performed to evaluate how internal medicine residencies currently integrate palliative care into their training. In this study, we surveyed 338 Accreditation Council for Graduate Medical Education-accredited internal medicine program directors. We queried how palliative care was integrated into their training programs. The vast majority of respondents felt that palliative care training was "very important" (87.5%) and 75.9% of respondents offered some kind of palliative care rotation, often with a multidisciplinary approach. Moving forward, we are hopeful that the data provided from our survey will act as a launching point for more formal investigations into palliative care education for internal medicine residents. Concurrently, policy makers should aid in palliative care instruction by formalizing required palliative care training for internal medicine residents.

  9. Hospice palliative care article publications: An analysis of the Web of Science database from 1993 to 2013.

    Science.gov (United States)

    Chang, Hsiao-Ting; Lin, Ming-Hwai; Chen, Chun-Ku; Hwang, Shinn-Jang; Hwang, I-Hsuan; Chen, Yu-Chun

    2016-01-01

    Academic publications are important for developing a medical specialty or discipline and improvements of quality of care. As hospice palliative care medicine is a rapidly growing medical specialty in Taiwan, this study aimed to analyze the hospice palliative care-related publications from 1993 through 2013 both worldwide and in Taiwan, by using the Web of Science database. Academic articles published with topics including "hospice", "palliative care", "end of life care", and "terminal care" were retrieved and analyzed from the Web of Science database, which includes documents published in Science Citation Index-Expanded and Social Science Citation Indexed journals from 1993 to 2013. Compound annual growth rates (CAGRs) were calculated to evaluate the trends of publications. There were a total of 27,788 documents published worldwide during the years 1993 to 2013. The top five most prolific countries/areas with published documents were the United States (11,419 documents, 41.09%), England (3620 documents, 13.03%), Canada (2428 documents, 8.74%), Germany (1598 documents, 5.75%), and Australia (1580 documents, 5.69%). Three hundred and ten documents (1.12%) were published from Taiwan, which ranks second among Asian countries (after Japan, with 594 documents, 2.14%) and 16(th) in the world. During this 21-year period, the number of hospice palliative care-related article publications increased rapidly. The worldwide CAGR for hospice palliative care publications during 1993 through 2013 was 12.9%. As for Taiwan, the CAGR for publications during 1999 through 2013 was 19.4%. The majority of these documents were submitted from universities or hospitals affiliated to universities. The number of hospice palliative care-related publications increased rapidly from 1993 to 2013 in the world and in Taiwan; however, the number of publications from Taiwan is still far below those published in several other countries. Further research is needed to identify and try to reduce the

  10. [Providing regular relief; considerations for palliative care in the Netherlands

    NARCIS (Netherlands)

    Crul, B.J.P.; Weel, C. van

    2001-01-01

    Over the last few decades the attention devoted to the palliative aspects of medicine, particularly those in hospital care, has declined due to the emphasis on medical technology. In Anglo-Saxon countries a review of this development resulted in structured palliative care that benefited terminally

  11. Palliative care policy analysis in Iran: A conceptual model

    Directory of Open Access Journals (Sweden)

    Mojgan Ansari

    2018-01-01

    Full Text Available Background: Palliative care programs are rapidly evolving for patients with life-threatening illnesses. Increased and earlier access for facilities is a subject of growing importance in health services, policy, and research. Aim: This study was conducted to explain stakeholders' perceptions of the factors affecting the design of such a palliative care system and its policy analysis. Methodology: Semi-structured in-depth interviews conducted following purposive sampling of the participants. Twenty-two participants were included in the study. The interviews were analyzed using qualitative-directed content analysis based on "policy analysis triangle" framework. Results: The findings showed the impact of four categories, namely context (political, social, and structural feasibility, content (target setting, process (attracting stakeholder participation, the standardization of care, and education management, and actors (the Ministry of Health and Medical Education, health-care providers, and volunteers in the analysis of the palliative care policies of Iran. Conclusion: In the past 6 years, attention to palliative care has increased significantly as a result of the National Cancer Research Network with the support of the Ministry of Health. The success of health system plan requires great attention to its aspects of social, political, and executive feasibility. Careful management by policymakers of different stakeholders is vital to ensure support for any national plan, but this is challenging to achieve.

  12. Palliative care and pediatric surgical oncology.

    Science.gov (United States)

    Inserra, Alessandro; Narciso, Alessandra; Paolantonio, Guglielmo; Messina, Raffaella; Crocoli, Alessandro

    2016-10-01

    Survival rate for childhood cancer has increased in recent years, reaching as high as 70% in developed countries compared with 54% for all cancers diagnosed in the 1980s. In the remaining 30%, progression or metastatic disease leads to death and in this framework palliative care has an outstanding role though not well settled in all its facets. In this landscape, surgery has a supportive actor role integrated with other welfare aspects from which are not severable. The definition of surgical palliation has moved from the ancient definition of noncurative surgery to a group of practices performed not to cure but to alleviate an organ dysfunction offering the best quality of life possible in all the aspects of life (pain, dysfunctions, caregivers, psychosocial, etc.). To emphasize this aspect a more modern definition has been introduced: palliative therapy in whose context is comprised not only the care assistance but also the plans of care since the onset of illness, teaching the matter to surgeons in training and share paths. Literature is very poor regarding surgical aspects specifically dedicated and all researches (PubMed, Google Scholar, and Cochrane) with various meshing terms result in a more oncologic and psychosocial effort. Copyright © 2016 Elsevier Inc. All rights reserved.

  13. Reflections on Palliative Care from the Jewish and Islamic Tradition

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    Michael Schultz

    2012-01-01

    Full Text Available Spiritual care is a vital part of holistic patient care. Awareness of common patient beliefs will facilitate discussions about spirituality. Such conversations are inherently good for the patient, deepen the caring staff-patient-family relationship, and enhance understanding of how beliefs influence care decisions. All healthcare providers are likely to encounter Muslim patients, yet many lack basic knowledge of the Muslim faith and of the applications of Islamic teachings to palliative care. Similarly, some of the concepts underlying positive Jewish approaches to palliative care are not well known. We outline Jewish and Islamic attitudes toward suffering, treatment, and the end of life. We discuss our religions' approaches to treatments deemed unnecessary by medical staff, and consider some of the cultural reasons that patients and family members might object to palliative care, concluding with specific suggestions for the medical team.

  14. Palliative care in neuromuscular diseases

    NARCIS (Netherlands)

    de Visser, Marianne; Oliver, David J.

    2017-01-01

    Purpose of review Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness. Neuromuscular disorders (NMDs) are characterized by progressive muscle weakness, leading to pronounced and incapacitating

  15. Perceptions of the care received from Australian palliative care services: A caregiver perspective.

    Science.gov (United States)

    Pidgeon, Tanya M; Johnson, Claire E; Lester, Leanne; Currow, David; Yates, Patsy; Allingham, Samuel F; Bird, Sonia; Eagar, Kathy

    2018-04-01

    ABSTRACTBackground:Caregiver satisfaction and experience surveys help health professionals to understand, measure, and improve the quality of care provided for patients and their families. Our aim was to explore caregiver perceptions of the care received from Australian specialist palliative care services. Caregivers of patients receiving palliative care in services registered with Australia's Palliative Care Outcomes Collaboration were invited to participate in a caregiver survey. The survey included the FAMCARE-2 and four items from the Ongoing Needs Identification: Caregiver Profile questionnaire. Surveys were completed by 1,592 caregivers from 49 services. Most respondents reported high satisfaction and positive experiences. Caregivers receiving care from community-based palliative care teams were less satisfied with the management of physical symptoms and comfort (odds ratio [OR] = 0.29; 95% confidence interval [CI95%] = 0.14, 0.59), with patient psychological care (OR = 0.56; CI95% = 0.32, 0.98), and with family support (OR = 0.52; CI95% = 0.35, 0.77) than caregivers of patients in an inpatient setting. If aged over 60 years, caregivers were less likely to have their information needs met regarding available support services (OR = 0.98; CI95% = 0.97, 0.98) and carer payments (OR = 0.99; CI95% = 0.98, 1.00). Also, caregivers were less likely to receive adequate information about carer payments if located in an outer regional area (OR = 0.41; CI95% = 0.25, 0.64). With practical training, caregivers receiving care from community services reported inadequate information provision to support them in caring for patients (OR = 0.60; CI95% = 0.45, 0.81). While our study identified caregivers as having positive and satisfactory experiences across all domains of care, there is room for improvement in the delivery of palliative care across symptom management, as well as patient and caregiver support, especially in community settings. Caregiver surveys can facilitate the

  16. Evaluating an holistic assessment tool for palliative care practice.

    Science.gov (United States)

    McIlfatrick, Sonja; Hasson, Felicity

    2014-04-01

    To evaluate a holistic assessment tool for palliative care practice. This included identifying patients' needs using the holistic tool and exploring the usability, applicability and barriers and facilitators towards implementation in practice. The delivery of effective holistic palliative care requires a careful assessment of the patients' needs and circumstances. Whilst holistic assessment of palliative care needs is advocated, questions exist around the appropriateness of tools to assist this process. Mixed-method research design. Data collection involved an analysis of piloted holistic assessments undertaken using the tool (n = 132) and two focus groups with healthcare professionals (n = 10). The tool enabled health professionals to identify and gain an understanding of the needs of the patients, specifically in relation to the physical healthcare needs. Differences, however, between the analysis of the tool documentation and focus group responses were identified in particular areas. For example, 59 (68·8%) respondents had discussed preferred priorities of care with the patient; however, focus group comments revealed participants had concerns around this. Similarly, whilst over half of responses (n = 50; 57·5%) had considered a prognostic clinical indicator for the patient as an action, focus group results indicated questions around healthcare professionals' knowledge and perceived usefulness of such indicators. Positive aspects of the tool were that it was easy to understand and captured the needs of individuals. Negative aspects of the tool were that it was repetitive and the experience of assessors required consideration. The tool evaluation identified questions regarding holistic assessment in palliative care practice and the importance of communication. A holistic assessment tool can support patient assessment and identification of patients' needs in the 'real world' of palliative care practice, but the 'tool' is merely an aid to assist professionals to

  17. Level of Discomfort Decreases After the Administration of Continuous Palliative Sedation: A Prospective Multicenter Study in Hospices and Palliative Care Units.

    Science.gov (United States)

    van Deijck, Rogier H P D; Hasselaar, Jeroen G J; Verhagen, Stans C A H H V M; Vissers, Kris C P; Koopmans, Raymond T C M

    2016-09-01

    A gold standard or validated tool for monitoring the level of discomfort during continuous palliative sedation (CPS) is lacking. Therefore, little is known about the course of discomfort in sedated patients, the efficacy of CPS, and the determinants of discomfort during CPS. To identify the course of discomfort in patients receiving CPS. A prospective observational multicenter study in nine hospices and palliative care units was performed. The Discomfort Scale-Dementia of Alzheimer Type (DS-DAT) was independently assessed for monitoring of patient discomfort during CPS. The DS-DAT scores range from 0 (no observed discomfort) to a maximum of 27 (high level of observed discomfort). Using a mixed model, the mean group score of discomfort between four predefined time frames of CPS was compared, correcting for confounding patient characteristics. A total of 130 patients were sedated, and the DS-DAT was completed in 106 patients at least once. The median duration of the sedation in these 106 patients was 25.5 hours (range 2-161). The mean score of the DS-DAT in the phase before sedation was 12.16 (95% CI 9.83-14.50) and decreased significantly to 8.06 (95% CI 5.53-10.58) in the titration phase of sedation. The mean score of the DS-DAT in the final phase of sedation was 7.42 (95% CI 4.90-9.94). This study shows that CPS is associated with a decrease in the level of discomfort within an acceptable time frame, although in some sedated patients higher levels of discomfort in the last hours of life occurred. Although the DS-DAT seems to be of value for monitoring the level of discomfort during CPS, the results of this study should be interpreted within the constraints of the limitations, and further research on the psychometric properties of this tool is needed before the DS-DAT can be used in clinical practice. Copyright © 2016 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

  18. Palliative care and end-of-life care for polypathological patients.

    Science.gov (United States)

    Martinez-Litago, E; Martínez-Velasco, M C; Muniesa-Zaragozano, M P

    2017-12-01

    Patients with advanced chronic diseases receive fragmented care, which entails high resource consumption and a poor quality of life. Uncertainty in the prognosis and scarce investigation into the importance of symptomatic control in this patient group hinders a proper therapeutic approach. Palliative care teams optimise the use of resources through comprehensive patient care, the optimization of the patient's environment, communication, the preparation of early care plans and the creation of coordinated healthcare circuits, which improve the quality of the patient's care in advanced stages of the disease. In the end-of-life phase, the therapeutic approach is focused on symptomatic control, selecting treatments according to the cause, comorbidities and the patient's wishes. To control refractory symptoms, palliative sedation is considered an indispensable option. Copyright © 2017 Elsevier España, S.L.U. and Sociedad Española de Medicina Interna (SEMI). All rights reserved.

  19. Integration of early specialist palliative care in cancer care: Survey of oncologists, oncology nurses, and patients

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    Naveen Salins

    2016-01-01

    Conclusion: Oncologists, oncology nurses, and patients felt that integration of early specialist palliative care in cancer improves symptom control, end-of-life care, health-related communication, and continuity of care. The perceptions of benefit of the palliative care intervention in the components surveyed, differed among the three groups.

  20. Euthanasia and physician-assisted suicide: A white paper from the European Association for Palliative Care.

    Science.gov (United States)

    Radbruch, Lukas; Leget, Carlo; Bahr, Patrick; Müller-Busch, Christof; Ellershaw, John; de Conno, Franco; Vanden Berghe, Paul

    2016-02-01

    In recognition of the ongoing discussion on euthanasia and physician-assisted suicide, the Board of Directors of the European Association for Palliative Care commissioned this white paper from the palliative care perspective. This white paper aims to provide an ethical framework for palliative care professionals on euthanasia and physician-assisted suicide. It also aims to provide an overview on the available evidence as well as a discourse of ethical principles related to these issues. Starting from a 2003 European Association for Palliative Care position paper, 21 statements were drafted and submitted to a five-round Delphi process A panel with 17 experts commented on the paper in round 1. Board members of national palliative care or hospice associations that are collective members of European Association for Palliative Care were invited to an online survey in rounds 2 and 3. The expert panel and the European Association for Palliative Care board members participated in rounds 4 and 5. This final version was adopted as an official position paper of the European Association for Palliative Care in April 2015. Main topics of the white paper are concepts and definitions of palliative care, its values and philosophy, euthanasia and physician-assisted suicide, key issues on the patient and the organizational level. The consensus process confirmed the 2003 European Association for Palliative Care white paper and its position on the relationship between palliative care and euthanasia and physician-assisted suicide. The European Association for Palliative Care feels that it is important to contribute to informed public debates on these issues. Complete consensus seems to be unachievable due to incompatible normative frameworks that clash. © The Author(s) 2015.

  1. Hypnosis in palliative care: from clinical insights to the science of self-regulation.

    Science.gov (United States)

    Landry, Mathieu; Stendel, Moriah; Landry, Michel; Raz, Amir

    2018-01-01

    Palliative care spans a wide-ranging spectrum: from pain-management to spiritual support. As the demand for end-of-life care increases, so does the demand for innovative, effective, interventions. Mind-body techniques seem especially advantageous in a palliative context. Here we show that hypnosis serves an excellent adjunct therapy in palliative care to boost the efficacy of standard treatments. With the overarching goal of bridging clinical and scientific insights, we outline how five core principles of hypnosis can benefit the diverse needs of palliative care.

  2. Effectiveness of the certificate course in essentials of palliative care program on the knowledge in palliative care among the participants: A cross-sectional interventional study

    Directory of Open Access Journals (Sweden)

    Sushma Bhatnagar

    2018-01-01

    Full Text Available Background: Palliative medicine is an upcoming new specialty aimed at relieving suffering, improving quality of life and comfort care. There are many challenges and barriers in providing palliative care to our patients. The major challenge is lack of knowledge, attitude and skills among health-care providers. Objectives: Evaluate the effectiveness of the certificate course in essentials of palliative care (CCEPC program on the knowledge in palliative care among the participants. Subjects and Methods: All participants (n = 29 of the CCEPC at All India Institute of Medical Sciences, Delhi, giving consent for pretest and posttest were recruited in the study. This educational lecture of 15 h was presented to all the participants following pretest and participants were given same set of questionnaire to be filled as postintervention test. Results: In pretest, 7/29 (24.1% had good knowledge which improved to 24/29 (82.8% after the program. In pretest, 62.1% had average knowledge and only 13.8% had poor knowledge. There was also improvement in communication skills, symptom management, breaking bad news, and pain assessment after completion of the program. Conclusion: The CCEPC is an effective program and improving the knowledge level about palliative care among the participants. The participants should implement this knowledge and the skills in their day-to-day practice to improve the quality of life of patients.

  3. Integration of Latino/a cultural values into palliative health care: a culture centered model.

    Science.gov (United States)

    Adames, Hector Y; Chavez-Dueñas, Nayeli Y; Fuentes, Milton A; Salas, Silvia P; Perez-Chavez, Jessica G

    2014-04-01

    Culture helps us grapple with, understand, and navigate the dying process. Although often overlooked, cultural values play a critical and influential role in palliative care. The purpose of the present study was two-fold: one, to review whether Latino/a cultural values have been integrated into the palliative care literature for Latinos/as; two, identify publications that provide recommendations on how palliative care providers can integrate Latino/a cultural values into the end-of-life care. A comprehensive systematic review on the area of Latino/a cultural values in palliative care was conducted via an electronic literature search of publications between 1930-2013. Five articles were identified for reviewing, discussing, or mentioning Latino/a cultural values and palliative care. Only one article specifically addressed Latino/a cultural values in palliative care. The four remaining articles discuss or mention cultural values; however, the cultural values were not the main focus of each article's thesis. The results of the current study highlight the lack of literature specifically addressing the importance of integrating Latino/a cultural values into the delivery of palliative care. As a result, this article introduces the Culture-Centered Palliative Care Model (CCPC). The article defines five key traditional Latino/a cultural values (i.e., familismo, personalismo, respeto, confianza, and dignidad), discusses the influence of each value on palliative health care, and ends with practical recommendations for service providers. Special attention is given to the stages of acculturation and ethnic identity.

  4. Current funding and financing issues in the Australian hospice and palliative care sector.

    Science.gov (United States)

    Gordon, Robert; Eagar, Kathy; Currow, David; Green, Janette

    2009-07-01

    This article overviews current funding and financing issues in the Australian hospice and palliative care sector. Within Australia, the major responsibilities for managing the health care system are shared between two levels of government. Funding arrangements vary according to the type of care. The delivery of palliative care services is a State/Territory responsibility. Recently, almost all States/Territories have developed overarching frameworks to guide the development of palliative care policies, including funding and service delivery structures. Palliative care services in Australia comprise a mix of specialist providers, generalist providers, and support services in the public, nongovernment, and private sectors. The National Palliative Care Strategy is a joint strategy of the Commonwealth and States that commenced in 2002 and includes a number of major issues. Following a national study in 1996, the Australian National Subacute and Nonacute Patient (AN-SNAP) system was endorsed as the national casemix classification for subacute and nonacute care. Funding for palliative care services varies depending on the type of service and the setting in which it is provided. There is no national model for funding inpatient or community services, which is a State/Territory responsibility. A summary of funding arrangements is provided in this article. Palliative care continues to evolve at a rapid rate in Australia. Increasingly flexible evidence-based models of care delivery are emerging. This article argues that it will be critical for equally flexible funding and financing models to be developed. Furthermore, it is critical that palliative care patients can be identified, classified, and costed. Casemix classifications such as AN-SNAP represent an important starting point but further work is required.

  5. Parental experiences with a paediatric palliative care team: A qualitative study

    NARCIS (Netherlands)

    Verberne, Lisa M.; Schouten-van Meeteren, Antoinette Yn; Bosman, Diederik K.; Colenbrander, Derk A.; Jagt, Charissa T.; Grootenhuis, Martha A.; van Delden, Johannes Jm; Kars, Marijke C.

    2017-01-01

    Background: Parents of children with a life-limiting disease have to rely on themselves at home while adequate paediatric palliative care is lacking. In several countries, paediatric palliative care teams are introduced to ensure continuity and quality of care and to support the child and the

  6. Improved competence after a palliative care course for internal medicine residents

    NARCIS (Netherlands)

    Mulder, S. F.; Bleijenberg, G.; Verhagen, S. C.; Stuyt, P. M. J.; Schijven, M. P.; Tack, C. J.

    2009-01-01

    Residents report that they received inadequate teaching in palliative care and low levels of comfort and skills when taking care of dying patients. This study describes the effects of a problem-based palliative care course on perceived competence and knowledge in a representative Dutch cohort of

  7. Pediatric Palliative Care: A Personal Story

    Medline Plus

    Full Text Available ... a patient's and family's experience with illness. Category Science & Technology License Standard YouTube License ... 4:24 LIFE Before Death Pediatric Palliative Care - Duration: 5:27. ...

  8. A palliative care resource for professional carers of people with learning disabilities.

    Science.gov (United States)

    Reddall, C

    2010-07-01

    People with learning disabilities who have a life-threatening illness, are as entitled as other members of the population to receive good palliative care in their home of choice. However, professional carers of people with learning disability are generally unaware of the meaning of palliative care, and how they can access palliative care support. More importantly, they may feel they are not capable of caring for a resident with a life-threatening illness in the home environment. This article uses a case study to help illustrate the value of compiling a resource booklet for professional carers of people with learning disabilities. By providing information on palliative care, that is easy to understand and easily accessible, professional carers of these people can have a valuable resource which will enable them to provide general palliative care when needed. (I use the term professional carers to refer to carers who are paid to look after people with learning disabilities either in care homes, or in supported living homes in the general community).

  9. Shelter-based palliative care for the homeless terminally ill.

    Science.gov (United States)

    Podymow, Tiina; Turnbull, Jeffrey; Coyle, Doug

    2006-03-01

    The homeless have high rates of mortality, but live in environments not conducive to terminal care. Traditional palliative care hospitals may be reluctant to accept such patients, due to behavior or lifestyle concerns. The Ottawa Inner City Health Project (OICHP) is a pilot study to improve health care delivery to homeless adults. This is a retrospective analysis of a cohort of terminally ill homeless individuals and the effectiveness of shelter-based palliative care. As proof of principle, a cost comparison was performed. 28 consecutive homeless terminally ill patients were admitted and died at a shelter-based palliative care hospice. Demographics, diagnoses at admission and course were recorded. Burden of illness was assessed by medical and psychiatric diagnoses, addictions, Karnofsky scale and symptom management. An expert panel was convened to identify alternate care locations. Using standard costing scales, direct versus alternate care costs were compared. 28 patients had a mean age 49 years; average length of stay 120 days. DIAGNOSES: liver disease 43%, HIV/AIDS 25%, malignancy 25% and other 8%. Addiction to drugs or alcohol and mental illness in 82% of patients. Karnofsky performance score mean 40 +/- 16.8. Pain management with continuous opiates in 71%. The majority reunited with family. Compared to alternate care locations, the hospice projected 1.39 million dollars savings for the patients described. The homeless terminally ill have a heavy burden of disease including physical illness, psychiatric conditions and addictions. Shelter-based palliative care can provide effective end-of-life care to terminally ill homeless individuals at potentially substantial cost savings.

  10. A Novel Use of Peer Coaching to Teach Primary Palliative Care Skills: Coaching Consultation.

    Science.gov (United States)

    Jacobsen, Juliet; Alexander Cole, Corinne; Daubman, Bethany-Rose; Banerji, Debjani; Greer, Joseph A; O'Brien, Karen; Doyle, Kathleen; Jackson, Vicki A

    2017-10-01

    We aim to address palliative care workforce shortages by teaching clinicians how to provide primary palliative care through peer coaching. We offered peer coaching to internal medicine residents and hospitalists (attendings, nurse practioners, and physician assistants). An audit of peer coaching encounters and coachee feedback to better understand the applicability of peer coaching in the inpatient setting to teach primary palliative care. Residents and hospitalist attendings participated in peer coaching for a broad range of palliative care-related questions about pain and symptom management (44%), communication (34%), and hospice (22%). Clinicians billed for 68% of encounters using a time-based billing model. Content analysis of coachee feedback identified that the most useful elements of coaching are easy access to expertise, tailored teaching, and being in partnership. Peer coaching can be provided in the inpatient setting to teach primary palliative care and potentially extend the palliative care work force. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

  11. Palliative care in amyotrophic lateral sclerosis: a review of current international guidelines and initiatives.

    Science.gov (United States)

    Bede, Peter; Oliver, David; Stodart, James; van den Berg, Leonard; Simmons, Zachary; O Brannagáin, Doiminic; Borasio, Gian Domenico; Hardiman, Orla

    2011-04-01

    Amyotrophic lateral sclerosis (ALS) is a relentlessly progressive neurodegenerative condition. Optimal management requires a palliative approach from diagnosis with emphasis on patient autonomy, dignity and quality of life. To conduct a systematic analysis of the type, level and timing of specialist palliative care intervention in ALS. Despite an international consensus that ALS management should adopt a multidisciplinary approach, integration of palliative care into ALS management varies considerably across health care systems. Late referral to palliative services in ALS is not uncommon and may impact negatively on the quality of life of ALS patients and their caregivers. However, common themes and principles of engagement can be identified across different jurisdictions, and measurement systems have been established that can assess the impact of palliative care intervention. There is considerable evidence that palliative care intervention improves quality of life in patients and carers. International consensus guidelines would assist in the development of a framework for active palliative care engagement in ALS and other neurodegenerative diseases.

  12. Factors Associated with Attitude and Knowledge Toward Hospice Palliative Care Among Medical Caregivers

    Directory of Open Access Journals (Sweden)

    Shih-Yi Lee

    2015-06-01

    Conclusion: Life and work experience improve the accuracy of medical staff in providing hospice palliative care. A culture-based, case-oriented continuing education program and a timely revision of the Hospice Palliative Care Article are recommended to increase the consistency between the principle and the practice of hospice palliative care.

  13. Palliative care provision for patients with chronic obstructive pulmonary disease

    Directory of Open Access Journals (Sweden)

    Yohannes Abebaw

    2007-04-01

    Full Text Available Abstract Chronic obstructive pulmonary disease (COPD is a major cause of disability, morbidity and mortality in old age. Patients with advanced stage COPD are most likely to be admitted three to four times per year with acute exacerbations of COPD (AECOPD which are costly to manage. The adverse events of AECOPD are associated with poor quality of life, severe physical disability, loneliness, and depression and anxiety symptoms. Currently there is a lack of palliative care provision for patients with advanced stage COPD compared with cancer patients despite having poor prognosis, intolerable dyspnoea, lower levels of self efficacy, greater disability, poor quality of life and higher levels of anxiety and depression. These symptoms affect patients' quality of life and can be a source of concern for family and carers as most patients are likely to be housebound and may be in need of continuous support and care. Evidence of palliative care provision for cancer patients indicate that it improves quality of life and reduces health care costs. The reasons why COPD patients do not receive palliative care are complex. This partly may relate to prognostic accuracy of patients' survival which poses a challenge for healthcare professionals, including general practitioners for patients with advanced stage COPD, as they are less likely to engage in end-of-life care planning in contrast with terminal disease like cancer. Furthermore there is a lack of resources which constraints for the wider availability of the palliative care programmes in the health care system. Potential barriers may include unwillingness of patients to discuss advance care planning and end-of-life care with their general practitioners, lack of time, increased workload, and fear of uncertainty of the information to provide about the prognosis of the disease and also lack of appropriate tools to guide general practitioners when to refer patients for palliative care. COPD is a chronic

  14. Do palliative care interventions reduce emergency department visits among patients with cancer at the end of life? A systematic review.

    Science.gov (United States)

    DiMartino, Lisa D; Weiner, Bryan J; Mayer, Deborah K; Jackson, George L; Biddle, Andrea K

    2014-12-01

    Frequent emergency department (ED) visits are an indicator of poor quality of cancer care. Coordination of care through the use of palliative care teams may limit aggressive care and improve outcomes for patients with cancer at the end of life. To systematically review the literature to determine whether palliative care interventions implemented in the hospital, home, or outpatient clinic are more effective than usual care in reducing ED visits among patients with cancer at the end of life. PubMed, EMBASE, and CINAHL databases were searched from database inception to May 7, 2014. Only randomized/non-randomized controlled trials (RCTs) and observational studies examining the effect of palliative care interventions on ED visits among adult patients with cancer with advanced disease were considered. Data were abstracted from the articles that met all the inclusion criteria. A second reviewer independently abstracted data from 2 articles and discrepancies were resolved. From 464 abstracts, 2 RCTs, 10 observational studies, and 1 non-RCT/quasi-experimental study were included. Overall there is limited evidence to support the use of palliative care interventions to reduce ED visits, although studies examining effect of hospice care and those conducted outside of the United States reported a statistically significant reduction in ED visits. Evidence regarding whether palliative care interventions implemented in the hospital, home or outpatient clinic are more effective than usual care at reducing ED visits is not strongly substantiated based on the literature reviewed. Improvements in the quality of reporting for studies examining the effect of palliative care interventions on ED use are needed.

  15. [Evaluation of 12 pilot projects to improve outpatient palliative care].

    Science.gov (United States)

    Schmidt-Wolf, G; Elsner, F; Lindena, G; Hilgers, R-D; Heussen, N; Rolke, R; Ostgathe, C; Radbruch, L

    2013-12-01

    With a priority programme the German Cancer Aid supported the development of quality-assured outpatient palliative care to cover the whole country. The 12 regional pilot projects funded with the aim to improve outpatient palliative care in different models and different frameworks were concurrently monitored and evaluated. The supported projects, starting and ending individually, documented all patients who were cared for using HOPE (Hospice and palliative care evaluation) and MIDOS (Minimal documentation system for palliative patients). Total data were analyzed for 3239 patients decriptively. In addition to the quantitative data the experiences of the projects were recorded in a number of workshops (2008, 2009, 2010, and 2012). In particular, the experiences reported in the final meeting in July 2012 were considered for this article as well as the final reports for the German Cancer Aid. In the quantitative evaluation 85.6% of 3239 palliative care patients had a cancer diagnosis. In all model projects the goal of a network with close cooperation of primary providers, social support, and outpatient and inpatient specialist services has been achieved. For all projects, the initial financing of the German Cancer Aid was extremely important, because contracts with health insurance funds were negotiated slowly, and could then be built on the experiences with the projects. The participants of the project-completion meeting emphasized the need to carry out a market analysis before starting palliative care organizations considering the different regional structures and target groups of patients. Education, training and continuing education programs contribute significantly to the network. A reliably funded coordination center/case management across all institutions is extremely important. © Georg Thieme Verlag KG Stuttgart · New York.

  16. Effectiveness of palliative home-care services in reducing hospital admissions and determinants of hospitalization for terminally ill patients followed up by a palliative home-care team: a retrospective cohort study.

    Science.gov (United States)

    Riolfi, Mirko; Buja, Alessandra; Zanardo, Chiara; Marangon, Chiara Francesca; Manno, Pietro; Baldo, Vincenzo

    2014-05-01

    It has been demonstrated that most patients in the terminal stages of cancer would benefit from palliative home-care services. The aim of this study was to assess the effectiveness of appropriate palliative home-care services in reducing hospital admissions, and to identify factors predicting the likelihood of patients treated at home being hospitalized. Retrospective cohort study. We enrolled all 402 patients listed by the Local Health Authority No. 5, Veneto Region (North-East Italy), as dying of cancer in 2011. Of the cohort considered, 39.9% patients had been taken into care by a palliative home-care team. Irrespective of age, gender, and type of tumor, patients taken into care by the palliative home-care team were more likely to die at home, less likely to be hospitalized, and spent fewer days in hospital in the last 2 months of their life. Among the patients taken into care by the palliative home-care team, those with hematological cancers and hepatocellular carcinoma were more likely to be hospitalized, and certain symptoms (such as dyspnea and delirium) were predictive of hospitalization. Our study confirms the effectiveness of palliative home care in enabling patients to spend the final period of their lives at home. The services of a palliative home-care team reduced the consumption of hospital resources. This study also provided evidence of some types of cancer (e.g. hematological cancers and hepatocellular carcinoma) being more likely to require hospitalization, suggesting the need to reconsider the pathways of care for these diseases.

  17. Reporting characteristics of cancer pain: A systematic review and quantitative analysis of research publications in palliative care journals

    Directory of Open Access Journals (Sweden)

    Senthil P Kumar

    2011-01-01

    Full Text Available Objective: A common disorder requiring symptom palliation in palliative and end-of-life care is cancer. Cancer pain is recognized as a global health burden. This paper sought to systematically examine the extent to which there is an adequate scientific research base on cancer pain and its reporting characteristics in the palliative care journal literature. Materials and Methods: Search conducted in MEDLINE and CINAHL sought to locate all studies published in 19 palliative/ hospice/ supportive/ end-of-life care journals from 2009 to 2010. The journals included were: American Journal of Hospice and Palliative Care, BMC Palliative Care, Current Opinion in Supportive and Palliative Care, End of Life Care Journal, European Journal of Palliative Care, Hospice Management Advisor, Indian Journal of Palliative Care, International Journal of Palliative Nursing, Internet Journal of Pain Symptom Control and Palliative Care, Journal of Pain and Palliative Care Pharmacotherapy, Journal of Palliative Care, Journal of Palliative Medicine, Journal of Social Work in End-of-life and Palliative Care, Journal of Supportive Oncology, Palliative Medicine, Palliative and Supportive Care, and Supportive Care in Cancer. Journal contents were searched to identify studies that included cancer pain in abstract. Results: During the years 2009 and 2010, of the selected 1,569 articles published in the journals reviewed, only 5.86% (92 articles were on cancer pain. Conclusion: While researchers in the field of palliative care have studied cancer pain, the total percentage for studies is still a low 5.86%. To move the field of palliative care forward so that appropriate guidelines for cancer pain management can be developed, it is critical that more research be reported upon which to base cancer pain therapy in an evidence-based palliative care model.

  18. Como implementar cuidados paliativos de qualidade na unidade de terapia intensiva How to implement quality in palliative care at intensive care unit

    Directory of Open Access Journals (Sweden)

    Rubens C Costa Filho

    2008-03-01

    Full Text Available JUSTIFICATIVA E OBJETIVOS: Os cuidados paliativos têm como objetivo a prevenção e o alívio do sofrimento, melhorando a comunicação e o sinergismo com a terapêutica curativa. Esta filosofia de tratamento conjuga os valores dos pacientes e de seus familiares, facilitando as transferências entre os vários setores intra-hospitalares, que possam estar conduzindo um paciente com grave risco de vida. CONTEÚDO: Apesar de ainda estar se desenvolvendo em todo o mundo, os cuidados paliativos estão progressivamente integrando-se aos cuidados curativos, inclusive nos ambientes de terapia intensiva. Entretanto, várias evidências têm demonstrado que esta abordagem médica ainda precisa melhorar, seja para os pacientes com sintomas de desconforto significativos ou dores físicas, nas unidades de terapia intensiva, ou na percepção dos familiares, que também é falha, sobretudo no que cerne às recomendações básicas como as intervenções diagnósticas, prognósticas e terapêuticas. CONCLUSÕES: O desenvolvimento de pesquisa nesta área promoverá indicadores de desempenho, o que nos garantirá eficiência, qualidade operacional, e melhoria constante desses cuidados. Este artigo destaca a importância da medicina paliativa e propõe alternativas e planos para promoção de uma abordagem paliativa em tempo apropriado, no sentido de tornar a medicina geral mais próxima dos valores e dignidade humana.BACKGROUND AND OBJECTIVES: Palliative care has the objective of preventing and relieving suffering by improving communication and synergism with curative therapy. This philosophy of treatment combines the patients' values and their families and facilitates the movement in various hospital departments, which might occur with critically ill patients. CONTENTS: Though still little developed in the world, palliative care is gradually integrating curative care in intensive care units. However, various pieces of evidence have been showing that there is

  19. Racial Disparities in Palliative Care for Prostate Cancer

    Science.gov (United States)

    2016-01-01

    1 | P a g e Award Number: W81XWH-10-1-0802 TITLE: " Racial Disparities in Palliative Care for Prostate Cancer." PRINCIPAL INVESTIGATOR: Alfred I...CONTRACT NUMBER W81XWH-10-1-0802 " Racial Disparities in Palliative Care for Prostate Cancer." 5b. GRANT NUMBER PC094372 5c. PROGRAM ELEMENT NUMBER...developed the tools/methods for working with SEER-Medicare. We plan to use analytic approaches and methods to explore racial disparities in the use of

  20. Palliative care and use of animal-assisted therapy.

    Science.gov (United States)

    Engelman, Suzanne R

    2013-01-01

    A growing body of research and clinical reports support the benefits of utilizing animal-assisted therapy (AAT) as a complementary, transdisciplinary treatment intervention in medical settings. However, fewer articles are found demonstrating AAT's use in palliative care settings. This article is a study of the effects of AAT in palliative care situations, presenting one anecdotal clinical vignette. In this way, the efficacy of this technique in decreasing patient pain, thereby increasing patient quality of life, and lowering staff stress levels may be illustrated.

  1. Communication about palliative care: A phenomenological study exploring patient views and responses to its discussion.

    Science.gov (United States)

    Collins, Anna; McLachlan, Sue-Anne; Philip, Jennifer

    2018-01-01

    Communication about palliative care is a complex task frequently delayed until otherwise unavoidable. There is a need for discussion of palliative care to be viewed as a distinct communication task that is guided by empirical data. However, little is known of patient views and responses to these encounters. To explore patient views surrounding communication about palliative care and their responses to its discussion. Cross-sectional, prospective, exploratory qualitative design, involving narrative-style interviews and underpinned by an interpretative phenomenological framework. Purposively sampled, English-speaking, adult patients with advanced cancer ( n = 30) recruited from cancer services at a tertiary metropolitan hospital in Melbourne, Australia. Three major themes evolved. (1) Death as unspeakable: death was expressed using only implicit, ambiguous or technical terms and perceived to be outside the parameters of medical interactions. (2) Palliative care as a euphemism for death: the term 'palliative care' was perceived to be used by health professionals as a tool to talk about dying and understood by patients as a euphemism for death. (3) Palliative care as unspeakable: 'palliative care' was personified by patients to mean not just death, but my death, in turn, also becoming unspeakable. This study provides important new patient insights and responses to the discussion of palliative care. Results demonstrate that the task of discussing palliative care remains complex, difficult and limited by our language. Greater consistency, sensitivity and sophistication are required when talking about palliative care to patients who may benefit from this care.

  2. Implementation of national palliative care guidelines in Swedish acute care hospitals: A qualitative content analysis of stakeholders' perceptions.

    Science.gov (United States)

    Lind, S; Wallin, L; Brytting, T; Fürst, C J; Sandberg, J

    2017-11-01

    In high-income countries a large proportion of all deaths occur in hospitals. A common way to translate knowledge into clinical practice is developing guidelines for different levels of health care organisations. During 2012, national clinical guidelines for palliative care were published in Sweden. Later, guidance for palliative care was issued by the National Board of Health and Welfare. The aim of this study was two-fold: to investigate perceptions regarding these guidelines and identify obstacles and opportunities for implementation of them in acute care hospitals. Interviews were conducted with local politicians, chief medical officers and health professionals at acute care hospitals. The Consolidated Framework for Implementation Research was used in a directed content analysis approach. The results showed little knowledge of the two documents at all levels of the health care organisation. Palliative care was primarily described as end of life care and only few of the participants talked about the opportunity to integrate palliative care early in a disease trajectory. The environment and culture at hospitals, characterised by quick decisions and actions, were perceived as obstacles to implementation. Health professionals' expressed need for palliative care training is an opportunity for implementation of clinical guidelines. There is a need for further implementation of palliative care in hospitals. One option for further research is to evaluate implementation strategies tailored to acute care. Copyright © 2017 Elsevier B.V. All rights reserved.

  3. Paediatric Palliative Care in Resource-Poor Countries

    Directory of Open Access Journals (Sweden)

    Julia Downing

    2018-02-01

    Full Text Available There is a great need for paediatric palliative care (PPC services globally, but access to services is lacking in many parts of the world, particularly in resource-poor settings. Globally it is estimated that 21.6 million children need access to palliative care, with 8.2 needing specialist services. PC has been identified as important within the global health agenda e.g., within universal health coverage, and a recent Lancet commission report recognised the need for PPC. However, a variety of challenges have been identified to PPC development globally such as: access to treatment, access to medications such as oral morphine, opiophobia, a lack of trained health and social care professionals, a lack of PPC policies and a lack of awareness about PPC. These challenges can be overcome utilising a variety of strategies including advocacy and public awareness, education, access to medications, implementation and research. Examples will be discussed impacting on the provision of PPC in resource-poor settings. High-quality PPC service provision can be provided with resource-poor settings, and there is an urgent need to scale up affordable, accessible, and quality PPC services globally to ensure that all children needing palliative care can access it.

  4. Diet and Nutrition in Cancer Survivorship and Palliative Care

    OpenAIRE

    Anthony J. Bazzan; Andrew B. Newberg; William C. Cho; Daniel A. Monti

    2013-01-01

    The primary goal of palliative cancer care is typically to relieve suffering and improve quality of life. Most approaches to diet in this setting have focused only on eating as many calories as possible to avoid cachexia. However, as the concept of palliative care has evolved to include all aspects of cancer survivorship and not just end of life care, there is an increasing need to thoughtfully consider diet and nutrition approaches that can impact not only quality of life but overall health ...

  5. Pediatric Palliative Care: A Personal Story

    Medline Plus

    Full Text Available ... a patient's and family's experience with illness. Category Science & Technology License Standard YouTube License ... 5:21 Portraits of Life, Love and Legacy through Pediatric Palliative Care - Duration: ...

  6. Music therapy in palliative care: current perspectives.

    Science.gov (United States)

    O'Kelly, Julian

    2002-03-01

    As the music therapy profession has developed internationally over the last 25 years, so has its role in palliative care. Music is a highly versatile and dynamic therapeutic modality, lending itself to a variety of music therapy techniques used to benefit both those living with life-threatening illnesses and their family members and caregivers. This article will give a broad overview of the historical roots of music therapy and introduce the techniques that are employed in current practice. By combining a review of mainstream music therapy practice involving musical improvisation, song-writing and receptive/recreational techniques with case material from my own experience, this article aims to highlight the potential music therapy holds as an effective holistic practice for palliative care, whatever the care setting.

  7. A comprehensive picture of palliative care at home from the people involved.

    Science.gov (United States)

    Appelin, Gunilla; Brobäck, Gunilla; Berterö, Carina

    2005-12-01

    The purpose of this study was to identify the comprehensive picture of palliative care in the home, as experienced by the people involved. The study is a secondary analysis of three phenomenological studies including six cancer patients, six next of kin and six district nurses. Data were collected in qualitative interviews using an interview guide. The interviews were tape-recorded and transcribed verbatim. In this secondary analysis, data were analysed by hermeneutic analysis guided by Gadamer. The guiding questions during the reading were: Is there an advantage receiving palliative care at home? Is there a disadvantage receiving palliative care at home? The findings indicate that the advantages of palliative care at home is; striving for normal life, including the care in the home composed of physical care and emotional/mental care. Striving for normal life also includes emotional feelings, safety and resources and policies which regulates this activity. Disadvantages of palliative care at home are commitment, composed of adaptation and extra work, and demands, composed of frustration and uncertainty. If the people involved are to be able to manage the situation and optimize living while dying, there must be support and resources facilitating the situation.

  8. Effects of online palliative care training on knowledge, attitude and satisfaction of primary care physicians.

    Science.gov (United States)

    Pelayo, Marta; Cebrián, Diego; Areosa, Almudena; Agra, Yolanda; Izquierdo, Juan Vicente; Buendía, Félix

    2011-05-23

    The Spanish Palliative Care Strategy recommends an intermediate level of training for primary care physicians in order to provide them with knowledge and skills. Most of the training involves face-to-face courses but increasing pressures on physicians have resulted in fewer opportunities for provision of and attendance to this type of training. The effectiveness of on-line continuing medical education in terms of its impact on clinical practice has been scarcely studied. Its effect in relation to palliative care for primary care physicians is currently unknown, in terms of improvement in patient's quality of life and main caregiver's satisfaction. There is uncertainty too in terms of any potential benefits of asynchronous communication and interaction among on-line education participants, as well as of the effect of the learning process.The authors have developed an on-line educational model for palliative care which has been applied to primary care physicians in order to measure its effectiveness regarding knowledge, attitude towards palliative care, and physician's satisfaction in comparison with a control group.The effectiveness evaluation at 18 months and the impact on the quality of life of patients managed by the physicians, and the main caregiver's satisfaction will be addressed in a different paper. Randomized controlled educational trial to compared, on a first stage, the knowledge and attitude of primary care physicians regarding palliative care for advanced cancer patients, as well as satisfaction in those who followed an on-line palliative care training program with tutorship, using a Moodle Platform vs. traditional education. 169 physicians were included, 85 in the intervention group and 84 in the control group, of which five were excluded. Finally 82 participants per group were analyzed. There were significant differences in favor of the intervention group, in terms of knowledge (mean 4.6; CI 95%: 2.8 to 6.5 (p = 0.0001), scale range 0-33), confidence

  9. Effects of online palliative care training on knowledge, attitude and satisfaction of primary care physicians

    Directory of Open Access Journals (Sweden)

    Agra Yolanda

    2011-05-01

    Full Text Available Abstract Background The Spanish Palliative Care Strategy recommends an intermediate level of training for primary care physicians in order to provide them with knowledge and skills. Most of the training involves face-to-face courses but increasing pressures on physicians have resulted in fewer opportunities for provision of and attendance to this type of training. The effectiveness of on-line continuing medical education in terms of its impact on clinical practice has been scarcely studied. Its effect in relation to palliative care for primary care physicians is currently unknown, in terms of improvement in patient's quality of life and main caregiver's satisfaction. There is uncertainty too in terms of any potential benefits of asynchronous communication and interaction among on-line education participants, as well as of the effect of the learning process. The authors have developed an on-line educational model for palliative care which has been applied to primary care physicians in order to measure its effectiveness regarding knowledge, attitude towards palliative care, and physician's satisfaction in comparison with a control group. The effectiveness evaluation at 18 months and the impact on the quality of life of patients managed by the physicians, and the main caregiver's satisfaction will be addressed in a different paper. Methods Randomized controlled educational trial to compared, on a first stage, the knowledge and attitude of primary care physicians regarding palliative care for advanced cancer patients, as well as satisfaction in those who followed an on-line palliative care training program with tutorship, using a Moodle Platform vs. traditional education. Results 169 physicians were included, 85 in the intervention group and 84 in the control group, of which five were excluded. Finally 82 participants per group were analyzed. There were significant differences in favor of the intervention group, in terms of knowledge (mean 4.6; CI

  10. Towards a conceptual evaluation of transience in relation to palliative care.

    Science.gov (United States)

    Larkin, Philip J; Dierckx de Casterlé, Bernadette; Schotsmans, Paul

    2007-07-01

    This paper is a report of a concept evaluation of transience and its relevance to palliative care. A qualitative study into palliative care patients' experiences of transition revealed a gap between current definitions of transition and their expression of the palliative care experience. Transience appears to offer a better definition but remains conceptually weak, with limited definition in a healthcare context. A qualitative conceptual evaluation of transience was undertaken using two case examples, interview data and the literature. Multiple sources were used to identify the literature (1966-2006), including a search on Cumulative Index to Nursing and Allied Health Literature Medline, and Ovid and Arts and Humanities Index using the keywords 'transience' and 'palliative care'. Thirty-one papers related to transience were retrieved. Analysis and synthesis formulated a theoretical definition of transience relative to palliative care. Transience is a nascent concept. Preconditions and outcomes of transience appear contextually dependent, which may inhibit its conceptual development. Transience depicts a fragile emotional state related to sudden change and uncertainty at end-of-life, exhibited as a feeling of stasis. Defining attributes would seem to include fragility, suddenness, powerlessness, impermanence, time, space, uncertainty, separation and homelessness. Transience is potentially more meaningful for palliative care in understanding the impact of end-of-life experiences for patients than current conceptualizations of transition as a process towards resolution. As a nascent concept, it remains strongly encapsulated within a framework of transition and further conceptual development is needed to enhance its maturity and refinement.

  11. How to Get It -- Step 2: Meet the Palliative Care Team

    Science.gov (United States)

    ... a Provider 3. Meet the Team Palliative Care Team The palliative care team will spend a lot of time with you ... your goals. But what should you ask the team during the meeting? Here are some suggestions: What ...

  12. Clinical staff perceptions of palliative care-related quality of care, service access, education and training needs and delivery confidence in an acute hospital setting.

    Science.gov (United States)

    Frey, Rosemary; Gott, Merryn; Raphael, Deborah; O'Callaghan, Anne; Robinson, Jackie; Boyd, Michal; Laking, George; Manson, Leigh; Snow, Barry

    2014-12-01

    Central to appropriate palliative care management in hospital settings is ensuring an adequately trained workforce. In order to achieve optimum palliative care delivery, it is first necessary to create a baseline understanding of the level of palliative care education and support needs among all clinical staff (not just palliative care specialists) within the acute hospital setting. The objectives of the study were to explore clinical staff: perceptions concerning the quality of palliative care delivery and support service accessibility, previous experience and education in palliative care delivery, perceptions of their own need for formal palliative care education, confidence in palliative care delivery and the impact of formal palliative care training on perceived confidence. A purposive sample of clinical staff members (598) in a 710-bed hospital were surveyed regarding their experiences of palliative care delivery and their education needs. On average, the clinical staff rated the quality of care provided to people who die in the hospital as 'good' (x̄=4.17, SD=0.91). Respondents also reported that 19.3% of their time was spent caring for end-of-life patients. However, only 19% of the 598 respondents reported having received formal palliative care training. In contrast, 73.7% answered that they would like formal training. Perceived confidence in palliative care delivery was significantly greater for those clinical staff with formal palliative care training. Formal training in palliative care increases clinical staff perceptions of confidence, which evidence suggests impacts on the quality of palliative care provided to patients. The results of the study should be used to shape the design and delivery of palliative care education programmes within the acute hospital setting to successfully meet the needs of all clinical staff. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.

  13. A Home-Based Palliative Care Consult Service for Veterans.

    Science.gov (United States)

    Golden, Adam G; Antoni, Charles; Gammonley, Denise

    2016-11-01

    We describe the development and implementation of a home-based palliative care consult service for Veterans with advanced illness. A retrospective chart review was performed on 73 Veterans who received a home-based palliative care consult. Nearly one-third were 80 years of age or older, and nearly one-third had a palliative diagnosis of cancer. The most common interventions of the consult team included discussion of advance directives, completion of a "do not resuscitate" form, reduction/stoppage of at least 1 medication, explanation of diagnosis, referral to home-based primary care program, referral to hospice, and assessment/support for caregiver stress. The home-based consult service was therefore able to address clinical and psychosocial issues that can demonstrate a direct benefit to Veterans, families, and referring clinicians. © The Author(s) 2015.

  14. Culturally Competent Palliative and Hospice Care Training for Ethnically Diverse Staff in Long-Term Care Facilities.

    Science.gov (United States)

    Kataoka-Yahiro, Merle R; McFarlane, Sandra; Koijane, Jeannette; Li, Dongmei

    2017-05-01

    Between 2013 and 2030, older adults 65 years and older of racial/ethnic populations in the U.S. is projected to increase by 123% in comparison to the Whites (Non-Hispanics). To meet this demand, training of ethnically diverse health staff in long-term care facilities in palliative and hospice care is imperative. The purpose of this study was to evaluate a palliative and hospice care training of staff in two nursing homes in Hawaii - (a) to evaluate knowledge and confidence over three time periods, and (b) to compare staff and family caregiver satisfaction at end of program. The educational frameworks were based on cultural and communication theories. Fifty-two ethnically diverse staff, a majority being Asian (89%), participated in a 10-week module training and one 4 hour communication skills workshop. Staff evaluation included knowledge and confidence surveys, pre- and post-test knowledge tests, and FAMCARE-2 satisfaction instrument. There were nine Asian (89%) and Pacific Islander (11%) family caregivers who completed the FAMCARE-2 satisfaction instrument. The overall staff knowledge and confidence results were promising. The staff rated overall satisfaction of palliative care services lower than the family caregivers. Implications for future research, practice, and education with palliative and hospice care training of ethnically diverse nursing home staff is to include patient and family caregiver satisfaction of palliative and hospice care services, evaluation of effectiveness of cross-cultural communication theories in palliative and hospice care staff training, and support from administration for mentorship and development of these services in long term care facilities.

  15. A region-based palliative care intervention trial using the mixed-method approach: Japan OPTIM study

    Directory of Open Access Journals (Sweden)

    Morita Tatsuya

    2012-01-01

    Full Text Available Abstract Background Disseminating palliative care is a critical task throughout the world. Several outcome studies explored the effects of regional palliative care programs on a variety of end-points, and some qualitative studies investigated the process of developing community palliative care networks. These studies provide important insights into the potential benefits of regional palliative care programs, but the clinical implications are still limited, because: 1 many interventions included fundamental changes in the structure of the health care system, and, thus, the results would not be applicable for many regions where structural changes are difficult or unfeasible; 2 patient-oriented outcomes were not measured or explored only in a small number of populations, and interpretation of the results from a patient's view is difficult; and 3 no studies adopted a mixed-method approach using both quantitative and qualitative methodologies to interpret the complex phenomenon from multidimensional perspectives. Methods/designs This is a mixed-method regional intervention trial, consisting of a pre-post outcome study and qualitative process studies. The primary aim of the pre-post outcome study is to evaluate the change in the number of home deaths, use of specialized palliative care services, patient-reported quality of palliative care, and family-reported quality of palliative care after regional palliative care intervention. The secondary aim is to explore the changes in a variety of outcomes, including patients' quality of life, pain intensity, family care burden, and physicians' and nurses' knowledge, difficulties, and self-perceived practice. Outcome measurements used in this study include the Care Evaluation Scale, Good Death Inventory, Brief pain Inventory, Caregiving Consequence Inventory, Sense of Security Scale, Palliative Care Knowledge test, Palliative Care Difficulties Scale, and Palliative Care Self-reported Practice Scale. Study

  16. Pediatric Palliative Care: A Personal Story

    Medline Plus

    Full Text Available ... University (NEOMED) 26,193 views 5:39 Little Stars – Paediatric Palliative Care – Charlie's Story - Duration: 10:35. Little Stars 12,759 views 10:35 Teen Cancer Stories | ...

  17. Assessment of an interprofessional online curriculum for palliative care communication training.

    Science.gov (United States)

    Wittenberg-Lyles, Elaine; Goldsmith, Joy; Ferrell, Betty; Burchett, Molly

    2014-04-01

    Curricular changes to palliative care communication training are needed in order to accommodate a variety of learners, especially in lieu of the projected national shortage of hospice and palliative medicine physicians and nurses. This study assessed the utility of a palliative care communication curriculum offered through an online platform and also examined health care professionals' clinical communication experiences related to palliative care topics. Four of the seven modules of the COMFORT communication curriculum were made available online, and participant assessments and knowledge skills were measured. Modules were completed and assessed by 177 participants, including 105 nurses, 25 physicians, and a category of 'other' disciplines totaling 47. Premodule surveys consisted of closed-ended items developed by the interdisciplinary research team. Postcurriculum evaluation and knowledge quizzes were used to assess program effectiveness. Among all participants, end-of-life care and recurrence of disease were considered the most challenging communication contexts and discussion about treatment options the least challenging. Mean responses to postcurriculum evaluation for all modules across nurse and physician participants was greater than 4 on a scale of 1 to 5. This study identifies the COMFORT communication curriculum as an effective online curricular tool to teach multiple disciplines specific palliative care communication.

  18. [Achievement and Future Direction of the PEACE Project - A National Education Project for Palliative Care Education].

    Science.gov (United States)

    Kizawa, Yoshiyuki; Yamamoto, Ryo

    2017-07-01

    Although palliative care is assuming an increasingly important role in patient care, most physicians did not learn to provide palliative care during their medical training. To address these serious deficiencies in physician training in palliative care, government decided to provide basic palliative education program for all practicing cancer doctors as a national policy namely Palliative care Emphasis program on symptom management and Assessment for Continuous medical Education(PEACE). The program was 2-days workshop based on adult learning theory and focusing on symptom management and communication. In this 9 years, 4,888 educational workshop has been held, and 93,250 physicians were trained. In prospective observational study, both knowledges and difficulties practicing palliative care were significantly improved. In 2017, the new palliative care education program will be launched including combined program of e-learning and workshop to provide tailor made education based on learner's readiness and educational needs in palliative care.

  19. The Use of Emergency Medication Kits in Community Palliative Care: An Exploratory Survey of Views of Current Practice in Australian Home-Based Palliative Care Services.

    Science.gov (United States)

    Bullen, Tracey; Rosenberg, John P; Smith, Bradley; Maher, Kate

    2015-09-01

    Improving symptom management for palliative care patients has obvious benefits for patients and advantages for the clinicians, as workload demands and work-related stress can be reduced when the emergent symptoms of patients are managed in a timely manner. The use of emergency medication kits (EMKs) can provide such timely symptom relief. The purpose of this study was to conduct a survey of a local service to examine views on medication management before and after the implementation of an EMK and to conduct a nationwide prevalence survey examining the use of EMKs in Australia. Most respondents from community palliative care services indicated that EMKs were not being supplied to palliative care patients but believed such an intervention could improve patient care. © The Author(s) 2014.

  20. Using mixed methods to develop and evaluate complex interventions in palliative care research.

    Science.gov (United States)

    Farquhar, Morag C; Ewing, Gail; Booth, Sara

    2011-12-01

    there is increasing interest in combining qualitative and quantitative research methods to provide comprehensiveness and greater knowledge yield. Mixed methods are valuable in the development and evaluation of complex interventions. They are therefore particularly valuable in palliative care research where the majority of interventions are complex, and the identification of outcomes particularly challenging. this paper aims to introduce the role of mixed methods in the development and evaluation of complex interventions in palliative care, and how they may be used in palliative care research. the paper defines mixed methods and outlines why and how mixed methods are used to develop and evaluate complex interventions, with a pragmatic focus on design and data collection issues and data analysis. Useful texts are signposted and illustrative examples provided of mixed method studies in palliative care, including a detailed worked example of the development and evaluation of a complex intervention in palliative care for breathlessness. Key challenges to conducting mixed methods in palliative care research are identified in relation to data collection, data integration in analysis, costs and dissemination and how these might be addressed. the development and evaluation of complex interventions in palliative care benefit from the application of mixed methods. Mixed methods enable better understanding of whether and how an intervention works (or does not work) and inform the design of subsequent studies. However, they can be challenging: mixed method studies in palliative care will benefit from working with agreed protocols, multidisciplinary teams and engaging staff with appropriate skill sets.

  1. Integrating palliative care into neurology services: what do the professionals say?

    NARCIS (Netherlands)

    Hepgul, N.; Gao, W.; Evans, C.J.; Jackson, D.; Vliet, L.M. van; Byrne, A.; Crosby, V.; Groves, K.E.; Lindsay, F.; Higginson, I.J.

    2017-01-01

    Objectives: Evaluations of new services for palliative care in non-cancer conditions are few. OPTCARE Neuro is a multicentre trial evaluating the effectiveness of short-term integrated palliative care (SIPC) for progressive long-term neurological conditions. Here, we present survey results

  2. The comparative palliative care needs of those with heart failure and cancer patients.

    LENUS (Irish Health Repository)

    O'Leary, Norma

    2012-02-01

    PURPOSE OF REVIEW: Patients with heart failure seem particularly suited to palliative care having needs that fall within the prototypical palliative care domains. Despite this there is still much debate as to who should respond to these needs and when. RECENT FINDINGS: Since the early 1990s many studies have been published outlining the unmet needs of patients with heart failure. However, there have been limitations to these studies and they have not guided professionals as to how to respond. More recently comparative studies using cancer as the reference have explored similarities and highlighted differences in need between heart failure and cancer patients. These studies are useful for informing future service development. SUMMARY: Patients with heart failure have variable needs and variable disease trajectories. A targeted response to these needs is required. Palliative triggers or transitions should be recognized by professionals caring for patients with heart failure. It is unlikely that either specialist palliative care or medical specialists working in isolation will be sufficiently experienced to respond to these needs. Research is required to determine the effectiveness of different collaborative approaches; heart failure specialist care aligned with palliative care consultancy or heart failure-oriented palliative care services.

  3. Pediatric Palliative Care: A Personal Story

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    Full Text Available ... views 4:24 The Ugly Truth of Pediatric Cancer - Duration: 5:21. KidsCancerChannel 63,826 views 5:21 Childhood Cancer: Palliative Care - Duration: 3:29. American Cancer Society ...

  4. Pediatric Palliative Care: A Personal Story

    Medline Plus

    Full Text Available ... of Rachel—a pediatric neuroblastoma patient—and her family. The story demonstrates how palliative care can positively influence a patient's and family's experience with illness. Category Science & Technology License Standard ...

  5. Pediatric Palliative Care: A Personal Story

    Medline Plus

    Full Text Available ... views 4:24 The Ugly Truth of Pediatric Cancer - Duration: 5:21. KidsCancerChannel 63,752 views 5:21 Childhood Cancer: Palliative Care - Duration: 3:29. American Cancer Society ...

  6. Pediatric Palliative Care: A Personal Story

    Medline Plus

    Full Text Available ... views 4:24 The Ugly Truth of Pediatric Cancer - Duration: 5:21. KidsCancerChannel 63,850 views 5:21 Childhood Cancer: Palliative Care - Duration: 3:29. American Cancer Society ...

  7. Pediatric Palliative Care: A Personal Story

    Medline Plus

    Full Text Available ... views 13:34 The Ugly Truth of Pediatric Cancer - Duration: 5:21. KidsCancerChannel 64,186 views 5:21 Childhood Cancer: Palliative Care - Duration: 3:29. American Cancer Society ...

  8. Pediatric Palliative Care: A Personal Story

    Medline Plus

    Full Text Available ... views 4:24 The Ugly Truth of Pediatric Cancer - Duration: 5:21. KidsCancerChannel 64,001 views 5:21 Childhood Cancer: Palliative Care - Duration: 3:29. American Cancer Society ...

  9. Pediatric Palliative Care: A Personal Story

    Medline Plus

    Full Text Available ... views 4:24 The Ugly Truth of Pediatric Cancer - Duration: 5:21. KidsCancerChannel 63,893 views 5:21 Childhood Cancer: Palliative Care - Duration: 3:29. American Cancer Society ...

  10. Pediatric Palliative Care: A Personal Story

    Medline Plus

    Full Text Available ... views 4:24 The Ugly Truth of Pediatric Cancer - Duration: 5:21. KidsCancerChannel 63,864 views 5:21 Childhood Cancer: Palliative Care - Duration: 3:29. American Cancer Society ...

  11. Pediatric Palliative Care: A Personal Story

    Medline Plus

    Full Text Available ... views 13:34 The Ugly Truth of Pediatric Cancer - Duration: 5:21. KidsCancerChannel 64,137 views 5:21 Childhood Cancer: Palliative Care - Duration: 3:29. American Cancer Society ...

  12. Pediatric Palliative Care: A Personal Story

    Medline Plus

    Full Text Available ... views 12:07 The Ugly Truth of Pediatric Cancer - Duration: 5:21. KidsCancerChannel 63,703 views 5:21 Childhood Cancer: Palliative Care - Duration: 3:29. American Cancer Society ...

  13. First-Line Nursing Home Managers in Sweden and their Views on Leadership and Palliative Care.

    Science.gov (United States)

    Håkanson, Cecilia; Cronfalk, Berit Seiger; Henriksen, Eva; Norberg, Astrid; Ternestedt, Britt-Marie; Sandberg, Jonas

    2014-01-01

    The aim of this study was to investigate first-line nursing home managers' views on their leadership and related to that, palliative care. Previous research reveals insufficient palliation, and a number of barriers towards implementation of palliative care in nursing homes. Among those barriers are issues related to leadership quality. First-line managers play a pivotal role, as they influence working conditions and quality of care. Nine first-line managers, from different nursing homes in Sweden participated in the study. Semi-structured interviews were conducted and analysed using qualitative descriptive content analysis. In the results, two categories were identified: embracing the role of leader and being a victim of circumstances, illuminating how the first-line managers handle expectations and challenges linked to the leadership role and responsibility for palliative care. The results reveal views corresponding to committed leaders, acting upon demands and expectations, but also to leaders appearing to have resigned from the leadership role, and who express powerlessness with little possibility to influence care. The first line managers reported their own limited knowledge about palliative care to limit their possibilities of taking full leadership responsibility for implementing palliative care principles in their nursing homes. The study stresses that for the provision of high quality palliative care in nursing homes, first-line managers need to be knowledgeable about palliative care, and they need supportive organizations with clear expectations and goals about palliative care. Future action and learning oriented research projects for the implementation of palliative care principles, in which first line managers actively participate, are suggested.

  14. Organization position statements and the stance of "studied neutrality" on euthanasia in palliative care.

    Science.gov (United States)

    Johnstone, Megan-Jane

    2012-12-01

    In recent years, palliative care and related organizations have increasingly adopted a stance of "studied neutrality" on the question of whether euthanasia should be legalized as a bona fide medical regimen in palliative care contexts. This stance, however, has attracted criticism from both opponents and proponents of euthanasia. Pro-euthanasia activists see the stance as an official position of indecision that is fundamentally disrespectful of a patient's right to "choose death" when life has become unbearable. Some palliative care constituents, in turn, are opposed to the stance, contending that it reflects an attitude of "going soft" on euthanasia and as weakening the political resistance that has hitherto been successful in preventing euthanasia from becoming more widely legalized. In this article, attention is given to examining critically the notion and possible unintended consequences of adopting a stance of studied neutrality on euthanasia in palliative care. It is argued that although palliative care and related organizations have an obvious stake in the outcome of the euthanasia debate, it is neither unreasonable nor inconsistent for such organizations to be unwilling to take a definitive stance on the issue. It is further contended that, given the long-standing tenets of palliative care, palliative care organizations have both a right and a responsibility to defend the integrity of the principles and practice of palliative care and to resist demands for euthanasia to be positioned either as an integral part or logical extension of palliative care. Copyright © 2012 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.

  15. Transforming doctor-patient relationships to promote patient-centered care: lessons from palliative care.

    Science.gov (United States)

    Yedidia, Michael J

    2007-01-01

    Palliative care was studied for its potential to yield lessons for transforming doctor-patient relationships to promote patient-centered care. Examination of patient and provider experiences of the transition from curative to palliative care promises valuable insights about establishing and maintaining trust as the goals of care shift and about addressing a broad spectrum of patient needs. The study was guided by a conceptual framework grounded in existing models to address five dimensions of doctor-patient relationships: range of needs addressed, source of authority, maintenance of trust, emotional involvement, and expression of authenticity. Data collection included observation of the care of 40 patients in the inpatient hospice unit and at home, interviews with patients and family members, and in-depth interviews with 22 physicians and two nurses providing end-of-life care. Standard qualitative procedures were used to analyze the data, incorporating techniques for maximizing the validity of the results and broadening their relevance to other contexts. Findings provide evidence for challenging prominent assumptions about possibilities for doctor-patient relationships: questioning the merits of the prohibition on emotional involvement, dependence on protocols for handling difficult communication issues, unqualified reliance on consumer empowerment to assure that care is responsive to patients' needs, and adoption of narrowly defined boundaries between medical and social service systems in caring for patients. Medical education can play a role in preparing doctors to assume new roles by openly addressing management of emotions in routine clinical work, incorporating personal awareness training, facilitating reflection on interactions with patients through use of standardized patients and videotapes, and expanding capacity to effectively address a broad range of needs through teamwork training.

  16. The magnitude, share and determinants of unpaid care costs for home-based palliative care service provision in Toronto, Canada.

    Science.gov (United States)

    Chai, Huamin; Guerriere, Denise N; Zagorski, Brandon; Coyte, Peter C

    2014-01-01

    With increasing emphasis on the provision of home-based palliative care in Canada, economic evaluation is warranted, given its tremendous demands on family caregivers. Despite this, very little is known about the economic outcomes associated with home-based unpaid care-giving at the end of life. The aims of this study were to (i) assess the magnitude and share of unpaid care costs in total healthcare costs for home-based palliative care patients, from a societal perspective and (ii) examine the sociodemographic and clinical factors that account for variations in this share. One hundred and sixty-nine caregivers of patients with a malignant neoplasm were interviewed from time of referral to a home-based palliative care programme provided by the Temmy Latner Centre for Palliative Care at Mount Sinai Hospital, Toronto, Canada, until death. Information regarding palliative care resource utilisation and costs, time devoted to care-giving and sociodemographic and clinical characteristics was collected between July 2005 and September 2007. Over the last 12 months of life, the average monthly cost was $14 924 (2011 CDN$) per patient. Unpaid care-giving costs were the largest component - $11 334, accounting for 77% of total palliative care expenses, followed by public costs ($3211; 21%) and out-of-pocket expenditures ($379; 2%). In all cost categories, monthly costs increased exponentially with proximity to death. Seemingly unrelated regression estimation suggested that the share of unpaid care costs of total costs was driven by patients' and caregivers' sociodemographic characteristics. Results suggest that overwhelming the proportion of palliative care costs is unpaid care-giving. This share of costs requires urgent attention to identify interventions aimed at alleviating the heavy financial burden and to ultimately ensure the viability of home-based palliative care in future. © 2013 John Wiley & Sons Ltd.

  17. Societal costs of home and hospital end-of-life care for palliative care patients in Ontario, Canada.

    Science.gov (United States)

    Yu, Mo; Guerriere, Denise N; Coyte, Peter C

    2015-11-01

    In Canada, health system restructuring has led to a greater focus on home-based palliative care as an alternative to institutionalised palliative care. However, little is known about the effect of this change on end-of-life care costs and the extent to which the financial burden of care has shifted from the acute care public sector to families. The purpose of this study was to assess the societal costs of end-of-life care associated with two places of death (hospital and home) using a prospective cohort design in a home-based palliative care programme. Societal cost includes all costs incurred during the course of palliative care irrespective of payer (e.g. health system, out-of-pocket, informal care-giving costs, etc.). Primary caregivers of terminal cancer patients were recruited from the Temmy Latner Centre for Palliative Care in Toronto, Canada. Demographic, service utilisation, care-giving time, health and functional status, and death data were collected by telephone interviews with primary caregivers over the course of patients' palliative trajectory. Logistic regression was conducted to model an individual's propensity for home death. Total societal costs of end-of-life care and component costs were compared between home and hospital death using propensity score stratification. Costs were presented in 2012 Canadian dollars ($1.00 CDN = $1.00 USD). The estimated total societal cost of end-of-life care was $34,197.73 per patient over the entire palliative trajectory (4 months on average). Results showed no significant difference (P > 0.05) in total societal costs between home and hospital death patients. Higher hospitalisation costs for hospital death patients were replaced by higher unpaid caregiver time and outpatient service costs for home death patients. Thus, from a societal cost perspective, alternative sites of death, while not associated with a significant change in total societal cost of end-of-life care, resulted in changes in the distribution of

  18. Improving End-of-Life Care: Palliative Care Embedded in an Oncology Clinic Specializing in Targeted and Immune-Based Therapies.

    Science.gov (United States)

    Einstein, David J; DeSanto-Madeya, Susan; Gregas, Matthew; Lynch, Jessica; McDermott, David F; Buss, Mary K

    2017-09-01

    Patients with advanced cancer benefit from early involvement of palliative care. The ideal method of palliative care integration remains to be determined, as does its effectiveness for patients treated with targeted and immune-based therapies. We studied the impact of an embedded palliative care team that saw patients in an academic oncology clinic specializing in targeted and immune-based therapies. Patients seen on a specific day accessed the embedded model, on the basis of automatic criteria; patients seen other days could be referred to a separate palliative care clinic (usual care). We abstracted data from the medical records of 114 patients who died during the 3 years after this model's implementation. Compared with usual care (n = 88), patients with access to the embedded model (n = 26) encountered palliative care as outpatients more often ( P = .003) and earlier (mean, 231 v 109 days before death; P 7 days before death-a core Quality Oncology Practice Initiative metric-was higher in the embedded model (odds ratio, 5.60; P = .034). Place of death ( P = .505) and end-of-life chemotherapy (odds ratio, 0.361; P = .204) did not differ between the two arms. A model of embedded and automatically triggered palliative care among patients treated exclusively with targeted and immune-based therapies was associated with significant improvements in use and timing of palliative care and hospice, compared with usual practice.

  19. Application of Transformational Leadership Principles in the Development and Integration of Palliative Care Within an Advanced Heart Failure Program.

    Science.gov (United States)

    George, Susan; Leasure, A Renee

    2016-01-01

    Heart failure (HF) is a major health problem in United States, and it has reached epidemic proportions. Heart failure is associated with significant morbidity, mortality, and cost. Although the prognosis of HF is worse than many forms of cancer, many patients, families, and clinicians are unaware of the dire prognosis. As the disease progress to advanced HF, patients are faced with many challenges, such as poor quality of life due to worsening symptoms and frequent hospitalizations. Heart failure management adds significant financial burden to the health care system. Palliative care can be integrated into HF care to improve quality of life and symptom management and to address physical, spiritual, and psychosocial needs of patients and families. Palliative care can be used concurrently with or independent of curative or life-prolonging HF therapies. Transformational leadership principles were used to guide the development of a plan to enhance integration of palliative care within traditional advanced HF care.

  20. Standardization and Scaling of a Community-Based Palliative Care Model.

    Science.gov (United States)

    Bull, Janet; Kamal, Arif H; Harker, Matthew; Taylor, Donald H; Bonsignore, Lindsay; Morris, John; Massie, Lisa; Singh Bhullar, Parampal; Howell, Mary; Hendrix, Mark; Bennett, Deeana; Abernethy, Amy

    2017-11-01

    Although limited, the descriptions of Community-Based Palliative Care (CBPC) demonstrates variability in team structures, eligibility, and standardization across care settings. In 2014, Four Seasons Compassion for Life, a nonprofit hospice and palliative care (PC) organization in Western North Carolina (WNC), was awarded a Centers for Medicare and Medicaid Services Health Care Innovation (CMMI) Award to expand upon their existing innovative model to implement, evaluate, and demonstrate CBPC in the United States. The objective of this article is to describe the processes and challenges of scaling and standardizing the CBPC model. Four Season's CBPC model serves patients in both inpatient and outpatient settings using an interdisciplinary team to address symptom management, psychosocial/spiritual care, advance care planning, and patient/family education. Medicare beneficiaries who are ≥65 years of age with a life-limiting illness were eligible for the CMMI project. The CBPC model was scaled across numerous counties in WNC and Upstate South Carolina. Over the first two years of the project, scaling occurred into 21 counties with the addition of 2 large hospitals, 52 nursing facilities, and 2 new clinics. To improve efficiency and effectiveness, a PC screening referral guide and a risk stratification approach were developed and implemented. Care processes, including patient referral and initial visit, were mapped. This article describes an interdisciplinary CBPC model in all care settings to individuals with life-limiting illness and offers guidance for risk stratification assessments and mapping care processes that may help PC programs as they develop and work to improve efficiencies.

  1. Pediatric Palliative Care: A Personal Story

    Medline Plus

    Full Text Available ... 21. KidsCancerChannel 64,265 views 5:21 Little Stars – Paediatric Palliative Care – Charlie's Story - Duration: 10:35. Little Stars 12,980 views 10:35 LIFE Before Death ...

  2. Pediatric Palliative Care: A Personal Story

    Medline Plus

    Full Text Available ... shares the story of Rachel—a pediatric neuroblastoma patient—and her family. The story demonstrates how palliative care can positively influence a patient's and family's experience with illness. Category Science & Technology ...

  3. [Influence of sociodemographic, occupational and life style factors on the levels of burnout in palliative care health professionals].

    Science.gov (United States)

    Fernández Sánchez, J C; Pérez Mármol, J M; Peralta Ramírez, M I

    2017-12-29

    Palliative care health professionals have reported high levels of burnout. An understanding of factors associated with this syndrome in this population could foster new prevention and intervention strategies. The objectives were to evaluate the levels of burnout in each of its dimensions in a sample of palliative care health professionals and to analyze the relationship between levels of burnout and sociodemographic, occupational and lifestyle characteristics in this sample. The total sample was composed of 92 palliative care health professionals. Sociodemographic, occupational and lifestyle characteristics were registered. The levels of burnout syndrome were evaluated by the Maslach Burnout Inventory - Human Services Survey (MBI-HSS). The total sample was divided into three groups, depending on the level of burnout (non-burnout group, burnout group meeting one criterion, and burnout group meeting two or three criteria). Comparisons were performed amongst groups for all characteristics evaluated. The non-burnout professionals were significantly older and slept more than the professionals with more than one altered dimension; in addition, they had greater job seniority in the unit than those with a single altered dimension and did physical exercise more frequently than either of the burnout groups. The younger professionals, with more job seniority in the units of palliative care, and less hours of sleep and physical activity showed higher levels of burnout. Therefore, these factors should be considered for enhancing prevention and intervention strategies for these health professionals.

  4. Feeling Heard & Understood in the Hospital Environment: Benchmarking Communication Quality Among Patients with Advanced Cancer Before and After Palliative Care Consultation.

    Science.gov (United States)

    Ingersoll, Luke T; Saeed, Fahad; Ladwig, Susan; Norton, Sally A; Anderson, Wendy; Alexander, Stewart C; Gramling, Robert

    2018-05-02

    Maximizing value in palliative care requires continued development and standardization of communication quality indicators. To describe the basic epidemiology of a newly-adopted patient-centered communication quality indicator for hospitalized palliative care patie9nts with advanced cancer. Cross-sectional analysis of 207 advanced cancer patients who received palliative care consultation at two medical centers in the United States. Participants completed the Heard & Understood quality indicator immediately before and the day following the initial palliative care consultation: "Over the past two days ["24 hours" for the post-consultation version], how much have you felt heard and understood by the doctors, nurses and hospital staff? Completely/Quite a Bit/Moderately/Slightly/Not at All". We categorized "Completely" as indicating ideal quality. Approximately one-third indicated ideal Heard & Understood quality before palliative care consultation. Age, financial security, emotional distress, preferences for comfort-longevity tradeoffs at end-of-life, and prognosis expectations were associated with pre-consultation quality. Among those with less-than-ideal quality at baseline, 56% rated feeling more Heard & Understood the day following palliative care consultation. The greatest pre-post improvement was among people who had unformed end-of-life treatment preferences or who reported having "no idea" about their prognosis at baseline. Most patients felt incompletely heard and understood at the time of referral to palliative care consultation and more than half improved following consultation. Feeling heard and understood is an important quality indicator sensitive to interventions to improve care and key variations in the patient experience. Copyright © 2018. Published by Elsevier Inc.

  5. Diet and Nutrition in Cancer Survivorship and Palliative Care

    Directory of Open Access Journals (Sweden)

    Anthony J. Bazzan

    2013-01-01

    Full Text Available The primary goal of palliative cancer care is typically to relieve suffering and improve quality of life. Most approaches to diet in this setting have focused only on eating as many calories as possible to avoid cachexia. However, as the concept of palliative care has evolved to include all aspects of cancer survivorship and not just end of life care, there is an increasing need to thoughtfully consider diet and nutrition approaches that can impact not only quality of life but overall health outcomes and perhaps even positively affect cancer recurrence and progression. In this regard, there has been a recent emphasis in the literature on nutrition and cancer as an important factor in both quality of life and in the pathophysiology of cancer. Hence, the primary purpose of this paper is to review the current data on diet and nutrition as it pertains to a wide range of cancer patients in the palliative care setting.

  6. Organizing palliative care for rural populations: a systematic review of the evidence.

    NARCIS (Netherlands)

    Evans, R.W.; Stone, D.; Elwyn, G.

    2003-01-01

    BACKGROUND: Palliative care services have developed mostly in urban areas. Rural areas typically are characterized by the lack of well-organized services, with primary care professionals, specifically GPs and community nurses, having to undertake most of the palliative care. Little is known,

  7. Faith healing and the palliative care team.

    Science.gov (United States)

    Hess, Denise

    2013-01-01

    As the spiritual care needs of patients and their loved ones have become an essential component of palliative care, clinicians are being challenged to develop new ways of addressing the spiritual issues that often arise in the palliative care setting. Recent research has given attention to the communication strategies that are effective with patients or their loved ones who report that they are seeking a miraculous physical healing. However, these strategies often assume a unilateral rather than collaborative view of divine intervention. Communication strategies that are effective with unilateral understandings of divine intervention may be contraindicated with those who hold to a collaborative view of divine intervention. Greater attention to language of human-divine interaction along with approaching faith healing as a third modality of treatment are explored as additional interventions.

  8. The palliative care movement in India: Another freedom struggle or a silent revolution?

    Directory of Open Access Journals (Sweden)

    Cherian Koshy

    2009-01-01

    Full Text Available The message of palliative care in India has become a movement in several parts of India in a short span of time. The past two decades have seen palpable changes in the mindset of health care providers, and policy makers with respect to the urgency in providing palliative care. With a population of over a billion spread over a vast geo-political mosaic, the reach and reliability of palliative care programmes may appear staggering and insurmountable. Nonetheless we have reasons to be proud in that we have overcome several hurdles and is presently in a ′consolidation mode′. It is only a matter of time before the ′aam admi′ has access to good palliative care. Easing narcotic licensing procedures, creation of standard operating procedures for morphine availability and the passing of the ′Palliative Care Policy′ by the Government of Kerala are commendable milestones. We are today having more of ′silver linings′ and less of ′dark clouds′.

  9. The palliative care movement in India: another freedom struggle or a silent revolution?

    Science.gov (United States)

    Koshy, Cherian

    2009-01-01

    The message of palliative care in India has become a movement in several parts of India in a short span of time. The past two decades have seen palpable changes in the mindset of health care providers, and policy makers with respect to the urgency in providing palliative care. With a population of over a billion spread over a vast geo-political mosaic, the reach and reliability of palliative care programmes may appear staggering and insurmountable. Nonetheless we have reasons to be proud in that we have overcome several hurdles and is presently in a 'consolidation mode'. It is only a matter of time before the 'aam admi' has access to good palliative care. Easing narcotic licensing procedures, creation of standard operating procedures for morphine availability and the passing of the 'Palliative Care Policy' by the Government of Kerala are commendable milestones. We are today having more of 'silver linings' and less of 'dark clouds'.

  10. End-of-life care in the United States: policy issues and model programs of integrated care

    Directory of Open Access Journals (Sweden)

    Joshua M. Wiener

    2003-05-01

    Full Text Available Background: End-of-life care financing and delivery in the United States is fragmented and uncoordinated, with little integration of acute and long-term care services. Objective: To assess policy issues involving end-of-life care, especially involving the hospice benefit, and to analyse model programs of integrated care for people who are dying. Methods: The study conducted structured interviews with stakeholders and experts in end-of-life care and with administrators of model programs in the United States, which were nominated by the experts. Results: The two major public insurance programs—Medicare and Medicaid—finance the vast majority of end-of-life care. Both programs offer a hospice benefit, which has several shortcomings, including requiring physicians to make a prognosis of a six month life expectancy and insisting that patients give up curative treatment—two steps which are difficult for doctors and patients to make—and payment levels that may be too low. In addition, quality of care initiatives for nursing homes and hospice sometimes conflict. Four innovative health systems have overcome these barriers to provide palliative services to beneficiaries in their last year of life. Three of these health systems are managed care plans which receive capitated payments. These providers integrate health, long-term and palliative care using an interdisciplinary team approach to management of services. The fourth provider is a hospice that provides palliative services to beneficiaries of all ages, including those who have not elected hospice care. Conclusions: End-of-life care is deficient in the United States. Public payers could use their market power to improve care through a number of strategies.

  11. Pediatric Palliative Care: A Personal Story

    Science.gov (United States)

    ... a pediatric neuroblastoma patient—and her family. The story demonstrates how palliative care can positively influence a patient's and family's experience with illness. Category Science & Technology License Standard YouTube License Show more Show less ...

  12. Sensitivity and specificity of a two-question screening tool for depression in a specialist palliative care unit.

    LENUS (Irish Health Repository)

    Payne, Ann

    2012-02-03

    OBJECTIVES: The primary objective in this study is to determine the sensitivity and specificity of a two-item screening interview for depression versus the formal psychiatric interview, in the setting of a specialist palliative in-patient unit so that we may identify those individuals suffering from depressive disorder and therefore optimise their management in this often-complex population. METHODS: A prospective sample of consecutive admissions (n = 167) consented to partake in the study, and the screening interview was asked separately to the formal psychiatric interview. RESULTS: The two-item questionnaire, achieved a sensitivity of 90.7% (95% CI 76.9-97.0) but a lower specificity of 67.7% (95% CI 58.7-75.7). The false positive rate was 32.3% (95% CI 24.3-41.3), but the false negative rate was found to be a low 9.3% (95% CI 3.0-23.1). A subgroup analysis of individuals with a past experience of depressive illness, (n = 95), revealed that a significant number screened positive for depression by the screening test, 55.2% (16\\/29) compared to those with no background history of depression, 33.3% (22\\/66) (P = 0.045). CONCLUSION: The high sensitivity and low false negative rate of the two-question screening tool will aid health professionals in identifying depression in the in-patient specialist palliative care unit. Individuals, who admit to a previous experience of depressive illness, are more likely to respond positively to the two-item questionnaire than those who report no prior history of depressive illness (P = 0.045).

  13. Medical futility at the end of life: the perspectives of intensive care and palliative care clinicians.

    Science.gov (United States)

    Jox, Ralf J; Schaider, Andreas; Marckmann, Georg; Borasio, Gian Domenico

    2012-09-01

    Medical futility at the end of life is a growing challenge to medicine. The goals of the authors were to elucidate how clinicians define futility, when they perceive life-sustaining treatment (LST) to be futile, how they communicate this situation and why LST is sometimes continued despite being recognised as futile. The authors reviewed ethics case consultation protocols and conducted semi-structured interviews with 18 physicians and 11 nurses from adult intensive and palliative care units at a tertiary hospital in Germany. The transcripts were subjected to qualitative content analysis. Futility was identified in the majority of case consultations. Interviewees associated futility with the failure to achieve goals of care that offer a benefit to the patient's quality of life and are proportionate to the risks, harms and costs. Prototypic examples mentioned are situations of irreversible dependence on LST, advanced metastatic malignancies and extensive brain injury. Participants agreed that futility should be assessed by physicians after consultation with the care team. Intensivists favoured an indirect and stepwise disclosure of the prognosis. Palliative care clinicians focused on a candid and empathetic information strategy. The reasons for continuing futile LST are primarily emotional, such as guilt, grief, fear of legal consequences and concerns about the family's reaction. Other obstacles are organisational routines, insufficient legal and palliative knowledge and treatment requests by patients or families. Managing futility could be improved by communication training, knowledge transfer, organisational improvements and emotional and ethical support systems. The authors propose an algorithm for end-of-life decision making focusing on goals of treatment.

  14. Palliative Care Office Hours for Patients with Hematologic Malignancies: An Innovative Model for Symptom Management and Education.

    Science.gov (United States)

    Foxwell, Anessa M; Moyer, Mary E; Casarett, David J; O'Connor, Nina R

    2017-10-01

    Palliative care programs are experiencing rapid growth, with demand for consults surpassing staffing. Innovative models are needed to equip nonpalliative care providers to manage basic palliative care issues. To develop a novel program of palliative care office hours for hematologic oncology advanced practice providers, and to evaluate its impact on palliative care consult volume and composition. A palliative care nurse practitioner or pharmacist was available for weekday office hours to all inpatient hematologic oncology advanced practice providers at an academic medical center to offer advice on pain, nonpain symptoms, and psychosocial distress. A retrospective study looking at outcome measures after six months of office hour utilization and palliative care consults from the hematologic oncology services. Palliative care office hours had a mean duration of 16 minutes per day (range 5 to 55). A mean of 11 patients were discussed per week (range 4 to 20). Pain, nausea, and anxiety were the issues most frequently raised. Of 299 patients discussed during office hours, 44 (14.7%) subsequently required a full palliative care consult. Overall, palliative care consults from the hematologic oncology services decreased from 19.6% to 10.2% of admissions (87/445 vs. 61/594, p Office hours are an efficient way to address palliative care needs when demand for palliative care consults exceeds capacity. Office hours may serve an educational function as well, enabling primary teams to manage basic palliative care issues with increasing independence over time.

  15. 'To die with dignity': an update on Palliative Care.

    Science.gov (United States)

    Brennan, Frank

    2017-08-01

    Significant developments have occurred in the discipline of palliative care in the modern era. This paper shall explore those developments, challenge some widely held misconceptions about the role and daily practice of the discipline, highlight the growing recognition of the role of palliative care in non-malignant diseases, briefly discuss innovations in symptom management and reflect on the underlying principles, maturation and challenges faced by the discipline. © 2017 Royal Australasian College of Physicians.

  16. The Family Meeting in Palliative Care: Role of the Oncology Nurse.

    Science.gov (United States)

    Glajchen, Myra; Goehring, Anna

    2017-12-01

    To describe the family meeting in palliative and end-of-life care, highlighting the role of the oncology nurse. Specific strategies will be provided for pre-meeting preparation, communication, and follow-up activities. A conceptual framework drawn from family and communication theory, and best practices from the clinical, research, nursing, and palliative care literature. Working with patients and families is complex, but the family meeting is a promising tool and a potential quality indicator in palliative care. The nurse is well positioned to participate fully in every aspect of the family meeting. Copyright © 2017 Elsevier Inc. All rights reserved.

  17. Pediatric Palliative Care: A Personal Story

    Medline Plus

    Full Text Available ... NEOMED) 26,193 views 5:39 Little Stars – Paediatric Palliative Care – Charlie's Story - Duration: 10:35. Little Stars 12,759 ... in to add this to Watch Later Add to Loading playlists...

  18. The relationships between the combination of person- and organization-related conditions and patients' perceptions of palliative care quality.

    Science.gov (United States)

    Sandsdalen, Tuva; Høye, Sevald; Rystedt, Ingrid; Grøndahl, Vigdis Abrahamsen; Hov, Reidun; Wilde-Larsson, Bodil

    2017-12-06

    Little is known about the combination of person- and organization- related conditions and the relationships with patients' perspectives of care quality. Such a combination could contribute knowledge reflecting the complexity of clinical practice, and enhance individualized care. The aim was to investigate the relationships between the combination of person- and organization-related conditions and patients' perceptions of palliative care quality. A cross-sectional study, including 191 patients in the late palliative phase (73% response rate) admitted to hospice inpatient care (n = 72), hospice day care (n = 51), palliative units in nursing homes (n = 30) and home care (n = 38), was conducted between November 2013 and December 2014, using the instrument Quality from the Patients' Perspective specific to palliative care (QPP-PC). Data were analysed, using analysis of covariance, to explore the amount of the variance in the dependent variables (QPP-PC) that could be explained by combination of the independent variables - Person- and organization-related conditions, - while controlling for differences in covariates. Patients scored the care received and the subjective importance as moderate to high. The combination of person- and organization - related conditions revealed that patients with a high sense of coherence, lower age (person - related conditions) and being in a ward with access to and availability of physicians (organization-related condition) might be associated with significantly higher scores for the quality of care received. Gender (women), daily contact with family and friends, and low health-related quality of life (person-related conditions) might be associated with higher scores for subjective importance of the aspects of care quality. Healthcare personnel, leaders and policy makers need to pay attention to person- and organization-related conditions in order to provide person-centered palliative care of high quality. Further studies from

  19. Sedation in palliative care – a critical analysis of 7 years experience

    Science.gov (United States)

    Muller-Busch, H Christof; Andres, Inge; Jehser, Thomas

    2003-01-01

    Background The administration of sedatives in terminally ill patients becomes an increasingly feasible medical option in end-of-life care. However, sedation for intractable distress has raised considerable medical and ethical concerns. In our study we provide a critical analysis of seven years experience with the application of sedation in the final phase of life in our palliative care unit. Methods Medical records of 548 patients, who died in the Palliative Care Unit of GK Havelhoehe between 1995–2002, were retrospectively analysed with regard to sedation in the last 48 hrs of life. The parameters of investigation included indication, choice and kind of sedation, prevalence of intolerable symptoms, patients' requests for sedation, state of consciousness and communication abilities during sedation. Critical evaluation included a comparison of the period between 1995–1999 and 2000–2002. Results 14.6% (n = 80) of the patients in palliative care had sedation given by the intravenous route in the last 48 hrs of their life according to internal guidelines. The annual frequency to apply sedation increased continuously from 7% in 1995 to 19% in 2002. Main indications shifted from refractory control of physical symptoms (dyspnoea, gastrointestinal, pain, bleeding and agitated delirium) to more psychological distress (panic-stricken fear, severe depression, refractory insomnia and other forms of affective decompensation). Patients' and relatives' requests for sedation in the final phase were significantly more frequent during the period 2000–2002. Conclusion Sedation in the terminal or final phase of life plays an increasing role in the management of intractable physical and psychological distress. Ethical concerns are raised by patients' requests and needs on the one hand, and the physicians' self-understanding on the other hand. Hence, ethically acceptable criteria and guidelines for the decision making are needed with special regard to the nature of refractory

  20. Sedation in palliative care – a critical analysis of 7 years experience

    Directory of Open Access Journals (Sweden)

    Andres Inge

    2003-05-01

    Full Text Available Abstract Background The administration of sedatives in terminally ill patients becomes an increasingly feasible medical option in end-of-life care. However, sedation for intractable distress has raised considerable medical and ethical concerns. In our study we provide a critical analysis of seven years experience with the application of sedation in the final phase of life in our palliative care unit. Methods Medical records of 548 patients, who died in the Palliative Care Unit of GK Havelhoehe between 1995–2002, were retrospectively analysed with regard to sedation in the last 48 hrs of life. The parameters of investigation included indication, choice and kind of sedation, prevalence of intolerable symptoms, patients' requests for sedation, state of consciousness and communication abilities during sedation. Critical evaluation included a comparison of the period between 1995–1999 and 2000–2002. Results 14.6% (n = 80 of the patients in palliative care had sedation given by the intravenous route in the last 48 hrs of their life according to internal guidelines. The annual frequency to apply sedation increased continuously from 7% in 1995 to 19% in 2002. Main indications shifted from refractory control of physical symptoms (dyspnoea, gastrointestinal, pain, bleeding and agitated delirium to more psychological distress (panic-stricken fear, severe depression, refractory insomnia and other forms of affective decompensation. Patients' and relatives' requests for sedation in the final phase were significantly more frequent during the period 2000–2002. Conclusion Sedation in