PALLIATIVE CARE IN SLOVENIA AND FUTURE CHALLENGES

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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.

The effect of horticultural therapy on the quality of life of palliative care patients.

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Lai, Claudia Kam-Yuk; Lau, Carmen Ka-Yan; Kan, Wai Yin; Lam, Wai Man; Fung, Connie Yuen Yee

2017-01-01

Palliative care patients experience a variety of needs and perceive their quality of life as being only fair. This study adopted a single-group repeated-measure design to investigate the effect of horticultural therapy on the quality of life of palliative care patients using the Quality of Life Concern in End of Life Questionnaire. Significant differences in the domains of "existential distress" and "health care concern" were observed immediately postintervention and at 4 weeks postintervention, respectively. No other significant differences were seen in the other domains or in the total mean score of the outcome measure.

Medication and monitoring in palliative sedation therapy: a systematic review and quality assessment of published guidelines.

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Schildmann, Eva Katharina; Schildmann, Jan; Kiesewetter, Isabel

2015-04-01

Palliative sedation therapy (PST) is increasingly used in patients at the end of life. However, consensus about medications and monitoring is lacking. To assess published PST guidelines with regard to quality and recommendations on drugs and monitoring. We searched CINAHL, the Cochrane Library, Embase, PsycINFO, PubMed, and references of included articles until July 2014. Search terms included "palliative sedation" or "sedation" and "guideline" or "policy" or "framework." Guideline selection was based on English or German publications that included a PST guideline. Two investigators independently assessed the quality of the guidelines according to the Appraisal of Guidelines for Research and Evaluation II instrument (AGREE II) and extracted information on drug selection and monitoring. Nine guidelines were eligible. Eight guidelines received high quality scores for the domain "scope and purpose" (median 69%, range 28-83%), whereas in the other domains the guidelines' quality differed considerably. The majority of guidelines suggest midazolam as drug of first choice. Recommendations on dosage and alternatives vary. The guidelines' recommendations regarding monitoring of PST show wide variation in the number and details of outcome parameters and methods of assessment. The published guidelines on PST vary considerably regarding their quality and content on drugs and monitoring. Given the need for clear guidance regarding PST in patients at the end of life, this comparative analysis may serve as a starting point for further improvement. Copyright © 2015 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

'Busyness' and the preclusion of quality palliative district nursing care.

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Nagington, Maurice; Luker, Karen; Walshe, Catherine

2013-12-01

Ethical care is beginning to be recognised as care that accounts for the views of those at the receiving end of care. However, in the context of palliative and supportive district nursing care, the patients' and their carers' views are seldom heard. This qualitative research study explores these views. Data were collected through semi-structured interviews with 26 patients with palliative and supportive care needs receiving district nursing care, and 13 of their carers. Participants were recruited via community nurses and hospices between September 2010 and October 2011. Post-structural discourse analysis is used to examine how discourses operate on a moral level. One discourse, 'busyness', is argued to preclude a moral form of nursing care. The discourse of friendship is presented to contrast this. Discussion explores Gallagher's 'slow ethics' and challenges the currently accepted ways of measuring to improve quality of care concluding that quality cannot be measured.

The use of Quality-Adjusted Life Years in cost-effectiveness analyses in palliative care: Mapping the debate through an integrative review.

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Wichmann, Anne B; Adang, Eddy Mm; Stalmeier, Peep Fm; Kristanti, Sinta; Van den Block, Lieve; Vernooij-Dassen, Myrra Jfj; Engels, Yvonne

2017-04-01

In cost-effectiveness analyses in healthcare, Quality-Adjusted Life Years are often used as outcome measure of effectiveness. However, there is an ongoing debate concerning the appropriateness of its use for decision-making in palliative care. To systematically map pros and cons of using the Quality-Adjusted Life Year to inform decisions on resource allocation among palliative care interventions, as brought forward in the debate, and to discuss the Quality-Adjusted Life Year's value for palliative care. The integrative review method of Whittemore and Knafl was followed. Theoretical arguments and empirical findings were mapped. A literature search was conducted in PubMed, EMBASE, and CINAHL, in which MeSH (Medical Subject Headings) terms were Palliative Care, Cost-Benefit Analysis, Quality of Life, and Quality-Adjusted Life Years. Three themes regarding the pros and cons were identified: (1) restrictions in life years gained, (2) conceptualization of quality of life and its measurement, including suggestions to adapt this, and (3) valuation and additivity of time, referring to changing valuation of time. The debate is recognized in empirical studies, but alternatives not yet applied. The Quality-Adjusted Life Year might be more valuable for palliative care if specific issues are taken into account. Despite restrictions in life years gained, Quality-Adjusted Life Years can be achieved in palliative care. However, in measuring quality of life, we recommend to-in addition to the EQ-5D- make use of quality of life or capability instruments specifically for palliative care. Also, we suggest exploring the possibility of integrating valuation of time in a non-linear way in the Quality-Adjusted Life Year.

Value of palliation and improvement in quality of life in oesophageal cancer patients treated with iridium - 192 HDR fractionated brachytherapy

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Biaias, B.; Kaleta, R.; Fijaikowski, M.

1996-01-01

During December 1992 - November 1995 twenty-two patients with oesophageal cancer were treated with palliative HDR brachytherapy. Sixteen patients had local recurrence or progression after external radiotherapy and the remaining six patients were treated with brachytherapy alone. All patients received fractions of 7.5 Gy at the reference point 2 - 4 time weekly. Reference point was calculated at 0.5 cm distance from applicator surface. Microselectron HDR device with Iridium-192 source were used. Criteria for palliative effect were as follow: relive of symptoms time of occurrence and duration of palliative effect. Quality of life during and after treatment were evaluated by patients and staff independently. In majority of patients both palliative effect and significant improvement of quality of life were noted. Detail results include: - improvement in swallowing in 63,6% ((14(22))); - increase in body weight in 45% ((10(22))); - pain relive 70% ((12(17))); - appearance of palliation 1 hour - 8 days; - duration of palliation - 3-12 mo. (median 5 mo.); Quality of live - improvement - 59% ((13(22))); - no improvement - 27.3% ((6(22))); - worsening - 13.7% ((3(22))); No improvement or worsening in quality of life were observed only in patients who obtained radical radiotherapy previously. Brachytherapy is an effective method of palliative treatment for as well primary and recurrent oesophageal cancer

Feeling Heard & Understood in the Hospital Environment: Benchmarking Communication Quality Among Patients with Advanced Cancer Before and After Palliative Care Consultation.

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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.

Quality of life and religious-spiritual coping in palliative cancer care patients.

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Matos, Ticiane Dionizio de Sousa; Meneguin, Silmara; Ferreira, Maria de Lourdes da Silva; Miot, Helio Amante

2017-07-10

to compare the quality of life and religious-spiritual coping of palliative cancer care patients with a group of healthy participants; assess whether the perceived quality of life is associated with the religious-spiritual coping strategies; identify the clinical and sociodemographic variables related to quality of life and religious-spiritual coping. cross-sectional study involving 96 palliative outpatient care patient at a public hospital in the interior of the state of São Paulo and 96 healthy volunteers, using a sociodemographic questionnaire, the McGill Quality of Life Questionnaire and the Brief Religious-Spiritual Coping scale. 192 participants were interviewed who presented good quality of life and high use of Religious-Spiritual Coping. Greater use of negative Religious-Spiritual Coping was found in Group A, as well as lesser physical and psychological wellbeing and quality of life. An association was observed between quality of life scores and Religious-Spiritual Coping (pestrategias de coping religioso-espiritual; identificar las variables clínicas y sociodemográficas relacionadas a la calidad de vida y al coping religioso-espiritual. estudio transversal, desarrollado con 96 pacientes de ambulatorio de cuidados paliativos en un hospital público en el interior del Estado de São Paulo, Brasil, y 96 voluntarios sanos, mediante cuestionario utilizando datos sociodemográficos, el McGill Quality of Life Questionnaire y el Coping Religioso-Espiritual-Breve. fueron entrevistados 192 participantes que presentaron buena calidad de vida y alta utilización del Coping Religioso-Espiritual. Fue encontrado mayor uso de Coping Religioso-Espiritual negativo en el Grupo A, y también menor bienestar físico, psicológico y de calidad de vida. Fue observada asociación entre los scores de calidad de vida y Coping Religioso-Espiritual (pestrategia de enfrentamiento en pacientes bajo cuidados paliativos.

Trending Longitudinal Agreement between Parent and Child Perceptions of Quality of Life for Pediatric Palliative Care Patients

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Meaghann S. Weaver

2017-08-01

Full Text Available Pediatric palliative care studies often rely on proxy-reported instead of direct child-reported quality of life metrics. The purpose of this study was to longitudinally evaluate quality of life for pediatric patients receiving palliative care consultations and to compare patient-reported quality of life with parent perception of the child’s quality of life across wellness domains. The 23-item PedsQL™ V4.0 Measurement Model was utilized for ten child and parent dyads at time of initial palliative care consultation, Month 6, and Month 12 to assess for physical, emotional, social, and cognitive dimensions of quality of life as reported independently by the child and by the parent for the child. Findings were analyzed using Bland–Altman plots to compare observed differences to limits of agreement. This study revealed overall consistency between parent- and child-reported quality of life across domains. Physical health was noted to be in closest agreement. At the time of initial palliative care consult, children collectively scored their social quality of life higher than parental perception of the child’s social quality of life; whereas, emotional and cognitive quality of life domains were scored lower by children than by the parental report. At the one year survey time point, the physical, emotional, and social domains trended toward more positive patient perception than proxy perception with congruence between quality of life scores for the cognitive domain. Findings reveal the importance of eliciting a child report in addition to a parent report when measuring and longitudinally trending perceptions on quality of life.

Palliative care in the home: a scoping review of study quality, primary outcomes, and thematic component analysis.

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Hofmeister, Mark; Memedovich, Ally; Dowsett, Laura E; Sevick, Laura; McCarron, Tamara; Spackman, Eldon; Stafinski, Tania; Menon, Devidas; Noseworthy, Tom; Clement, Fiona

2018-03-07

The aim of palliative care is to improve the quality of life of patients and families through the prevention and relief of suffering. Frequently, patients may choose to receive palliative care in the home. The objective of this paper is to summarize the quality and primary outcomes measured within the palliative care in the home literature. This will synthesize the current state of the literature and inform future work. A scoping review was completed using PRISMA guidelines. PubMed, Embase, CINAHL, Web of Science, Cochrane Library, EconLit, PsycINFO, Centre for Reviews and Dissemination, Database of Abstracts of Reviews of Effects, and National Health Service Economic Evaluation Database were searched from inception to August 2016. Inclusion criteria included: 1) care was provided in the "home of the patient" as defined by the study, 2) outcomes were reported, and 3) reported original data. Thematic component analysis was completed to categorize interventions. Fifty-three studies formed the final data set. The literature varied extensively. Five themes were identified: accessibility of healthcare, caregiver support, individualized patient centered care, multidisciplinary care provision, and quality improvement. Primary outcomes were resource use, symptom burden, quality of life, satisfaction, caregiver distress, place of death, cost analysis, or described experiences. The majority of studies were of moderate or unclear quality. There is robust literature of varying quality, assessing different components of palliative care in the home interventions, and measuring different outcomes. To be meaningful to patients, these interventions need to be consistently evaluated with outcomes that matter to patients. Future research could focus on reaching a consensus for outcomes to evaluate palliative care in the home interventions.

The Impact of Public Health Awareness Campaigns on the Awareness and Quality of Palliative Care.

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Seymour, Jane

2018-01-01

The right to health includes a right of access to good quality palliative care, but inequalities persist. Raising awareness is a key plank of the public health approach to palliative care, but involves consideration of subjects most of us prefer not to address. This review addresses the question: "do public health awareness campaigns effectively improve the awareness and quality of palliative care"? The evidence shows that public awareness campaigns can improve awareness of palliative care and probably improve quality of care, but there is a lack of evidence about the latter. Rapid review and synthesis. A comprehensive public awareness campaign about palliative care (including advance care planning and end-of-life decision making) should be based on clear and shared terminology, use well piloted materials, and the full range of mass media to suit different ages, cultures, and religious/spiritual perspectives. Arts and humanities have a role to play in allowing individuals and communities to express experiences of illness, death, and grief and encourage conversation and thoughtful reflection. There is evidence about key factors for success: targeting, networking, and use of specific, measurable, achievable, realistic time-bound objectives; continuous evaluation; and complementarity to national and international policy. Campaigns should be located within the framework of public health promotion and the synergy between short national mass media campaigns and longer term local community action initiatives carefully considered. National and local projects to raise awareness should identify and address any barriers at the level of individuals, communities, and systems of care, for example, literacy skills and unequal access to resources.

When palliative treatment achieves more than palliation: Instances of long-term survival after palliative radiotherapy

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Madhup Rastogi

2012-01-01

Full Text Available Context: Palliative radiotherapy aims at symptom alleviation and improvement of quality of life. It may be effective in conferring a reasonable quantum of local control, as well as possibly prolonging survival on the short term. However, there can be rare instances where long-term survival, or even cure, results from palliative radiotherapy, which mostly uses sub-therapeutic doses. Aim: To categorize and characterize the patients with long-term survival and/or cure after palliative radiotherapy. Materials and Methods: This study is a retrospective analysis of hospital records of patients treated with palliative radiotherapy from 2001 to 2006 at the Regional Cancer Centre, Shimla. Results: Of the analyzed 963 patients who received palliative radiotherapy, 2.4% (n = 23 survived at least 5 years, with a large majority of these surviving patients (73.9%, n = 17 being free of disease. Conclusions: In addition to providing valuable symptom relief, palliative radiotherapy utilizing sub-therapeutic doses may, in a small proportion of patients, bestow long-term survival, and possibly cure. Rationally, such a favorable, but rare outcome cannot be expected with supportive care alone.

The PAMINO-project: evaluating a primary care-based educational program to improve the quality of life of palliative patients

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Engeser Peter

2007-05-01

Full Text Available Abstract Background The care of palliative patients challenges the health care system in both quantity and quality. Especially the role of primary care givers needs to be strengthened to provide them with the knowledge and the confidence of applying an appropriate end-of-life care to palliative patients. To improve health care services for palliative patients in primary care, interested physicians in and around Heidelberg, Germany, are enabled to participate in the community-based program 'Palliative Medical Initiative North Baden (PAMINO' to improve their knowledge in dealing with palliative patients. The impact of this program on patients' health and quality of life remains to be evaluated. Methods/Design The evaluation of PAMINO is a non-randomized, controlled study. Out of the group of primary care physicians who took part in the PAMINO program, a sample of 45 physicians and their palliative patients will be compared to a sample of palliative patients of 45 physicians who did not take part in the program. Every four weeks for 6 months or until death, patients, physicians, and the patients' family caregivers in both groups answer questions to therapy strategies, quality of life (QLQ-C15-PAL, POS, pain (VAS, and burden for family caregivers (BSFC. The inclusion of physicians and patients in the study starts in March 2007. Discussion Although participating physicians value the increase in knowledge they receive from PAMINO, the effects on patients remain unclear. If the evaluation reveals a clear benefit for patients' quality of life, a larger-scale implementation of the program is considered. Trial registration: The study was registered at ‘current controlled trials (CCT’, registration number: ISRCTN78021852.

Palliative Care.

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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.

Palliative Care in Romania.

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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.

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

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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

The EORTC Core Quality of Life questionnaire (QLQ-C30): validity and reliability when analysed with patients treated with palliative radiotherapy

International Nuclear Information System (INIS)

Kaasa, S.; Aaronson, N.

1995-01-01

The EORTC Core Quality of Life questionnaire (EORTC QLQ-C30) is designed to measure cancer patients' physical, psychological and social functions. The questionnaire is composed of multi-item scales and single items. 247 patients completed the EORTC QLQ-C30 before palliative radiotherapy and 181 after palliative radiotherapy. The questionnaire was well accepted with a high completion rate in the present patient population consisting of advanced cancer patients with short life expectancy. In addition, the questionnaire was found to be useful to detect the effect of palliative radiotherapy over time. The scale reliability was excellent for all scales except the role functioning scale. Excellent criterion validity was found for the emotional functioning scale where it was correlated with GHQ-20. Performance of the questionnaire was improved after the second evaluation as compared with the first. The present study shows that the EORTC-QLQ-C30 is found to be practical and valid in measuring quality of life in patients with advanced disease. (author)

Palliative Radiotherapy

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Salinas, J.

2003-01-01

Palliative care does not attempt to prolong survival but to the achieve the highest quality of life both for the patient and their family covering their physical, psychological, social and spiritual needs. Radiotherapy (RT), one of the most important therapeutic modalities, has a great significance in palliative medicine for cancer since it attempts to reduce as much as possible the acute reaction associated with the treatment for the patient. (Author)

Clinical staff perceptions of palliative care-related quality of care, service access, education and training needs and delivery confidence in an acute hospital setting.

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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.

Psychosocial issues in palliative care

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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 ...

Identifying models of delivery, care domains and quality indicators relevant to palliative day services: a scoping review protocol.

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O'Connor, Seán R; Dempster, Martin; McCorry, Noleen K

2017-05-16

With an ageing population and increasing numbers of people with life-limiting illness, there is a growing demand for palliative day services. There is a need to measure and demonstrate the quality of these services, but there is currently little agreement on which aspects of care should be used to do this. The aim of the scoping review will be to map the extent, range and nature of the evidence around models of delivery, care domains and existing quality indicators used to evaluate palliative day services. Electronic databases (MEDLINE, EMBASE, CINAHL, PsycINFO, Cochrane Central Register of Controlled Trials) will be searched for evidence using consensus development methods; randomised or quasi-randomised controlled trials; mixed methods; and prospective, longitudinal or retrospective case-control studies to develop or test quality indicators for evaluating palliative care within non-residential settings, including day hospices and community or primary care settings. At least two researchers will independently conduct all searches, study selection and data abstraction procedures. Meta-analyses and statistical methods of synthesis are not planned as part of the review. Results will be reported using numerical counts, including number of indicators in each care domain and by using qualitative approach to describe important indicator characteristics. A conceptual model will also be developed to summarise the impact of different aspects of quality in a palliative day service context. Methodological quality relating to indicator development will be assessed using the Appraisal of Indicators through Research and Evaluation (AIRE) tool. Overall strength of evidence will be assessed using the Grading of Recommendations, Assessment, Development, and Evaluation (GRADE) system. Final decisions on quality assessment will be made via consensus between review authors. Identifying, developing and implementing evidence-based quality indicators is critical to the evaluation and

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

Quality of life of cancer patients motivation for palliative radiotherapy

International Nuclear Information System (INIS)

Yaneva, M.

2006-01-01

Full text: Most patients with advanced diseases suffer from symptoms that are distressing in nature and can interfere with their activities of daily living and different aspects of functioning. In these circumstances, improving quality of life is very important. Patients with bone metastases feel pain with different intensity and the palliative irradiation helps to relieve this pain. The primary goal of palliative irradiation with different radiation schedules in advanced cancer is to control the incurable disease and to maintain or improve the patients' quality of life. Two features characterize most forms of QOL evaluation: 1. QOL is a multidimensional construct and is best measured using instruments that assess multiple domains of functioning and well-being. They measure physical, social and emotional aspects of functioning as well as common symptoms of cancer and its treatment (pain, nausea and fatigue). 2. QOL is subjective phenomenon and the patient is the best judge of his own QOL. Assessment of QOL in radiooncology is performed using patient self-report questionnaires. Two of the most widely used multidimensional QOL instruments are the General Version of the Functional Assessment of Cancer Therapy (FACT-G) and the EORTC-QOL-C30. In patients with advanced disease with metastases another endpoint besides survival may be of interest and it is QOL

Listening to parents: The role of symptom perception in pediatric palliative home care.

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Vollenbroich, René; Borasio, Gian Domenico; Duroux, Ayda; Grasser, Monika; Brandstätter, Monika; Führer, Monika

2016-02-01

This study analyzes symptom perception by parents and healthcare professionals and the quality of symptom management in a pediatric palliative home care setting and identifies which factors contribute to a high quality of palliative and end-of-life care for children. In this retrospective, cross-sectional study, parents were surveyed at the earliest three months after their child's death. All children were cared for by a specialized home pediatric palliative care team that provides a 24/7 medical on-call service. Questionnaires assessed symptom prevalence and intensity during the child's last month of life as perceived by parents, symptom perception, and treatment by medical staff. The responses were correlated with essential palliative care outcome measures (e.g., satisfaction with the care provided, quality-of-life of affected children and parents, and peacefulness of the dying phase). Thirty-eight parent dyads participated (return rate 84%; 35% oncological disorders). According to parental report, dyspnea (61%) and pain (58%) were the dominant symptoms with an overall high symptom load (83%). Pain, agitation, and seizures could be treated more successfully than other symptoms. Successful symptom perception was achieved in most cases and predicted the quality of symptom treatment (R 2, 0.612). Concordant assessment of symptom severity between parents and healthcare professionals (HCPs) improved the satisfaction with the care provided (p = 0.037) as well as the parental quality-of-life (p = 0.041). Even in cases with unsuccessful symptom control, parents were very satisfied with the SHPPC team's care (median 10; numeric rating scale 0-10) and rated the child's death as highly peaceful (median 9). Significance of the results: The quality and the concordance of symptom perception between parents and HCPs essentially influence parental quality-of-life as well as parental satisfaction and constitute a predictive factor for the quality of symptom treatment and

Quality of Living and Dying: Pediatric Palliative Care and End-of-Life Decisions in the Netherlands.

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Brouwer, Marije; Maeckelberghe, Els; DE Weerd, Willemien; Verhagen, Eduard

2018-07-01

In 2002, The Netherlands continued its leadership in developing rules and jurisdiction regarding euthanasia and end-of-life decisions by implementing the Euthanasia Act, which allows euthanasia for patients 12 years of age and older. Subsequently, in 2005, the regulation on active ending of life for newborns was issued. However, more and more physicians and parents have stated that the age gap between these two regulations-children between 1 and 12 years old-is undesirable. These children should have the same right to end their suffering as adults and newborn infants. An extended debate on pediatric euthanasia ensued, and currently the debate is ongoing as to whether legislation should be altered in order to allow pediatric euthanasia. An emerging major question regards the active ending of life in the context of palliative care: How does a request for active ending of life relate to the care that is given to children in the palliative phase? Until now, the distinction between palliative care and end-of-life decisions continues to remain unclear, making any discussion about their mutual in- and exclusiveness hazardous at best. In this report, therefore, we aim to provide insight into the relationship between pediatric palliative care and end-of-life decisions, as understood in the Netherlands. We do so by first providing an overview of the (legal) rules and regulations regarding euthanasia and active ending of life, followed by an analysis of the relationship between these two, using the Dutch National Guidelines for Palliative Care for Children. The results of this analysis revealed two major and related features of palliative care and end-of-life decisions for children: (1) palliative care and end-of-life decisions are part of the same process, one that focuses both on quality of living and quality of dying, and (2) although physicians are seen as ultimately responsible for making end-of-life decisions, the involvement of parents and children in this decision is

Interventions for healthcare professionals, organizations and patients to enhance quality of life for people diagnosed with palliative esophagogastric cancer: a systematic review.

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Cowley, Alison; Bath-Hextall, Fiona; Cooper, Joanne

2017-03-01

Esophagogastric (EG) cancer is the fifth most common malignancy, and its incidence is increasing. The disease is fast paced, and five-year survival rates are poor. Treatment with palliative intent is provided for the majority of patients but there remains a lack of empirical evidence into the most effective service models to support EG cancer patients. The overall objective of this quantitative systematic review was to establish best practice in relation to interventions targeted at healthcare professionals or the structures in which healthcare professionals deliver care (i.e. models of care and practice) and patients (diagnosed with palliative EG cancer) to enhance the quality of life for people diagnosed with palliative EG cancer. The current review considered studies that included patients diagnosed with palliative EG cancer and any health professionals involved in the delivery of palliative care to this patient group in a hospital, home or community setting. The current review considered studies that evaluated any intervention or combination of intervention strategies aimed at healthcare professionals, organizations or patients to improve quality of life for people diagnosed with palliative EG cancer. The current review considered both experimental and epidemiological study designs. Studies were excluded that evaluated: screening programs, pharmacology alone, palliative oncology and palliative endoscopy. The primary outcome measure was objectively measured quality of life. A three-step search strategy was utilized. Sixteen databases were searched for papers from the year 2000 onward and followed by hand searching of reference lists. Methodological quality was not assessed as no articles were found that met the inclusion criteria. Data extraction was not possible as no articles were found that met the inclusion criteria. It was not possible to complete data synthesis as no articles were found that met the inclusion criteria. Comprehensive searching and study

Mindfulness for palliative care patients. Systematic review.

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Latorraca, Carolina de Oliveira Cruz; Martimbianco, Ana Luiza Cabrera; Pachito, Daniela Vianna; Pacheco, Rafael Leite; Riera, Rachel

2017-12-01

Nineteen million adults worldwide are in need of palliative care. Of those who have access to it, 80% fail to receive an efficient management of symptoms. To assess the effectiveness and safety of mindfulness meditation for palliative care patients. We searched CENTRAL, MEDLINE, Embase, LILACS, PEDro, CINAHL, PsycINFO, Opengrey, ClinicalTrials.gov and WHO-ICTRP. No restriction of language, status or date of publication was applied. We considered randomised clinical trials (RCTs) comparing any mindfulness meditation scheme vs any comparator for palliative care. Cochrane Risk of Bias (Rob) Table was used for assessing methodological quality of RCTs. Screening, data extraction and methodological assessments were performed by two reviewers. Mean differences (MD) (confidence intervals of 95% (CI 95%)) were considered for estimating effect size. Quality of evidence was appraised by GRADE. Four RCTs, 234 participants, were included. All studies presented high risk of bias in at least one RoB table criteria. We assessed 4 comparisons, but only 2 studies showed statistically significant difference for at least one outcome. 1. Mindfulness meditation (eight weeks, one session/week, daily individual practice) vs control: statistically significant difference in favour of control for quality of life - physical aspects. 2. Mindfulness meditation (single 5-minute session) vs control: benefit in favour of mindfulness for stress outcome in both time-points. None of the included studies analysed safety and harms outcomes. Although two studies have showed statistically significant difference, only one showed effectiveness of mindfulness meditation in improving perceived stress. This study focused on one single session of mindfulness of 5 minutes for adult cancer patients in palliative care, but it was considered as possessing high risk of bias. Other schemes of mindfulness meditation did not show benefit in any outcome evaluated (low and very low quality evidence). © 2017 John Wiley

Music Therapy in Palliative Care.

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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.

Palliative Care in Heart Failure

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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

Development of a questionnaire to measure the key attributes of the community palliative care specialist nurse role.

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Cameron, Dee; Johnston, Bridget

2015-02-01

Recent worldwide economic events have forced an examination of the nurse's contribution to high-quality, effective, person-centred care. Since the role of specialist nurses is considered one of the least understood or valued developments in nursing, specialist nurses must demonstrate their contribution to quality, person-centred health care. To develop a questionnaire which aims to measure the quality of care provided by palliative care specialist nurses from the patients' perspective and to undertake initial validation. The process of questionnaire development involved six phases including systematic literature reviews, patient advisory groups and expert panel reviews, each of which contributed to the questionnaire face and content validity. Johnston's Expert Palliative Care Nurse Model (2002; 2005) provided an evidence-based framework for the development of the questionnaire, and enabled the identification of the key attributes of the palliative care specialist nurse role, thereby providing the themes on which to base the questionnaire. The Quality Measure for Palliative Nursing, a questionnaire, was developed. The themes identified in the questionnaire--personal characteristics, communication skills, knowledge, relationship with patient and providing comfort--aim to facilitate measurement of the quality of care provided by palliative care specialist nurses. Designed for use by palliative patients the Quality Measure for Palliative Nursing is a one-page questionnaire comprising of 15 questions. The Quality Measure for Palliative Nursing is unique since it aims to measure the quality of care provided by community palliative care specialist nurses, and could also be used to measure patient satisfaction with the quality of care provided. Further testing is recommended to ensure that this questionnaire can provide reliable and valid results.

Physical therapy in palliative care: From symptom control to quality of life: A critical review

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Senthil P Kumar

2010-01-01

Full Text Available Physiotherapy is concerned with identifying and maximizing movement potential, within the spheres of promotion, prevention, treatment and rehabilitation. Physical therapists practice in a broad range of inpatient, outpatient, and community-based settings such as hospice and palliative care centers where as part of a multidisciplinary team of care, they address the physical and functional dimensions of the patients′ suffering. Physiotherapy treatment methods like therapeutic exercise, electrical modalities, thermal modalities, actinotherapy, mechanical modalities, manual physical therapy and assistive devices are useful for a range of life-threatening and life-limiting conditions like cancer and cancer-associated conditions; HIV; neurodegenerative disorders like amyotrophic lateral sclerosis, multiple sclerosis; respiratory disorders like idiopathic pulmonary fibrosis; and altered mental states. The professional armamentarium is still expanding with inclusion of other miscellaneous techniques which were also proven to be effective in improving quality of life in these patients. Considering the scope of physiotherapy in India, and in palliative care, professionals in a multidisciplinary palliative care team need to understand and mutually involve toward policy changes to successfully implement physical therapeutic palliative care delivery.

Assessment of palliative patients with chemoresistance pulmonary tuberculosis life quality in the conditions of specialized hospital at the corrective labour colony

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O. M. Raznatovska

2017-06-01

Full Text Available Objective – to evaluate the quality of life of palliative patients with drug-resistant pulmonary tuberculosis at a specialized hospital penal colony in terms of the questionnaire of the MOS SF-36 and justify the appropriateness of its application for a differentiated approach in dependence of physical or mentally health components oppression, monitoring their health status. Materials and Methods. Quality of life assessment was performed in 95 patients with drug-resistant pulmonary tuberculosis who were treated in a specialized tuberculosis hospital at the penal colony. 53 patients of them were on palliative treatment and included into main observation group and comparison group consisted of 42 patients who received antimycobacterial chemotherapy in the maintenance phase of treatment. To determine the norms of quality studied indicators in our region, we have formed a control group consisted of 40 healthy volunteers. For quality of life assessment the questionnaire of the MOS SF-36 was used. Results. Increase the intensity of pain in palliative patients with drug-resistant pulmonary tuberculosis contributes physical functioning limitation. Acute emotional instability (depression, anxiety and negative emotions with limited social activity causes low self-esteem of mental state. Such changes ultimately result in inhibition of the viability and general health deterioration. For these patients particular attention should be paid to such scale of life quality assessment asPF,VT and MH as they were significantly lower compared with those drug-resistant pulmonary tuberculosis patients with antimycobacterial chemotherapy in maintenance phase of treatment. Conclusions. Drug-resistant tuberculosis in patients who are in palliative care leads to a drastic reduction of all quality of life parameters. Using the questionnaire of the MOS SF-36 for quality of life in palliative patients with drug-resistant pulmonary tuberculosis assessment is reasonable for a

PALLIATIVE CARE IN ROMANIA : NEEDS AND RIGHTS

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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

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

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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.

Defining palliative care in cystic fibrosis: A Delphi study.

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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.

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

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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…

Palliative Care: Delivering Comprehensive Oncology Nursing Care.

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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.

A new quality assurance package for hospital palliative care teams: the Trent Hospice Audit Group model.

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Hunt, J; Keeley, V L; Cobb, M; Ahmedzai, S H

2004-07-19

Cancer patients in hospitals are increasingly cared for jointly by palliative care teams, as well as oncologists and surgeons. There has been a considerable growth in the number and range of hospital palliative care teams (HPCTs) in the United Kingdom. HPCTs can include specialist doctors and nurses, social workers, chaplains, allied health professionals and pharmacists. Some teams work closely with existing cancer multidisciplinary teams (MDTs) while others are less well integrated. Quality assurance and clinical governance requirements have an impact on the monitoring of such teams, but so far there is no standardised way of measuring the amount and quality of HPCTs' workload. Trent Hospice Audit Group (THAG) is a multiprofessional research group, which has been developing standards and audit tools for palliative care since the 1990s. These follow a format of structure-process-outcome for standards and measures. We describe a collaborative programme of work with HPCTs that has led to a new set of standards and audit tools. Nine HPCTs participated in three rounds of consultation, piloting and modification of standard statements and tools. The final pack of HPCT quality assurance tools covers: policies and documentation; medical notes review; questionnaires for ward-based staff. The tools measure the HPCT workload and casemix; the views of ward-based staff on the supportive role of the HPCT and the effectiveness of HPCT education programmes, particularly in changing practice. The THAG HPCT quality assurance pack is now available for use in cancer peer review.

Developing a costing framework for palliative care services.

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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.

Evaluation of quality of life according to the nutritional status of the adult palliative patient: systematic review

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Ester Aracil-Lavado

2017-10-01

Full Text Available Objective: To review the scientific literature related to the quality of life according to the nutritional status of the adult palliative patient. Method: Critical analysis of the documents recovered by systematic review. The data were obtained from the direct consultation and access, on the Internet, in the next bibliographic databases in the area of health sciences: MEDLINE (via PubMed, The Cochrane Library, Scopus, Cumulative Index to Nursing and Allied Health Literature (CINHAL, Web of Science and Latin American and Caribbean Literature in Health Sciences (LILACS. The use of the Descriptors “Quality of life”, “Nutritional status” and “Palliative care” were considered appropriate, using the filters: “Humans”, “Adults” and “Comparative Study” or “Clinical Trial”. Date of search: November 2016. Results: After applying the inclusion and exclusion criteria, 4 studies were accepted for review and critical analysis. To evaluate the quality of articles selected for review using the CONSORT questionnaire, scores ranged from 11 to 20 with a maximum score of 25. Conclusions: The nutritional monitoring of the patients was directly related to the improvement of the nutritional status, and corresponded to the increase of the quality of life. It would be desirable to use specific and validated questionnaires to evaluate the quality of life according to the nutritional status that will allow to minimize any type of subjectivity of the patient. Future studies, with an adequate population, would be necessary to clarify the direct relationship between nutritional status and quality of life in palliative patients.

First-Line Nursing Home Managers in Sweden and their Views on Leadership and Palliative Care.

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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.

Pain and quality of life following palliative radiotherapy of bone metastases; Der Einfluss palliativer Strahlentherapie auf Schmerz und Lebensqualitaet bei Patienten mit Knochenmetastasen

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Sauer, N.; Wild, B.; Henningsen, P.; Jakobsen, T. [Klinik fuer Psychosomatische und Allgemeine Klinische Medizin, Univ. Heidelberg (Germany); Leising, D. [Inst. fuer Psychologie, Univ. Wuerzburg (Germany); Treiber, M. [Radiologische Universitaetsklinik, Heidelberg (Germany)

2006-09-15

Pain and quality of life following palliative radiotherapy of bone metastases Background and purpose: palliative irradiation is used to provide pain relief and to increase quality of life. Most studies exclude patients with advanced cancer disease and, therefore, a positive selection results. This prospective clinical study investigates the effect of palliative radiotherapy on pain and quality of life of patients with painful bone metastases. Patients and methods: 263 patients with bone metastases due to advanced cancer were observed with respect to pain and quality of life during a 2-month course of radiotherapy. Missing data were substituted by the LOCF method (last observation carried forward) to prevent a biased reduction of data. Results: radiotherapy resulted in pain relief. In the complete group, pain medication was not increased. Quality of life was not affected positively. Side effects of radiotherapy increased remarkably. Conclusion: Radiotherapy leads to pain relief. However, risks and benefits must be considered critically due to side effects. (orig.)

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

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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.

Quality of life from the perspective of the palliative care patient in a resource-poor community in South Africa.

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Jansen van Rensburg, Jacoba J M; Maree, Johanna E; van Belkum, Corrien

2013-02-01

Quality of life is an ill-defined term, as it means different things to different people. Quality of life has been well researched, especially with respect to people with cancer, but not necessarily from the perspective of the patient, and also, not in Third World, resource-poor countries. The objective of this study was to explore quality of life from the perspective of palliative care patients managed at a palliative care clinic serving a resource-poor community in Tshwane, South Africa. An exploratory, qualitative phenomenological study was conducted. The target population for this study was all patients managed at a palliative care clinic serving a resource-poor community in Tshwane. Self-report data were gathered by means of in-depth interviews. The data were analyzed using a template analysis style as well as content analysis using open coding. Data analysis was done concurrently with data gathering. Data saturation was reached after 10 interviews (n = 10). Three themes arose from the data: factors that had a positive influence on quality of life, factors that had a negative influence on quality of life, and experience of quality of life. Work played the most important role in quality of life whereas only one participant linked symptom control with quality of life. Experiencing symptoms, rejection, and stigmatization had a negative influence on quality of life. Friends and religion played a significant role and added to quality of life. Life was a daily struggle for survival. Poverty was so overwhelming that quality of life was primarily measured in terms of the ability to buy food and other basic commodities.

Kualitas Hidup Pasien Stroke dalam Perawatan Palliative Homecare

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Ulfa N Karim

2017-05-01

Full Text Available Stroke is a neurological deficit multi complex disease that causes physical or mental disability can affect all aspects of an individual's life, including the quality of life of patients. Quality of life related to the welfare of patients and families with the provision of Palliative homecare Phenomenological study was conducted to explore in depth the quality of life of patients in palliative care homecare. Participants in this study with 13 respondents using purposive sampling technique. Themes related to the quality of life is domains includes physical activity, diet, memory and concentration, physical mobility, speech, pain, sleep and rest. Psychological domains include self-image, motivation of life, happiness and sadness. Among other social domains of social change include changes in the social function and the role change. Quality of life domains increased physical activity, diet, mobilization of physical and speech. Quality of life increased in the psychological domains motivation alive, happy feelings. Quality of life increased in the social domains changes in social function. This study shows that the quality of life patients stroke increasing and study recommended importance further research is important and palliative care as an intervention homecare nursing which plays an important role for improving the quality of life stroke patient. This study shows that the quality of life patients stroke increasing and study recommended importance further research is important and palliative care as an intervention homecare nursing which plays an important role for improving the quality of life stroke patient.

Advancing Hospice and Palliative Care Social Work Leadership in Interprofessional Education and Practice.

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Blacker, Susan; Head, Barbara A; Jones, Barbara L; Remke, Stacy S; Supiano, Katherine

2016-01-01

The importance of interprofessional collaboration in achieving high quality outcomes, improving patient quality of life, and decreasing costs has been growing significantly in health care. Palliative care has been viewed as an exemplary model of interprofessional care delivery, yet best practices in both interprofessional education (IPE) and interprofessional practice (IPP) in the field are still developing. So, too, is the leadership of hospice and palliative care social workers within IPE and IPP. Generating evidence regarding best practices that can prepare social work professionals for collaborative practice is essential. Lessons learned from practice experiences of social workers working in hospice and palliative care can inform educational efforts of all professionals. The emergence of interprofessional education and competencies is a development that is relevant to social work practice in this field. Opportunities for hospice and palliative social workers to demonstrate leadership in IPE and IPP are presented in this article.

A team approach in palliative care: enhancing outcomes.

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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.

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

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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

Strange Bedfellows No More: How Integrated Stem-Cell Transplantation and Palliative Care Programs Can Together Improve End-of-Life Care.

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Levine, Deena R; Baker, Justin N; Wolfe, Joanne; Lehmann, Leslie E; Ullrich, Christina

2017-09-01

In the intense, cure-oriented setting of hematopoietic stem-cell transplantation (HSCT), delivery of high-quality palliative and end-of-life care is a unique challenge. Although HSCT affords patients a chance for cure, it carries a significant risk of morbidity and mortality. During HSCT, patients usually experience high symptom burden and a significant decrease in quality of life that can persist for long periods. When morbidity is high and the chance of cure remote, the tendency after HSCT is to continue intensive medical interventions with curative intent. The nature of the complications and overall condition of some patients may render survival an unrealistic goal and, as such, continuation of artificial life-sustaining measures in these patients may prolong suffering and preclude patient and family preparation for end of life. Palliative care focuses on the well-being of patients with life-threatening conditions and their families, irrespective of the goals of care or anticipated outcome. Although not inherently at odds with HSCT, palliative care historically has been rarely offered to HSCT recipients. Recent evidence suggests that HSCT recipients would benefit from collaborative efforts between HSCT and palliative care services, particularly when initiated early in the transplantation course. We review palliative and end-of-life care in HSCT and present models for integrating palliative care into HSCT care. With open communication, respect for roles, and a spirit of collaboration, HSCT and palliative care can effectively join forces to provide high-quality, multidisciplinary care for these highly vulnerable patients and their families.

Bypass laparoscopic procedure for palliation of esophageal cancer.

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Siosaki, Marcos Duarte; Lacerda, Croider Franco; Bertulucci, Paulo Anderson; da Costa Filho, José Orlando; de Oliveira, Antônio Talvane Torres

2013-03-26

Esophageal cancer is a devastating disease with rapidly increasing incidence in Western countries. Dysphagia is the most common complication, causing severe malnutrition and reduced quality of life. A 69-year-old male with persistent esophageal cancer after radiation therapy was subjected to palliative by-pass surgery using a laparoscopic approach. Due to the advanced stage at diagnosis, palliative treatment was a more realistic option. Dysphagia is a most distressing symptom of this disease, causing malnutrition and reducing quality of life. The goal of palliation is to improve swallowing. The most common methods applied are endoscopic stenting, radiation therapy (external or brachytherapy), chemotherapy, yttrium-aluminum-garnet laser rechanneling or endoscopic dilatation. Palliative surgery is rarely proposed due to morbidity and complications. This paper demonstrates an update in the technique proposed by Postlethwait in 1979 for palliation of esophageal cancer. Published by Oxford University Press and JSCR Publishing Ltd. All rights reserved. © The Author 2013.

[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".

How do professionals assess the quality of life of children with advanced cancer receiving palliative care, and what are their recommendations for improvement?

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Avoine-Blondin, Josianne; Parent, Véronique; Fasse, Léonor; Lopez, Clémentine; Humbert, Nago; Duval, Michel; Sultan, Serge

2018-05-08

It is known that information regarding the quality of life of a patient is central to pediatric palliative care. This information allows professionals to adapt the care and support provided to children and their families. Previous studies have documented the major areas to be investigated in order to assess the quality of life, although it is not yet known what operational criteria or piece of information should be used in the context of pediatric palliative care. The present study aims to: 1) Identify signs of quality of life and evaluation methods currently used by professionals to assess the quality of life of children with cancer receiving palliative care. 2) Collect recommendations from professionals to improve the evaluation of quality of life in this context. We selected a qualitative research design and applied an inductive thematic content analysis to the verbal material. Participants included 20 members of the Department of Hematology-Oncology at CHU Sainte-Justine from various professions (e.g. physicians, nurses, psychosocial staff) who had cared for at least one child with cancer receiving palliative care in the last year. Professionals did not have access to pre-established criteria or to a defined procedure to assess the quality of life of children they followed in the context of PPC. They reported basing their assessment on the child's non-verbal cues, relational availability and elements of his/her environment. These cues are typically collected through observation, interpretation and by asking the child, his/her parents, and other members of the care. To improve the assessment of quality of life professionals recommended optimizing interdisciplinary communication, involving the child and the family in the evaluation process, increasing training to palliative care in hematology/oncology, and developing formalized measurement tools. The formulation of explicit criteria to assess the quality of life in this context, along with detailed

Quality of life considered as well-being: views from philosophy and palliative care practice.

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Olthuis, Gert; Dekkers, Wim

2005-01-01

The main measure of quality of life is well-being. The aim of this article is to compare insights about well-being from contemporary philosophy with the practice-related opinions of palliative care professionals. In the first part of the paper two philosophical theories on well-being are introduced: Sumner's theory of authentic happiness and Griffin's theory of prudential perfectionism. The second part presents opinions derived from interviews with 19 professional palliative caregivers. Both the well-being of patients and the well-being of the carers themselves are considered in this empirical exploration. In the third part the attention shifts from the description of "well-being" to prescriptions for the promotion of well-being. Our interview data are analysed in light of the theories of Sumner and Griffin for clues to the promotion of "well-being." The analysis (1) underscores the subject-relativity of well-being, (2) points out that values that are considered important in every life still seem to be relevant (at least in palliative care practice), and (3) shows the importance of living a certain sort of life when aiming to enhance dying patients' well-being.

The cost-effectiveness and cost-utility of high-dose palliative radiotherapy for advanced non-small-cell lung cancer

International Nuclear Information System (INIS)

Coy, Peter; Schaafsma, Joseph; Schofield, John A.

2000-01-01

Purpose: To compute cost-effectiveness/cost-utility (CE/CU) ratios, from the treatment clinic and societal perspectives, for high-dose palliative radiotherapy treatment (RT) for advanced non-small-cell lung cancer (NSCLC) against best supportive care (BSC) as comparator, and thereby demonstrate a method for computing CE/CU ratios when randomized clinical trial (RCT) data cannot be generated. Methods and Materials: Unit cost estimates based on an earlier reported 1989-90 analysis of treatment costs at the Vancouver Island Cancer Centre, Victoria, British Columbia, Canada, are updated to 1997-1998 and then used to compute the incremental cost of an average dose of high-dose palliative RT. The incremental number of life days and quality-adjusted life days (QALDs) attributable to treatment are from earlier reported regression analyses of the survival and quality-of-life data from patients who enrolled prospectively in a lung cancer management cost-effectiveness study at the clinic over a 2-year period from 1990 to 1992. Results: The baseline CE and CU ratios are $9245 Cdn per life year (LY) and $12,836 per quality-adjusted life year (QALY), respectively, from the clinic perspective; and $12,253/LY and $17,012/QALY, respectively, from the societal perspective. Multivariate sensitivity analysis for the CE ratio produces a range of $5513-28,270/LY from the clinic perspective, and $7307-37,465/LY from the societal perspective. Similar calculations for the CU ratio produce a range of $7205-37,134/QALY from the clinic perspective, and $9550-49,213/QALY from the societal perspective. Conclusion: The cost effectiveness and cost utility of high-dose palliative RT for advanced NSCLC compares favorably with the cost effectiveness of other forms of treatment for NSCLC, of treatments of other forms of cancer, and of many other commonly used medical interventions; and lies within the US $50,000/QALY benchmark often cited for cost-effective care

Assessment of Cancer-Related Fatigue, Pain, and Quality of Life in Cancer Patients at Palliative Care Team Referral: A Multicenter Observational Study (JORTC PAL-09).

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Iwase, Satoru; Kawaguchi, Takashi; Tokoro, Akihiro; Yamada, Kimito; Kanai, Yoshiaki; Matsuda, Yoshinobu; Kashiwaya, Yuko; Okuma, Kae; Inada, Shuji; Ariyoshi, Keisuke; Miyaji, Tempei; Azuma, Kanako; Ishiki, Hiroto; Unezaki, Sakae; Yamaguchi, Takuhiro

2015-01-01

Cancer-related fatigue greatly influences quality of life in cancer patients; however, no specific treatments have been established for cancer-related fatigue, and at present, no medication has been approved in Japan. Systematic research using patient-reported outcome to examine symptoms, particularly fatigue, has not been conducted in palliative care settings in Japan. The objective was to evaluate fatigue, pain, and quality of life in cancer patients at the point of intervention by palliative care teams. Patients who were referred to palliative care teams at three institutions and met the inclusion criteria were invited to complete the Brief Fatigue Inventory, Brief Pain Inventory, and European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire-Core 15-Palliative. Of 183 patients recruited, the majority (85.8%) were diagnosed with recurrence or metastasis. The largest group (42.6%) comprised lung cancer patients, of whom 67.2% had an Eastern Cooperative Oncology Group Performance Status of 0-1. The mean value for global health status/quality of life was 41.4, and the highest mean European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire-Core 15-Palliative symptom item score was for pain (51.0). The mean global fatigue score was 4.1, and 9.8%, 30.6%, 38.7%, and 20.8% of patients' fatigue severity was classified as none (score 0), mild (1-3), moderate (4-6), and severe (7-10), respectively. Cancer-related fatigue, considered to occur more frequently in cancer patients, was successfully assessed using patient-reported outcomes with the Brief Fatigue Inventory for the first time in Japan. Results suggested that fatigue is potentially as problematic as pain, which is the main reason for palliative care.

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

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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.

Practice and documentation of palliative sedation: a quality improvement initiative

Science.gov (United States)

McKinnon, M.; Azevedo, C.; Bush, S.H.; Lawlor, P.; Pereira, J.

2014-01-01

Background Palliative sedation (ps), the continuous use of sedating doses of medication to intentionally reduce consciousness and relieve refractory symptoms at end of life, is ethically acceptable if administered according to standards of best practice. Procedural guidelines outlining the appropriate use of ps and the need for rigorous documentation have been developed. As a quality improvement strategy, we audited the practice and documentation of ps on our palliative care unit (pcu). Methods A pharmacy database search of admissions in 2008 identified, for a subsequent chart review, patients who had received either a continuous infusion of midazolam (≥10 mg/24 h), regular parenteral dosing of methotrimeprazine (≥75 mg daily), or regular phenobarbital. Documentation of the decision-making process, consent, and medication use was collected using a data extraction form based on current international ps standards. Results Interpretation and comparison of data were difficult because of an apparent lack of a consistent operational definition of ps. Patient records had no specific documentation in relation to ps initiation, to clearly identified refractory symptoms, and to informed consent in 60 (64.5%), 43 (46.2%), and 38 (40.9%) charts respectively. Variation in the medications used was marked: 54 patients (58%) were started on a single agent and 39 (42%), on multiple agents. The 40 patients (43%) started on midazolam alone received a mean daily dose of 21.4 mg (standard deviation: 24.6 mg). Conclusions The lack of documentation and standardized practice of ps on our pcu has resulted in a quality improvement program to address those gaps. They also highlight the importance of conducting research and developing clinical guidelines in this area. PMID:24764700

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

Health-related quality-of-life outcome measures in paediatric palliative care: A systematic review of psychometric properties and feasibility of use

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Coombes, Lucy H; Wiseman, Theresa; Lucas, Grace; Sangha, Amrit; Murtagh, Fliss EM

2016-01-01

Background: The number of children worldwide requiring palliative care services is increasing due to advances in medical care and technology. The use of outcome measures is important to improve the quality and effectiveness of care. Aim: To systematically identify health-related quality-of-life outcome measures that could be used in paediatric palliative care and examine their feasibility of use and psychometric properties. Design: A systematic literature review and analysis of psychometric properties. Data sources: PsychInfo, Medline and EMBASE were searched from 1 January 1990 to 10 December 2014. Hand searches of the reference list of included studies and relevant reviews were also performed. Results: From 3460 articles, 125 papers were selected for full-text assessment. A total of 41 articles met the eligibility criteria and examined the psychometric properties of 22 health-related quality-of-life measures. Evidence was limited as at least half of the information on psychometric properties per instrument was missing. Measurement error was not analysed in any of the included articles and responsiveness was only analysed in one study. The methodological quality of included studies varied greatly. Conclusion: There is currently no ‘ideal’ outcome assessment measure for use in paediatric palliative care. The domains of generic health-related quality-of-life measures are not relevant to all children receiving palliative care and some domains within disease-specific measures are only relevant for that specific population. Potential solutions include adapting an existing measure or developing more individualized patient-centred outcome and experience measures. Either way, it is important to continue work on outcome measurement in this field. PMID:27247087

Paediatric Palliative Care in Resource-Poor Countries

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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.

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

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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.

Palliative chemotherapy and targeted therapies for esophageal and gastroesophageal junction cancer.

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Janmaat, Vincent T; Steyerberg, Ewout W; van der Gaast, Ate; Mathijssen, Ron Hj; Bruno, Marco J; Peppelenbosch, Maikel P; Kuipers, Ernst J; Spaander, Manon Cw

2017-11-28

Almost half of people with esophageal or gastroesophageal junction cancer have metastatic disease at the time of diagnosis. Chemotherapy and targeted therapies are increasingly used with a palliative intent to control tumor growth, improve quality of life, and prolong survival. To date, and with the exception of ramucirumab, evidence for the efficacy of palliative treatments for esophageal and gastroesophageal cancer is lacking. To assess the effects of cytostatic or targeted therapy for treating esophageal or gastroesophageal junction cancer with palliative intent. We searched the Cochrane Central Register of Controlled Trials (CENTRAL), MEDLINE, Embase, the Web of Science, PubMed Publisher, Google Scholar, and trial registries up to 13 May 2015, and we handsearched the reference lists of studies. We did not restrict the search to publications in English. Additional searches were run in September 2017 prior to publication, and they are listed in the 'Studies awaiting assessment' section. We included randomized controlled trials (RCTs) on palliative chemotherapy and/or targeted therapy versus best supportive care or control in people with esophageal or gastroesophageal junction cancer. Two authors independently extracted data. We assessed the quality and risk of bias of eligible studies according to the Cochrane Handbook for Systematic Reviews of Interventions. We calculated pooled estimates of effect using an inverse variance random-effects model for meta-analysis. We identified 41 RCTs with 11,853 participants for inclusion in the review as well as 49 ongoing studies. For the main comparison of adding a cytostatic and/or targeted agent to a control arm, we included 11 studies with 1347 participants. This analysis demonstrated an increase in overall survival in favor of the arm with an additional cytostatic or targeted therapeutic agent with a hazard ratio (HR) of 0.75 (95% confidence interval (CI) 0.68 to 0.84, high-quality evidence). The median increased

Palliative home care intervention to improve the quality of life of women with advanced breast cancer

International Nuclear Information System (INIS)

Figueredo Villa, Katiuska

2013-01-01

The quality of life is affected frequently observed in women with advanced breast cancer and is considered a leading indicator of effectiveness of palliative care. A descriptive, quasi-experimental study is presented ex-ante / ex-post, by applying open-ended interviews to explore the effects on the processes of adaptation of each patient and a self-administrable scale identified specific dimensions of quality of life, satisfaction with care and overall quality of life. The intervention was performed palliative home care to 52 women, according to the damages identified in the baseline diagnosis. The overall strategy included four steps: clinical and socio-demographic characterization of women; identification of the effects on the processes of adaptation by the theoretical model of Roy and dimensions of quality of life frequently affected, to design individually oriented actions on the drive shaft of Nursing Interventions Classification and evaluation of results intervention. The dimensions achieved higher frequency of involvement were: behavior, physical symptoms, pain interference and leisure activities, social life and family. Data were analyzed with qualitative methodologies and uni and multivariate statistical processing. After the intervention favorable changes in adaptive processes and dimensions of quality of life were observed; well as in the assessment of overall satisfaction with life. It was interesting that the dimensions of satisfaction assessed at the end of the intervention obtained an unfavorable assessment, outcome associated with sociodemographic variables. (author)

Palliative care in amyotrophic lateral sclerosis: a review of current international guidelines and initiatives.

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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.

Home-based specialized palliative care in patients with advanced cancer

DEFF Research Database (Denmark)

Nordly, Mie; Vadstrup, Eva Soelberg; Sjøgren, Per

2016-01-01

OBJECTIVE: Due to an urgent need for specialized palliative care (SPC) for patients with advanced cancer, an overview of available information on organization and outcomes of home-based SPC would be valuable. Our systematic review aims to give an overview of available information...... on the organization and outcomes of home-based SPC for patients with advanced cancer. Outcomes related to place of death, survival time, quality of life, performance status, and symptom management are included. METHOD: A PICO process search strategy consisting of terms related to cancer, palliation, and home care...... for patients with advanced cancer, resulting in poor information and a lack of evidence. Generally, home-based SPC seems to have some positive effect on pain and dyspnea, but more high-quality studies are required....

Increasing the Number of Outpatients Receiving Spiritual Assessment: A Pain and Palliative Care Service Quality Improvement Project.

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Gomez-Castillo, Blanca J; Hirsch, Rosemarie; Groninger, Hunter; Baker, Karen; Cheng, M Jennifer; Phillips, Jayne; Pollack, John; Berger, Ann M

2015-11-01

Spirituality is a patient need that requires special attention from the Pain and Palliative Care Service team. This quality improvement project aimed to provide spiritual assessment for all new outpatients with serious life-altering illnesses. Percentage of new outpatients receiving spiritual assessment (Faith, Importance/Influence, Community, Address/Action in care, psychosocial evaluation, chaplain consults) at baseline and postinterventions. Interventions included encouraging clinicians to incorporate adequate spiritual assessment into patient care and implementing chaplain covisits for all initial outpatient visits. The quality improvement interventions increased spiritual assessment (baseline vs. postinterventions): chaplain covisits (25.5% vs. 50%), Faith, Importance/Influence, Community, Address/Action in care completion (49% vs. 72%), and psychosocial evaluation (89% vs. 94%). Improved spiritual assessment in an outpatient palliative care clinic setting can occur with a multidisciplinary approach. This project also identifies data collection and documentation processes that can be targeted for improvement. Published by Elsevier Inc.

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.

Pain palliation therapy of bone metastases: palliative or curative?

International Nuclear Information System (INIS)

Fischer, M.

2007-01-01

In Germany the incidence of breast cancer is about 85 and of prostate cancer about 50 new patients per 100.000 inhabitants/year. In about 80% of prostate cancer patients and 75% of breast cancer patients bone metastases are observed in autopsy. Most of these patients develop severe pain syndrome from bone metastases reducing quality of life during life time. Therapy of these patients should aim at adding life to the years not years to their life. The knowledge of metastatic cell biology, of cell-cell interaction and of tumor-cell, tumor cell-skeleton interaction may modify the therapeutic procedure. Already in 1940/41, Pecher treated a patient suffering from painful prostate cancer bone metastases administering 296 MBq 89 Strontium chloride. About 10 years later, Friedell introduced 32 Phosphorus for treatment of bone metastases from breast cancer. Today in Europe 3 radionuclides are approved for pain palliation therapy as shown in Table.1. Indication: - pain palliation therapy of bone metastases from prostate cancer ( 89 Sr and 186 Re); - pain palliation of all osteoblastic metastases independent from primary tumors ( 153 Sm). Contraindications: - pregnant and lactating females - myelosuppression ( 3 granulocytes; 3 platelets); - impaired renal function (urea >12 mmol/l; creatinine > 150 mmol/l) - incontinence; - acute or chronic spinal cord compression and/or brain metastases causing neurological symptoms; - disseminated intravascular coagulopathy. The recommended activities per treatment are: 89 Sr 150 MBq, 186 Re 1.295 MBq, and 153 Sm 37 MBq/kg BW. Shortly (6-8 weeks) prior to radionuclide therapy for pain palliation no high dose chemotherapy or large field radiation therapy should be performed. Stopping unlabelled bisphosphonate therapy prior to pain palliation therapy is not necessary. This radionuclide therapy may be repeated several time, the interval between tracer administration depends on blood cell count rate. The recommended intervals are for 89 Sr

Palliative radiotherapy for cervical carcinoma, a systematic review

International Nuclear Information System (INIS)

Lonkhuijzen, Luc van; Thomas, Gillian

2011-01-01

Purpose: Worldwide, particularly in developing countries, many women present with advanced stage cervical cancer for which palliative radiotherapy is the treatment of choice or may be the only available treatment. The purpose of this study was to determine from the literature the optimal palliative radiation scheme for the treatment of advanced cervical cancer. Design: A systematic literature review up to January 2010 was performed in Medline, Embase, the Cochrane database, CinHL and Google Scholar using a combination of synonyms for: cervical cancer, palliative treatment and radiation therapy. No limitations were applied for language or study types. For included papers data were extracted and described. Results: Only eight papers were identified and none compared the results of different fractionation schemes. Most used observational retrospective study design with considerable sources of bias. No studies used validated endpoints for symptom relief nor did they include measures of the quality of life. Several papers described the experience with single or multiple monthly 10 Gy doses or with a higher total dose delivered in 2-4 fractions within 48 h to 1 week. Studies report varying amounts of relief from bleeding. The effect on other symptoms such as pain and discharge is not evaluable. Acute and late toxicity is poorly documented. Conclusion: There is a dearth of information in the current literature to guide selection of an optimal palliative radiation schedule for treatment of patients with advanced cervical cancer. Based on this review and information from other solid tumors, there is no evidence to support the common belief that better and longer palliation is achieved with a high dose delivered in multiple smaller fractions. There is a clear need for comparative studies of different radiation fractionation schedules in order to identify an optimal palliative radiation scheme. These studies require the use of validated endpoints to measure specific symptom

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...

Awareness of palliative care among diploma nursing students

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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.

Palliative radiotherapy in developing countries

International Nuclear Information System (INIS)

Allen, B.J.

2010-01-01

Full text: The International Agency for Research on Cancer predicts that cancer incidence in developing countries will increase dramatically in the first two decades of this millennium. Already some 80% of cancer patients in developing countries present with incurable disease. [n many cases pain is a severe problem and palliation is needed to improve quality of life as well as extending survival. This paper will consider the physical and clinical aspects of palliative radiotherapy (PRT), choice of radiation modality, alternative approaches to imaging and therapy and cost-benefit considerations. The potential benefits of a dedicated palliative centre include lower cost and therefore more centres, enabling more patients access to regional palliative care. Whilst there is an obvious need for palliative radiotherapy, simple curative treatments could also be managed. C060 radiotherapy has important advantages in developing countries, because of the higher initial cost of a linear accelerator, as well as the need for reliable power supply and the level of skill required by linac technicians and physicists. The beam characteristics of both C060 units and low energy linacs are compared and both are found to be acceptable for palliation. The concept of telemedicine is also discussed, using mobile phones and internet communication to allow rural clinics to receive support from specialists based in the cities, to send images for remote diagnosis and remote dose planning for radiotherapy. (author)

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

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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.

Protocol: Evaluating the impact of a nation-wide train-the-trainer educational initiative to enhance the quality of palliative care for children with cancer.

Science.gov (United States)

Widger, Kimberley; Friedrichsdorf, Stefan; Wolfe, Joanne; Liben, Stephen; Pole, Jason D; Bouffet, Eric; Greenberg, Mark; Husain, Amna; Siden, Harold; Whitlock, James A; Rapoport, Adam

2016-01-27

There are identified gaps in the care provided to children with cancer based on the self-identified lack of education for health care professionals in pediatric palliative care and in the perceptions of bereaved parents who describe suboptimal care. In order to address these gaps, we will implement and evaluate a national roll-out of Education in Palliative and End-of-Life Care for Pediatrics (EPEC®-Pediatrics), using a 'Train-the-Trainer' model. In this study we are using a pre- post-test design and an integrated knowledge translation approach to assess the impact of the educational roll-out in four areas: 1) self-assessed knowledge of health professionals; 2) knowledge dissemination outcomes; 3) practice change outcomes; and 4) quality of palliative care. The quality of palliative care will be assessed using data from three sources: a) parent and child surveys about symptoms, quality of life and care provided; b) health record reviews of deceased patients; and c) bereaved parent surveys about end-of-life and bereavement care. After being trained in EPEC®-Pediatrics, 'Master Facilitators' will train 'Regional Teams' affiliated with 16 pediatric oncology programs in Canada. Each team will consist of three to five health professionals representing oncology, palliative care, and the community. Each team member will complete online modules and attend one of two face-to-face conferences, where they will receive training and materials to teach the EPEC®-Pediatrics curriculum to 'End-Users' in their region. Regional Teams will also choose a Tailored Implementation of Practice Standards (TIPS) Kit to guide implementation of a quality improvement project in their region; support will be provided via quarterly meetings with Co-Leads and via a listserv and webinars with other teams. Through this study we aim to raise the level of pediatric palliative care education amongst health care professionals in Canada. Our study will be a significant step forward in evaluation of

Building nursing capacity for palliative care at a Jesuit Catholic University: A model program

Directory of Open Access Journals (Sweden)

Eileen R. O’Shea

2017-01-01

Full Text Available The average life span is increasing, due to vast advancements in social conditions, public health, and medical care. Globally, those living with chronic and serious medical conditions can benefit from palliative care services. Yet, the workforce is insufficient to support the demand. This case study describes efforts made by one Jesuit Catholic University to build nursing capacity and to promote access to high quality, compassionate palliative healthcare.

Dental expression and role in palliative treatment

Directory of Open Access Journals (Sweden)

Rajiv Saini

2009-01-01

Full Text Available World Health Organization defines palliative care as the active total care of patients whose disease is not responding to curative treatment. Palliative care for the terminally ill is based on a multidimensional approach to provide whole-person comfort care while maintaining optimal function; dental care plays an important role in this multidisciplinary approach. The aim of the present study is to review significance of dentist′s role to determine whether mouth care was effectively assessed and implemented in the palliative care setting. The oral problems experienced by the hospice head and neck patient clearly affect the quality of his or her remaining life. Dentist plays an essential role in palliative care by the maintenance of oral hygiene; dental examination may identify and cure opportunistic infections and dental disease like caries, periodontal disease, oral mucosal problems or prosthetic requirement. Oral care may reduce not only the microbial load of the mouth but the risk for pain and oral infection as well. This multidisciplinary approach to palliative care, including a dentist, may reduce the oral debilities that influence the patient′s ability to speak, eat or swallow. This review highlighted that without effective assessment of the mouth, the appropriate implementation of care will not be delivered. Palliative dental care has been fundamental in management of patients with active, progressive, far-advanced disease in which the oral cavity has been compromised either by the disease directly or by its treatment; the focus of care is quality of life.

Quality-of-Life Assessment After Palliative Interventions to Manage Malignant Ureteral Obstruction

International Nuclear Information System (INIS)

Monsky, Wayne Laurence; Molloy, Chris; Jin, Bedro; Nolan, Timothy; Fernando, Dayantha; Loh, Shaun; Li, Chin-Shang

2013-01-01

Purpose: Malignancies may cause urinary tract obstruction, which is often relieved with placement of a percutaneous nephrostomy tube, an internal double J nephro-ureteric stent (double J), or an internal external nephroureteral stent (NUS). We evaluated the affect of these palliative interventions on quality of life (QoL) using previously validated surveys. Methods: Forty-six patients with malignancy related ureteral obstruction received nephrostomy tubes (n = 16), double J stents (n = 15), or NUS (n = 15) as determined by a multidisciplinary team. QoL surveys were administered at 7, 30, and 90 days after the palliative procedure to evaluate symptoms and physical, social, functional, and emotional well-being. Number of related procedures, fluoroscopy time, and complications were documented. Kruskal–Wallis and Friedman’s test were used to compare patients at 7, 30, and 90 days. Spearman’s rank correlation coefficient was used to assess correlations between clinical outcomes/symptoms and QoL. Results: Responses to QoL surveys were not significantly different for patients receiving nephrostomies, double J stents, or NUS at 7, 30, or 90 days. At 30 and 90 days there were significantly higher reported urinary symptoms and pain in those receiving double J stents compared with nephrostomies (P = 0.0035 and P = 0.0189, respectively). Significantly greater fluoroscopy time was needed for double J stent–related procedures (P = 0.0054). Nephrostomy tubes were associated with more frequent minor complications requiring additional changes. Conclusion: QoL was not significantly different. However, a greater incidence of pain in those receiving double J stents and more frequent tube changes in those with nephrostomy tubes should be considered when choosing palliative approaches

Quality-of-Life Assessment After Palliative Interventions to Manage Malignant Ureteral Obstruction

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Monsky, Wayne Laurence, E-mail: wemonsky@msn.com [University of Washington Medical Center, Department of Radiology (United States); Molloy, Chris; Jin, Bedro [University of California, Davis, School of Medicine (United States); Nolan, Timothy; Fernando, Dayantha; Loh, Shaun [University of California Davis Medical Center, Department of Radiology (United States); Li, Chin-Shang [University of California, Davis, Division of Biostatistics, Department of Public Health Sciences (Canada)

2013-10-15

Purpose: Malignancies may cause urinary tract obstruction, which is often relieved with placement of a percutaneous nephrostomy tube, an internal double J nephro-ureteric stent (double J), or an internal external nephroureteral stent (NUS). We evaluated the affect of these palliative interventions on quality of life (QoL) using previously validated surveys. Methods: Forty-six patients with malignancy related ureteral obstruction received nephrostomy tubes (n = 16), double J stents (n = 15), or NUS (n = 15) as determined by a multidisciplinary team. QoL surveys were administered at 7, 30, and 90 days after the palliative procedure to evaluate symptoms and physical, social, functional, and emotional well-being. Number of related procedures, fluoroscopy time, and complications were documented. Kruskal-Wallis and Friedman's test were used to compare patients at 7, 30, and 90 days. Spearman's rank correlation coefficient was used to assess correlations between clinical outcomes/symptoms and QoL. Results: Responses to QoL surveys were not significantly different for patients receiving nephrostomies, double J stents, or NUS at 7, 30, or 90 days. At 30 and 90 days there were significantly higher reported urinary symptoms and pain in those receiving double J stents compared with nephrostomies (P = 0.0035 and P = 0.0189, respectively). Significantly greater fluoroscopy time was needed for double J stent-related procedures (P = 0.0054). Nephrostomy tubes were associated with more frequent minor complications requiring additional changes. Conclusion: QoL was not significantly different. However, a greater incidence of pain in those receiving double J stents and more frequent tube changes in those with nephrostomy tubes should be considered when choosing palliative approaches.

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

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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

Endoscopic Palliation for Pancreatic Cancer

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Mihir Bakhru

2011-04-01

Full Text Available Pancreatic cancer is devastating due to its poor prognosis. Patients require a multidisciplinary approach to guide available options, mostly palliative because of advanced disease at presentation. Palliation including relief of biliary obstruction, gastric outlet obstruction, and cancer-related pain has become the focus in patients whose cancer is determined to be unresectable. Endoscopic stenting for biliary obstruction is an option for drainage to avoid the complications including jaundice, pruritus, infection, liver dysfunction and eventually failure. Enteral stents can relieve gastric obstruction and allow patients to resume oral intake. Pain is difficult to treat in cancer patients and endoscopic procedures such as pancreatic stenting and celiac plexus neurolysis can provide relief. The objective of endoscopic palliation is to primarily address symptoms as well improve quality of life.

Consensus on quality indicators to assess the organisation of palliative cancer and dementia care applicable across national healthcare systems and selected by international experts.

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van Riet Paap, Jasper; Vernooij-Dassen, Myrra; Dröes, Rose-Marie; Radbruch, Lukas; Vissers, Kris; Engels, Yvonne

2014-09-17

Large numbers of vulnerable patients are in need of palliative cancer and dementia care. However, a wide gap exists between the knowledge of best practices in palliative care and their use in everyday clinical practice. As part of a European policy improvement program, quality indicators (QIs) have been developed to monitor and improve the organisation of palliative care for patients with cancer and those with dementia in various settings in different European countries. A multidisciplinary, international panel of professionals participated in a modified RAND Delphi procedure to compose a set of palliative care QIs based on existing sets of QIs on the organisation of palliative care. Panellists participated in three written rounds, one feedback round and one meeting. The panel's median votes were used to identify the final set of QIs. The Delphi procedure resulted in 23 useful QIs. These QIs represent key elements of the organisation of good clinical practice, such as the availability of palliative care teams, the availability of special facilities to provide palliative care for patients and their relatives, and the presence of educational interventions for professionals. The final set also includes QIs that are related to the process of palliative care, such as documentation of pain and other symptoms, communication with patients in need of palliative care and their relatives, and end-of-life decisions. International experts selected a set of 23 QIs for the organisation of palliative care. Although we particularly focused on the organisation of cancer and dementia palliative care, most QIs are generic and are applicable for other types of diseases as well.

Integrating Palliative Care Services in Ambulatory Oncology: An Application of the Edmonton Symptom Assessment System.

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Rauenzahn, Sherri L; Schmidt, Susanne; Aduba, Ifeoma O; Jones, Jessica T; Ali, Nazneen; Tenner, Laura L

2017-04-01

Research in palliative care demonstrates improvements in overall survival, quality of life, symptom management, and reductions in the cost of care. Despite the American Society of Clinical Oncology recommendation for early concurrent palliative care in patients with advanced cancer and high symptom burden, integrating palliative services is challenging. Our aims were to quantitatively describe the palliative referral rates and symptom burden in a South Texas cancer center and establish a palliative referral system by implementing the Edmonton Symptom Assessment Scale (ESAS). As part of our Plan-Do-Study-Act process, all staff received an educational overview of the ESAS tool and consultation ordering process. The ESAS form was then implemented across five ambulatory oncology clinics to assess symptom burden and changes therein longitudinally. Referral rates and symptom assessment scores were tracked as metrics for quality improvement. On average, one patient per month was referred before implementation of the intervention compared with 10 patients per month after implementation across all clinics. In five sample clinics, 607 patients completed the initial assessment, and 430 follow-up forms were collected over 5 months, resulting in a total of 1,037 scores collected in REDCap. The mean ESAS score for initial patient visits was 20.0 (standard deviation, 18.1), and referred patients had an initial mean score of 39.0 (standard deviation, 19.0). This project highlights the low palliative care consultation rate, high symptom burden of oncology patients, and underuse of services by oncologists despite improvements with the introduction of a symptom assessment form and referral system.

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

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

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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.

Clinical observation on scores of anxiety, depression and quality of life for advanced gastrointestinal carcinoma patients with palliation intervention therapy

International Nuclear Information System (INIS)

Chen Yue; Jiang Tinghui; Jiang Yongxing; Sun Xianjun

2007-01-01

Objective: To evaluate the influence of palliative intervention therapy on advanced gastrointestinal carcinoma patients with depression and anxiety before and after the treatment. Methods: 56 advanced gastrointestinal carcinoma patients were selected and treated with intra-arterial perfusion chemotherapy or intra-arterial perfusion chemotherapy with embolization. Curative effects were assessed with the SDS, SAS and FACT-G before and after the treatment. In addition, all patients took self-assessment with SCL-90, comparing with the Chinese norms. Results: SCL-90 scores including the somatization agent, depression agent, and anxiety agent scores of the advanced gastrointestinal carcinoma were higher than those of Chinese norms, with significant difference (P<0.05). After palliative intervention therapy, the scores of SDS and SAS were lower than those before the palliative intervention therapy with significant difference (P< 0.05); and furthermore with an obvious improvement in the scores of FACT-G (P<0.05). Conclusion: Palliative intervention therapy for advanced gastrointestinal carcinoma patients can improve the complaints of depression anxiety and quality of life. (authors)

Geritalk: Communication Skills Training for Geriatrics and Palliative Medicine Fellows

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Kelley, Amy S.; Back, Anthony L.; Arnold, Robert M.; Goldberg, Gabrielle R.; Lim, Betty B.; Litrivis, Evgenia; Smith, Cardinale B.; O’Neill, Lynn B.

2011-01-01

Expert communication is essential to high quality care for older patients with serious illness. While the importance of communication skills is widely recognized, formal curricula for teaching communication skills to geriatrics and palliative medicine fellows is often inadequate or unavailable. We drew upon the educational principles and format of an evidence-based, interactive teaching method, to develop an intensive communication skills training course designed specifically to address the common communication challenges faced by geriatrics and palliative medicine fellows. The 2-day retreat, held away from the hospital environment, included large-group overview presentations, small-group communication skills practice, and development of future skills practice commitment. Faculty received in-depth training in small-group facilitation techniques prior to the course. Geriatrics and palliative medicine fellows were recruited to participate in the course and 100% (n=18) enrolled. Overall satisfaction with the course was very high (mean 4.8 on 5-point scale). Compared to before the course, fellows reported an increase in self-assessed preparedness for specific communication challenges (mean increase 1.4 on 5-point scale, pcommunication skills program, tailored to the specific needs of geriatrics and palliative medicine fellows, improved fellows’ self-assessed preparedness for challenging communication tasks and provided a model for ongoing deliberate practice of communication skills. PMID:22211768

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...

Quality of life, psychological burden, needs, and satisfaction during specialized inpatient palliative care in family caregivers of advanced cancer patients.

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Ullrich, Anneke; Ascherfeld, Lilian; Marx, Gabriella; Bokemeyer, Carsten; Bergelt, Corinna; Oechsle, Karin

2017-05-10

This pilot study aimed to investigate quality of life, psychological burden, unmet needs, and care satisfaction in family caregivers of advanced cancer patients (FCs) during specialized inpatient palliative care (SIPC) and to test feasibility and acceptance of the questionnaire survey. During a period of 12 weeks, FCs were recruited consecutively within 72 h after the patient's admission. They completed validated scales on several outcomes: quality of life (SF-8), distress (DT), anxiety (GAD-7), depression (PHQ-9), supportive needs (FIN), palliative care outcome (POS), and satisfaction with care (FAMCARE-2). We used non-parametric tests, t-tests and correlation analyses to address our research questions. FCs showed high study commitment: 74 FCs were asked to participate whereof 54 (73%) agreed and 51 (69%) returned the questionnaire. Except for "bodily pain", FCs' quality of life (SF-8) was impaired in all subscales. Most FCs (96%) reported clinically significant own distress (DT), with sadness, sorrows and exhaustion being the most distressing problems (80-83%). Moderate to severe anxiety (GAD-7) and depression (PHQ-9) were prevalent in 43% and 41% of FCs, respectively. FCs scored a mean number of 16.3 of 20 needs (FIN) as very or extremely important (SD 3.3), 20% of needs were unmet in >50% of FCs. The mean POS score assessed by FCs was 16.6 (SD 5.0) and satisfaction (FAMCARE-2) was high (73.4; SD 8.3). This pilot study demonstrated feasibility of the questionnaire survey and showed relevant psychosocial burden and unmet needs in FCs during SIPC. However, FCs' satisfaction with SIPC seemed to be high. A current multicenter study evaluates these findings longitudinally in a large cohort of FCs.

Need for palliative care for neurological diseases.

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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.

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

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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.

Palliative care and pediatric surgical oncology.

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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.

The impact of specialized palliative care on cancer patients' health-related quality of life: a systematic review and meta-analysis.

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Kassianos, Angelos P; Ioannou, Myria; Koutsantoni, Marianna; Charalambous, Haris

2018-01-01

Specialized palliative care (SPC) is currently underutilized or provided late in cancer care. The aim of this systematic review and meta-analysis is to critically evaluate the impact of SPC on patients' health-related quality of life (HRQoL). Five databases were searched through June 2016. Randomized controlled trials (RCTs) and prospective studies using a pre- and post- assessment of HRQoL were included. The PRISMA reporting statement was followed. Criteria from available checklists were used to evaluate the studies' quality. A meta-analysis followed using random-effect models separately for RCTs and non-RCTs. Eleven studies including five RCTs and 2939 cancer patients published between 2001 and 2014 were identified. There was improved HRQoL in patients with cancer following SPC especially in symptoms like pain, nausea, and fatigue as well as improvement of physical and psychological functioning. Less or no improvements were observed in social and spiritual domains. In general, studies of inpatients showed a larger benefit from SPC than studies of outpatients whereas patients' age and treatment duration did not moderate the impact of SPC. Methodological shortcomings of included studies include high attrition rates, low precision, and power and poor reporting of control procedures. The methodological problems and publication bias call for higher-quality studies to be designed, funded, and published. However, there is a clear message that SPC is multi-disciplinary and aims at palliation of symptoms and burden in line with current recommendations.

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 ...

Paediatric palliative care: recommendations for treatment of symptoms in the Netherlands

NARCIS (Netherlands)

Knops, Rutger R. G.; Kremer, Leontien C. M.; Verhagen, A. A. Eduard; Beek, L.; Fock, J. M.; Hartvelt-Faber, G.; Mensink, M. O.; Michiels, E. C. M.; Schouten-van Meeteren, A. Y. N.; Uitdehaag, M. J.; Venmans, L. M. A. J.; Verhagen, A. A. E.; de Weerd, W.

2015-01-01

Children dying of a life threatening disease suffer a great deal at the end of life. Symptom control is often unsatisfactory, partly because many caregivers are simply not familiar with paediatric palliative care. To ensure that a child with a life-threatening condition receives high quality

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

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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.

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.

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.

Healing ministry and palliative care in Christianity.

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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.

Prospective evaluation of quality of life effects in patients undergoing palliative radiotherapy for brain metastases

International Nuclear Information System (INIS)

Steinmann, Diana; Gerstein, Johanna; Gharbi, Nadine; Hagg, Juliane; Hipp, Matthias; Kleff, Irmgard; Müller, Axel; Schäfer, Christof; Schleicher, Ursula; Sehlen, Susanne; Theodorou, Marilena; Paelecke-Habermann, Yvonne; Wypior, Hans-Joachim; Zehentmayr, Franz; Oorschot, Birgitt van; Vordermark, Dirk; Geinitz, Hans; Aschoff, Raimund; Bayerl, Anja; Bölling, Tobias; Bosch, Elisabeth; Bruns, Frank; Eichenseder-Seiss, Ute

2012-01-01

Recently published results of quality of life (QoL) studies indicated different outcomes of palliative radiotherapy for brain metastases. This prospective multi-center QoL study of patients with brain metastases was designed to investigate which QoL domains improve or worsen after palliative radiotherapy and which might provide prognostic information. From 01/2007-01/2009, n=151 patients with previously untreated brain metastases were recruited at 14 centers in Germany and Austria. Most patients (82 %) received whole-brain radiotherapy. QoL was measured with the EORTC-QLQ-C15-PAL and brain module BN20 before the start of radiotherapy and after 3 months. At 3 months, 88/142 (62 %) survived. Nine patients were not able to be followed up. 62 patients (70.5 % of 3-month survivors) completed the second set of questionnaires. Three months after the start of radiotherapy QoL deteriorated significantly in the areas of global QoL, physical function, fatigue, nausea, pain, appetite loss, hair loss, drowsiness, motor dysfunction, communication deficit and weakness of legs. Although the use of corticosteroid at 3 months could be reduced compared to pre-treatment (63 % vs. 37 %), the score for headaches remained stable. Initial QoL at the start of treatment was better in those alive than in those deceased at 3 months, significantly for physical function, motor dysfunction and the symptom scales fatigue, pain, appetite loss and weakness of legs. In a multivariate model, lower Karnofsky performance score, higher age and higher pain ratings before radiotherapy were prognostic of 3-month survival. Moderate deterioration in several QoL domains was predominantly observed three months after start of palliative radiotherapy for brain metastases. Future studies will need to address the individual subjective benefit or burden from such treatment. Baseline QoL scores before palliative radiotherapy for brain metastases may contain prognostic information

Professional competence and palliative care: an ethical perspective.

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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.

Geritalk: communication skills training for geriatric and palliative medicine fellows.

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Kelley, Amy S; Back, Anthony L; Arnold, Robert M; Goldberg, Gabrielle R; Lim, Betty B; Litrivis, Evgenia; Smith, Cardinale B; O'Neill, Lynn B

2012-02-01

Expert communication is essential to high-quality care for older patients with serious illness. Although the importance of communication skills is widely recognized, formal curricula for teaching communication skills to geriatric and palliative medicine fellows is often inadequate or unavailable. The current study drew upon the educational principles and format of an evidence-based, interactive teaching method to develop an intensive communication skills training course designed specifically to address the common communication challenges that geriatric and palliative medicine fellows face. The 2-day retreat, held away from the hospital environment, included large-group overview presentations, small-group communication skills practice, and development of future skills practice commitment. Faculty received in-depth training in small-group facilitation techniques before the course. Geriatric and palliative medicine fellows were recruited to participate in the course and 100% (n = 18) enrolled. Overall satisfaction with the course was very high (mean 4.8 on a 5-point scale). After the course, fellows reported an increase in self-assessed preparedness for specific communication challenges (mean increase 1.4 on 5-point scale, P communication skills program, customized for the specific needs of geriatric and palliative medicine fellows, improved fellows' self-assessed preparedness for challenging communication tasks and provided a model for ongoing deliberate practice of communication skills. © 2012, Copyright the Authors Journal compilation © 2011, The American Geriatrics Society.

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

Investment of palliative medicine in bridging the gap with academia: a call to action.

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Moroni, M; Bolognesi, D; Muciarelli, P A; Abernethy, A P; Biasco, G

2011-03-01

Palliative care and palliative medicine define a relatively new medical discipline that has arisen in response to the need for better approaches to caring for people with advanced life-limiting illnesses. For professional, managerial and cultural reasons, it has evolved largely outside of academic structures. As the discipline has matured, its needs for education, training, intellectual discourse, evidence development and new science have become more apparent. Traditional academia remains sceptical about the role of palliative medicine, and bastions of palliative medicine expertise in universities have been slow to develop. Yet the engagement of the academic sector in palliative medicine has distinct benefits: (1) promoting the exploration of the culture, humanities and science of the discipline; (2) generating evidence to support practice; (3) creating a legion of educators to train a palliative medicine workforce and to inform clinical colleagues of the role of palliative medicine; and (4) providing order and direction to the discipline's development. A roadmap leading to better engagement between palliative medicine and academia is needed. Examples of developments that could help bridge the two domains include: standardisation of terminology and clarification of boundaries of influence; focus on high-quality research that will generate robust evidence to support clinical decision-making; and clear definition of outcomes, with measures that are understandable across medical disciplines. Copyright © 2011. Published by Elsevier Ltd.

Palliative care and end-of-life care for polypathological patients.

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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.

The Palliative Function of Hostile Sexism among High and Low-Status Chilean Students

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Vargas-Salfate, Salvador

2017-01-01

Previous studies have demonstrated that justifying the social, economic, and political systems is associated with psychological well-being, which has been termed as the palliative function of ideology. However, little research has been conducted on gender stereotypes among children, comparing by socioeconomic status. This study aimed to fill this gap in the system justification literature. We present data from the Chilean version of the International Survey of Children Well-Being (ISCWeB), which was conducted in 2012. We found that the palliative function of gender stereotypes is present among this sample, being qualified by a socioeconomic status by hostile gender stereotype interaction. In other words, the effect on the psychological well-being was observed in low-status, but not in high-status students. These results extend the previous knowledge about the palliative function of the ideology, suggesting why the low-status members of a society actively engage in system justification. PMID:29046657

The Palliative Function of Hostile Sexism among High and Low-Status Chilean Students

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Salvador Vargas-Salfate

2017-10-01

Full Text Available Previous studies have demonstrated that justifying the social, economic, and political systems is associated with psychological well-being, which has been termed as the palliative function of ideology. However, little research has been conducted on gender stereotypes among children, comparing by socioeconomic status. This study aimed to fill this gap in the system justification literature. We present data from the Chilean version of the International Survey of Children Well-Being (ISCWeB, which was conducted in 2012. We found that the palliative function of gender stereotypes is present among this sample, being qualified by a socioeconomic status by hostile gender stereotype interaction. In other words, the effect on the psychological well-being was observed in low-status, but not in high-status students. These results extend the previous knowledge about the palliative function of the ideology, suggesting why the low-status members of a society actively engage in system justification.

Palliative care and spirituality

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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.

Coping, quality of life, depression, and hopelessness in cancer patients in a curative and palliative, end-of-life care setting

NARCIS (Netherlands)

Laarhoven, H.W.M. van; Schilderman, J.; Bleijenberg, G.; Donders, R.; Vissers, K.C.P.; Verhagen, C.A.H.H.V.M.; Prins, J.B.

2011-01-01

BACKGROUND: Coping strategies may be important factors influencing quality of life (QOL), depression, and hopelessness. However, most studies on this issue were performed in patients still undergoing anticancer treatment. Unknown is which coping strategies are of importance for palliative-cancer

Staff Experience of Pain Management: An Improvement in Palliative Care

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Anna Unné

2013-09-01

Full Text Available Palliative care involves helping patients to achieve best possible quality of life by alleviating symptoms and suffering. The aim of the study was to describe and analyze staff member’s experience of working with evidence-based guidelines for pain management in palliative care. The study comprised a total of eight group interviews and 93 narratives from 22 staff members, all of who worked in palliative care. Data was analyzed using manifest qualitative content analysis and deductive perspectives according to SOC (sense of coherence. Three categories, “Awareness of Pain Management”, “Participation in Pain Management”, and “Safety at Pain Management”, were identified. The result showed an increased awareness of the value of a deeper understanding of policy documents and local guidelines. A key factor in improvement work was that team members were given the opportunity to repeat and continuously reflect on their performed work together within the team in dialog form. Teamwork may contribute to a better knowledge and understanding of how to develop high quality in healthcare by learning from each other in everyday work and by using evidence-based practices. Consistency in the working group could improve healthcare by using the espoused theory and theory-in-use for develop procedures and guidelines at work.

Effectiveness of palliative care including physiotherapy in hiv patients a review of the literature

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J. Uwimana

2007-01-01

(UNAIDS 2004.  The HIV/AIDS epidemic is devastating the African continent.In Africa poorly resourced health care infrastructure further impairs the quality of life in HIV sufferers. Palliative care is an approach that aims to improve the quality of life of people living with threatening diseases such as cancer and HIV/AIDS. This review aimed to determine the efficacy of palliative care. Complementary therapies such as Cognitive Behavioural Therapy, peer/counselling group therapy, massage  therapy, and exercise therapy constitute palliative care. Seventeen articles published in peer reviewed journals during the period 1990-2005 were reviewed. The findings of our review demonstrate that there are indications that palliative care can be effective in improving the quality of life in patients with life threatening diseases such HIV/AIDS. Research in this field is complicated by the heterogeneity of study samples, difficulty in patient recruitment, and death before the end of the intervention period. Future research in this area should aim to include larger study samples, using valid tools to assess quality of life and to employ qualitative methods in studies to assess the effectiveness of palliative care.

Effect of palliative care nurse champions on the quality of dying in the hospital according to bereaved relatives: A controlled before-and-after study

NARCIS (Netherlands)

F.E. Witkamp (Frederika); L. van Zuylen (Lia); C.C.D. van der Rijt (Carin); A. van der Heide (Agnes)

2016-01-01

textabstractBackground: To improve the quality of end-of-life care, hospitals increasingly appoint palliative care nurse champions. Aim: We investigated the effect of nurse champions on the quality of life during the last 3 days of life and the quality of dying as experienced by bereaved relatives.

Palliative radiotherapy for multiple myeloma

International Nuclear Information System (INIS)

Furusawa, Mitsuhiro; Baba, Yuji; Murakami, Ryuji; Yokoyama, Toshimi; Nishimura, Ryuichi; Uozumi, Hideaki; Takada, Chitose; Takahashi, Mutsumasa

1995-01-01

This study reviews the experience of palliative radiotherapy to patients with multiple myeloma to define the optimal dose for pain relief. The records of 31 patients (66 sites) with multiple myeloma irradiated for palliation at Kumamoto University hospital between 1985 and 1994 were reviewed. Total dose ranged from 8 to 50 Gy, with a mean of 32.2 Gy. Symptoms included pain (78.1%), neurological abnormalities (28.1%), and palpable masses (34.3%). Symptomatic remission was obtained in 45 of 46 evaluable sites (97.8%). Complete remission of symptoms were obtained in 28.3%, and partial remission in 69.6%. According to fraction size, there was no significant difference between 3-5 Gy and 1.8-2 Gy. The incidence of complete remission increased when a total dose of more than 20 Gy was given. When the quality of life is considered, hypofractionation was recommended for the palliative radiation therapy of multiple myeloma. (author)

Palliative pharmacological sedation for terminally ill adults.

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Beller, Elaine M; van Driel, Mieke L; McGregor, Leanne; Truong, Shani; Mitchell, Geoffrey

2015-01-02

outcomes narratively. The searches resulted in 14 included studies, involving 4167 adults, of whom 1137 received palliative sedation. More than 95% of people had cancer. No studies were randomised or quasi-randomised. All were consecutive case series, with only three having prospective data collection. Risk of bias was high, due to lack of randomisation. No studies measured quality of life or participant well-being, which was the primary outcome of the review. Five studies measured symptom control, using four different methods, so pooling was not possible. The results demonstrated that despite sedation, delirium and dyspnoea were still troublesome symptoms in these people in the last few days of life. Control of other symptoms appeared to be similar in sedated and non-sedated people. Only one study measured unintended adverse effects of sedative drugs and found no major events; however, four of 70 participants appeared to have drug-induced delirium. The study noticed no respiratory suppression. Thirteen of the 14 studies measured survival time from admission or referral to death, and all demonstrated no statistically significant difference between sedated and non-sedated groups. There was insufficient evidence about the efficacy of palliative sedation in terms of a person's quality of life or symptom control. There was evidence that palliative sedation did not hasten death, which has been a concern of physicians and families in prescribing this treatment. However, this evidence comes from low quality studies, so should be interpreted with caution. Further studies that specifically measure the efficacy and quality of life in sedated people, compared with non-sedated people, and quantify adverse effects are required.

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.

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.

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

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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.

Determinants of the administration of continuous palliative sedation: a systematic review.

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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

2013-12-01

Little is known about the determining factors related to the administration of continuous palliative sedation. Knowledge of these determinants may assist physicians in identifying patients who are at high risk of developing refractory symptoms, enable physicians to inform patients, and optimize close monitoring. The aim of this systematic review was to identify determinants of the administration of continuous palliative sedation. A systematic review of PubMed, EMBASE, and CINAHL was performed to identify English, Dutch, and German language papers published from January 1990 through April 2011. Inclusion was based on the following criteria: patient-based research on continuous palliative sedation, studies investigating determinants of palliative sedation and/or comparison between sedated and nonsedated cohorts, and studies using multivariate analyses and of fair to good or good methodological quality. In total, eight papers were reviewed. The following nine factors were found to be associated with the administration of continuous palliative sedation: younger age, male sex, having cancer, feelings of hopelessness, dying in a hospital, living in a Dutch speaking community setting, very nonreligious or extremely nonreligious physicians, physicians working in "other hospital" specialties, and physicians in favor of assisted death. Given the variation in study designs and the limitations of the included studies, the outcomes should be interpreted carefully. Further research is needed, particularly regarding factors that can be influenced and that may alter the course of a patient's symptoms and the patient's eventual need for palliative sedation.

Coping, quality of life, depression, and hopelessness in cancer patients in a curative and palliative, end-of-life care setting

NARCIS (Netherlands)

van Laarhoven, Hanneke W. M.; Schilderman, Johannes; Bleijenberg, Gijs; Donders, Rogier; Vissers, Kris C.; Verhagen, Constans A. H. H. V. M.; Prins, Judith B.

2011-01-01

Coping strategies may be important factors influencing quality of life (QOL), depression, and hopelessness. However, most studies on this issue were performed in patients still undergoing anticancer treatment. Unknown is which coping strategies are of importance for palliative-cancer patients who no

Instrument Psychometrics: Parental Satisfaction and Quality Indicators of Perinatal Palliative Care.

Science.gov (United States)

Wool, Charlotte

2015-10-01

Despite a life-limiting fetal diagnosis, prenatal attachment often occurs in varying degrees resulting in role identification by an individual as a parent. Parents recognize quality care and report their satisfaction when interfacing with health care providers. The aim was to test an instrument measuring parental satisfaction and quality indicators with parents electing to continue a pregnancy after learning of a life-limiting fetal diagnosis. A cross sectional survey design gathered data using a computer-mediated platform. Subjects were parents (n=405) who opted to continue a pregnancy affected by a life-limiting diagnosis. Factor analysis using principal component analysis with Varimax rotation was used to validate the instrument, evaluate components, and summarize the explained variance achieved among quality indicator items. The Prenatal Scale was reduced to 37 items with a three-component solution explaining 66.19% of the variance and internal consistency reliability of 0.98. The Intrapartum Scale included 37 items with a four-component solution explaining 66.93% of the variance and a Cronbach α of 0.977. The Postnatal Scale was reduced to 44 items with a six-component solution explaining 67.48% of the variance. Internal consistency reliability was 0.975. The Parental Satisfaction and Quality Indicators of Perinatal Palliative Care Instrument is a valid and reliable measure for parent-reported quality care and satisfaction. Use of this instrument will enable clinicians and researchers to measure quality indicators and parental satisfaction. The instrument is useful for assessing, analyzing, and reporting data on quality for care delivered during the prenatal, intrapartum, and postnatal periods.

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.

A region-based palliative care intervention trial using the mixed-method approach: Japan OPTIM study

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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

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

Palliative care provision for patients with chronic obstructive pulmonary disease

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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

Achieving palliative care research efficiency through defining and benchmarking performance metrics.

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Lodato, Jordan E; Aziz, Noreen; Bennett, Rachael E; Abernethy, Amy P; Kutner, Jean S

2012-12-01

Research efficiency is gaining increasing attention in the research enterprise, including palliative care research. The importance of generating meaningful findings and translating these scientific advances to improved patient care creates urgency in the field to address well documented system inefficiencies. The Palliative Care Research Cooperative Group (PCRC) provides useful examples for ensuring research efficiency in palliative care. Literature on maximizing research efficiency focuses on the importance of clearly delineated process maps, working instructions, and standard operating procedures in creating synchronicity in expectations across research sites. Examples from the PCRC support these objectives and suggest that early creation and employment of performance metrics aligned with these processes are essential to generate clear expectations and identify benchmarks. These benchmarks are critical in effective monitoring and ultimately the generation of high-quality findings that are translatable to clinical populations. Prioritization of measurable goals and tasks to ensure that activities align with programmatic aims is critical. Examples from the PCRC affirm and expand the existing literature on research efficiency, providing a palliative care focus. Operating procedures, performance metrics, prioritization, and monitoring for success should all be informed by and inform the process map to achieve maximum research efficiency.

Evaluation of the effectiveness of music therapy in improving the quality of life of palliative care patients: a randomised controlled pilot and feasibility study.

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

2016-01-01

Music therapy is frequently used as a palliative therapy. In consonance with the goals of palliative care, the primary aim of music therapy is to improve people's quality of life by addressing their psychological needs and facilitating communication. To date, primarily because of a paucity of robust research, the evidence for music therapy's effectiveness on patient reported outcomes is positive but weak. This pilot and feasibility study will test procedures, outcomes and validated tools; estimate recruitment and attrition rates; and calculate the sample size required for a phase III randomised trial to evaluate the effectiveness of music therapy in improving the quality of life of palliative care patients. A pilot randomised controlled trial supplemented with qualitative methods. The quantitative data collection will involve recruitment of >52 patients from an inpatient Marie Curie hospice setting over a 12-month period. Eligibility criteria include all patients with an Eastern Cooperative Oncology Group (ECOG) performance status of 03- indicating they are medically fit to engage with music therapy and an Abbreviated Mental Test (AMT) score of ≥7 indicating they are capable of providing meaningful informed consent and accurate responses to outcome measures. Baseline data collection will include the McGill Quality of Life Questionnaire (MQOL); medical and socio-demographic data will be undertaken before randomisation to an intervention or control group. Participants in the intervention arm will be offered two 30-45 min sessions of music therapy per week for three consecutive weeks, in addition to care as usual. Participants in the control arm will receive care as usual. Follow-up measures will be administered in 1, 3 and 5 weeks. Qualitative data collection will involve focus group and individual interviews with HCPs and carers. This study will ensure a firm methodological grounding for the development of a robust phase III randomised trial of music therapy for

Barriers and facilitators to the implementation of a paediatric palliative care team

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Verberne, Lisa M; Kars, Marijke C; Schepers, Sasja A; Schouten-van Meeteren, Antoinette Y N; Grootenhuis, Martha A; van Delden, Johannes J M

2018-01-01

BACKGROUND: Over the last decade, paediatric palliative care teams (PPCTs) have been introduced to support children with life-limiting diseases and their families and to ensure continuity, coordination and quality of paediatric palliative care (PPC). However, implementing a PPCT into an organisation

Barriers and facilitators to the implementation of a paediatric palliative care team

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Verberne, Lisa M.; Kars, Marijke C.; Schepers, Sasja A.; Schouten-van Meeteren, Antoinette Y. N.; Grootenhuis, Martha A.; van Delden, Johannes J. M.

2018-01-01

Over the last decade, paediatric palliative care teams (PPCTs) have been introduced to support children with life-limiting diseases and their families and to ensure continuity, coordination and quality of paediatric palliative care (PPC). However, implementing a PPCT into an organisation is a

Impact of Palliative Care Screening and Consultation in the ICU: A Multihospital Quality Improvement Project.

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Zalenski, Robert J; Jones, Spencer S; Courage, Cheryl; Waselewsky, Denise R; Kostaroff, Anna S; Kaufman, David; Beemath, Afzal; Brofman, John; Castillo, James W; Krayem, Hicham; Marinelli, Anthony; Milner, Bradley; Palleschi, Maria Teresa; Tareen, Mona; Testani, Sheri; Soubani, Ayman; Walch, Julie; Wheeler, Judy; Wilborn, Sonali; Granovsky, Hanna; Welch, Robert D

2017-01-01

There are few multicenter studies that examine the impact of systematic screening for palliative care and specialty consultation in the intensive care unit (ICU). To determine the outcomes of receiving palliative care consultation (PCC) for patients who screened positive on palliative care referral criteria. In a prospective quality assurance intervention with a retrospective analysis, the covariate balancing propensity score method was used to estimate the conditional probability of receiving a PCC and to balance important covariates. For patients with and without PCCs, outcomes studied were as follows: 1) change to "do not resuscitate" (DNR), 2) discharge to hospice, 3) 30-day readmission, 4) hospital length of stay (LOS), 5) total direct hospital costs. In 405 patients with positive screens, 161 (40%) who received a PCC were compared to 244 who did not. Patients receiving PCCs had higher rates of DNR-adjusted odds ratio (AOR) = 7.5; 95% CI 5.6-9.9) and hospice referrals-(AOR = 7.6; 95% CI 5.0-11.7). They had slightly lower 30-day readmissions-(AOR = 0.7; 95% CI 0.5-1.0); no overall difference in direct costs or LOS was found between the two groups. When patients receiving PCCs were stratified by time to PCC initiation, early consultation-by Day 4 of admission-was associated with reductions in LOS (1.7 days [95% CI -3.1, -1.2]) and average direct variable costs (-$1815 [95% CI -$3322, -$803]) compared to those who received no PCC. Receiving a PCC in the ICUs was significantly associated with more frequent DNR code status and hospice referrals, but not 30-day readmissions or hospital utilization. Early PCC was associated with significant LOS and direct cost reductions. Providing PCC early in the ICU should be considered. Copyright © 2016 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Gastric Outlet Obstruction Palliation: A Novel Stent-Based Solution

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Natasha M. Rueth

2010-06-01

Full Text Available Gastric outlet obstruction (GOO after esophagectomy is a morbid outcome and significantly hinders quality of life for end-stage esophageal cancer patients. In the pre-stent era, palliation consisted of chemotherapy, radiation, tumor ablation, or stricture dilation. In the current era, palliative stenting has emerged as an additional tool; however, migration and tumor ingrowth are ongoing challenges. To mitigate these challenges, we developed a novel, hybrid, stent-based approach for the palliative management of GOO. We present a patient with esophageal cancer diagnosed with recurrent, metastatic disease 1 year after esophagectomy. She developed dehydration and intractable emesis, which significantly interfered with her quality of life. For palliation, we dilated the stenosis and proceeded with our stent-based solution. Using a combined endoscopic and fluoroscopic approach, we placed a 12-mm silicone salivary bypass tube across the pylorus, where it kinked slightly because of local tumor biology. To bridge this defect and ensure luminal patency, we placed a nitinol tracheobronchial stent through the silicone stent. Clinically, the patient had immediate relief from her pre-operative symptoms and was discharged home on a liquid diet. In conclusion, GOO and malignant dysphagia after esophagectomy are significant challenges for patients with end-stage disease. Palliative stenting is a viable option, but migration and tumor ingrowth are common complications. The hybrid approach presented here provides a unique solution to these potential pitfalls. The flared silicone tube minimized the chance of migration and impaired tumor ingrowth. The nitinol stent aided with patency and overcame the challenges of the soft tube. This novel strategy achieved palliation, describing another endoscopic option in the treatment of malignant GOO.

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

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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.

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

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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.

Strategic planning by the palliative care steering committee of the Middle East Cancer Consortium.

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Moore, Shannon Y; Pirrello, Rosene D; Christianson, Sonya K; Ferris, Frank D

2011-04-01

High quality comprehensive palliative care is a critical need for millions of patients and families, but remains only a dream in many parts of the world. The failure to do a strategic planning process is one obstacle to advancing education and pain prevention and relief. The Middle Eastern Cancer Consortium Steering Committee attendees completed an initial strategic planning process and identified "developmental steps" to advance palliative care. Underscoring the multi-disciplinary nature of comprehensive palliative care, discipline-specific planning was done (adult and pediatric cancer and medicine, pharmacy, nursing) in a separate process from country-specific planning. Delineating the layers of intersection and differences between disciplines and countries was very powerful. Finding the common strengths and weaknesses in the status quo creates the potential for a more powerful regional response to the palliative care needs. Implementing and refining these preliminary strategic plans will augment and align the efforts to advance palliative care education and pain management in the Middle East. The dream to prevent and relieve suffering for millions of patients with advanced disease will become reality with a powerful strategic planning process well implemented.

Palliative care nurses' views on euthanasia.

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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.

Effectiveness and cost-effectiveness of home palliative care services for adults with advanced illness and their caregivers

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Gomes, Barbara; Calanzani, Natalia; Curiale, Vito; McCrone, Paul; Higginson, Irene J

2013-01-01

Background Extensive evidence shows that well over 50% of people prefer to be cared for and to die at home provided circumstances allow choice. Despite best efforts and policies, one-third or less of all deaths take place at home in many countries of the world. Objectives 1. To quantify the effect of home palliative care services for adult patients with advanced illness and their family caregivers on patients' odds of dying at home; 2. to examine the clinical effectiveness of home palliative care services on other outcomes for patients and their caregivers such as symptom control, quality of life, caregiver distress and satisfaction with care; 3. to compare the resource use and costs associated with these services; 4. to critically appraise and summarise the current evidence on cost-effectiveness. Search methods We searched 12 electronic databases up to November 2012. We checked the reference lists of all included studies, 49 relevant systematic reviews, four key textbooks and recent conference abstracts. We contacted 17 experts and researchers for unpublished data. Selection criteria We included randomised controlled trials (RCTs), controlled clinical trials (CCTs), controlled before and after studies (CBAs) and interrupted time series (ITSs) evaluating the impact of home palliative care services on outcomes for adults with advanced illness or their family caregivers, or both. Data collection and analysis One review author assessed the identified titles and abstracts. Two independent reviewers performed assessment of all potentially relevant studies, data extraction and assessment of methodological quality. We carried out meta-analysis where appropriate and calculated numbers needed to treat to benefit (NNTBs) for the primary outcome (death at home). Main results We identified 23 studies (16 RCTs, 6 of high quality), including 37,561 participants and 4042 family caregivers, largely with advanced cancer but also congestive heart failure (CHF), chronic obstructive

Palliation: Hilar cholangiocarcinoma

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Goenka, Mahesh Kr; Goenka, Usha

2014-01-01

Hilar cholangiocarcinomas are common tumors of the bile duct that are often unresectable at presentation. Palliation, therefore, remains the goal in the majority of these patients. Palliative treatment is particularly indicated in the presence of cholangitis and pruritus but is often also offered for high-grade jaundice and abdominal pain. Endoscopic drainage by placing stents at endoscopic retrograde cholangio-pancreatography (ERCP) is usually the preferred modality of palliation. However, for advanced disease, percutaneous stenting has been shown to be superior to endoscopic stenting. Endosonography-guided biliary drainage is emerging as an alternative technique, particularly when ERCP is not possible or fails. Metal stents are usually preferred over plastic stents, both for ERCP and for percutaneous biliary drainage. There is no consensus as to whether it is necessary to place multiple stents within advanced hilar blocks or whether unilateral stenting would suffice. However, recent data have suggested that, contrary to previous belief, it is useful to drain more than 50% of the liver volume for favorable long-term results. In the presence of cholangitis, it is beneficial to drain all of the obstructed biliary segments. Surgical bypass plays a limited role in palliation and is offered primarily as a segment III bypass if, during a laparotomy for resection, the tumor is found to be unresectable. Photodynamic therapy and, more recently, radiofrequency ablation have been used as adjuvant therapies to improve the results of biliary stenting. The exact technique to be used for palliation is guided by the extent of the biliary involvement (Bismuth class) and the availability of local expertise. PMID:25232449

Effectiveness and cost-effectiveness of home palliative care services for adults with advanced illness and their caregivers

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Barbara Gomes

Full Text Available BACKGROUND: Extensive evidence shows that well over 50% of people prefer to be cared for and to die at home provided circumstances allow choice. Despite best efforts and policies, one-third or less of all deaths take place at home in many countries of the world. OBJECTIVES: 1. to quantify the effect of home palliative care services for adult patients with advanced illness and their family caregivers on patients' odds of dying at home; 2. to examine the clinical effectiveness of home palliative care services on other outcomes for patients and their caregivers such as symptom control, quality of life, caregiver distress and satisfaction with care; 3. to compare the resource use and costs associated with these services; 4. to critically appraise and summarize the current evidence on cost-effectiveness. METHODS: Search methods: We searched 12 electronic databases up to November 2012. We checked the reference lists of all included studies, 49 relevant systematic reviews, four key textbooks and recent conference abstracts. We contacted 17 experts and researchers for unpublished data. Selection criteria: We included randomised controlled trials (RCTs, controlled clinical trials (CCTs, controlled before and after studies (CBAs and interrupted time series (ITSs evaluating the impact of home palliative care services on outcomes for adults with advanced illness or their family caregivers, or both. Data collection and analysis: One review author assessed the identified titles and abstracts. Two independent reviewers performed assessment of all potentially relevant studies, data extraction and assessment of methodological quality. We carried out meta-analysis where appropriate and calculated numbers needed to treat to benefit (NNTBs for the primary outcome (death at home. MAIN RESULTS: We identified 23 studies (16 RCTs, 6 of high quality, including 37,561 participants and 4042 family caregivers, largely with advanced cancer but also congestive heart failure

Current options for palliative treatment in patients with pancreatic cancer.

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Ridwelski, K; Meyer, F

2001-01-01

Palliative treatment is often the only remaining option in the management of pancreatic carcinoma, but its efficacy is poor due to low tumor sensitivity and inadequate treatment protocols. There are several options of palliative treatment with antitumor or supportive intention. Classical end points of palliative treatment are survival, tumor response, and quality of life. A decade ago, palliative chemotherapy consisted mainly of 5-fluorouracil as the standard agent in combination with either other agents and/or radiotherapy. Only the new antineoplastic drug gemcitabine, which was introduced simultaneously with the definition of novel end points of chemotherapy such as clinical benefit, allowed to achieve some progress. However, while gemcitabine monotherapy appeared to be superior to 5-fluorouracil and improved important parameters of quality of life, it could not provide a significant improvement of survival. A novel concept, therefore, is to improve this beneficial cytostatic response in pancreatic carcinoma using a gemcitabine-based protocol by combining it with antineoplastic drugs such as taxanes or platin analogs. This strategy may have the potential to improve the outcome in palliative chemotherapy of pancreatic carcinoma patients with advanced tumor growth or metastases. Best supportive care in pancreatic cancer consists of the treatment of symptoms, such as pain, jaundice, duodenal obstruction, weight loss, exocrine pancreatic insufficiency, and tumor-associated depression. Copyright 2001 S. Karger AG, Basel

How to implement quality indicators successfully in palliative care services: perceptions of team members about facilitators of and barriers to implementation

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Leemans, K.; Block, L.; van der Stichele, R.; Francke, A.L.; Deliens, L.; Cohen, J.

2015-01-01

Purpose: There is an increasing demand for the use of quality indicators in palliative care. With previous research about implementation in this field lacking, we aimed to evaluate the barriers to and facilitators of implementation. Methods: Three focus group interviews were organized with 21

How to implement quality indicators successfully in palliative care services: perceptions of team members about facilitators of and barriers to implementation.

NARCIS (Netherlands)

Leemans, K.; Block, L. van den; Stichele, R. Vander; Francke, A.L.; Deliens, L.; Cohen, J.

2015-01-01

Purpose: There is an increasing demand for the use of quality indicators in palliative care.With previous research about implementation in this field lacking, we aimed to evaluate the barriers to and facilitators of implementation. Methods: Three focus group interviews were organized with 21

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

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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

Vitamin "G"arden: a qualitative study exploring perception/s of horticultural therapy on a palliative care ward.

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Masel, Eva Katharina; Trinczek, Helena; Adamidis, Feroniki; Schur, Sophie; Unseld, Matthias; Kitta, Anna; Kirchheiner, Kathrin; Steininger, Birgit; Meixner-Katzmann, Karoline; Watzke, Herbert Hans

2018-06-01

In a palliative care setting, the preservation of quality of life is of particular importance. Horticultural therapy (HT) is reported as an excellent way to improve physical as well as psychological well-being, reduce levels of anxiety and depression, and promote social interaction. The use of horticultural interventions in palliative care has not yet been explored. The aim of this study was to explore the effects of HT in patients and team members on a palliative care ward. This study was based on a qualitative methodology, comprising 20 semistructured interviews with 15 advanced cancer patients participating in HT and with 5 members of the palliative care team. Interviews were analyzed using NVivo 10 software based on thematic analysis. The results revealed the following themes: (1) well-being, (2) variation of clinical routine, (3) creation, and (4) building relationships. Patients experienced positive stimulation through HT, were distracted from daily clinical routines, enjoyed creative work, and were able to build relationships with other patients. HT was also welcomed by the members of the palliative care team. Thirty-six percent of the patients did not meet the inclusion criteria, and 45% could not participate in the second or third HT session. Our study showed that the availability of HT was highly appreciated by the patients as well as by the palliative care team. Nevertheless, the dropout rate was high, and therefore, it might be more feasible to integrate green spaces into palliative care wards.

Palliative care and use of animal-assisted therapy.

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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.

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

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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.

Palliative care and neurology

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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

Integrating Speech-Language Pathology Services in Palliative End-of-Life Care

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Pollens, Robin D.

2012-01-01

Clinical speech-language pathologists (SLPs) may receive referrals to consult with teams serving patients who have a severe and/or terminal disease. Palliative care focuses on the prevention or relief of suffering to maximize quality of life for these patients and their families. This article describes how the role of the SLP in palliative care…

Validity and reliability of the Palliative Care Transition Measure for Caregivers (PCTM-C).

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D'Angelo, Daniela; Mastroianni, Chiara; Artico, Marco; Biagioli, Valentina; Latina, Roberto; Guarda, Michela; Piredda, Michela; De Marinis, Maria Grazia

2018-01-21

Patients suffering from advanced disease face different care transitions. The transition from acute to palliative care is challenging and may lead to the discontinuity of care. Family caregivers become important sources of information, as patients begin to experience difficulties in coping with emotional transition events. The Care Transition Measure was developed to evaluate care transitions as experienced by the elderly. It has never been used in palliative care. The aim of this study was to test the validity and reliability of a modified version of the Palliative Care Transition Measure, specifically the Palliative Care Transition Measure for Caregivers (PCTM-C). The study included two main phases. Phase I focused on the construction of a modified version of the Palliative Care Transition Measure through two focus groups and by computing the content validity index. Phase II focused on testing the psychometric properties of the PCTM-C on 272 family caregivers through confirmatory factor analysis. Result The content validity index for each of the items was higher than 0.80, whereas that for the scale was 0.95. The model tested with confirmatory factor analysis fitted the data well and confirmed that the transition measures referred to communication, integrated care and a trusting-relationship, and therefore the core dimensions of continuity according to existing conceptual models. The internal consistency was high (Cronbach's alpha = 0.94). Significance of results The PCTM-C proved to be a suitable measure of the quality of such transitions. It may be used in clinical practice as a continuity quality indicator and has the potential to guide interventions to enhance family caregivers' experience of care continuity.

Parental palliative cancer: psychosocial adjustment and health-related quality of life in adolescents participating in a German family counselling service

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Kühne Franziska

2012-10-01

Full Text Available Abstract Background Parental palliative disease is a family affair, however adolescent's well-being and coping are still rarely considered. The objectives of this paper were a to identify differences in psychosocial adjustment and health-related quality of life (HRQoL among adolescents and young adults with parents suffering from palliative cancer or cancers in other disease stages, b to relate psychosocial adjustment and health-related quality of life to adolescent coping, and c to explore significant mediator and predictor variables. Methods Cross-sectional data were derived from a multi-site research study of families before child-centered counselling. N=86 adolescents and young adults were included, their mean age 13.78 years (sd 2.45, 56% being female. Performed analyses included ANCOVA, multiple linear regression, and mediation analysis. Results Adolescents with parents suffering from palliative cancers reported significantly less total psychosocial problems, and better overall HRQoL. There were no significant group differences regarding coping frequency and efficacy. Our set of coping items significantly mediated the effect of parental disease stage on psychosocial problems and HRQoL. Further, parental disease status and general family functioning predicted psychosocial problems (R2adj =.390 and HRQoL (R2adj =.239 best. Conclusion The study indicates distress among adolescents throughout the entire parental disease process. Our analysis suggests that counselling services could offer supportive interventions which focus particularly on adolescent coping as well as family functioning.

Palliative Care: A Partnership Across the Continuum of Care.

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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.

[Palliative home care in Westfalia-Lippe--baseline study 12 and 36 months after coming into effect of the "agreement to the implementation of ambulant home palliative careforterminally ill patients"].

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Lux, E A; Althaus, A; Classen, B; Hilscher, H; Hofmeister, U; Holtappels, P; Mansfeld-Nies, R; Weller, H U

2013-07-25

On 2009-04-01 the Association of Statutory Health Insurance Physicians Westfalia-Lippe and health insurance organizations made an agreement to implement palliative home care for terminally ill patients. Based on this agreement, family doctors and palliativecardoctorscooperate,supported by coordinators. 12 and 36 months after coming into effect of the agreement a questionnaire was sent to the regional palliative care networks to collect data about supply structure, number of patients and their place of death. In the year 2011 85,410 people died in Westfalia-Lippe, 9.0% of them were included in palliative care structures. 69.5% of the included patients died at home, 9.9% in hospital (in 2010: 68.7% at home, 14.7% in hospital). A correlation between the population density or the number of included patients per palliative networkcould not be detected. Low-threshold access to palliative care networks(bothfamilydoctorand patientcancontact the palliative care team at any time) improves ambulant palliative care. Non-bureaucratic change from general home palliative care (German abbreviation: AAPV) to specialized home palliative care (SAPV) has proven successful in Westfalia-Lippe. Well-trained and experienced coordinators guarantee multidisciplinary and multiprofessional working of palliative care teams. In order to enhance palliative care in Westfalia-Lippe, data for quality assurance should be defined, periodically collected and evaluated in the future.

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

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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

stimulate mutual collaboration, improve accessibility to health care services and increase the quality of these services. The most important achievements obtained by the palliative care networks were: increase in personal contacts between colleagues in a region, improved engagement and collaboration between participating organizations, enhanced insight in the health care provisions, joined initiatives for the development of new care products, and organization of patient-tailored care. Important success factors for the networks were deemed: fruitful mutual contacts, regular funding and the collective development of care products. By logistic regression analyses, the collective development of new care products and the organization of case discussions between caregivers from different health care services turned out to be the most important predictors for success of the palliative care networks. Projects that stimulate the communication between professionals appear to improve the mutual collaboration between individual participants and between the participating organizations, which consequently enhances the quality of palliative care.

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

Intrathecal analgesia and palliative care: A case study

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Naveen S Salins

2010-01-01

Full Text Available Intrathecal analgesia is an interventional form of pain relief with definite advantages and multiple complications. Administration of intrathecal analgesia needs a good resource setting and expertise. Early complications of intrathecal analgesia can be very distressing and managing these complications will need a high degree of knowledge, technical expertise and level of experience. Pain control alone cannot be the marker of quality in palliative care. A holistic approach may need to be employed that is more person and family oriented.

The importance of measuring customer satisfaction in palliative care.

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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.

Palliative Care Development in Mongolia.

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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.

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

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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.

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

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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.

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

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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.

Relational use of an electronic quality of life and practice support system in hospital palliative consult care: A pilot study.

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Krawczyk, Marian; Sawatzky, Richard

2018-03-08

This study is part of an overarching research initiative on the development and integration of an electronic Quality of Life and Practice Support System (QPSS) that uses patient-reported outcome and experience measures in clinical practice. The current study focused on palliative nurse consultants trialing the QPSS with older hospitalized adults receiving acute care. The primary aim of the study was to better understand consultants' and patients' experiences and perspectives of use. The project involved two nurse specialists within a larger palliative outreach consult team (POCT) and consenting older adult patients (age 55+) in a large tertiary acute care hospital in western Canada. User-centered design of the QPSS was informed by three focus groups with the entire POCT team, and implementation was evaluated by direct observation as well as interviews with the POCT nurses and three patients. Thematic analysis of interviews and field notes was informed by theoretical perspectives from social sciences. Result Over 9 weeks, the POCT nurses used the QPSS at least once with 20 patients, for a total of 47 administrations. The nurses most often assisted patients in using the QPSS. Participants referenced three primary benefits of relational use: enhanced communication, strengthened therapeutic relations, and cocreation of new insights about quality of life and care experiences. The nurses also reported increased visibility of quality of life concerns and positive development as relational care providers. Significance of results Participants expressed that QPSS use positively influenced relations of care and enhanced practices consistent with person-centered care. Results also indicate that electronic assessment systems may, in some instances, function as actor-objects enabling new knowledge and relations of care rather than merely as a neutral technological platform. This is the first study to examine hospital palliative consult clinicians' use of a tablet-based system

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....

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...

Palliative home-based technology from a practitioner's perspective: benefits and disadvantages

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Johnston BM

2014-11-01

Full Text Available Bridget M Johnston Sue Ryder Care Centre for the Study of Supportive, Palliative, and End of Life Care, School of Health Sciences, University of Nottingham, Queen's Medical Centre, Nottingham, UK Abstract: This critical review paper explores the concept of palliative home-based technology from a practitioner's perspective. The aim of the critical review was to scope information available from published and unpublished research on the current state of palliative home-based technology, practitioner-focused perspectives, patient-focused perspectives, quality of life, and the implications for clinical practice. Published and unpublished studies were included. An example of one UK patient-centered home-based technology is explored as an exemplar. The evidence suggests that despite the challenges, there are numerous examples of good practice in relation to palliative home-based technology. Improvements in technology mean that telehealth has much to offer people being cared for at home with palliative needs. However, some of the evaluative evidence is limited, and further rigor is needed when evaluating future technology-based solutions innovations. Keywords: technology, telehealth, telemedicine, information technology, palliative care, hospice, terminal illness

A Systematic Review of End-of-Life Care Communication Skills Training for Generalist Palliative Care Providers: Research Quality and Reporting Guidance.

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Brighton, Lisa Jane; Koffman, Jonathan; Hawkins, Amy; McDonald, Christine; O'Brien, Suzanne; Robinson, Vicky; Khan, Shaheen A; George, Rob; Higginson, Irene J; Selman, Lucy Ellen

2017-09-01

End-of-life care (EoLC) communication skills training for generalist palliative care providers is recommended in policy guidance globally. Although many training programs now exist, there has been no comprehensive evidence synthesis to inform future training delivery and evaluation. To identify and appraise how EoLC communication skills training interventions for generalist palliative care providers are developed, delivered, evaluated, and reported. Systematic review. Ten electronic databases (inception to December 2015) and five relevant journals (January 2004 to December 2015) were searched. Studies testing the effectiveness of EoLC communication skills training for generalists were included. Two independent authors assessed study quality. Descriptive statistics and narrative synthesis are used to summarize the findings. From 11,441 unique records, 170 reports were identified (157 published, 13 unpublished), representing 160 evaluation studies of 153 training interventions. Of published papers, eight were of low quality, 108 medium, and 41 high. Few interventions were developed with service user involvement (n = 7), and most were taught using a mixture of didactics (n = 123), reflection and discussion (n = 105), and role play (n = 86). Evaluation designs were weak: communication skills training interventions in the literature, evidence is limited by poor reporting and weak methodology. Based on our findings, we present a CONSORT statement supplement to improve future reporting and encourage more rigorous testing. Copyright © 2017 The Author(s). Published by Elsevier Inc. All rights reserved.

Management of hemichorea hemiballismus syndrome in an acute palliative care setting

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Anuja Damani

2015-01-01

Full Text Available Hemichorea hemiballismus (HCHB is a rare and debilitating presentation of hyperglycemia and subcortical stroke. Early identification, proper assessment and management of HCHB can lead to complete symptom relief. We describe a case of HCHB presenting to a palliative care setting. A 63-year-old diabetic and hypertensive lady, with history of ovarian cancer presented to Palliative Medicine outpatient clinic with two days history of right HCHB. Blood investigations and brain imaging showed high blood sugar levels and lacunar subcortical stroke. Blood sugar levels were controlled with human insulin and Aspirin. Clopidogrel and Atorvastatin were prescribed for the management of lacunar stroke. HCHB reduced markedly post-treatment, leading to significant reduction in morbidity and improvement in quality of life. The symptoms completely resolved within one week of starting the treatment and the patient was kept on regular home and outpatient follow up for further monitoring. Acute palliative care (APC approach deals with the management of comorbidities and their complications along with supportive care. Prompt assessment and management of such complications lead to better patient outcomes.

Palliative chemotherapy: The perspectives and experiences of south african nurses

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Johanna Elizabeth Maree

2018-01-01

Full Text Available Objective: The objective of this study was to describe the perspectives and experiences of South African nurses caring for patients receiving palliative chemotherapy. Methods: A qualitative descriptive design was used and purposive sampling allowed us to select 11 nurses practising in a private ambulatory cancer care center in Port Elizabeth. In-depth interviews, guided by three broad themes were conducted and analyzed using qualitative content analyses. Data saturation determined the sample size. Results: Two themes emerged from the data – the patients cling to hope and the positive influence of palliative chemotherapy. The participants believed that patients consenting to palliative chemotherapy were clinging to false hope. They were also of the opinion that family members pressurize patients to consent to treatment. The participants experienced palliative chemotherapy positively, especially when an improvement in the patients' quality of life or pain relief was evident. Fatigue was highlighted as the major side effect, but it did not temper the participants' positive attitudes toward the treatment. Conclusions: Although the participants believed that patients cling to hope and consent to palliative chemotherapy because they hope to be cured, they experienced the treatment as positive. For them, the improvement in pain and quality of life outweighed the side effects the patients experienced. The positive attitude patients upheld while receiving this treatment encouraged them. Nurses should gain more knowledge about the meaning, people living with advanced cancer, attach to hope to prevent them from interpreting patients' hope as denial and false.

Palliative and low cost radiotherapy in developing countries

International Nuclear Information System (INIS)

Allen, Barry; Hussein, S.M.A.

2011-01-01

Full text: The International Agency for Research on Cancer predicts that cancer incidence in developing countries will increase dramatically in the first two decades of this millennium. Already some 80% of cancer patients in developing countries present with incurable disease. In many cases pain is a severe problem and palliation is needed to improve quality of life as well as extending survival. This paper will consider the physical and clinical aspects of palliative radiotherapy (PRT), choice of radiation modality, alternative approaches to imaging and therapy and cost-benefit considerations. The potential benefits of a dedicated palliative care centre include lower cost and therefore more centres, enabling more patients access to regional palliative care. Simple curative treatments could also be managed. Co60 radiotherapy has important advantages in developing countries, because of the higher initial cost of a linear accelerator, as well as the need for reliable power supply and the level of skill required by linac technicians and physicists. The beam characteristics of both Co60 units and low energy linacs are compared and both are found to be acceptable for palliation. The role of palliative and low cost radiotherapy in Bangladesh is reviewed. The concept of telemedicine is also discussed, using mobile phones and internet communication to allow rural clinics to receive support from specialists based in the cities, to send images for remote diagnosis and remote dose planning for radiotherapy.

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

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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.

Improving the wellbeing of staff who work in palliative care settings: A systematic review of psychosocial interventions.

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Hill, Rebecca C; Dempster, Martin; Donnelly, Michael; McCorry, Noleen K

2016-10-01

Staff in palliative care settings perform emotionally demanding roles which may lead to psychological distress including stress and burnout. Therefore, interventions have been designed to address these occupational risks. To investigate quantitative studies exploring the effectiveness of psychosocial interventions that attempt to improve psychological wellbeing of palliative care staff. A systematic review was conducted according to methodological guidance from UK Centre for Reviews and Dissemination. A search strategy was developed based on the initial scans of palliative care studies. Potentially eligible research articles were identified by searching the following databases: CINAHL, MEDLINE (Ovid), PsycINFO and Web of Science. Two reviewers independently screened studies against pre-set eligibility criteria. To assess quality, both researchers separately assessed the remaining studies using the Quality Assessment Tool for Quantitative Studies. A total of 1786 potentially eligible articles were identified - nine remained following screening and quality assessment. Study types included two randomised controlled trials, two non-randomised controlled trial designs, four one-group pre-post evaluations and one process evaluation. Studies took place in the United States and Canada (5), Europe (3) and Hong Kong (1). Interventions comprised a mixture of relaxation, education, support and cognitive training and targeted stress, fatigue, burnout, depression and satisfaction. The randomised controlled trial evaluations did not improve psychological wellbeing of palliative care staff. Only two of the quasi-experimental studies appeared to show improved staff wellbeing although these studies were methodologically weak. There is an urgent need to address the lack of intervention development work and high-quality research in this area. © The Author(s) 2016.

Teamwork in primary palliative care: general practitioners' and specialised oncology nurses' complementary competencies.

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Johansen, May-Lill; Ervik, Bente

2018-03-07

Generalists such as general practitioners and district nurses have been the main actors in community palliative care in Norway. Specialised oncology nurses with postgraduate palliative training are increasingly becoming involved. There is little research on their contribution. This study explores how general practitioners (GPs) and oncology nurses (ONs) experience their collaboration in primary palliative care. A qualitative focus group and interview study in rural Northern Norway, involving 52 health professionals. Five uni-professional focus group discussions were followed by five interprofessional discussions and six individual interviews. Transcripts were analysed thematically. The ideal cooperation between GPs and ONs was as a "meeting of experts" with complementary competencies. GPs drew on their generalist backgrounds, including their often long-term relationship with and knowledge of the patient. The ONs contributed longitudinal clinical observations and used their specialised knowledge to make treatment suggestions. While ONs were often experienced and many had developed a form of pattern recognition, they needed GPs' competencies for complex clinical judgements. However, ONs sometimes lacked timely advice from GPs, and could feel left alone with sick patients. To avoid this, some ONs bypassed GPs and contacted palliative specialists directly. While traditional professional hierarchies were not a barrier, we found that organization, funding and remuneration were significant barriers to cooperation. GPs often did not have time to meet with ONs to discuss shared patients. We also found that ONs and GPs had different strategies for learning. While ONs belonged to a networking nursing collective aiming for continuous quality improvement, GPs learned mostly from their individual experience of caring for patients. The complementary competences and autonomous roles of a specialised nurse and a general practitioner represented a good match for primary palliative

The Family Meeting in Palliative Care: Role of the Oncology Nurse.

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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.

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

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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.

Palliative healthcare: cost reduction and quality enhancement using end-of-life survey methodology.

Science.gov (United States)

Falls, Christopher Edward

2008-01-01

American medical institutions throughout the 20th century prescribed high customer satisfaction, but when it came to death, largely ignored it. An accelerated accumulation of esoteric medical information and the application of this knowledge to affect new cures and longer lives instilled an unquestioning reverence for the medical community among the patient population. Diminishing marginal gains in life expectancy, escalating costs related to life sustaining technologies, and a psychographic shift in the dominant consumer base have challenged this traditional reverence. Armed with unprecedented access to medical information, a more knowledgeable and assertive patient population has emerged in the 21st century to institute its own standards of what constitutes quality health care. In terms of end of life care, this has meant recognition that the emotional needs of the dying have been largely underserved by the current American medical model. Patients and their families are no longer willing to accept the traditional medical perspective of death as failure and have numerous international palliative care models that serve as benchmarks of success when it comes to quality of dying. When cure is a possibility, Americans will pursue it at all costs, but when it is not a possibility, they want honest communication and the opportunity to say good-bye to their loved ones. In the context of these emergent needs, life review is offered as a solution. The value proposition targets not only dying patients and their families, but also society as a whole.

Quality care as ethical care: a poststructural analysis of palliative and supportive district nursing care.

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Nagington, Maurice; Walshe, Catherine; Luker, Karen A

2016-03-01

Quality of care is a prominent discourse in modern health-care and has previously been conceptualised in terms of ethics. In addition, the role of knowledge has been suggested as being particularly influential with regard to the nurse-patient-carer relationship. However, to date, no analyses have examined how knowledge (as an ethical concept) impinges on quality of care. Qualitative semi-structured interviews were conducted with 26 patients with palliative and supportive care needs receiving district nursing care and thirteen of their lay carers. Poststructural discourse analysis techniques were utilised to take an ethical perspective on the current way in which quality of care is assessed and produced in health-care. It is argued that if quality of care is to be achieved, patients and carers need to be able to redistribute and redevelop the knowledge of their services in a collaborative way that goes beyond the current ways of working. Theoretical works and extant research are then used to produce tentative suggestions about how this may be achieved. © 2015 The Authors Nursing Inquiry Published by John Wiley & Sons Ltd.

Providing pediatric palliative care: PACT in action.

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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.

[Satisfaction of principal caregivers of patients followed-up by palliative care teams].

Science.gov (United States)

Fernández-Isla, L E; Conde-Valvis-Fraga, S; Fernández-Ruíz, J S

2016-10-01

To determine the satisfaction of main caregivers of deceased patients followed-up by palliative care teams. Web research on electronic data bases: PubMed and MEDES, using "Palliative Care" and "Patient Satisfaction" as main descriptors, and "Family", "Professional-Family Relations", "Quality of Health Care" and "Quality Assurance, Health Care" as secondary descriptors. Studies written in Spanish and English were included. Profile of principal caregiver: a woman between her mid-forties and her mid-fifties, usually related with the patient as a daughter, and of primary educational level. The items that the main caregivers valued the most were: a kind manner, feeling free to ask questions about problems during the process, tactful explanations, receiving information, pain management, time for answering questions, interest for emotional problems, and information about treatment. The worse valued items were: symptoms control, lack of psychological support after death, preparation for a death of a relative, keeping in touch after death, help to resolve outstanding issues, and help during grief. In general, a great majority of palliative care teams achieved excellent results. In spite of the good results obtained in satisfaction surveys from caregivers with regard to palliative care teams, it is essential to improve the quality of scientific-technical training (both from the medical and the psychological point of view), as well as to improve communicational skills among palliative care staff. Copyright © 2016 Sociedad Española de Médicos de Atención Primaria (SEMERGEN). Publicado por Elsevier España, S.L.U. All rights reserved.

Palliative psychiatry for severe persistent mental illness as a new approach to psychiatry? Definition, scope, benefits, and risks.

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Trachsel, Manuel; Irwin, Scott A; Biller-Andorno, Nikola; Hoff, Paul; Riese, Florian

2016-07-22

As a significant proportion of patients receiving palliative care suffer from states of anxiety, depression, delirium, or other mental symptoms, psychiatry and palliative care already collaborate closely in the palliative care of medical conditions. Despite this well-established involvement of psychiatrists in palliative care, psychiatry does not currently explicitly provide palliative care for patients with mental illness outside the context of terminal medical illness. Based on the WHO definition of palliative care, a, a working definition of palliative psychiatry is proposed. Palliative psychiatry focuses on mental health rather than medical/physical issues. We propose that the beneficiaries of palliative psychiatry are patients with severe persistent mental illness, who are at risk of therapeutic neglect and/or overly aggressive care within current paradigms. These include long-term residential care patients with severe chronic schizophrenia and insufficient quality of life, those with therapy-refractory depressions and repeated suicide attempts, and those with severe long-standing therapy-refractory anorexia nervosa. An explicitly palliative approach within psychiatry has the potential to improve quality of care, person-centredness, outcomes, and autonomy for patients with severe persistent mental illness. The first step towards a palliative psychiatry is to acknowledge those palliative approaches that already exist implicitly in psychiatry. Basic skills for a palliative psychiatry include communication of diagnosis and prognosis, symptom assessment and management, support for advance (mental health) care planning, assessment of caregiver needs, and referral to specialized services. Some of these may already be considered core skills of psychiatrists, but for a truly palliative approach they should be exercised guided by an awareness of the limited functional prognosis and lifespan of patients with severe persistent mental illness.

Gastric carcinoma: when is palliative gastrectomy justified?

Directory of Open Access Journals (Sweden)

Hubert Scheidbach

2011-12-01

Full Text Available Gastric carcinoma is frequently diagnosed with an advanced stage of non-curable tumor growth characterized by infiltration of the gastric serosa, peritoneal tumor spread and/or metastases within lymph nodes and liver. Currently, there is a controversy on the value of palliative resection with regard to the safety and benefit to the patient outcome. Based on the available literature, this overview summarizes the various aspects and interprets the limited data on the palliative resection of gastric carcinoma. It turns out that the available study results may indicate potential for an improved quality of life and a prolongation of survival if an acceptable morbidity and mortality are present.

Palliative sedation for intolerable suffering.

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Maltoni, Marco; Scarpi, Emanuela; Nanni, Oriana

2014-07-01

The purpose of this review is to provide an update on palliative sedation in palliative and end-of-life care. Palliative sedation is the medical procedure used to deal with refractory symptoms in advanced cancer patients when all other specific approaches have failed. Palliative sedation, in the strictest sense of the term, is a proportionate (proportionate palliative sedation, PPS) and intrinsically variable procedure used on an individual basis to relieve refractory symptoms in terminally ill patients, without the intention of hastening death. Completely separate from any other end-of-life decision and not intended to hasten death, palliative sedation has been shown not to have a detrimental impact on survival. To maintain palliative sedation as a legitimate clinical procedure from any ethical or clinical point of view, it must be limited to the restricted area for which it was conceived, that is, relief from refractory suffering as deemed necessary by a patient and by an experienced palliative care team. In this way, there is no risk of associating palliative sedation with other end-of-life decisions. Close collaboration is needed between oncologists and palliative care physicians for this clinical procedure.

Medical Students' Death Anxiety: Severity and Association With Psychological Health and Attitudes Toward Palliative Care.

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Thiemann, Pia; Quince, Thelma; Benson, John; Wood, Diana; Barclay, Stephen

2015-09-01

Death anxiety (DA) is related to awareness of the reality of dying and death and can be negatively related to a person's psychological health. Physicians' DA also may influence their care for patients approaching death. Doctors face death in a professional context for the first time at medical school, but knowledge about DA among medical students is limited. This study examined medical students' DA in relation to: 1) its severity, gender differences, and trajectory during medical education and 2) its associations with students' attitudes toward palliative care and their psychological health. Four cohorts of core science and four cohorts of clinical students at the University of Cambridge Medical School took part in a questionnaire survey with longitudinal follow-up. Students who provided data on the revised Collett-Lester Fear of Death Scale were included in the analysis (n = 790). Medical students' DA was moderate, with no gender differences and remained very stable over time. High DA was associated with higher depression and anxiety levels and greater concerns about the personal impact of providing palliative care. The associations between high DA and lower psychological health and negative attitudes toward palliative care are concerning. It is important to address DA during medical education to enhance student's psychological health and the quality of their future palliative care provision. Copyright © 2015 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Palliative Care: The Relief You Need When You're Experiencing Symptoms of Serious Illness

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... to you can bene fi t from this type of care. What is palliative care? Palliative care is ... that pain and other symptoms affect your quality of life and can leave you lacking the energy or motivation to pursue the things you enjoy. They also ...

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

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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.

Palliative or Comfort Care

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... 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 ...

Palliative Care

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... 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 ...

Facilitators and barriers for GP-patient communication in palliative care: a qualitative study among GPs, patients, and end-of-life consultants.

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Slort, Willemjan; Blankenstein, Annette H; Deliens, Luc; van der Horst, Henriëtte E

2011-04-01

Effective communication is considered to be essential for the delivery of high-quality care. Communication in palliative care may be particularly difficult, and there is still no accepted set of communication skills for GPs in providing palliative care. To obtain detailed information on facilitators and barriers for GP-patient communication in palliative care, with the aim to develop training programmes that enable GPs to improve their palliative care communication skills. Qualitative study with focus groups, interviews, and questionnaires. GPs with patients receiving palliative care at home, and end-of-life consultants in the Netherlands. GP (n = 20) focus groups discussing facilitators and barriers, palliative care patient (n = 6) interviews regarding facilitators, and end-of-life consultant (n = 22) questionnaires concerning barriers. Facilitators reported by both GPs and patients were accessibility, taking time, commitment, and listening carefully. GPs emphasise respect, while patients want GPs to behave in a friendly way, and to take the initiative to discuss end-of-life issues. Barriers reported by both GPs and end-of-life consultants were: difficulty in dealing with former doctors' delay and strong demands from patients' relatives. GPs report difficulty in dealing with strong emotions and troublesome doctor-patient relationships, while consultants report insufficient clarification of patients' problems, promises that could not be kept, helplessness, too close involvement, and insufficient anticipation of various scenarios. The study findings suggest that the quality of GP-patient communication in palliative care in the Netherlands can be improved. It is recommended that specific communication training programmes for GPs should be developed and evaluated.

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

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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.

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

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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.

High dose rate brachytherapy for the palliation of malignant dysphagia

International Nuclear Information System (INIS)

Homs, Marjolein Y.V.; Eijkenboom, Wilhelmina M.H.; Coen, Veronique L.M.A.; Haringsma, Jelle; Blankenstein, Mark van; Kuipers, Ernst J.; Siersema, Peter D.

2003-01-01

Background and purpose: High dose rate (HDR) brachytherapy is a commonly used palliative treatment for esophageal carcinoma. We evaluated the outcome of HDR brachytherapy in patients with malignant dysphagia. Material and methods: A retrospective analysis over a 10-year period was performed of 149 patients treated with HDR brachytherapy, administered in one or two sessions, at a median dose of 15 Gy. Patients were evaluated for functional outcome, complications, recurrent dysphagia, and survival. Results: At 6 weeks after HDR brachytherapy, dysphagia scores had improved from a median of 3 to 2 (n=104; P<0.001), however, dysphagia had not improved in 51 (49%) patients. Procedure-related complications occurred in seven (5%) patients. Late complications, including fistula formation or bleeding, occurred in 11 (7%) patients. Twelve (8%) patients experienced minor retrosternal pain. Median survival of the patients was 160 days with a 1-year survival rate of 15%. Procedure-related mortality was 2%. At follow-up, 55 (37%) patients experienced recurrent dysphagia. In 34 (23%) patients a metal stent was placed to relieve persistent or recurrent dysphagia. Conclusion: HDR brachytherapy is a moderately effective treatment for the palliation of malignant dysphagia. The incidence of early major complications is low, however, persistent and recurrent dysphagia occur frequently, and require often additional treatment

[General practitioner and palliative sedation].

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Schweitzer, Bart

2014-01-01

Recent publications in Dutch national newspapers on palliative sedation have raised concerns about its use in general practice. There is now evidence that there is no significant increase in the incidence of palliative sedation. Euthanasia requests were pending in 20.8% of the cases in which palliative sedation was performed, but the general practitioners could clearly justify why they made this choice. This is important because it indicates that they are aware of a sharp distinction between euthanasia and palliative sedation. Although the decision to perform palliative sedation was discussed with almost all cancer patients, patient involvement was less present in non-cancer conditions. This may be related to different disease trajectories, but it also indicates that attention should be devoted to earlier identification of patients in need of palliative care. The findings confirm that the practice of palliative sedation by general practitioners largely reflects the recommendations of the Dutch National Guideline on Palliative Sedation.

High-Risk Palliative Care Patients' Knowledge and Attitudes about Hereditary Cancer Testing and DNA Banking.

Science.gov (United States)

Quillin, John M; Emidio, Oluwabunmi; Ma, Brittany; Bailey, Lauryn; Smith, Thomas J; Kang, In Guk; Yu, Brandon J; Owodunni, Oluwafemi Patrick; Abusamaan, Mohammed; Razzak, Rab; Bodurtha, Joann N

2017-12-04

Even at the end of life, testing cancer patients for inherited susceptibility may provide life-saving information to their relatives. Prior research suggests palliative care inpatients have suboptimal understanding of genetic importance, and testing may be underutilized in this clinical setting. These conclusions are based on limited research. This study aimed to estimate genetic testing prevalence among high-risk palliative care patients in a National Cancer Institute-designated comprehensive cancer center. We also aimed to understand these patients' understanding of, and attitudes toward, hereditary cancer testing and DNA banking. Palliative care in-patients with cancer completed structured interviews, and their medical records were reviewed. Among patients at high risk for hereditary cancer, we assessed history of genetic testing/DNA banking; and related knowledge and attitudes. Among 24 high-risk patients, 14 (58.3%) said they/their relatives had genetic testing or they had been referred for a genetics consultation. Of the remaining 10 patients, seven (70%) said they would "probably" or "definitely" get tested. Patients who had not had testing were least concerned about the impact of future testing on their family relationships; two (20%) said they were "extremely concerned" about privacy related to genetic testing. Of patients without prior testing, five (50%) said they had heard or read "a fair amount" about genetic testing. No high-risk patients had banked DNA. Overall, 23 (95.8%) said they had heard or read "almost nothing" or "relatively little" about DNA banking. Written materials and clinician discussion were most preferred ways to learn about genetic testing and DNA banking. Overall, this study demonstrates underutilization of genetics services at the end of life continues to be problematic, despite high patient interest.

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

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...

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

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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.

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

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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.

Combined endoscopic and laparoscopic approach for palliative resection of metastatic melanoma of the stomach

Directory of Open Access Journals (Sweden)

Pritchard SA

2006-03-01

Full Text Available Abstract Background Metastatic tumours of the stomach present a clinical dilemma for the surgeon. Palliative surgical resection can alleviate symptoms and prolong survival in selected patients. However, previous studies have used open methods of surgical resection with potentially high morbidity and mortality. We describe the use of laparoscopic wedge resection of the stomach for palliative resection of metastatic melanoma to highlight the benefits of this technique. Case presentation A 58 year old male was investigated for iron deficiency anaemia while under treatment for pulmonary metastatic malignant melanoma. An upper gastrointestinal endoscopy revealed a 5 cm diameter ulcer on the anterior wall of the stomach, biopsies from the ulcer confirmed metastatic melanoma. Laparoscopic wedge resection of the stomach lesion was performed without complication. Conclusion Laparoscopic approach has many benefits and is useful for the palliative resection of rare tumours of the stomach in order to preserve the quality of life. Its use should be considered in selected patients.

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

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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.

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.

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 ...

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

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

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

Age Disparity in Palliative Radiation Therapy Among Patients With Advanced Cancer

Energy Technology Data Exchange (ETDEWEB)

Wong, Jonathan [University of Hawaii, John A. Burns School of Medicine, Honolulu, Hawaii (United States); Xu, Beibei [Department of Radiation Medicine and Applied Sciences, University of California San Diego, La Jolla, California (United States); Moores Cancer Center, University of California San Diego, La Jolla, California (United States); Yeung, Heidi N.; Roeland, Eric J. [Moores Cancer Center, University of California San Diego, La Jolla, California (United States); Division of Palliative Medicine, Department of Internal Medicine, University of California San Diego, La Jolla, California (United States); Martinez, Maria Elena [Moores Cancer Center, University of California San Diego, La Jolla, California (United States); Department of Family and Preventive Medicine, University of California San Diego, La Jolla, California (United States); Le, Quynh-Thu [Department of Radiation Oncology, Stanford University, Stanford, California (United States); Mell, Loren K. [Department of Radiation Medicine and Applied Sciences, University of California San Diego, La Jolla, California (United States); Moores Cancer Center, University of California San Diego, La Jolla, California (United States); Murphy, James D., E-mail: j2murphy@ucsd.edu [Department of Radiation Medicine and Applied Sciences, University of California San Diego, La Jolla, California (United States); Moores Cancer Center, University of California San Diego, La Jolla, California (United States)

2014-09-01

Purpose/Objective: Palliative radiation therapy represents an important treatment option among patients with advanced cancer, although research shows decreased use among older patients. This study evaluated age-related patterns of palliative radiation use among an elderly Medicare population. Methods and Materials: We identified 63,221 patients with metastatic lung, breast, prostate, or colorectal cancer diagnosed between 2000 and 2007 from the Surveillance, Epidemiology, and End Results (SEER)-Medicare linked database. Receipt of palliative radiation therapy was extracted from Medicare claims. Multivariate Poisson regression analysis determined residual age-related disparity in the receipt of palliative radiation therapy after controlling for confounding covariates including age-related differences in patient and demographic covariates, length of life, and patient preferences for aggressive cancer therapy. Results: The use of radiation decreased steadily with increasing patient age. Forty-two percent of patients aged 66 to 69 received palliative radiation therapy. Rates of palliative radiation decreased to 38%, 32%, 24%, and 14% among patients aged 70 to 74, 75 to 79, 80 to 84, and over 85, respectively. Multivariate analysis found that confounding covariates attenuated these findings, although the decreased relative rate of palliative radiation therapy among the elderly remained clinically and statistically significant. On multivariate analysis, compared to patients 66 to 69 years old, those aged 70 to 74, 75 to 79, 80 to 84, and over 85 had a 7%, 15%, 25%, and 44% decreased rate of receiving palliative radiation, respectively (all P<.0001). Conclusions: Age disparity with palliative radiation therapy exists among older cancer patients. Further research should strive to identify barriers to palliative radiation among the elderly, and extra effort should be made to give older patients the opportunity to receive this quality of life-enhancing treatment at the end

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

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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.

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.

Proactive palliative care for patients with COPD (PROLONG: a pragmatic cluster controlled trial

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Duenk RG

2017-09-01

Full Text Available RG Duenk,1 C Verhagen,1 EM Bronkhorst,2 PJWB van Mierlo,3,4 MEAC Broeders,5 SM Collard,6 PNR Dekhuijzen,7 KCP Vissers,1 Y Heijdra,7,* Y Engels1,* 1Department of Anesthesiology, Pain and Palliative Medicine, 2Department of Health Evidence, Radboud University Medical Center, Nijmegen, 3Department of Supportive and Palliative Medicine, 4Department of Geriatric Medicine, Rijnstate Hospital, Arnhem, 5Department of Pulmonary Diseases, Jeroen Bosch Hospital, ‘s-Hertogenbosch, 6Department of Pulmonary Diseases, Meander Medical Center, Amersfoort, 7Department of Pulmonary Diseases, Radboud University Medical Center, Nijmegen, the Netherlands *These authors contributed equally to this work Background and aim: Patients with advanced chronic obstructive pulmonary disease (COPD have poor quality of life. The aim of this study was to assess the effects of proactive palliative care on the well-being of these patients.Trial registration: This trial is registered with the Netherlands Trial Register, NTR4037.Patients and methods: A pragmatic cluster controlled trial (quasi-experimental design was performed with hospitals as cluster (three intervention and three control and a pretrial assessment was performed. Hospitals were selected for the intervention group based on the presence of a specialized palliative care team (SPCT. To control for confounders, a pretrial assessment was performed in which hospitals were compared on baseline characteristics. Patients with COPD with poor prognosis were recruited during hospitalization for acute exacerbation. All patients received usual care while patients in the intervention group received additional proactive palliative care in monthly meetings with an SPCT. Our primary outcome was change in quality of life score after 3 months, which was measured using the St George Respiratory Questionnaire (SGRQ. Secondary outcomes were, among others, quality of life at 6, 9 and 12 months; readmissions: survival; and having made

Companion animals and well-being in palliative care nursing: a literature review.

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MacDonald, Julie M; Barrett, David

2016-02-01

To evaluate and critique current knowledge regarding the role of animals in palliative care. To explore the impact that animals may have on the well-being of individuals and to identify gaps in the evidence base. There is recognition that having a companion animal will affect patient experience. Similarly, there has been some previous exploration on the use of specific animal assisted therapies for patients with different healthcare needs. A literature review was conducted to identify published and unpublished research about companion animals or animal-assisted therapy in palliative and/or end-of-life care. The primary objective was to explore the impact of animals on well-being at the end of life. A search for literature was carried out using a variety of databases and different combinations of search terms linked to animals in palliative care. Included works were critically appraised and thematically analysed. A limited range of literature was identified. From the small number of studies included in the review (n = 4), it appears that there is some evidence of animals (either companion animals or those used specifically to enhance care) having a positive impact on the patient experience. This study suggests that animals play a large part in the lives of people receiving palliative care. Using animals to support care may also offer some benefits to the patient experience. However, there appears to be a dearth of high-quality literature in this area. More research is therefore required. Nurses providing palliative care need to be aware of the part that a companion animal may play in the life of patients. There may also be the opportunity for nurses in some settings to integrate animal therapy into their provision of palliative care. © 2015 John Wiley & Sons Ltd.

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

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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.

[Use of music in palliative care].

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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

Feasibility of a rural palliative supportive service.

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Pesut, B; Hooper, B P; Robinson, C A; Bottorff, J L; Sawatzky, R; Dalhuisen, M

2015-01-01

January 2013 and May 2014. Scheduled in-person visit duration showed a mean of 67 minutes. During this same time period only 19 scheduled visits were declined, and there was no study attrition except through death, indicating a high degree of acceptability of the intervention. The primary needs that were addressed during these visits have been related to chronic disease management, and the attending physical symptoms were addressed through teaching and support. The use of structured quality of life and family caregiver needs assessments has been useful in facilitating communication, although some participants experienced the nature of the questions as too personal in the early stages of the relationship with the nurse coordinator. Findings from this study illustrate the feasibility of providing home-based services for rural older adults living with life-limiting chronic illness. The RPaSS model has the potential to smooth transitions and enhance quality of life along the disease trajectory and across locations of care by providing a consistent source of support and education. This type of continuity has the potential to foster the patient- and family-centered approach to care that is the ideal of a palliative approach. Further, the use of a rural community capacity-building approach may contribute to sustainability, which is a particularly important part of rural health service delivery.

"It Is Like Heart Failure. It Is Chronic … and It Will Kill You": A Qualitative Analysis of Burnout Among Hospice and Palliative Care Clinicians.

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Kavalieratos, Dio; Siconolfi, Daniel E; Steinhauser, Karen E; Bull, Janet; Arnold, Robert M; Swetz, Keith M; Kamal, Arif H

2017-05-01

Although prior surveys have identified rates of self-reported burnout among palliative care clinicians as high as 62%, limited data exist to elucidate the causes, ameliorators, and effects of this phenomenon. We explored burnout among palliative care clinicians, specifically their experiences with burnout, their perceived sources of burnout, and potential individual, interpersonal, organizational, and policy-level solutions to address burnout. During the 2014 American Academy of Hospice and Palliative Medicine/Hospice and Palliative Nurses Association Annual Assembly, we conducted three focus groups to examine personal narratives of burnout, how burnout differs within hospice and palliative care, and strategies to mitigate burnout. Two investigators independently analyzed data using template analysis, an inductive/deductive qualitative analytic technique. We interviewed 20 palliative care clinicians (14 physicians, four advanced practice providers, and two social workers). Common sources of burnout included increasing workload, tensions between nonspecialists and palliative care specialists, and regulatory issues. We heard grave concerns about the stability of the palliative care workforce and concerns about providing high-quality palliative care in light of a distressed and overburdened discipline. Participants proposed antiburnout solutions, including promoting the provision of generalist palliative care, frequent rotations on-and-off service, and organizational support for self-care. We observed variability in sources of burnout between clinician type and by practice setting, such as role monotony among full-time clinicians. Our results reinforce and expand on the severity and potential ramifications of burnout on the palliative care workforce. Future research is needed to confirm our findings and investigate interventions to address or prevent burnout. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights

Development of a set of process and structure indicators for palliative care: the Europall project

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Woitha Kathrin

2012-11-01

Full Text Available Abstract Background By measuring the quality of the organisation of palliative care with process and structure quality indicators (QIs, patients, caregivers and policy makers are able to monitor to what extent recommendations are met, like those of the council of the WHO on palliative care and guidelines. This will support the implementation of public programmes, and will enable comparisons between organisations or countries. Methods As no European set of indicators for the organisation of palliative care existed, such a set of QIs was developed. An update of a previous systematic review was made and extended with more databases and grey literature. In two project meetings with practitioners and experts in palliative care the development process of a QI set was finalised and the QIs were categorized in a framework, covering the recommendations of the Council of Europe. Results The searches resulted in 151 structure and process indicators, which were discussed in steering group meetings. Of those QIs, 110 were eligible for the final framework. Conclusions We developed the first set of QIs for the organisation of palliative care. This article is the first step in a multi step project to identify, validate and pilot QIs.

Facilitators and barriers for GP–patient communication in palliative care: a qualitative study among GPs, patients, and end-of-life consultants

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Slort, Willemjan; Blankenstein, Annette H; Deliens, Luc; van der Horst, Henriëtte E

2011-01-01

Background Effective communication is considered to be essential for the delivery of high-quality care. Communication in palliative care may be particularly difficult, and there is still no accepted set of communication skills for GPs in providing palliative care. Aim To obtain detailed information on facilitators and barriers for GP–patient communication in palliative care, with the aim to develop training programmes that enable GPs to improve their palliative care communication skills. Design of study Qualitative study with focus groups, interviews, and questionnaires. Setting GPs with patients receiving palliative care at home, and end-of-life consultants in the Netherlands. Method GP (n = 20) focus groups discussing facilitators and barriers, palliative care patient (n = 6) interviews regarding facilitators, and end-of-life consultant (n = 22) questionnaires concerning barriers. Results Facilitators reported by both GPs and patients were accessibility, taking time, commitment, and listening carefully. GPs emphasise respect, while patients want GPs to behave in a friendly way, and to take the initiative to discuss end-of-life issues. Barriers reported by both GPs and end-of-life consultants were: difficulty in dealing with former doctors' delay and strong demands from patients' relatives. GPs report difficulty in dealing with strong emotions and troublesome doctor–patient relationships, while consultants report insufficient clarification of patients' problems, promises that could not be kept, helplessness, too close involvement, and insufficient anticipation of various scenarios. Conclusion The study findings suggest that the quality of GP–patient communication in palliative care in the Netherlands can be improved. It is recommended that specific communication training programmes for GPs should be developed and evaluated. PMID:21439174

Holistic treatment of the patient in palliative care – The nurses view

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Filej Bojana

2016-12-01

Full Text Available Introduction. Man is a unique, unrepeatable whole in space and time and that is why he requires a holistic treatment, taking into account physical, psychological, social and spiritual factors. The balanced factors can ensure human well-being and his quality of life. Integrated treatment is especially important for patients in palliative care, which was the basic starting point of our research. In our research we wanted to establish whether the patients in palliative care are treated holistically from the perspective of the nurses and where are the specific aspects of palliative care (psychological, physical, social and spiritual more visible - in the hospitals or in the home environment.

Self-expandable metal stent for palliation of malignant dysphagia & quality of life improvement in advanced cancer esophagus: Upper Egypt experience

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Mohamed Abdelshafy; Mohammed A. Omar; Mohamed Abdel Bary; Mohamed Mostafa Wahaman; Rafaat Abd elaal Bakheet

2017-01-01

Background: In advanced cancer esophagus patients, self-expandable metallic stents (SEMS) are utilized to relieve malignant difficulty in swallowing and improve their quality of the life. Retrospectively, we evaluated the efficacy, feasibility, and outcomes of SEMS in palliation of malignant dysphagia in advanced cancer esophagus and its' complications. Methods: We retrospectively reviewed data of 350 patients with malignant dysphagia due to advanced cancer esophagus from December 2012 to ...

Radiotherapeutic palliation of brain metastasis: a retrospective quality of life analysis

International Nuclear Information System (INIS)

Silverman, Larry N.; Friedman, Richard B.; Lutz, Stephen T.; Lu, Jiandong; Huang, David T.

1996-01-01

.0001), motor strength (p<0.0001), headache (p<0.0001), seizure (p=0.0005), nausea/vomiting (p=0.0005), speech (p=0.001), and gait (p=0.0034) were present one month after the end of treatment. All patients were started on steroids before treatment. Attempts were made to wean the patients off steroids after therapy with only 25% still requiring steroid dosing after completion of treatment. All patients placed on anti-seizure medication before treatment continued usage indefinitely. CONCLUSION: The appearance of neurologic symptomatology impacts quality of life and is distressing for both patients and their families. Although life expectancy is not substantially prolonged in the majority of patients, treatment encompassing radiotherapy, steroids, and adequate supportive care offers a significant improvement in their quality of life. In this age of health care reform, where justification for palliative care is mandatory, quality of life, local control, and cost end-points are becoming as significant as survival end-points. The preservation of neurologic function or improvement in symptomatology is a definite indication of enhanced quality of life, as well as, limiting hospitalization or other costly interventions. Palliative care assumes a large role in the field of radiotherapy. Documentation of benefits derived from this treatment is lacking in patients treated for this intent. Our goal is to formalize this symptom scale and use it prospectively at our institution in the future

How useful are systematic reviews for informing palliative care practice? Survey of 25 Cochrane systematic reviews

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Hadley Gina

2008-08-01

Full Text Available Abstract Background In contemporary medical research, randomised controlled trials are seen as the gold standard for establishing treatment effects where it is ethical and practical to conduct them. In palliative care such trials are often impractical, unethical, or extremely difficult, with multiple methodological problems. We review the utility of Cochrane reviews in informing palliative care practice. Methods Published reviews in palliative care registered with the Cochrane Pain, Palliative and Supportive Care Group as of December 2007 were obtained from the Cochrane Database of Systematic Reviews, issue 1, 2008. We reviewed the quality and quantity of primary studies available for each review, assessed the quality of the review process, and judged the strength of the evidence presented. There was no prior intention to perform any statistical analyses. Results 25 published systematic reviews were identified. Numbers of included trials ranged from none to 54. Within each review, included trials were heterogeneous with respect to patients, interventions, and outcomes, and the number of patients contributing to any single analysis was generally much lower than the total included in the review. A variety of tools were used to assess trial quality; seven reviews did not use this information to exclude low quality studies, weight analyses, or perform sensitivity analysis for effect of low quality. Authors indicated that there were frequently major problems with the primary studies, individually or in aggregate. Our judgment was that the reviewing process was generally good in these reviews, and that conclusions were limited by the number, size, quality and validity of the primary studies. We judged the evidence about 23 of the 25 interventions to be weak. Two reviews had stronger evidence, but with limitations due to methodological heterogeneity or definition of outcomes. No review provided strong evidence of no effect. Conclusion Cochrane reviews

MR-monitored LITT as a palliative concept in patients with high grade gliomas: preliminary clinical experience.

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Reimer, P; Bremer, C; Horch, C; Morgenroth, C; Allkemper, T; Schuierer, G

1998-01-01

The purpose of this study was to evaluate the clinical utility of laser-induced thermotherapy (LITT) as a palliative treatment for patients with high-grade gliomas. Four consenting patients with recurrent high grade III/IV gliomas near the primary language or motor areas were palliatively treated with LITT (2-5 W, 3-13 minutes; Neodym YAG Laser, Dornier, Friedrichshafen, Germany). Temperature monitoring was performed by T1-weighted turbo-fast low-angle shot (FLASH) imaging at 1.5 T (Siemens Magnetom SP 4000, Siemens, Erlangen, Germany). MRI studies before LITT included contrast-enhanced conventional scans and functional activation studies to localize the primary motor cortex or language areas using an echo-planar imaging (EPI) spin-echo (SE) sequence. Follow-up studies consisted of contrast-enhanced conventional scans as well as diffusion studies (contrast-enhanced Fourier-acquired steady-state technique and EPI-SE) and perfusion studies (EPI-SE with .2 mmol of gadolinium (Gd)/kg body weight) to differentiate post-therapeutic effects from residual or recurrent tumor growth. Local tumor control was achieved in areas with laser energy deposition with clinically stable conditions > or = 6 months. Conventional contrast-enhanced scans demonstrated strong enhancement surrounding ablated tumor components, which showed a reduction in CBV/CBF. Perfusion studies were useful to discriminate granulomatous tissue enhancement from residual or recurrent tumor growth. Careful application of LITT may evolve as an alternative palliative concept for patients with end-stage high-grade cerebral gliomas reducing clinical symptoms from circumscribed areas of pathology.

Utility-adjusted analysis of the cost of palliative radiotherapy for bone metastases

International Nuclear Information System (INIS)

Barton, M.B.; Jacob, S.A.

2003-01-01

Palliative radiotherapy is effective in the treatment of bone metastases but is under-utilized, possibly because it is perceived to be expensive. We performed a cost-utility analysis of palliative radiotherapy for bone metastases, evaluating both the actual cost of radiotherapy as well as its impact on quality of life by adjusting for the variation in response to treatment. Hospital records between July 1991 and July 1996 were reviewed to ascertain the number of patients treated with palliative radiotherapy for bone metastases, the average number of fields of radiation delivered to each patient and the average duration of survival. Partial and complete response rates to palliative radiotherapy were obtained from a review of all published randomized controlled trials of radiation treatment of bone metastases. Utility values were assigned to the response rates, and an overall adjusted response rate to radiotherapy was derived. The cost of delivering a field of radiation was calculated. The total cost was divided by the total number of response months to give a utility-adjusted cost per month of palliative radiotherapy. The utility-adjusted cost per month of palliative radiotherapy of bone metastases was found to be AUS$ 100 per month or AUS$ 1200 per utility-adjusted life-year. This study demonstrates that, contrary to popular perception, palliative radiotherapy is a cost-effective treatment modality for bone metastases. Copyright (2003) Blackwell Science Pty Ltd

What is Pediatric Palliative Care?

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... 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 ...

Integrating palliative care in long-term care facilities across Europe (PACE): protocol of a cluster randomized controlled trial of the 'PACE Steps to Success' intervention in seven countries.

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Smets, Tinne; Onwuteaka-Philipsen, Bregje B D; Miranda, Rose; Pivodic, Lara; Tanghe, Marc; van Hout, Hein; Pasman, Roeline H R W; Oosterveld-Vlug, Mariska; Piers, Ruth; Van Den Noortgate, Nele; Wichmann, Anne B; Engels, Yvonne; Vernooij-Dassen, Myrra; Hockley, Jo; Froggatt, Katherine; Payne, Sheila; Szczerbińska, Katarzyna; Kylänen, Marika; Leppäaho, Suvi; Barańska, Ilona; Gambassi, Giovanni; Pautex, Sophie; Bassal, Catherine; Deliens, Luc; Van den Block, Lieve

2018-03-12

Several studies have highlighted the need for improvement in palliative care delivered to older people long-term care facilities. However, the available evidence on how to improve palliative care in these settings is weak, especially in Europe. We describe the protocol of the PACE trial aimed to 1) evaluate the effectiveness and cost-effectiveness of the 'PACE Steps to Success' palliative care intervention for older people in long-term care facilities, and 2) assess the implementation process and identify facilitators and barriers for implementation in different countries. We will conduct a multi-facility cluster randomised controlled trial in Belgium, Finland, Italy, the Netherlands, Poland, Switzerland and England. In total, 72 facilities will be randomized to receive the 'Pace Steps to Success intervention' or to 'care as usual'. Primary outcome at resident level: quality of dying (CAD-EOLD); and at staff level: staff knowledge of palliative care (Palliative Care Survey). resident's quality of end-of-life care, staff self-efficacy, self-perceived educational needs, and opinions on palliative care. Economic outcomes: direct costs and quality-adjusted life years (QALYs). Measurements are performed at baseline and after the intervention. For the resident-level outcomes, facilities report all deaths of residents in and outside the facilities over a previous four-month period and structured questionnaires are sent to (1) the administrator, (2) staff member most involved in care (3) treating general practitioner, and (4) a relative. For the staff-level outcomes, all staff who are working in the facilities are asked to complete a structured questionnaire. A process evaluation will run alongside the effectiveness evaluation in the intervention group using the RE-AIM framework. The lack of high quality trials in palliative care has been recognized throughout the field of palliative care research. This cross-national cluster RCT designed to evaluate the impact of the

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

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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.

Benefit or Harm? A study on impact of collusion on the quality of life among palliative care patients

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Anju Victor

2018-01-01

Full Text Available Background: In India, roughly one-half of patients undergoing cancer treatment are unaware of their diagnosis or treatment. The intention of this study is to determine the prevalence of collusion and its influence on quality of life (QOL among patients in palliative care settings. Methodology: A cross-sectional study was conducted among 100 palliative care patients to assess the extent of knowledge about their diagnosis and prognosis. The caretakers and the treating doctors were interviewed using a semi-structured questionnaire to assess if diagnosis was revealed to a patient. QOL of the patients was assessed using the European Organisation for Research and Treatment of Cancer QOL Questionnaire-C30 questionnaire. Results: The prevalence of collusion was 37%, i.e., in more than one-third of the palliative care patients; caregivers restrained doctors from disclosing the diagnosis. The prevalence of collusion was less among patients with higher educational qualification (P = 0.027 and professionals (P = 0.025. Collusion was not associated with gender, type of family, place of residence, and socioeconomic status (SES. In multivariate regression, collusion (odds ratio = 10.53 was independently associated with poor QOL when adjusted for age, gender, place of residence, religion, educational status, family type, and SES. Conclusion: Collusion is fairly prevalent and it worsens the QOL among cancer patients. Since the main driver for collusion is the strong desire among caregivers to protect the physical and psychological well-being, the findings of the study could motivate the caregiver for a more open and honest communication.

Experiences of Family Members of Dying Patients Receiving Palliative Sedation.

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Tursunov, Olga; Cherny, Nathan I; Ganz, Freda DeKeyser

2016-11-01

To describe the experience of family members of patients receiving palliative sedation at the initiation of treatment and after the patient has died and to compare these experiences over time.
. Descriptive comparative study.
. Oncology ward at Shaare Zedek Medical Center in Jerusalem, Israel.
. A convenience sample of 34 family members of dying patients receiving palliative sedation. 
. A modified version of a questionnaire describing experiences of family members with palliative sedation was administered during palliative sedation and one to four months after the patient died. Descriptive statistics were used to describe the results of the questionnaire, and appropriate statistical analyses were conducted for comparisons over time.
. Experiences of family members and time.
. Most relatives were satisfied with the sedation and staff support. Palliative sedation was experienced as an ethical way to relieve suffering. However, one-third felt that it shortened the patient's life. An explanation of the treatment was given less than half of the time and was usually given on the same day treatment was started. This explanation was given by physicians and nurses. Many felt that they were not ready for changes in the patient's condition and wanted increased opportunities to discuss the treatment with oncology care providers. No statistically significant differences in experiences were found over time. 
. Relatives' experiences of palliative sedation were generally positive and stable over time. Important experiences included timing of the initiation of sedation, timing and quality of explanations, and communication.
. Nurses should attempt to initiate discussions of the possible role of sedation in the event of refractory symptoms and follow through with continued discussions. The management of refractory symptoms at the end of life, the role of sedation, and communication skills associated with decision making related to palliative sedation should be a

Effects of online palliative care training on knowledge, attitude and satisfaction of primary care physicians.

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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

Effects of online palliative care training on knowledge, attitude and satisfaction of primary care physicians

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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

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

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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.

Early identification of and proactive palliative care for patients in general practice, incentive and methods of a randomized controlled trial

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Thoonsen Bregje

2011-11-01

Full Text Available Abstract Background According to the Word Health Organization, patients who can benefit from palliative care should be identified earlier to enable proactive palliative care. Up to now, this is not common practice and has hardly been addressed in scientific literature. Still, palliative care is limited to the terminal phase and restricted to patients with cancer. Therefore, we trained general practitioners (GPs in identifying palliative patients in an earlier phase of their disease trajectory and in delivering structured proactive palliative care. The aim of our study is to determine if this training, in combination with consulting an expert in palliative care regarding each palliative patient's tailored care plan, can improve different aspects of the quality of the remaining life of patients with severe chronic diseases such as chronic obstructive pulmonary disease, congestive heart failure and cancer. Methods/Design A two-armed randomized controlled trial was performed. As outcome variables we studied: place of death, number of hospital admissions and number of GP out of hours contacts. Discussion We expect that this study will increase the number of identified palliative care patients and improve different aspects of quality of palliative care. This is of importance to improve palliative care for patients with COPD, CHF and cancer and their informal caregivers, and to empower the GP. The study protocol is described and possible strengths and weaknesses and possible consequences have been outlined. Trial Registration The Netherlands National Trial Register: NTR2815

‘Peace’ and ‘life worthwhile’ as measures of spiritual well-being in African palliative care: a mixed-methods study

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Selman, L.; Speck, P.; Gysels, M.; Agupio, G.; Dinat, N.; Downing, J.; Gwyther, L.; Mashao, T.; Mmoledi, K.; Moll, T.; Mpanga Sebuyira, L.; Ikin, B.; Higginson, I.J.; Harding, R.

2013-01-01

Background Patients with incurable, progressive disease receiving palliative care in sub-Saharan Africa experience high levels of spiritual distress with a detrimental impact on their quality of life. Locally validated measurement tools are needed to identify patients’ spiritual needs and evaluate

Palliative care in home care: perceptions of occupational therapists

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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.

Palliative care content on cancer center websites.

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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.

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

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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.

Home-Based Palliative Care Program Relieves Chronic Pain in Kerala, India: Success Realized Through Patient, Family Narratives.

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Ajjarapu, Aparna Sai; Broderick, Ann

2018-06-14

An estimated 1.5 billion people across the globe live with chronic pain, and an estimated 61 million people worldwide experience unrelieved serious health-related suffering. One-sixth of the global population lives in India, where approximately 10 million people endure unrelieved serious health-related suffering. The state of Kerala is home to Pallium India, one of the most sophisticated palliative care programs in the country. This private organization in Trivandrum provides palliative and hospice care to underresourced populations and emphasizes holistic pain treatment. The current project features the pain stories of six patients who received treatment from Pallium India. Basic patient demographic information was collected, and a Pallium India staff member who was fluent in Malayalam and English asked questions about each patient's pain experience. Pain narratives illustrate the substantial impact of Pallium India's home visit program and the role of total pain assessment in delivering high-quality palliative care.

Palliative radiotherapy in head and neck cancers: Evidence based review

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Talapatra Kaustav

2006-01-01

Full Text Available Squamous cell carcinoma of head and neck (SCCHN is one of the commonest cancers seen in India, constituting up to 25% of their overall cancer burden. Advanced SCCHN is a bad disease with a poor prognosis and patients usually die of uncontrolled loco-regional disease. Curative intent management of loco-regionally advanced SCCHN has become more evidence-based with active clinical research in the form of large prospective randomized controlled trials and meta-analyses. However, little has been written about palliative radiotherapy (PRT in head and neck cancers. It is widely recognized that PRT provides effective palliation and improved quality-of-life in advanced incurable malignancies. It is in this context that this study proposes to review the existing literature on palliative radiotherapy in advanced incurable SCCHN to help formulate consensus guidelines and recommendations.

European Association for Palliative Care (EAPC) framework for palliative sedation: an ethical discussion.

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Juth, Niklas; Lindblad, Anna; Lynöe, Niels; Sjöstrand, Manne; Helgesson, Gert

2010-09-13

The aim of this paper is to critically discuss some of the ethically controversial issues regarding continuous deep palliative sedation at the end of life that are addressed in the EAPC recommended framework for the use of sedation in palliative care. We argue that the EAPC framework would have benefited from taking a clearer stand on the ethically controversial issues regarding intolerable suffering and refractory symptoms and regarding the relation between continuous deep palliative sedation at the end of life and euthanasia. It is unclear what constitutes refractory symptoms and what the relationship is between refractory symptoms and intolerable suffering, which in turn makes it difficult to determine what are necessary and sufficient criteria for palliative sedation at the end of life, and why. As regards the difference between palliative sedation at the end of life and so-called slow euthanasia, the rationale behind stressing the difference is insufficiently demonstrated, e.g. due to an overlooked ambiguity in the concept of intention. It is therefore unclear when palliative sedation at the end of life amounts to abuse and why. The EAPC framework would have benefited from taking a clearer stand on some ethically controversial issues regarding intolerable suffering and refractory symptoms and regarding the relation between continuous deep palliative sedation at the end of life and euthanasia. In this text, we identify and discuss these issues in the hope that an ensuing discussion will clarify the EAPC's standpoint.

European Association for Palliative Care (EAPC framework for palliative sedation: an ethical discussion

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Juth Niklas

2010-09-01

Full Text Available Abstract Background The aim of this paper is to critically discuss some of the ethically controversial issues regarding continuous deep palliative sedation at the end of life that are addressed in the EAPC recommended framework for the use of sedation in palliative care. Discussion We argue that the EAPC framework would have benefited from taking a clearer stand on the ethically controversial issues regarding intolerable suffering and refractory symptoms and regarding the relation between continuous deep palliative sedation at the end of life and euthanasia. It is unclear what constitutes refractory symptoms and what the relationship is between refractory symptoms and intolerable suffering, which in turn makes it difficult to determine what are necessary and sufficient criteria for palliative sedation at the end of life, and why. As regards the difference between palliative sedation at the end of life and so-called slow euthanasia, the rationale behind stressing the difference is insufficiently demonstrated, e.g. due to an overlooked ambiguity in the concept of intention. It is therefore unclear when palliative sedation at the end of life amounts to abuse and why. Conclusions The EAPC framework would have benefited from taking a clearer stand on some ethically controversial issues regarding intolerable suffering and refractory symptoms and regarding the relation between continuous deep palliative sedation at the end of life and euthanasia. In this text, we identify and discuss these issues in the hope that an ensuing discussion will clarify the EAPC's standpoint.

The diverse landscape of palliative care clinics.

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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

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

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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.

Music therapy in pediatric palliative care: family-centered care to enhance quality of life.

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Lindenfelser, Kathryn J; Hense, Cherry; McFerran, Katrina

2012-05-01

Research into the value of music therapy in pediatric palliative care (PPC) has identified quality of life as one area of improvement for families caring for a child in the terminal stages of a life-threatening illness. This small-scale investigation collected data in a multisite, international study including Minnesota, USA, and Melbourne, Australia. An exploratory mixed method design used the qualitative data collected through interviews with parents to interpret results from the PedsQL Family Impact Module of overall parental quality of life. Parents described music therapy as resulting in physical improvements of their child by providing comfort and stimulation. They also valued the positive experiences shared by the family in music therapy sessions that were strength oriented and family centered. This highlighted the physical and communication scales within the PedsQL Family Impact Module, where minimal improvements were achieved in contrast to some strong results suggesting diminished quality of life in cognitive and daily activity domains. Despite the significant challenges faced by parents during this difficult time, parents described many positive experiences in music therapy, and the overall score for half of the parents in the study did not diminish. The value of music therapy as a service that addresses the family-centered agenda of PPC is endorsed by this study.

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

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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.

Palliative sedation in nursing anesthesia.

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Wolf, Michael T

2013-04-01

Palliative sedation is a technique of providing a sedative for end-of-life care to patients with intractable pain. The literature discusses the techniques and use of palliative sedation. Numerous articles have been written regarding the issues surrounding its use, but no literature has discussed the prescription or administration of palliative sedation by a nurse anesthetist. By understanding the concept and ethics involved in its use and providing nursing care that is theory based, the author argues that the involvement of nursing anesthesia is appropriate and within the scope of practice. Few other healthcare disciplines can provide the patient care and empirical knowledge that is imperative in the care of the dying patient. This article discusses the concept and ethics of palliative sedation and presents a case of providing palliative sedation to a terminally ill patient by an experienced nurse anesthetist. Palliative sedation should be understood, embraced, and utilized as an area of expertise suited for nursing anesthesia.

Palliative treatment of malignant ascites: profile of catumaxomab

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Lila Ammouri

2010-05-01

Full Text Available Lila Ammouri, Eric E PrommerMayo Clinic Hospice and Palliative Medicine Program, Mayo Clinic College of Medicine, Mayo Clinic Hospital, Scottsdale, AZ, USAAbstract: Malignant ascites is the abnormal accumulation of fluid in the peritoneal cavity associated with several intrapelvic and intra-abdominal malignancies. The development of ascites leads to significant symptoms and poor quality of life for the cancer patient. Available therapies for palliation include treatment of the underlying disease, but when there are no treatment options, the use of diuretics, implantation of drainage catheters, and surgical shunting techniques are considered. None of these symptom palliation options affect the course of disease. The development of trifunctional antibodies, which attach to specific overexpressed surface markers on tumor cells, and trigger an immune response leading to cytoreductive effects, represents a new approach to the management of malignant ascites. The purpose of this review is to highlight current therapies for malignant ascites and review data as to the effectiveness of a new trifunctional antibody, catumaxomab.Keywords: catumaxomab, ascites, trifunctional

Longitudinal Pediatric Palliative Care: Quality of Life & Spiritual Struggle (FACE): design and methods.

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Dallas, Ronald H; Wilkins, Megan L; Wang, Jichuan; Garcia, Ana; Lyon, Maureen E

2012-09-01

As life expectancy increases for adolescents ever diagnosed with AIDS due to treatment advances, the optimum timing of advance care planning is unclear. Left unprepared for end-of-life (EOL) decisions, families may encounter miscommunication and disagreements, resulting in families being charged with neglect, court battles and even legislative intervention. Advanced care planning (ACP) is a valuable tool rarely used with adolescents. The Longitudinal Pediatric Palliative Care: Quality of Life & Spiritual Struggle study is a two-arm, randomized controlled trial assessing the effectiveness of a disease specific FAmily CEntered (FACE) advanced care planning intervention model among adolescents diagnosed with AIDS, aimed at relieving psychological, spiritual, and physical suffering, while maximizing quality of life through facilitated conversations about ACP. Participants will include 130 eligible dyads (adolescent and family decision-maker) from four urban cities in the United States, randomized to either the FACE intervention or a Healthy Living Control. Three 60-minute sessions will be conducted at weekly intervals. The dyads will be assessed at baseline as well as 3-, 6-, 12-, and 18-month post-intervention. The primary outcome measures will be in congruence with EOL treatment preferences, decisional conflict, and quality of communication. The mediating and moderating effects of threat appraisal, HAART adherence, and spiritual struggle on the relationships among FACE and quality of life and hospitalization/dialysis use will also be assessed. This study will be the first longitudinal study of an AIDS-specific model of ACP with adolescents. If successful, this intervention could quickly translate into clinical practice. Copyright © 2012 Elsevier Inc. All rights reserved.

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

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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.

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

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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.

Systematic Review of Palliative Care in the Rural Setting.

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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.

Split-Course, High-Dose Palliative Pelvic Radiotherapy for Locally Progressive Hormone-Refractory Prostate Cancer

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Gogna, Nirdosh Kumar, E-mail: kumar_gogna@health.qld.gov.au [Radiation Oncology Services, Mater Centre, Brisbane, Queensland (Australia); Baxi, Siddhartha; Hickey, Brigid; Baumann, Kathryn [Radiation Oncology Services, Mater Centre, Brisbane, Queensland (Australia); Burmeister, Elizabeth [Princess Alexandra Hospital, Brisbane, Queensland (Australia); Holt, Tanya [Radiation Oncology Services, Mater Centre, Brisbane, Queensland (Australia)

2012-06-01

Purpose: Local progression, in patients with hormone-refractory prostate cancer, often causes significant morbidity. Pelvic radiotherapy (RT) provides effective palliation in this setting, with most published studies supporting the use of high-dose regimens. The aim of the present study was to examine the role of split-course hypofractionated RT used at our institution in treating this group of patients. Methods and Materials: A total of 34 men with locoregionally progressive hormone-refractory prostate cancer, treated with a split course of pelvic RT (45-60 Gy in 18-24 fractions) between 2000 and 2008 were analyzed. The primary endpoints were the response rate and actuarial locoregional progression-free survival. Secondary endpoints included overall survival, compliance, and acute and late toxicity. Results: The median age was 71 years (range, 53-88). Treatment resulted in an overall initial response rate of 91%, a median locoregional progression-free survival of 43 months, and median overall survival of 28 months. Compliance was excellent and no significant late toxicity was reported. Conclusions: The split course pelvic RT described has an acceptable toxicity profile, is effective, and compares well with other high-dose palliative regimens that have been previously reported.

Psychometric properties of carer-reported outcome measures in palliative care: A systematic review

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Michels, Charlotte TJ; Boulton, Mary; Adams, Astrid; Wee, Bee; Peters, Michele

2016-01-01

Background: Informal carers face many challenges in caring for patients with palliative care needs. Selecting suitable valid and reliable outcome measures to determine the impact of caring and carers’ outcomes is a common problem. Aim: To identify outcome measures used for informal carers looking after patients with palliative care needs, and to evaluate the measures’ psychometric properties. Design: A systematic review was conducted. The studies identified were evaluated by independent reviewers (C.T.J.M., M.B., M.P.). Data regarding study characteristics and psychometric properties of the measures were extracted and evaluated. Good psychometric properties indicate a high-quality measure. Data sources: The search was conducted, unrestricted to publication year, in the following electronic databases: Applied Social Sciences Index and Abstracts, Cumulative Index to Nursing and Allied Health Literature, The Cochrane Library, EMBASE, PubMed, PsycINFO, Social Sciences Citation Index and Sociological Abstracts. Results: Our systematic search revealed 4505 potential relevant studies, of which 112 studies met the inclusion criteria using 38 carer measures for informal carers of patients with palliative care needs. Psychometric properties were reported in only 46% (n = 52) of the studies, in relation to 24 measures. Where psychometric data were reported, the focus was mainly on internal consistency (n = 45, 87%), construct validity (n = 27, 52%) and/or reliability (n = 14, 27%). Of these, 24 measures, only four (17%) had been formally validated in informal carers in palliative care. Conclusion: A broad range of outcome measures have been used for informal carers of patients with palliative care needs. Little formal psychometric testing has been undertaken. Furthermore, development and refinement of measures in this field is required. PMID:26407683

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

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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.

Palliative Care in Cancer

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... 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 ...

Fractionated high dose rate intraluminal brachytherapy in palliation of advanced esophageal cancer

International Nuclear Information System (INIS)

Sur, Ranjan K.; Donde, Bernard; Levin, Victor C.; Mannell, Aylwyn

1998-01-01

Purpose: To optimize the dose of fractionated brachytherapy for palliation of advanced esophageal cancer. Methods and Materials: One hundred and seventy-two patients with advanced esophageal cancer were randomized to receive 12 Gy/2 fractions (group A); 16 Gy/2 fractions (group B), and 18 Gy/3 fractions (group C) by high dose rate intraluminal brachytherapy (HDRILBT). Treatment was given weekly and dose prescribed at 1 cm from the source axis. Patients were followed up monthly and assessed for dysphagia relief and development of complications. Results: Twenty-two patients died before completing treatment due to advanced disease and poor general condition. The overall survival was 19.4% at the end of 12 months for the whole group (A--9.8%, B--22.46%, C--35.32%; p > 0.05). The dysphagia-free survival was 28.9% at 12 months for the whole group (A--10.8%, B--25.43%, C--38.95%; p > 0.05). Forty-three patients developed fibrotic strictures needing dilatation (A--5 of 35, B--15 of 60, C--23 of 55; p = 0.032). Twenty-seven patients had persistent luminal disease (A--11, B--6, C--10), 15 of which progressed to fistulae (A--7, B--2, C--6; p = 0.032). There was no effect of age, sex, race, histology, performance status, previous dilation, presenting dysphagia score, presenting weight, grade, tumor length, and stage on overall survival, dysphagia-free, and complication-free survival (p > 0.05). On a multivariate analysis, brachytherapy dose (p = 0.002) and tumor length (p = 0.0209) were found to have a significant effect on overall survival; brachytherapy dose was the only factor that had an impact on local tumor control (p = 0.0005), while tumor length was the only factor that had an effect on dysphagia-free survival (p = 0.0475). When compared to other forms of palliation currently available (bypass surgery, laser, chemotherapy, intubation, external radiotherapy), fractionated brachytherapy gave the best results with a median survival of 6.2 months. Conclusions: Fractionated

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

Improving palliative care through teamwork (IMPACTT) in nursing homes: Study design and baseline findings.

Science.gov (United States)

Temkin-Greener, Helena; Ladwig, Susan; Ye, Zhiqiu; Norton, Sally A; Mukamel, Dana B

2017-05-01

The 2014 Institute of Medicine report recommended that healthcare providers caring for individuals with advanced illness have basic palliative care competencies in communication, inter-professional collaboration, and symptom management. Nursing homes, where one in three American decedents live and die, have fallen short of these competency goals. We implemented an intervention study to examine the efficacy of nursing home-based integrated palliative care teams in improving the quality of care processes and outcomes for residents at the end of life. This paper describes the design, rationale, and challenges of a two-arm randomized controlled trial of nursing home-based palliative care teams in 31 facilities. The impact of the intervention on residents' outcomes is measured with four risk-adjusted quality indicators: place of death (nursing home or hospital), number of hospitalizations, and self-reported pain and depression in the last 90-days of life. The effect of the intervention is also evaluated with regard to staff satisfaction and impact on care processes (e.g. palliative care competency, communication, coordination). Both secondary (e.g. the Minimum Data Set) and primary (e.g. staff surveys) data are employed to examine the effect of the intervention. Several challenges in conducting a complex, nursing home-based intervention have been identified. While sustainability of the intervention without research funding is not clear, we surmise that without changes to the payment model that put palliative care services in this care setting on par with the more "skilled" care, it will not be reasonable to expect any widespread efforts to implement facility-based palliative care services. Copyright © 2017 Elsevier Inc. All rights reserved.

[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

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

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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.

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 - ...

[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.

A matter of definition--key elements identified in a discourse analysis of definitions of palliative care.

Science.gov (United States)

Pastrana, T; Jünger, S; Ostgathe, C; Elsner, F; Radbruch, L

2008-04-01

For more than 30 years, the term "palliative care" has been used. From the outset, the term has undergone a series of transformations in its definitions and consequently in its tasks and goals. There remains a lack of consensus on a definition. The aim of this article is to analyse the definitions of palliative care in the specialist literature and to identify the key elements of palliative care using discourse analysis: a qualitative methodology. The literature search focused on definitions of the term 'palliative medicine' and 'palliative care' in the World Wide Web and medical reference books in English and German. A total of 37 English and 26 German definitions were identified and analysed. Our study confirmed the lack of a consistent meaning concerning the investigated terms, reflecting on-going discussion about the nature of the field among palliative care practitioners. Several common key elements were identified. Four main categories emerged from the discourse analysis of the definition of palliative care: target groups, structure, tasks and expertise. In addition, the theoretical principles and goals of palliative care were discussed and found to be key elements, with relief and prevention of suffering and improvement of quality of life as main goals. The identified key elements can contribute to the definition of the concept 'palliative care'. Our study confirms the importance of semantic and ethical influences on palliative care that should be considered in future research on semantics in different languages.

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.

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

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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

[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.

A Review of Palliative Sedation.

Science.gov (United States)

Bobb, Barton

2016-09-01

Palliative sedation has become a standard practice to treat refractory symptoms at end-of-life. Dyspnea and delirium are the two most commonly treated symptoms. The medications used in palliative sedation are usually benzodiazepines, barbiturates, antipsychotics, and/or anesthetics. Some ethical considerations remain, especially surrounding the use of palliative sedation in psychological distress and existential suffering. Copyright © 2016 Elsevier Inc. All rights reserved.

Improving medical graduates' training in palliative care: advancing education and practice

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Head BA

2016-02-01

Full Text Available Barbara A Head,1 Tara J Schapmire,1 Lori Earnshaw,1 John Chenault,2 Mark Pfeifer,1 Susan Sawning,3 Monica A Shaw,3 1Division of General Internal Medicine, Palliative Care and Medical Education, University of Louisville School of Medicine, 2Kornhouser Health Sciences Library, University of Louisville, 3Undergraduate Medical Education Office, University of Louisville School of Medicine, Louisville, KY, USA Abstract: The needs of an aging population and advancements in the treatment of both chronic and life-threatening diseases have resulted in increased demand for quality palliative care. The doctors of the future will need to be well prepared to provide expert symptom management and address the holistic needs (physical, psychosocial, and spiritual of patients dealing with serious illness and the end of life. Such preparation begins with general medical education. It has been recommended that teaching and clinical experiences in palliative care be integrated throughout the medical school curriculum, yet such education has not become the norm in medical schools across the world. This article explores the current status of undergraduate medical education in palliative care as published in the English literature and makes recommendations for educational improvements which will prepare doctors to address the needs of seriously ill and dying patients. Keywords: medical education, palliative care, end-of-life care

Palliative surgery for pancreatic carcinoma

International Nuclear Information System (INIS)

Khan, I.M.; Aurangzeb, M.

2010-01-01

To evaluate the role of palliative surgical treatment in patients with advanced pancreatic carcinoma. Study Design: Case series. Place and Duration of Study: Surgical Ward of Khyber Teaching Hospital, Peshawar, from January 2005 to January 2009. Methodology: The study included patients with pancreatic carcinoma admitted with advanced, unresectable carcinoma of the pancreas. Patients with resectable tumours and with previous history of gastric or biliary surgery were excluded. Palliative procedures were performed after assessment of the tumour and its confirmation as unresectable on ultrasound and CT scan + ERCP. Postoperatively all patients were referred to oncologist. Complications and mortality were noted. Results: There were 40 patients, including 24 males and 16 females with mean age 58.72 +- 6.42 years. The most common procedure performed was triple bypass in 21 (52.50%) patients followed by choledocho-, cholecysto-, hepaticoand gastro-jejunostomy in various combinations. Wound infection occurred in 7 patients and was more common in patients with co-morbidities. Biliary leakage occurred in 03 patients. Postoperative cholangitis occurred in 3 patients while 7 patients had minor leak from the drain site. Four patients developed UTI, while 5 patients had signs of delayed gastric emptying. Two patients had upper gastrointestinal bleeding. Three patients died due to septicemia and multiple organs failure. Rest of the patients were discharged in stable state. The mean hospital stay was 8.40 +- 3.48 days and median survival was 7.72 +- 2.39 months. Conclusion: Surgical palliation for the advanced carcinoma pancreas can improve the quality of life of patients and is associated with minimum morbidity and mortality. (author)

Production, Quality Control and Biological Evaluation of 166Ho-PDTMP as a Possible Bone Palliation Agent

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Samaneh Zolghadri

2013-05-01

Full Text Available Objective(s:In this study, 166Ho-1,2-propylene di-amino tetra(methy1enephosphonicAcid (166Ho-PDTMP complex  was prepared as a bone palliation agent. Materials and Methods:The complex was successfully prepared using an in-house synthesized EDTMP ligand and 166HoCl3. Ho-166 chloride was obtained by thermal neutron irradiation (1 × 1013 n.cm-2.s-1 of natural Ho(NO33 samples  followed by radiolabeling and stability studies. Biodistribution in wild type rats was also peformed. Results: The complex was prepared with thespecific activity of 278 GBq/mg and high radiochemical purity (>99%, checked by ITLC. 166Ho-PDTMP complex was stabilized in the final preparation and in the presence of human serum (>90% up to 72 hr. The biodistribution of 166Ho-PDTMP in wild-type rats demonstrated significant bone uptake was up to 48 hr compared to 166HoCl3. Conclusion: The produced 166Ho-PDTMP properties suggest a possible new bone palliative therapeutic to overcome the metastatic bone pains.  

The development of the EORTC QLQ-C15-PAL: a shortened questionnaire for cancer patients in palliative care

NARCIS (Netherlands)

Groenvold, Mogens; Petersen, Morten Aa; Aaronson, Neil K.; Arraras, Juan I.; Blazeby, Jane M.; Bottomley, Andrew; Fayers, Peter M.; de Graeff, Alexander; Hammerlid, Eva; Kaasa, Stein; Sprangers, Mirjam A. G.; Bjorner, Jakob B.

2006-01-01

This study aimed at developing a shortened version of the EORTC QLQ-C30, one of the most widely used health-related quality of life questionnaires in oncology, for palliative care research. The study included interviews with 41 patients and 66 health care professionals in palliative care to

Litteraturstudie: akupunktur og palliation

DEFF Research Database (Denmark)

Larsen, Anne Bolt

2013-01-01

af systematiske søgninger fra 2002-2012 i Pubmed, Cochrane, Cinahl og PsykInfo med søgeordene acupuncture and palliation, acupuncture and cancer, acupuncture and placebo, acupuncture and neurophysiology, acupuncture and palliation and nursing. RCT-forskning viser ikke overbevisende effekt af...

Palliative care and the growing health needs of older people in Poland

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Bartłomiej Drop

2017-07-01

Full Text Available The development of medicine and new technologies allows for more effective disease diagnosis and early treatment. Life time was significantly extended for both men and women. Society in Poland and other European countries is aging. The number of people in working age is declining, while the proportion of the oldest age groups is increasing. The aging process is accompanied by an increase in the incidence of senile diseases, chronic diseases such as malignant diseases. The purpose of palliative care is to improve the quality of life of a chronically ill person and family. Palliative care is a holistic approach to the patient, focuses on alleviating suffering, pain, and eliminating psychological, social and spiritual problems. Unfortunately, access to palliative and hospice benefits is still insufficient. Waiting time for health services and especially palliative and hospice care exceeded the socially and medically unacceptable level. Health education is needed to target chronically ill persons, their families and the general public to explain the substance of palliative care, opportunities and what it offers. It is essential for the European countries to respond to the growing health needs of seniors. The reorganization of the health sector should be at local, regional and national levels.

Future of palliative medicine

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Sushma Bhatnagar

2015-01-01

Full Text Available A ′need-supply′ and ′requirement-distribution mismatch′ along with a continuingneed explosion are the biggest hurdles faced by palliative medicine today. It is the need of the hour to provide an unbiased, equitable and evidence-based palliative care to those in need irrespective of the diagnosis, prognosis, social and economic status or geographical location. Palliative care as a fundamental human right, ensuring provision throughout the illness spectrum, global as well as region-specific capacity building, uniform availability of essential drugs at an affordable price, a multidisciplinary team approachand caregiver-support are some of the achievable goals for the future. This supplanted with a strong political commitment, professional dedication and ′public-private partnerships′ are necessaryto tackle the existing hurdles and the exponentially increasing future need. For effectively going ahead it is of utmost importance to integrate palliative medicine into medical education, healthcare system and societal framework.

Palliative Sedation in Patients With Cancer.

Science.gov (United States)

Maltoni, Marco; Setola, Elisabetta

2015-10-01

Palliative sedation involves the use of sedative medication to relieve refractory symptoms in patients by reducing their level of consciousness. Although it is considered an acceptable clinical practice from most ethical points of view, palliative sedation is still a widely debated procedure and merits better understanding. The relevant medical literature pertaining to palliative sedation was analyzed and reviewed from various technical, relational, and bioethical perspectives. Proportionate palliative sedation is considered to be the most clinically appropriate modality for performing palliative sedation. However, guidelines must be followed to ensure that it is performed correctly. Benzodiazepines represent the first therapeutic option and careful monitoring of dosages is essential to avoid oversedation or undersedation. Proportionate palliative sedation is used to manage and relieve refractory symptoms in patients with cancer during their last days or hours of life. Evidence suggests that its use has no detrimental effect on survival. A different decision-making process is used to manage the withdrawal of hydration than the process used to determine whether proportionate palliative sedation is appropriate. Communication between patients, their relatives, and the health care staff is important during this medical intervention.

Spiritual Well-Being for Increasing Life Expectancy in Palliative Radiotherapy Patients: A Questionnaire-Based Study.

Science.gov (United States)

Hematti, Simin; Baradaran-Ghahfarokhi, Milad; Khajooei-Fard, Rasha; Mohammadi-Bertiani, Zohreh

2015-10-01

Spiritual well-being in patients with an advanced cancer has been found to positively correlate with subjective well-being, lower pain levels, hope and positive mood states, high self-esteem, social competence, purpose in life, and overall quality of life. In this regard, Quran recitation is stated to be an efficient way to increase patient spirituality and also to handle life's everyday challenges. The aim of this study was to investigate the effects of listening, reading, and watching the text of the Holy Quran, called (in this study) Quran recitation, for increasing life expectancy (LE) in palliative radiotherapy patients admitted to Radiotherapy Department of Seyed alshohada Hospital, Isfahan, Iran. A questionnaire-based study was carried out on a total of 89 palliative radiotherapy patients between March 2012 and June 2012. Informed consent was obtained. The patients were requested to complete a standardized questionnaire which was designed based on the European Organization for Research and Treatment of Cancer C30 Scale Quality of Life Questionnaire (EORTC C30 Scale QLQ). A computer program (SPSS version 16.0, Chicago, IL, USA) was used, and data were analyzed by the Wilcoxon test and Spearman's rank correlation. All hypotheses were tested using a criterion level of P = 0.05. There was a significant difference for frequency and duration of Quran recitation among patients, before and after the diagnosis of their cancer (P = 0.03). Using the Spearman's rank correlation, it was found that there was a correlation between Quran recitation and subjective well-being (r = 0.352, P Quran recitation and increasing LE (r = 0.311, P Quran are useful for increasing LE in palliative radiotherapy patients admitted to Radiotherapy Department. In other words, a benefit of Quran recitation on outcome of radiotherapy for palliative radiotherapy patients was found.

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.

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

Attachment theory and spirituality: two threads converging in palliative care?

Science.gov (United States)

Loetz, Cécile; Müller, Jakob; Frick, Eckhard; Petersen, Yvonne; Hvidt, Niels Christian; Mauer, Christine

2013-01-01

The aim of this paper is to discuss and explore the interrelation between two concepts, attachment theory and the concept of spirituality, which are important to palliative care and to founding a multivariate understanding of the patient's needs and challenges. Both concepts have been treated by research in diverse and multiform ways, but little effort has yet been made to integrate them into one theoretical framework in reference to the palliative context. In this paper, we begin an attempt to close this scientific gap theoretically. Following the lines of thought in this paper, we assume that spirituality can be conceptualized as an adequate response of a person's attachment pattern to the peculiarity of the palliative situation. Spirituality can be seen both as a recourse to securely based relationships and as an attempt to explore the ultimate unknown, the mystery of one's own death. Thus, spirituality in the palliative context corresponds to the task of attachment behavior: to transcend symbiosis while continuing bonds and thus to explore the unknown environment independently and without fear. Spiritual activity is interpreted as a human attachment behavior option that receives special quality and importance in the terminal stage of life. Implications for clinical practice and research are discussed in the final section of the paper.

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.

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

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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.

Development of a practice tool for community-based nurses: the Heart Failure Palliative Approach to Care (HeFPAC).

Science.gov (United States)

Strachan, Patricia H; Joy, Cathy; Costigan, Jeannine; Carter, Nancy

2014-04-01

Patients living with advanced heart failure (HF) require a palliative approach to reduce suffering. Nurses have described significant knowledge gaps about the disease-specific palliative care (PC) needs of these patients. An intervention is required to facilitate appropriate end-of-life care for HF patients. The purpose of this study was to develop a user-friendly, evidence-informed HF-specific practice tool for community-based nurses to facilitate care and communication regarding a palliative approach to HF care. Guided by the Knowledge to Action framework, we identified key HF-specific issues related to advanced HF care provision within the context of a palliative approach to care. Informed by current evidence and subsequent iterative consultation with community-based and specialist PC and HF nurses, a pocket guide tool for community-based nurses was created. We developed the Heart Failure Palliative Approach to Care (HeFPAC) pocket guide to promote communication and a palliative approach to care for HF patients. The HeFPAC has potential to improve the quality of care and experiences for patients with advanced HF. It will be piloted in community-based practice and in a continuing education program for nurses. The HeFPAC pocket guide offers PC nurses a concise, evidence-informed and practical point-of care tool to communicate with other clinicians and patients about key HF issues that are associated with improving disease-specific HF palliative care and the quality of life of patients and their families. Pilot testing will offer insight as to its utility and potential for modification for national and international use.

A parallel-group randomized clinical trial of individually tailored, multidisciplinary, palliative rehabilitation for patients with newly diagnosed advanced cancer

DEFF Research Database (Denmark)

Nottelmann, Lise; Groenvold, Mogens; Vejlgaard, Tove Bahn

2017-01-01

BACKGROUND: The effect of early palliative care and rehabilitation on the quality of life of patients with advanced cancer has been only sparsely described and needs further investigation. In the present trial we combine elements of early, specialized palliative care with cancer rehabilitation...... in a 12-week individually tailored, palliative rehabilitation program initiated shortly after a diagnosis of advanced cancer. METHODS: This single center, randomized, controlled trial will include 300 patients with newly diagnosed advanced cancer recruited from the Department of Oncology, Vejle Hospital...... initiated shortly after an advanced cancer diagnosis. The study will contribute with evidence on the effectiveness of implementing early palliative care in standard oncology treatment and hopefully offer new knowledge and future directions as to the content of palliative rehabilitation programs. TRIAL...

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.)

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.)

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, ...

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...

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

Palliative Interventional and Surgical Therapy for Unresectable Pancreatic Cancer

International Nuclear Information System (INIS)

Assfalg, Volker; Hüser, Norbert; Michalski, Christoph; Gillen, Sonja; Kleeff, Jorg; Friess, Helmut

2011-01-01

Palliative treatment concepts are considered in patients with non-curatively resectable and/or metastasized pancreatic cancer. However, patients without metastases, but presented with marginally resectable or locally non-resectable tumors should not be treated by a palliative therapeutic approach. These patients should be enrolled in neoadjuvant radiochemotherapy trials because a potentially curative resection can be achieved in approximately one-third of them after finishing treatment and restaging. Within the scope of best possible palliative care, resection of the primary cancer together with excision of metastases represents a therapeutic option to be contemplated in selected cases. Comprehensive palliative therapy is based on treatment of bile duct or duodenal obstruction for certain locally unresectable or metastasized advanced pancreatic cancer. However, endoscopic or percutaneous stenting procedures and surgical bypass provide safe and highly effective therapeutic alternatives. In case of operative drainage of the biliary tract (biliodigestive anastomosis), the prophylactic creation of a gastro-intestinal bypass (double bypass) is recommended. The decision to perform a surgical versus an endoscopic procedure for palliation depends to a great extent on the tumor stage and the estimated prognosis, and should be determined by an interdisciplinary team for each patient individually

Palliative Interventional and Surgical Therapy for Unresectable Pancreatic Cancer

Energy Technology Data Exchange (ETDEWEB)

Assfalg, Volker; Hüser, Norbert; Michalski, Christoph; Gillen, Sonja; Kleeff, Jorg; Friess, Helmut, E-mail: friess@chir.med.tu-muenchen.de [Department of Surgery, Klinikum rechts der Isar, Technische Universität München, Ismaningerstr. 22, D-81675 Munich (Germany)

2011-02-14

Palliative treatment concepts are considered in patients with non-curatively resectable and/or metastasized pancreatic cancer. However, patients without metastases, but presented with marginally resectable or locally non-resectable tumors should not be treated by a palliative therapeutic approach. These patients should be enrolled in neoadjuvant radiochemotherapy trials because a potentially curative resection can be achieved in approximately one-third of them after finishing treatment and restaging. Within the scope of best possible palliative care, resection of the primary cancer together with excision of metastases represents a therapeutic option to be contemplated in selected cases. Comprehensive palliative therapy is based on treatment of bile duct or duodenal obstruction for certain locally unresectable or metastasized advanced pancreatic cancer. However, endoscopic or percutaneous stenting procedures and surgical bypass provide safe and highly effective therapeutic alternatives. In case of operative drainage of the biliary tract (biliodigestive anastomosis), the prophylactic creation of a gastro-intestinal bypass (double bypass) is recommended. The decision to perform a surgical versus an endoscopic procedure for palliation depends to a great extent on the tumor stage and the estimated prognosis, and should be determined by an interdisciplinary team for each patient individually.

Development and validation of a cross-cultural EORTC measure of spiritual wellbeing (swb) for palliative care patients with cancer

NARCIS (Netherlands)

Vivat, B.; Young, T.; Winstanley, J.; Arraras, J. I.; Bennett, M. I.; Brédart, A.; Costantini, A.; Fisher, S. E.; Greimel, E.; Guo, J.; Irarrazaval, M. E.; Kobayashi, K.; Kruizinga, R.; Navarro, M.; Omidvari, S.; Rohde, G. E.; Serpentini, S.; van Laarhoven, H. W. M.; Yang, G.

2014-01-01

Spiritual care and spiritual wellbeing (SWB) are central to palliative care, but no measures of SWB have yet been developed cross-culturally. In 2002 the EORTC Quality of Life (QL) Group began international development of an SWB measure for palliative patients. Three domains of SWB were initially

Assessment of a learning intervention in palliative care based on clinical simulations for nursing students.

Science.gov (United States)

Sarabia-Cobo, Carmen María; Alconero-Camarero, Ana Rosa; Lavín-Alconero, Lucía; Ibáñez-Rementería, Isabel

2016-10-01

Major deficiencies exist in undergraduate nursing education for Palliative Care. Opportunities to care for dying patients are often unavailable to students in traditional clinical settings. Palliative care simulation is an innovative strategy that may help to prepare undergraduate nursing students to provide quality palliative/end of life care. It is valuable to explore the student nurses' beliefs, feelings and satisfaction regarding the impact that simulation clinic applied to palliative care has and how it influenced their overall experience of caring for a dying patient and the patient's family. This study aimed to evaluate a learning intervention in palliative care using a low-fidelity clinical simulation for undergraduate nursing students from a Spanish university, based on the analytics of their expectations and learning objectives. Sixty-eight students participated in this mixed descriptive design study, they participated in a palliative care simulation scenario and completed three questionnaires which assess the knowledge and expectations before the simulation and the subsequent satisfaction with the performance and learning received. The intervention in question met students' learning expectations, singling out social abilities as important tools in palliative care training, and the students were satisfied with the presented case studies. Our results suggest that low-fidelity clinical simulation intervention training in palliative care is an appropriate and low-cost tool for acquiring competitive skills. Learning in the simulation scenarios provides a mechanism for students to improve student communication skills. Copyright © 2016 Elsevier Ltd. All rights reserved.

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.

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

Palliative sedation: not just normal medical practice. Ethical reflections on the Royal Dutch Medical Association's guideline on palliative sedation.

Science.gov (United States)

Janssens, Rien; van Delden, Johannes J M; Widdershoven, Guy A M

2012-11-01

The main premise of the Royal Dutch Medical Association's (RDMA) guideline on palliative sedation is that palliative sedation, contrary to euthanasia, is normal medical practice. Although we do not deny the ethical distinctions between euthanasia and palliative sedation, we will critically analyse the guideline's argumentation strategy with which euthanasia is demarcated from palliative sedation. First, we will analyse the guideline's main premise, which entails that palliative sedation is normal medical treatment. After this, we will critically discuss three crucial propositions of the guideline that are used to support this premise: (1) the patient's life expectancy should not exceed 2 weeks; (2) the aim of the physician should be to relieve suffering and (3) expert consultation is optional. We will conclude that, if inherent problematic aspects of palliative sedation are taken seriously, palliative sedation is less normal than it is now depicted in the guideline.

The Integration of Palliative Care into the Emergency Department

Directory of Open Access Journals (Sweden)

Nursah BASOL

2015-06-01

Full Text Available SUMMARY: Palliative care (PC is a new and developing area. It aims to provide the best possible quality of life for patients with life-limiting diseases. It does not primarily include life-extending therapies, but rather tries to help patients spend the rest of their lives in the best way. PC patients often are admitted to emergency departments during the course of a disease. The approach and management of PC include differences with emergency medicine. Thus, there are some problems while providing PC in the ED. With this article, the definition, main features, benefits, and problems of providing PC are presented, with the primary aim of emphasizing the importance of PC integration into the ED. Key words: Emergency department, integration, palliative care, training

Patient-centered family meetings in palliative care: a quality improvement project to explore a new model of family meetings with patients and families at the end of life.

Science.gov (United States)

Sanderson, Christine R; Cahill, Philippa J; Phillips, Jane L; Johnson, Anne; Lobb, Elizabeth A

2017-12-01

Family meetings in palliative care can enhance communication with family members and identify unmet needs. However, the patient's voice may not be heard. This pre and post-test quality improvement project was conducted from 2013-2014 and investigated a patient-centered family meeting, which is a different approach to palliative care family meetings, to determine its feasibility and acceptability for patients, family and the palliative care team. Newly admitted patients to an Australian in-patient specialist palliative care unit were invited to ask anyone they wished to join them in a meeting with the palliative care team and to identify issues they wished to discuss. Consenting inpatients were interviewed shortly after admission; participated in a family meeting and re-interviewed 2-3 days after the meeting. Family members provided feedback at the end of the meeting. A focus group was held with staff for feedback on this new approach for family meetings. Meetings were observed, documented and thematically analyzed. Thirty-one newly admitted patients were approached to participate in a family meeting. Eighty-four percent had family meetings and the majority (96%) was attended by the patient. Thematic analysis revealed 69% of patient-centered meetings raised end-of-life concerns and 54% were "family-focused". Patient-centered family meetings in palliative care were shown to be feasible and acceptable for staff, patients and family members. Many patients and families spontaneously shared end-of-life concerns. A patient-centered approach to family meetings that includes active patient involvement may provide additional and valued opportunities for patients and families to: express mutual concerns, deliver messages of comfort and appreciation, and prepare for death. Further investigation of this approach, including families' bereavement outcomes, is warranted.

Palliative sedation versus euthanasia: an ethical assessment.

Science.gov (United States)

ten Have, Henk; Welie, Jos V M

2014-01-01

The aim of this article was to review the ethical debate concerning palliative sedation. Although recent guidelines articulate the differences between palliative sedation and euthanasia, the ethical controversies remain. The dominant view is that euthanasia and palliative sedation are morally distinct practices. However, ambiguous moral experiences and considerable practice variation call this view into question. When heterogeneous sedative practices are all labeled as palliative sedation, there is the risk that palliative sedation is expanded to include practices that are actually intended to bring about the patients' death. This troublesome expansion is fostered by an expansive use of the concept of intention such that this decisive ethical concept is no longer restricted to signify the aim in guiding the action. In this article, it is argued that intention should be used in a restricted way. The significance of intention is related to other ethical parameters to demarcate the practice of palliative sedation: terminality, refractory symptoms, proportionality, and separation from other end-of-life decisions. These additional parameters, although not without ethical and practical problems, together formulate a framework to ethically distinguish a more narrowly defined practice of palliative sedation from practices that are tantamount to euthanasia. Finally, the article raises the question as to what impact palliative sedation might have on the practice of palliative care itself. The increasing interest in palliative sedation may reemphasize characteristics of health care that initially encouraged the emergence of palliative care in the first place: the focus on therapy rather than care, the physical dimension rather than the whole person, the individual rather than the community, and the primacy of intervention rather than receptiveness and presence. Copyright © 2014 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.

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.

The Case for Dual Training in Geriatric Medicine and Palliative Care: The Time is Now.

Science.gov (United States)

Gabbard, Jennifer; McNabney, Matthew

2018-02-01

The majority of older adults die from chronic illnesses which are preceded by years of progressive decline and increasing symptom burden. Delivery of high-quality care cannot take place without sufficient numbers of health professionals with appropriate training and skills in both geriatric and palliative care medicine. Despite the surge in aging population and the majority of deaths being attributed to patients with multiple comorbidities, very few health-care providers undergo dual training in these areas. Thus, the nation is facing a health-care crisis as the number of geriatric patients with chronic disease increasingly outpaces the number of physicians with adequate skills to manage them. Joint training in palliative care and geriatric medicine could prepare physicians to better manage our aging population by addressing all their health-care needs irrespective of their stage of disease emphasizing patient-directed care.

A guide to wound managment in palliative care.

Science.gov (United States)

Naylor, Wayne A

2005-11-01

Wound management in palliative patients is often a very challenging area of care. There are many unique issues that can combine to produce complicated wound management scenarios, including the types of wounds and wound symptoms most commonly affecting palliative care patients, as well as the presence of concurrent disease and associated treatment. Problems exist with the availability of suitable dressings and balancing life expectancy with the goals of wound care. A significant, and possibly under-recognized, issue is the emotional and social distress experienced by these patients, which can be directly attributed to their wound. These problems must all be recognized and addressed in order to manage wounds effectively in this patient population. This article aims to explore these issues and offer advice on the management of wound-related symptoms, with the ultimate goal of improving patients' quality of life.

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.

Promoting excellence in end-of-life care: a report on innovative models of palliative care.

Science.gov (United States)

Byock, Ira; Twohig, Jeanne Sheils; Merriman, Melanie; Collins, Karyn

2006-02-01

Promoting Excellence in End-of Life Care, a national program of The Robert Wood Johnson Foundation, funded 22 demonstration projects representing a wide range of health care settings and patient populations to develop innovative models for delivering palliative care that addressed documented deficiencies in the care of patients and families facing the final stage of life. To determine the practicality (feasibility of development and operation as well as acceptance by stakeholders) of new models of care and to determine the impact of the models on access to, quality of and financing for palliative care. The program cannot report scientifically rigorous outcomes, but the grant-funded projects used a variety of methods and measures to assess acceptance of new models and their impact from the perspectives of various stakeholders, including patients and their families, clinicians, administrators and payers. While it is not possible to aggregate data across projects, the data reported to the Promoting Excellence national program office were used to describe program impact with respect to the practicality of palliative care service integration into existing clinical care settings (feasibility and acceptance by stakeholders), the availability and use of palliative care services (access), quality of care (conformance to patient expectations and accepted clinical standards) and costs of care. The 22 projects provided services in urban as well as rural settings, in integrated health systems, hospitals, outpatient clinics, cancer centers, nursing homes, renal dialysis clinics, inner city public health and safety net systems and prisons. Populations served included prison inmates, military veterans, renal dialysis patients, Native Americans, Native Alaskans, and African American patients, inner-city medically underserved patients, pediatric patients, and persons with serious mental illness patients. Hosting or adopting institutions sustained or expanded twenty of the 22 models

Management of levofloxacin induced anaphylaxis and acute delirium in a palliative care setting

Directory of Open Access Journals (Sweden)

Arunangshu Ghoshal

2015-01-01

Full Text Available Levofloxacin is a commonly prescribed antibiotic for managing chest and urinary tract infections in a palliative care setting. Incidence of Levofloxacin-associated anaphylaxis is rare and delirium secondary to Levofloxacin is a seldom occurrence with only few published case reports. It is an extremely rare occurrence to see this phenomenon in combination. Early identification and prompt intervention reduces both mortality and morbidity. A 17-year-old male with synovial sarcoma of right thigh with chest wall and lung metastasis and with no prior psychiatric morbidity presented to palliative medicine outpatient department with community-acquired pneumonia. He was initiated on intravenous (IV Ceftriaxone and IV Levofloxacin. Post IV Levofloxacin patient developed anaphylaxis and acute delirium necessitating IV Hydrocortisone, IV Chlorpheneramine, Oxygen and IV Haloperidol. Early detection and prompt intervention helped in complete recovery. Patient was discharged to hospice for respite after 2 days of hospitalization and then discharged home. Acute palliative care approach facilitated management of two life-threatening medical complications in a palliative care setting improving both quality and length of life.

Palliative care in amyotrophic lateral sclerosis: a review of current international guidelines and initiatives.

LENUS (Irish Health Repository)

Bede, Peter

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.

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.

[Austrian guideline for palliative sedation therapy (long version) : Results of a Delphi process of the Austrian Palliative Society (OPG)].

Science.gov (United States)

Weixler, Dietmar; Roider-Schur, Sophie; Likar, Rudolf; Bozzaro, Claudia; Daniczek, Thomas; Feichtner, Angelika; Gabl, Christoph; Hammerl-Ferrari, Bernhard; Kletecka-Pulker, Maria; Körtner, Ulrich H J; Kössler, Hilde; Meran, Johannes G; Miksovsky, Aurelia; Pusswald, Bettina; Wienerroither, Thomas; Watzke, Herbert

2017-02-01

Palliative sedation therapy (PST) is an important and ethically accepted therapy in the care of selected palliative care patients with otherwise unbearable suffering from refractory distress. PST is increasingly used in end-of-life care. Austria does not have a standardized ethical guideline for this exceptional practice near end of life, but there is evidence that practice varies throughout the country. The Austrian Palliative Society (OPG) nominated a multidisciplinary working group of 16 palliative care experts and ethicists who established the national guideline on the basis of recent review work with the aim to adhere to the Europeans Association of Palliative Care's (EAPC) framework on palliative sedation therapy respecting Austrians legal, structural and cultural background. Consensus was achieved by a four-step sequential Delphi process. The Delphi-process was strictly orientated to the recently published EUROIMPACT-sedation-study-checklist and to the AGREE-2-tool. Additionally national stakeholders participated in the reflection of the results. As a result of a rigorous consensus process the long version of the Austrian National Palliative Sedation Guideline contains 112 statements within eleven domains and is supplemented by a philosophers excursus on suffering. By establishing a national guideline for palliative sedation therapy using the Delphi technique for consensus and stakeholder involvement the Austrian Palliative Society aims to ensure nationwide good practice of palliative sedation therapy. Screening for the practicability and efficacy of this guideline will be a future task.

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.

Attachment Theory and Spirituality: Two Threads Converging in Palliative Care?

Directory of Open Access Journals (Sweden)

Cécile Loetz

2013-01-01

Full Text Available The aim of this paper is to discuss and explore the interrelation between two concepts, attachment theory and the concept of spirituality, which are important to palliative care and to founding a multivariate understanding of the patient’s needs and challenges. Both concepts have been treated by research in diverse and multiform ways, but little effort has yet been made to integrate them into one theoretical framework in reference to the palliative context. In this paper, we begin an attempt to close this scientific gap theoretically. Following the lines of thought in this paper, we assume that spirituality can be conceptualized as an adequate response of a person’s attachment pattern to the peculiarity of the palliative situation. Spirituality can be seen both as a recourse to securely based relationships and as an attempt to explore the ultimate unknown, the mystery of one’s own death. Thus, spirituality in the palliative context corresponds to the task of attachment behavior: to transcend symbiosis while continuing bonds and thus to explore the unknown environment independently and without fear. Spiritual activity is interpreted as a human attachment behavior option that receives special quality and importance in the terminal stage of life. Implications for clinical practice and research are discussed in the final section of the paper.

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.

'Peace' and 'life worthwhile' as measures of spiritual well-being in African palliative care: a mixed-methods study.

Science.gov (United States)

Selman, Lucy; Speck, Peter; Gysels, Marjolein; Agupio, Godfrey; Dinat, Natalya; Downing, Julia; Gwyther, Liz; Mashao, Thandi; Mmoledi, Keletso; Moll, Tony; Sebuyira, Lydia Mpanga; Ikin, Barbara; Higginson, Irene J; Harding, Richard

2013-06-10

Patients with incurable, progressive disease receiving palliative care in sub-Saharan Africa experience high levels of spiritual distress with a detrimental impact on their quality of life. Locally validated measurement tools are needed to identify patients' spiritual needs and evaluate and improve spiritual care, but up to now such tools have been lacking in Africa. The African Palliative Care Association (APCA) African Palliative Outcome Scale (POS) contains two items relating to peace and life worthwhile. We aimed to determine the content and construct validity of these items as measures of spiritual wellbeing in African palliative care populations. The study was conducted at five palliative care services, four in South Africa and one in Uganda. The mixed-methods study design involved: (1) cognitive interviews with 72 patients, analysed thematically to explore the items' content validity, and (2) quantitative data collection (n = 285 patients) using the POS and the Spirit 8 to assess construct validity. (1) Peace was interpreted according to the themes 'perception of self and world', 'relationship to others', 'spiritual beliefs' and 'health and healthcare'. Life worthwhile was interpreted in relation to 'perception of self and world', 'relationship to others' and 'identity'. (2) Conceptual convergence and divergence were also evident in the quantitative data: there was moderate correlation between peace and Spirit 8 spiritual well-being (r = 0.46), but little correlation between life worthwhile and Spirit 8 spiritual well-being (r = 0.18) (both p spiritual well-being in African palliative care. Peace and life worthwhile are brief and simple enough to be integrated into routine practice and can be used to measure this important but neglected outcome in this population.

Advancing palliative care as a human right.

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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

First-Year Analysis of a New, Home-Based Palliative Care Program Offered Jointly by a Community Hospital and Local Visiting Nurse Service.

Science.gov (United States)

Pouliot, Katherine; Weisse, Carol S; Pratt, David S; DiSorbo, Philip

2017-03-01

There is a growing need for home-based palliative care services, especially for seriously ill individuals who want to avoid hospitalizations and remain with their regular outside care providers. To evaluate the effectiveness of Care Choices, a new in-home palliative care program provided by the Visiting Nurse Services of Northeastern New York and Ellis Medicine's community hospital serving New York's Capital District. This prospective cohort study assessed patient outcomes over the course of 1 year for 123 patients (49 men and 74 women) with serious illnesses who were new enrollees in the program. Quality of life was assessed at baseline and after 1 month on service. Satisfaction with care was measured after 1 and 3 months on service. The number of emergency department visits and inpatient hospitalizations pre- and postenrollment was measured for all enrollees. Patients were highly satisfied (72.7%-100%) with their initial care and reported greater satisfaction ( P care service. An in-home palliative care program offered jointly through a visiting nurse service and community hospital may be a successful model for providing quality care that satisfies chronically ill patients' desire to remain at home and avoid hospital admissions.

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...

Biliopancreatic tumors: patient survival and quality of life after palliative treatment Tumores biliopancreáticos: supervivencia y calidad de vida de los pacientes sometidos a tratamiento paliativo

Directory of Open Access Journals (Sweden)

M. V. García Sánchez

2004-05-01

Full Text Available Objectives: to analyse survival and quality of life of patients with malignant obstructive jaundice after palliative treatment, comparing endoscopic stent insertion and palliative surgical (pallative resection and bypass surgical. Patients and method: eighty and seven patients were included in a trial. They were distributed to endoscopic stent (50 and palliative surgical (37. It analysed survival, quality of life and comfort index of jaundiced patients. The good quality of life was defined by absence of jaundice, pruritus and cholangitis after the initial treatment. Results: the median survival of the patients treated to endoscopic stent was 9,6 months whereas the patients to surgical treatment survived a median of 17 months. The time free of disease was 4 months in stented patients and 10,5 months in surgical patients. There was no significant difference in comfort index between the two groups (stented 34%, surgical 42,5%. Neither was there significant difference in survival and quality of life between palliative resection and bypass surgery. Conclusions: despite the survival and time free of disease being better in surgical patients, there was no significant difference in overall quality of life between the two groups. The survival and quality of life are the same after palliative resection as after bypass surgery, for this should not be performed routinely or to justify resection as a debulking procedure.Objetivos: analizar la supervivencia y calidad de vida de los pacientes con ictericia obstructiva maligna sometidos a tratamiento paliativo, y comparar estos resultados en función de la alternativa terapéutica aplicada (prótesis biliar endoscópica frente a cirugía paliativa de resección o derivación biliodigestiva. Pacientes y método: ochenta y siete pacientes fueron incluidos en el estudio que se distribuyeron en dos grupos: a 50 sometidos a drenaje biliar endoscópico con colocación de endoprótesis; y b 37 intervenidos quir

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

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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.

Palliative medicine consultation for preparedness planning in patients receiving left ventricular assist devices as destination therapy.

Science.gov (United States)

Swetz, Keith M; Freeman, Monica R; AbouEzzeddine, Omar F; Carter, Kari A; Boilson, Barry A; Ottenberg, Abigale L; Park, Soon J; Mueller, Paul S

2011-06-01

To assess the benefit of proactive palliative medicine consultation for delineation of goals of care and quality-of-life preferences before implantation of left ventricular assist devices as destination therapy (DT). We retrospectively reviewed the cases of patients who received DT between January 15, 2009, and January 1, 2010. Of 19 patients identified, 13 (68%) received proactive palliative medicine consultation. Median time of palliative medicine consultation was 1 day before DT implantation (range, 5 days before to 16 days after). Thirteen patients (68%) completed advance directives. The DT implantation team and families reported that preimplantation discussions and goals of care planning made postoperative care more clear and that adverse events were handled more effectively. Currently, palliative medicine involvement in patients receiving DT is viewed as routine by cardiac care specialists. Proactive palliative medicine consultation for patients being considered for or being treated with DT improves advance care planning and thus contributes to better overall care of these patients. Our experience highlights focused advance care planning, thorough exploration of goals of care, and expert symptom management and end-of-life care when appropriate.

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

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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.

[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.

Undergraduate curricula in palliative medicine: a systematic analysis based on the palliative education assessment tool.

LENUS (Irish Health Repository)

Schiessi, C

2013-01-01

By law in 2013, palliative medicine will be integrated into the undergraduate curriculum as part of a mandatory training program and examinations at German medical schools. For this reason a national curriculum in palliative medicine has to be developed.

When there are no good choices: illuminating the borderland between proportionate palliative sedation and palliative sedation to unconsciousness.

Science.gov (United States)

Reid, Thomas T; Demme, Richard A; Quill, Timothy E

2011-01-01

Despite state-of-the-art palliative care, some patients will require proportionate palliative sedation as a last-resort option to relieve intolerable suffering at the end of life. In this practice, progressively increasing amounts of sedation are provided until the target suffering is sufficiently relieved. Uncertainty and debate arise when this practice approaches palliative sedation to unconsciousness (PSU), especially when unconsciousness is specifically intended or when the target symptoms are more existential than physical. We constructed a case series designed to highlight some of the common approaches and challenges associated with PSU and the more aggressive end of the spectrum of proportionate palliative sedation as retrospectively identified by palliative care consultants over the past 5 years from a busy inpatient palliative care service at a tertiary medical center in Rochester (NY, USA). Ten cases were identified as challenging by the palliative care attendings, of which four were selected for presentation for illustrative purposes because they touched on central issues including loss of capacity, the role of existential suffering, the complexity of clinical intention, the role of an institutional policy and use of anesthetics as sedative agents. Two other cases were selected focusing on responses to two special situations: a request for PSU that was rejected; and anticipatory planning for total sedation in the future. Although relatively rare, PSU and more aggressive end-of-the-spectrum proportionate palliative sedation represent responses to some of the most challenging cases faced by palliative care clinicians. These complex cases clearly require open communication and collaboration among caregivers, patients and family. Knowing how to identify these circumstances, and how to approach these interventions of last resort are critical skills for practitioners who take care of patients at the end of life.

POSITIVE study: physical exercise program in non-operable lung cancer patients undergoing palliative treatment.

Science.gov (United States)

Wiskemann, Joachim; Hummler, Simone; Diepold, Christina; Keil, Melanie; Abel, Ulrich; Steindorf, Karen; Beckhove, Philipp; Ulrich, Cornelia M; Steins, Martin; Thomas, Michael

2016-07-19

Patients with advanced stage non-small cell lung cancer (NSCLC) or small cell lung cancer (SCLC) often experience multidimensional impairments, affecting quality of life during their course of disease. In lung cancer patients with operable disease, several studies have shown that exercise has a positive impact on quality of life and physical functioning. There is limited evidence regarding efficacy for advanced lung cancer patients undergoing palliative treatment. Therefore, the POSITIVE study aims to evaluate the benefit of a 24-week exercise intervention during palliative treatment in a randomized controlled setting. The POSITIVE study is a randomized, controlled trial investigating the effects of a 24-week exercise intervention during palliative treatment on quality of life, physical performance and immune function in advanced, non-operable lung cancer patients. 250 patients will be recruited in the Clinic for Thoracic Diseases in Heidelberg, enrolment begun in November 2013. Main inclusion criterion is histologically confirmed NSCLC (stage IIIa, IIIb, IV) or SCLC (Limited Disease-SCLC, Extensive Disease-SCLC) not amenable to surgery. Patients are randomized into two groups. Both groups receive weekly care management phone calls (CMPCs) with the goal to assess symptoms and side effects. Additionally, one group receives a combined resistance and endurance training (3x/week). Primary endpoints are quality of life assessed by the Functional Assessment of Cancer Therapy for patients with lung cancer (FACT-L, subcategory Physical Well-Being) and General Fatigue measured by the Multidimensional Fatigue Inventory (MFI-20). Secondary endpoints are physical performance (maximal voluntary isometric contraction, 6-min walk distance), psychosocial (depression and anxiety) and immunological parameters and overall survival. The aim of the POSITIVE trial is the evaluation of effects of a 24-week structured and guided exercise intervention during palliative treatment stages

Palliation of Dysphagia in Carcinoma Esophagus

OpenAIRE

Ramakrishnaiah, Vishnu Prasad Nelamangala; Malage, Somanath; Sreenath, G.S.; Kotlapati, Sudhakar; Cyriac, Sunu

2016-01-01

Esophageal carcinoma has a special place in gastrointestinal carcinomas because it contains two main types, namely, squamous cell carcinoma and adenocarcinoma. Carcinoma esophagus patients require some form of palliation because of locally advanced stage or distant metastasis, where it cannot be subjected to curable treatment with surgery and chemoradiation. Many modalities of palliation of dysphagia are available, but the procedure with least morbidity, mortality, and long-term palliation of...

International variations in clinical practice guidelines for palliative sedation: a systematic review.

Science.gov (United States)

Abarshi, Ebun; Rietjens, Judith; Robijn, Lenzo; Caraceni, Augusto; Payne, Sheila; Deliens, Luc; Van den Block, Lieve

2017-09-01

Palliative sedation is a highly debated medical practice, particularly regarding its proper use in end-of-life care. Worldwide, guidelines are used to standardise care and regulate this practice. In this review, we identify and compare national/regional clinical practice guidelines on palliative sedation against the European Association for Palliative Care (EAPC) palliative sedation Framework and assess the developmental quality of these guidelines using the Appraisal Guideline Research and Evaluation (AGREE II) instrument. Using the PRISMA criteria, we searched multiple databases (PubMed, CancerLit, CINAHL, Cochrane Library, NHS Evidence and Google Scholar) for relevant guidelines, and selected those written in English, Dutch and Italian; published between January 2000 and March 2016. Of 264 hits, 13 guidelines-Belgium, Canada (3), Ireland, Italy, Japan, the Netherlands, Norway, Spain, Europe, and USA (2) were selected. 8 contained at least 9/10 recommendations published in the EAPC Framework; 9 recommended 'pre-emptive discussion of the potential role of sedation in end-of-life care'; 9 recommended 'nutrition/hydration while performing sedation' and 8 acknowledged the need to 'care for the medical team'. There were striking differences in terminologies used and in life expectancy preceding the practice. Selected guidelines were conceptually similar, comparing closely to the EAPC Framework recommendations, albeit with notable variations. Based on AGREE II, 3 guidelines achieved top scores and could therefore be recommended for use in this context. Also, domains 'scope and purpose' and 'editorial independence' ranked highest and lowest, respectively-underscoring the importance of good reportage at the developmental stage. 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/.

Training and career development in palliative care and end-of-life research: opportunities for development in the U.S.

Science.gov (United States)

Aziz, Noreen M; Grady, Patricia A; Curtis, J Randall

2013-12-01

There has been a dramatic increase in attention to the field of palliative care and end-of-life (PCEOL) research over the past 20 years. This increase is particularly notable in the development of palliative care clinical and educational programs. However, there remain important shortcomings in the evidence base to ensure access to and delivery of effective palliative care for patients with life-limiting illness and their families. Development of this evidence base will require that we train the next generation of researchers to focus on issues in PCEOL. The purpose of this article was to explore the current status of the recruitment, training, and retention of future investigators in PCEOL research in the U.S. and propose recommendations to move us forward. Some key contextual issues for developing and supporting this research workforce are articulated, along with timely and important research areas that will need to be addressed during research training and career development. We provide targeted key recommendations to facilitate the nurturing and support of the future research workforce that is needed to ensure the development and implementation of the science necessary for providing high-quality, evidence-based palliative care to all who need and desire it. Copyright © 2013 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.

A new way of organising palliative care for patients with severe chronic obstructive pulmonary disease.

Science.gov (United States)

Lavesen, Marie; Marsa, Kristoffer Bastrup-Madsen; Bove, Dorthe Gaby

2018-02-02

Patients with chronic obstructive pulmonary disease (COPD) often live with unmet palliative needs and low quality of life, although several guidelines recommend that those with COPD should be offered early and integrated palliative care. However, none of the guidelines describe how these recommendations can be operationalised and the current literature offers little information about experiences with developing and implementing new palliative care services. This article offers insight into the experience of developing and implementing a new palliative outpatient structure for patients with severe COPD. All patients are assigned to a nurse who has overall responsibility for establishing and maintaining an individualised relationship with the patient and identifying their needs for care and treatment. Routine outpatient visits are replaced by ad hoc consultations, and patients are seen by pulmonary specialists only when there is a need for medical assessment and treatment or a planned advanced care planning dialogue. The new service was succesfully implemented; however, the changes required good multidisciplinary collaboration, dedicated health professionals and managerial support. This paper highlights the need for further studies to investigate the effectiveness of new palliative care interventions for patients with COPD.

Reaching out to Ray: delivering palliative care services to a homeless person in Melbourne, Australia.

Science.gov (United States)

MacWilliams, Judy; Bramwell, Michael; Brown, Sally; O'Connor, Margaret

2014-02-01

Most terminally ill people express a preference for dying at home. Within established models of palliative care, achieving death at home is a particular challenge for homeless people. This paper describes a quality-improvement project undertaken by a community-based palliative care service in Melbourne, Australia, to understand homeless people's palliative care needs and the challenges that workers face. Six semi-structured interviews with workers in hospital and community-based settings were undertaken and a case study documented. The results were used to initiate discussion about how policy and protocols for the community-based palliative care service might serve this population more effectively. The findings confirmed that homeless people have complex psychosocial and medical needs. They may be periodically uncontactable or living in unsafe settings, experience isolation from social support networks, and have issues of compliance with treatment protocols exacerbated by mental health problems and/or substance abuse. Service providers had particular challenges in meeting the palliative care needs of homeless people. A flexible, compassionate, and coordinated response is required, and more work is needed to explore how the needs of this particular group can be met.

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.

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

Palliative radiotherapy in plasma cell myeloma

International Nuclear Information System (INIS)

Adamietz, I.A.; Schoeber, C.; Schulte, R.W.M.; Renner, K.; Peest, D.

1991-01-01

Pain symptoms caused by bone lesions of multiple myeloma can be relieved by a local irradiation treatment. To estimate the influence of systemic treatment on the palliative effect of local radiotherapy the records of 70 myeloma patients treated with chemotherapy combined with or followed by local irradiation were reviewed. The local response rate, defined as complete pain relief at the irradiated site, was 80 percent in patients receiving irradiation during chemotherapy (melphalan and prednisone) and this palliative effect endured 31.8+-3.6 months. If irradiation was started in the period without systemic treatment the local response rate was 39.6 percent and lasted 24.8+-17.9 months. In sites treated with more than one radiotherapy course 94 percent response after the 1st treatment, 56 percent after the 2nd and no response after the 3rd was achieved. The duration of local pain control was positively related to the applied radiation dose. It is concluded that irradiation during concomitant chemotherapy is superior to radiotherapy performed in a period without systemic treatment. Local long-term palliation can only be achieved by a sufficient high radiation dose. (author). 24 refs.; 2 figs.; 2 tabs

[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.

Development of a Community-Based Palliative Care Model for Advance Cancer Patients in Public Health Centers in Busan, Korea.

Science.gov (United States)

Kim, Sook-Nam; Choi, Soon-Ock; Shin, Seong Hoon; Ryu, Ji-Sun; Baik, Jeong-Won

2017-07-01

A feasible palliative care model for advance cancer patients is needed in Korea with its rapidly aging population and corresponding increase in cancer prevalence. This study describes the process involved in the development of a community-based palliative care (CBPC) model implemented originally in a Busan pilot project. The model development included steps I and II of the pilot project, identification of the service types, a survey exploring the community demand for palliative care, construction of an operational infrastructure, and the establishment of a service delivery system. Public health centers (including Busan regional cancer centers, palliative care centers, and social welfare centers) served as the regional hubs in the development of a palliative care model. The palliative care project included the provision of palliative care, establishment of a support system for the operations, improvement of personnel capacity, development of an educational and promotional program, and the establishment of an assessment system to improve quality. The operational infrastructure included a service management team, provision teams, and a support team. The Busan Metropolitan City CBPC model was based on the principles of palliative care as well as the characteristics of public health centers that implemented the community health projects. The potential use of the Busan CBPC model in Korea should be explored further through service evaluations.

Enhancing the quality of life for palliative care cancer patients in Indonesia through family caregivers: a pilot study of basic skills training.

Science.gov (United States)

Kristanti, Martina Sinta; Setiyarini, Sri; Effendy, Christantie

2017-01-17

Palliative care in Indonesia is problematic because of cultural and socio-economic factors. Family in Indonesia is an integral part of caregiving process in inpatient and outpatient settings. However, most families are not adequately prepared to deliver basic care for their sick family member. This research is a pilot project aiming to evaluate how basic skills training (BST) given to family caregivers could enhance the quality of life (QoL) of palliative care cancer patients in Indonesia. The study is a prospective quantitative with pre and post-test design. Thirty family caregivers of cancer patients were trained in basic skills including showering, washing hair, assisting for fecal and urinary elimination and oral care, as well as feeding at bedside. Patients' QoL were measured at baseline and 4 weeks after training using EORTC QLQ C30. Hypothesis testing was done using related samples Wilcoxon Signed Rank. A paired t-test and one-way ANOVA were used to check in which subgroups was the intervention more significant. The intervention showed a significant change in patients' global health status/QoL, emotional and social functioning, pain, fatigue, dyspnea, insomnia, appetite loss, constipation and financial hardship of the patients. Male patient's had a significant effect on global health status (qol) (p = 0.030); female patients had a significant effect on dyspnea (p = 0.050) and constipation (p = 0.038). Younger patients had a significant effect in global health status/QoL (p = 0.002). Patients between 45 and 54 years old had significant effect on financial issue (p = 0.039). Caregivers between 45 and 54 years old had significant effect on patients' dyspnea (p = 0.031). Basic skills training for family caregivers provided some changes in some aspects of QoL of palliative cancer patients. The intervention showed promises in maintaining the QoL of cancer patients considering socio-economic and cultural challenges in the provision of

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

Labelling of Re-ABP with 188Re for bone pain palliation

International Nuclear Information System (INIS)

Arteaga de Murphy, Consuelo; Ferro-Flores, Guillermina; Pedraza-Lopez, Martha; Melendez-Alafort, Laura; Croft, B.Y.Barbara Y.; Ramirez, Flor de Maria; Padilla, Juan

2001-01-01

Etidronate and medronate have been labelled with technetium-99m ( 99m Tc-HEDP, 99m Tc-MDP) for bone scanning and, with rhenium-188 ( 188 Re-HEDP) to palliate the pain resulting from bone metastases. The objective of this study was to label alendronate, ABP, a new bisphosphonate, with SnF 2 -reduced- 188 Re. The reagents for the 5 mg ABP kit were SnF 2 , KReO 4 and gentisic acid at acid pH. The chemical, spectroscopic and microscopic characteristics, quality control, rat bone uptake of [ 188 Re]Re-ABP and similarities with 99m Tc-ABP are presented. We conclude that this is a promising new radiopharmaceutical for bone metastases pain palliation

How family physicians address diagnosis and management of depression in palliative care patients.

NARCIS (Netherlands)

Warmenhoven, F.C.; Rijswijk, H.C.A.M. van; Hoogstraten, E. van; Spaendonck, K.P.M. van; Lucassen, P.L.B.J.; Prins, J.B.; Vissers, K.; Weel, C. van

2012-01-01

PURPOSE Depression is highly prevalent in palliative care patients. In clinical practice, there is concern about both insufficient and excessive diagnosis and treatment of depression. In the Netherlands, family physicians have a central role in delivering palliative care. We explored variation in

Spirituality and distress in palliative care consultation.

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Hills, Judith; Paice, Judith A; Cameron, Jacqueline R; Shott, Susan

2005-08-01

One's spirituality or religious beliefs and practices may have a profound impact on how the individual copes with the suffering that so often accompanies advanced disease. Several previous studies suggest that negative religious coping can significantly affect health outcomes. The primary aim of this study was to explore the relationship between spirituality, religious coping, and symptoms of distress among a group of inpatients referred to the palliative care consult service. Pilot study. The study was conducted in a large academic medical center with a comprehensive Palliative Care and Home Hospice Program. (1) National Comprehensive Cancer Network Distress Management Assessment Tool; (2) Pargament Brief Religious Coping Scale (Brief RCOPE); (3) Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being (FACIT-Sp); (4) Puchalski's FICA; and (5) Profile of Mood States-Short Form (POMS-SF). The 31 subjects surveyed experienced moderate distress (5.8 +/- 2.7), major physical and psychosocial symptom burden, along with reduced function and significant caregiving needs. The majority (87.2%) perceived themselves to be at least somewhat spiritual, with 77.4% admitting to being at least somewhat religious. Negative religious coping (i.e., statements regarding punishment or abandonment by God) was positively associated with distress, confusion, depression, and negatively associated with physical and emotional well-being, as well as quality of life. Palliative care clinicians should be alert to symptoms of spiritual distress and intervene accordingly. Future research is needed to identify optimal techniques to address negative religious coping.

Evaluation of Knowledge Among Interns in a Medical College Regarding Palliative Care in People Living with HIV/AIDS and the Impact of a Structured Intervention.

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Valsangkar, Sameer; Bodhare, Trupti N; Pande, Shripad B; Bele, Samir D; Rao, B Sitarama

2011-01-01

The evolving nature of palliative care and its renewed role in people living with HIV/AIDS (PLWHA) in the post-HAART (highly active anti-retroviral therapy) era warrants an evaluation of the present curriculum in medical under graduates. The objectives are(1) to measure the existing knowledge regarding palliative care and its application to PLWHA among medical interns and (2) to measure the impact of a structured intervention on knowledge dimensions. Interventional repeated measures study. A convenience sample of 106 interns in the medical college completed a pre-test assessment and a post-test assessment following a structured intervention for evaluation and comparison of knowledge over three dimensions which were (1) knowledge of palliative care and its application in PLWHA, (2) medical symptoms in PLWHA requiring palliative care and (3) psychosocial needs in PLWHA requiring palliative care. The mean scores on knowledge showed a consistent increase after the structured intervention and Student's t-test was significant across three dimensions of knowledge of palliative care and its application (t=9.12, P value <0.001), medical symptoms in PLWHA requiring palliative care (t=12.72, P value <0.001) and psychosocial needs in PLWHA (t=11.14, P value <0.001). In spite of the unique challenges presented by the varying course of illness in PLWHA and the variety of needs on the medical, psychosocial and family dimensions, a structured approach and an integrated course curriculum involving principles of both primary and palliative care principles will improve the efficiency of the undergraduate medical education program and enable delivery of effective palliative care interventions and improve quality of life in PLWHA.

Palliative radiotherapy for local progression of hormone refractory stage D2 prostate cancer

International Nuclear Information System (INIS)

Kawakami, Satoru; Kawai, Tsuneo; Yonese, Junji; Yamauchi, Tamio; Ishibashi, Keiichiro; Ueda, Tomohiro

1993-01-01

From 1970 to 1992, 10 patients with hormone refractory stage D2 adenocarcinoma of the prostate presenting themselves with urinary retention and/or gross hematuria were treated by palliative irradiation for local progression at Cancer Institute Hospital. External beam irradiation was delivered to the primary lesion at dose of 38 Gy to one patient and 30∼27 Gy to seven patients. Five of these patients in whom an urethral catheter had been indwelt were able to void without difficulty following the treatment. Of four patients with severe hematuria resulting from vesical tamponade, none had hematuria after the treatment. These effect lasted until patients' death or more than 11 months follow-up. In other 2 patients, irradiation had to be discontinued at dose less than 20 Gy because of deteriorated general conditions and no significant effect. Complications of the treatment were minimal. These results indicate that the optimal dose of local palliative irradiation is around 30 Gy. Irradiation is a good choice for palliation of locally progressive hormone refactory prostate cancer in view of its certain and long-lasting effect, low invasiveness and minimal complications. When to institute palliative irradiation is one of the most important question in order to secure a good quality of life of patients. From our experiences, it is our belief that if local progression is symptomatic, palliative irradiation should be initiated as soon as possible. (author)

Suboptimal palliative sedation in primary care: an exploration.

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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.

Connecting with patients and instilling realism in an era of emerging communication possibilities: a review on palliative care communication heading to telecare practice

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

2013-01-01

Objective: Appropriate palliative care communication is pivotal to optimizing the quality of life in dying patients and their families. This review aims at describing communication patterns in palliative care and discussing potential relations between communication patterns and upcoming telecare in

Development of a Patient-Reported Palliative Care-Specific Health Classification System: The POS-E.

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Dzingina, Mendwas; Higginson, Irene J; McCrone, Paul; Murtagh, Fliss E M

2017-06-01

Generic preference-based measures are commonly used to estimate quality-adjusted life-years (QALYs) to inform resource-allocation decisions. However, concerns have been raised that generic measures may be inappropriate in palliative care. Our objective was to derive a health-state classification system that is amenable to valuation from the ten-item Palliative Care Outcome Scale (POS), a widely used patient-reported outcome measure in palliative care. The dimensional structure of the original POS was assessed using factor analysis. Item performance was assessed, using Rasch analysis and psychometric criteria, to enable the selection of items that represent the dimensions covered by the POS. Data from six studies of patients receiving palliative care were combined (N = 1011) and randomly split into two halves for development and validation. Analysis was undertaken on the development data, and results were validated by repeating the analysis with the validation dataset. Following Rasch and factor analyses, a classification system of seven items was derived. Each item had two to three levels. Rasch threshold map helped identify a set of 14 plausible health states that can be used for the valuation of the instrument to derive a preference-based index. Combining factor analysis and Rasch analysis with psychometric criteria provides a valid method of constructing a classification system for a palliative care-specific preference-based measure. The next stage is to obtain preference weights so the measure can be used in economic evaluations in palliative care.

International Children's Palliative Care Network: A Global Action Network for Children With Life-Limiting Conditions.

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Marston, Joan; Boucher, Sue; Downing, Julia

2018-02-01

The International Children's Palliative Care Network (ICPCN) is a global network of individuals and organizations working together to reach the estimated 21 million children with life-limiting conditions and life-threatening illnesses. The drive to establish the ICPCN was born from the recognition of the gaps in service provision for children's palliative care and the need to collaborate, network, and share resources. Established in 2005 during a meeting in Seoul, South Korea, the ICPCN has developed over the years into an established network with a global membership. The history of the organization is described, including some of the key events since its inception. Working in collaboration with others, ICPCN has five key focus areas: Communication; Advocacy; Research; Education; and Strategic development, and is the only international charity working globally for the rights of children with palliative care needs. Activities in these areas are discussed, along with the inter-connection between the five areas. Without the ICPCN, palliative care for children would not have developed as far as it has over the years and the organization is committed to ongoing work in this area until all children requiring palliative care have access to quality services, wherever they live around the world. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Palliative care and neurology: time for a paradigm shift.

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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.

Patient- and Caregiver-Reported Assessment Tools for Palliative Care: Summary of the 2017 Agency for Healthcare Research and Quality Technical Brief.

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Aslakson, Rebecca A; Dy, Sydney M; Wilson, Renee F; Waldfogel, Julie; Zhang, Allen; Isenberg, Sarina R; Blair, Alex; Sixon, Joshua; Lorenz, Karl A; Robinson, Karen A

2017-12-01

Assessment tools are data collection instruments that are completed by or with patients or caregivers and which collect data at the individual patient or caregiver level. The objectives of this study are to 1) summarize palliative care assessment tools completed by or with patients or caregivers and 2) identify needs for future tool development and evaluation. We completed 1) a systematic review of systematic reviews; 2) a supplemental search of previous reviews and Web sites, and/or 3) a targeted search for primary articles when no tools existed in a domain. Paired investigators screened search results, assessed risk of bias, and abstracted data. We organized tools by domains from the National Consensus Project Clinical Practice Guidelines for Palliative Care and selected the most relevant, recent, and highest quality systematic review for each domain. We included 10 systematic reviews and identified 152 tools (97 from systematic reviews and 55 from supplemental sources). Key gaps included no systematic review for pain and few tools assessing structural, cultural, spiritual, or ethical/legal domains, or patient-reported experience with end-of-life care. Psychometric information was available for many tools, but few studies evaluated responsiveness (sensitivity to change) and no studies compared tools. Few to no tools address the spiritual, ethical, or cultural domains or patient-reported experience with end-of-life care. While some data exist on psychometric properties of tools, the responsiveness of different tools to change and/or comparisons between tools have not been evaluated. Future research should focus on developing or testing tools that address domains for which few tools exist, evaluating responsiveness, and comparing tools. Copyright © 2017 American Academy of Hospice and Palliative Medicine. All rights reserved.

Guidance on Conducting and REporting DElphi Studies (CREDES) in palliative care: Recommendations based on a methodological systematic review.

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Jünger, Saskia; Payne, Sheila A; Brine, Jenny; Radbruch, Lukas; Brearley, Sarah G

2017-09-01

The Delphi technique is widely used for the development of guidance in palliative care, having impact on decisions with relevance for patient care. To systematically examine the application of the Delphi technique for the development of best practice guidelines in palliative care. A methodological systematic review was undertaken using the databases PubMed, CINAHL, Web of Science, Academic Search Complete and EMBASE. Original articles (English language) were included when reporting on empirical studies that had used the Delphi technique to develop guidance for good clinical practice in palliative care. Data extraction included a quality appraisal on the rigour in conduct of the studies and the quality of reporting. A total of 30 empirical studies (1997-2015) were considered for full-text analysis. Considerable differences were identified regarding the rigour of the design and the reporting of essential process and outcome parameters. Furthermore, discrepancies regarding the use of terms for describing the method were observed, for example, concerning the understanding of a 'round' or a 'modified Delphi study'. Substantial variation was found concerning the quality of the study conduct and the transparency of reporting of Delphi studies used for the development of best practice guidance in palliative care. Since credibility of the resulting recommendations depends on the rigorous use of the Delphi technique, there is a need for consistency and quality both in the conduct and reporting of studies. To allow a critical appraisal of the methodology and the resulting guidance, a reporting standard for Conducting and REporting of DElphi Studies (CREDES) is proposed.

Pediatric Palliative Care: A Personal Story

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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 - ...

Use of podcast technology to facilitate education, communication and dissemination in palliative care: the development of the AmiPal podcast.

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Nwosu, Amara Callistus; Monnery, Daniel; Reid, Victoria Louise; Chapman, Laura

2017-06-01

Podcasts have the potential to facilitate communication about palliative care with researchers, policymakers and the public. Some podcasts about palliative care are available; however, this is not reflected in the academic literature. Further study is needed to evaluate the utility of podcasts to facilitate knowledge-transfer about subjects related to palliative care. The aims of this paper are to (1) describe the development of a palliative care podcast according to international recommendations for podcast quality and (2) conduct an analysis of podcast listenership over a 14-month period. The podcast was designed according to internationally agreed quality indicators for medical education podcasts. The podcast was published on SoundCloud and was promoted via social media. Data were analysed for frequency of plays and geographical location between January 2015 and February 2016. 20 podcasts were developed which were listened to 3036 times (an average of 217 monthly plays). The Rich Site Summary feed was the most popular way to access the podcast (n=1937; 64%). The mean duration of each podcast was 10 min (range 3-21 min). The podcast was listened to in 68 different countries and was most popular in English-speaking areas, of which the USA (n=1372, 45.2%), UK (n=661, 21.8%) and Canada (n=221, 7.3%) were most common. A palliative care podcast is a method to facilitate palliative care discussion with global audience. Podcasts offer the potential to develop educational content and promote research dissemination. Future work should focus on content development, quality metrics and impact analysis, as this form of digital communication is likely to increase and engage wider society. 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/.

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.

Pediatric Palliative Care: A Personal Story

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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: ...

The Use of Humor in Palliative Care: A Systematic Literature Review.

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Pinna, Miguel Ángel Cuervo; Mahtani-Chugani, Vinita; Sánchez Correas, Miguel Ángel; Sanz Rubiales, Alvaro

2018-01-01

Humor has its own place in the context of medicine. Nevertheless, its acceptance by terminal stage patients and health-care professionals has not been studied in depth and is not free from controversy. To understand the significance, appropriateness, and pertinence of the use of humor in palliative care and to analyze its applicability. A narrative systematic review was undertaken and included in PROSPERO. Online searches were carried out on PUBMED, PSYCINFO, EBSCO (CINHAL), EMBASE, SCIELO, SCOPUS, TESEO, WEB of SCIENCE, and COCHRANE between their launch date and December 31, 2015, complemented with manual searches with queries to experts. A total of 156 studies were identified, which were then filtered in pairs by means of an established hierarchy, selecting studies that discussed the use of humor specifically in palliative care from all perspectives and designs, and finally published in Spanish, English, French, or Portuguese. Critical reading of all the selected studies took place, with no exclusions due to quality evaluation. Thirty-four studies were included. Five main topics were identified: (1) definition of humor, (2) use and functions of humor in palliative care, (3) how to use humor, (4) when not to use humor, and (5) humor before and after the diagnosis of terminal illness. Humor plays an unquestionable role in palliative care, but its use needs training and appropriate use.

Palliative cancer care in Middle Eastern countries: accomplishments and challenges †

Science.gov (United States)

Silbermann, M.; Arnaout, M.; Daher, M.; Nestoros, S.; Pitsillides, B.; Charalambous, H.; Gultekin, M.; Fahmi, R.; Mostafa, K.A.H.; Khleif, A.D.; Manasrah, N.; Oberman, A.

2012-01-01

Background In larger parts of the Middle East palliative care is still misunderstood among health professionals, cancer patients and the public at large. One reason to that is because the term does not obviously communicate the intent of this clinical discipline, which is lending better quality of life while combating cancer. Further, culture, tradition and religion have contributed to this misgiving and confusion especially at the terminal stage of the disease. Methods The Middle East Cancer Consortium jointly with the American Society of Clinical Oncology, the American Oncology Nursing Society, the San Diego Hospice Center for Palliative Medicine and the Children's Hospital & Clinics of Minnesota initiated a series of training courses and workshops in the Middle East to provide updated training to physicians, nurses, social workers and psychologists from throughout the region with basic concepts of palliative care and pain managements in adults and children cancers. Results During the past 6 years hundreds of professionals took part in these educational and training activities, thereby creating the core of trained caregivers who start to make the change in their individual countries. Conclusions The outcome of consecutive training activities can overcome geopolitical instabilities, and yield a genuine change in approach of both regulators, medical administrators, medical staff and the public; as to the important contribution of palliative care services to the welfare of the patient and his/her family. PMID:22628412

Palliation of the patient with cancer: Treatment of mind and body

International Nuclear Information System (INIS)

Torpie, R.J.

1987-01-01

It can reasonably be assumed that on any given day in any radiation therapy facility 30% or more of the patients are being treated with palliative intent. Usually half of these patients were previously treated in anticipation of cure or for palliative procedures. The need for repetitive palliative intervention may increase as newer chemotherapeutic agents prolong control and survival of patients with metastatic cancer. There is evidence of a changing pattern of metastatic disease as primary tumors once considered more immediately lethal are now better controlled. This may be true of certain forms of head and neck cancer, as well as of advanced gynecologic cancers. Palliative radiation therapy is directed toward the most oppressive immediate symptoms of the incurable cancer patient, symptoms that do much to destroy the quality of life for what time the patient may have to live in the expected course of his disease. These may include pain, usually severe and incapacitating owing to destruction or fracture of bone, compression of nerve, and vascular occlusion; respiratory and digestive obstruction, hemorrhage; ulceration; malodorous discharge; soft tissue infiltration; disfigurement; obstructive edema; ascites; and severe cachexia. We often lose sight of the fact that although definitive radiation therapy may fail to cure or influence survival, it often does provide the best means of preventing the extreme and flagrant unchecked potentials of the disease

Team networking in palliative care

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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.

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

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.

A case of advanced gastric cancer resected for rebleeding after palliative radiotherapy for hemostasis

International Nuclear Information System (INIS)

Muneoka, Yusuke; Ichikawa, Hiroshi; Ishikawa, Takashi

2016-01-01

We report a case of advanced gastric cancer (AGC) that was resected for rebleeding after palliative radiotherapy for hemostasis. A 74-year-old man with Stage IV gastric cancer received chemotherapy and achieved stable disease. After 23 months, he experienced continuous bleeding from the tumor due to regrowth. Palliative radiotherapy was conducted to control the bleeding, and the tumor successfully achieved hemostasis. However, 6 weeks later, the patient experienced rebleeding and developed hemostatic shock. We then performed a successful emergency gastrectomy. Bleeding negatively affects quality of life in patients with AGC and is potentially lethal. Although palliative radiotherapy for bleeding of gastric cancer is a safe and useful treatment within a short time frame in cases of rebleeding, emergency gastrectomy may be necessary. Therefore, when we select this treatment, the possibility of subsequent surgical treatment must be considered. (author)

EFFICIENT MEASURES FOR BURNOUT PREVENTION IN PALLIATIVE CARE

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Cristina DOBRE

2017-06-01

Full Text Available The term burnout, meaning ”professional exhaustion”, was introduced by Herbert Freudenberger in 1974. On May 21, 2014 , the World Health Assembly, the decisional organ of the World Health Organization, voted the resolution for the integration and development of the capacity of palliative care services as a constituent part of the health systems. The resolution represents a major pace in the development of palliative care at world level, once the ministers responsible for the field took upon themselves - by means of information and training programs - the task of services’ development, mainly at community level, the support from the part of the next of kins, the elaboration of educational programs, of guides and clinical protocols for specialists, of instruments for the monitorization of the quality of services provided, an easier access of patients to medication, as well as partnerships with the civil society. Burnout is a state of emotional, mental and physical overfatigue caused by excessive and prolongued stress. It is installed mainly when the person affected with it feels care-worn and uncapable of fulfilling his/her usual duties. As the stress continues, he/she will come to lose the interest or motivation which made him/her assume a certain position in the organizational hierarchy. The burnout phenomenon includes three components: emotional exhaustion, depersonalization and lack of professional accomplishment. The main observations on the phenomenon indicate that, apparently, the burnout level in palliative care is not higher than in other services, such as intensive therapy or surgery. Nevertheless, mention should be made of a characteristic of the palliative care services which influences the burnout level, namely the emotional relation created between the patient and the medical team, as a result of the prolongued duration of the care services

A Parent's Journey: Incorporating Principles of Palliative Care into Practice for Children with Chronic Neurologic Diseases.

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Brown, Allyson; Clark, Jonna D

2015-09-01

Rather than in conflict or in competition with the curative model of care, pediatric palliative care is a complementary and transdisciplinary approach used to optimize medical care for children with complex medical conditions. It provides care to the whole child, including physical, mental, and spiritual dimensions, in addition to support for the family. Through the voice of a parent, the following case-based discussion demonstrates how the fundamentals of palliative care medicine, when instituted early in the course of disease, can assist parents and families with shared medical decision making, ultimately improving the quality of life for children with life-limiting illnesses. Pediatric neurologists, as subspecialists who provide medical care for children with chronic and complex conditions, should consider invoking the principles of palliative care early in the course of a disease process, either through applying general facets or, if available, through consultation with a specialty palliative care service. Copyright © 2015 Elsevier Inc. All rights reserved.

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.

At-home palliative sedation for end-of-life cancer patients.

Science.gov (United States)

Alonso-Babarro, Alberto; Varela-Cerdeira, Maria; Torres-Vigil, Isabel; Rodríguez-Barrientos, Ricardo; Bruera, Eduardo

2010-07-01

Using a decision-making and treatment checklist developed to facilitate the at-home palliative sedation process, we assessed the incidence and efficacy of palliative sedation for end-of-life cancer patients with intractable symptoms who died at home. We retrospectively reviewed the medical records of 370 patients who were followed by a palliative home care team. Twenty-nine of 245 patients (12%) who died at home had received palliative sedation. The mean age of the patients who received palliative sedation was 58 +/- 17 years, and the mean age of the patients who did not receive palliative sedation was 69 +/- 15 years (p = 0.002). No other differences were detected between patients who did or did not receive palliative sedation. The most common indications for palliative sedation were delirium (62%) and dyspnea (14%). Twenty-seven patients (93%) received midazolam for palliative sedation (final mean dose of 74 mg), and two (7%) received levomepromazine (final mean dose of 125 mg). The mean time between palliative sedation initiation and time of death was 2.6 days. In 13 of the cases (45%), the palliative sedation decision was made with the patient and his or her family members, and in another 13 patients (45%), the palliative sedation decision was made only with the patient's family members. We concluded that palliative sedation may be used safely and efficaciously to treat dying cancer patients with refractory symptoms at home.

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

The role and timing of palliative medicine consultation for women with gynecologic malignancies: association with end of life interventions and direct hospital costs.

Science.gov (United States)

Nevadunsky, Nicole S; Gordon, Sharon; Spoozak, Lori; Van Arsdale, Anne; Hou, Yijuan; Klobocista, Merieme; Eti, Serife; Rapkin, Bruce; Goldberg, Gary L

2014-01-01

Aggressive care interventions at the end of life (ACE) are reported metrics of sub-optimal quality of end of life care that are modifiable by palliative medicine consultation. Our objective was to evaluate the association of inpatient palliative medicine consultation with ACE scores and direct inpatient hospital costs of patients with gynecologic malignancies. A retrospective review of medical records of the past 100 consecutive patients who died from their primary gynecologic malignancies at a single institution was performed. Timely palliative medicine consultation was defined as exposure to inpatient consultation ≥ 30 days before death. Metrics utilized to tabulate ACE scores were ICU admission, hospital admission, emergency room visit, death in an acute care setting, chemotherapy at the end of life, and hospice admission Whitney U, Kaplan-Meier, and Student's T testing. 49% of patients had a palliative medicine consultation and 18% had timely consultation. Median ACE score for patients with timely palliative medicine consultation was 0 (range 0-3) versus 2 (range 0-6) p=0.025 for patients with untimely/no consultation. Median inpatient direct costs for the last 30 days of life were lower for patients with timely consultation, $0 (range 0-28,019) versus untimely, $7729 (0-52,720), p=0.01. Timely palliative medicine consultation was associated with lower ACE scores and direct hospital costs. Prospective evaluation is needed to validate the impact of palliative medicine consultation on quality of life and healthcare costs. © 2013. Published by Elsevier Inc. All rights reserved.

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/.

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.

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

Prevalence, incidence and associated factors of pressure ulcers in home palliative care patients: A retrospective chart review.

Science.gov (United States)

Artico, Marco; Dante, Angelo; D'Angelo, Daniela; Lamarca, Luciano; Mastroianni, Chiara; Petitti, Tommasangelo; Piredda, Michela; De Marinis, Maria Grazia

2018-01-01

Terminally ill patients are at high risk of pressure ulcers, which have a negative impact on quality of life. Data about pressure ulcers' prevalence, incidence and associated factors are largely insufficient. To document the point prevalence at admission and the cumulative incidence of pressure ulcers in terminally ill patients admitted to an Italian home palliative care unit, and to analyse the patients' and caregivers' characteristics associated with their occurrence. Retrospective chart review. Patients ( n = 574) with a life expectancy ⩽6 months admitted to a palliative home care service were included in this study. The prevalence and incidence rates were 13.1% and 13.0%, respectively. The logistic regression models showed body mass index ( p 70 and >1 caregiver at home as the dichotomous variables predictors of presenting with a pressure ulcer at time of admission and during home palliative care. The notable pressure ulcers' incidence and prevalence rates suggest the need to include this issue among the main outcomes to pursue during home palliative care. The accuracy of body mass index, Braden Scale and Karnofsky Performance Scale in predicting the pressure ulcers risk is confirmed. Therefore, they appear as essential tools, in combination with nurses' clinical judgment, for a structured approach to pressure ulcers prevention. Further research is needed to explore the home caregivers' characteristics and attitudes associated with the occurrence of pressure ulcers and the relations between their strategies for pressure ulcer prevention and gender-related patient's needs.

Evaluation of knowledge among Interns in a medical college regarding palliative care in people living with HIV/AIDS and the impact of a structured intervention

Directory of Open Access Journals (Sweden)

Sameer Valsangkar

2011-01-01

Full Text Available Background: The evolving nature of palliative care and its renewed role in people living with HIV/AIDS (PLWHA in the post-HAART (highly active anti-retroviral therapy era warrants an evaluation of the present curriculum in medical under graduates. Objectives: The objectives are (1 to measure the existing knowledge regarding palliative care and its application to PLWHA among medical interns and (2 to measure the impact of a structured intervention on knowledge dimensions. Design and Setting: Interventional repeated measures study. Materials and Methods: A convenience sample of 106 interns in the medical college completed a pre-test assessment and a post-test assessment following a structured intervention for evaluation and comparison of knowledge over three dimensions which were (1 knowledge of palliative care and its application in PLWHA, (2 medical symptoms in PLWHA requiring palliative care and (3 psychosocial needs in PLWHA requiring palliative care. Results: The mean scores on knowledge showed a consistent increase after the structured intervention and Student′s t-test was significant across three dimensions of knowledge of palliative care and its application (t=9.12, P value <0.001, medical symptoms in PLWHA requiring palliative care (t=12.72, P value <0.001 and psychosocial needs in PLWHA (t=11.14, P value <0.001. Conclusion: In spite of the unique challenges presented by the varying course of illness in PLWHA and the variety of needs on the medical, psychosocial and family dimensions, a structured approach and an integrated course curriculum involving principles of both primary and palliative care principles will improve the efficiency of the undergraduate medical education program and enable delivery of effective palliative care interventions and improve quality of life in PLWHA.

Pediatric Palliative Care: A Personal Story

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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 ...

Pediatric Palliative Care: A Personal Story

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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 ...

Patients in palliative care-Development of a predictive model for anxiety using routine data.

Science.gov (United States)

Hofmann, Sonja; Hess, Stephanie; Klein, Carsten; Lindena, Gabriele; Radbruch, Lukas; Ostgathe, Christoph

2017-01-01

Anxiety is one of the most common psychological symptoms in patients in a palliative care situation. This study aims to develop a predictive model for anxiety using data from the standard documentation routine. Data sets of palliative care patients collected by the German quality management benchmarking system called Hospice and Palliative Care Evaluation (HOPE) from 2007 to 2011 were randomly divided into a training set containing two-thirds of the data and a test set with the remaining one-third. We dichotomized anxiety levels, proxy rated by medical staff using the validated HOPE Symptom and Problem Checklist, into two groups with no or mild anxiety versus moderate or severe anxiety. Using the training set, a multivariable logistic regression model was developed by backward stepwise selection. Predictive accuracy was evaluated by the area under the receiver operating characteristic curve (AUC) based on the test set. An analysis of 9924 data sets suggests a predictive model for anxiety in patients receiving palliative care which contains gender, age, ECOG, living situation, pain, nausea, dyspnea, loss of appetite, tiredness, need for assistance with activities of daily living, problems with organization of care, medication with sedatives/anxiolytics, antidepressants, antihypertensive drugs, laxatives, and antibiotics. It results in a fair predictive value (AUC = 0.72). Routinely collected data providing individual-, disease- and therapy-related information contain valuable information that is useful for the prediction of anxiety risks in patients receiving palliative care. These findings could thus be advantageous for providing appropriate support for patients in palliative care settings and should receive special attention in future research.

Interventionist training and intervention fidelity monitoring and maintenance for CONNECT, a nurse-led primary palliative care in oncology trial.

Science.gov (United States)

Robbins-Welty, Gregg A; Mueser, Lisa; Mitchell, Chandler; Pope, Nicole; Arnold, Robert; Park, SeoYoung; White, Doug; Smith, Kenneth J; Reynolds, Charles; Rosenzweig, Margaret; Bakitas, Marie; Schenker, Yael

2018-06-01

Intervention fidelity is a critical component of behavioral research that has received inadequate attention in palliative care studies. With increasing focus on the need for palliative care models that can be widely disseminated and delivered by non-specialists, rigorous yet pragmatic strategies for training interventionists and maintaining intervention fidelity are needed. (1) Describe components of a plan for interventionist training and monitoring and maintaining intervention fidelity as part of a primary palliative care trial (CONNECT) and (2) present data about perceived training effectiveness and delivery of key intervention content. Post-training evaluations, visit checklists, and visit audio-recordings. Data were collected from June, 2016 through April, 2017. We include procedures for (1) identification, training and certification of oncology nurses as CONNECT interventionists; (2) monitoring intervention delivery; and (3) maintaining intervention quality. All nurses (N = 14) felt prepared to deliver key competencies after a 3-day in-person training. As assessed via visit checklists, interventionists delivered an average of 94% (SD 13%) of key content for first intervention visits and 85% (SD 14%) for subsequent visits. As assessed via audio-recordings, interventionists delivered an average of 85% (SD 8%) of key content for initial visits and 85% (SD 12%) for subsequent visits. We present a 3-part strategy for training interventionists and monitoring and maintaining intervention delivery in a primary palliative care trial. Training was effective in having nurses feel prepared to deliver primary palliative care skills. As assessed via nursing checklists and visit audio-recordings, intervention fidelity was high.

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'....

Palliative radiotherapy for local progression of hormone refractory stage D2 prostate cancer

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Kawakami, Satoru; Kawai, Tsuneo; Yonese, Junji; Yamauchi, Tamio; Ishibashi, Keiichiro; Ueda, Tomohiro (Japanese Foundation for Cancer Research, Tokyo (Japan). Hospital)

1993-09-01

From 1970 to 1992, 10 patients with hormone refractory stage D2 adenocarcinoma of the prostate presenting themselves with urinary retention and/or gross hematuria were treated by palliative irradiation for local progression at Cancer Institute Hospital. External beam irradiation was delivered to the primary lesion at dose of 38 Gy to one patient and 30[approx]27 Gy to seven patients. Five of these patients in whom an urethral catheter had been indwelt were able to void without difficulty following the treatment. Of four patients with severe hematuria resulting from vesical tamponade, none had hematuria after the treatment. These effect lasted until patients' death or more than 11 months follow-up. In other 2 patients, irradiation had to be discontinued at dose less than 20 Gy because of deteriorated general conditions and no significant effect. Complications of the treatment were minimal. These results indicate that the optimal dose of local palliative irradiation is around 30 Gy. Irradiation is a good choice for palliation of locally progressive hormone refactory prostate cancer in view of its certain and long-lasting effect, low invasiveness and minimal complications. When to institute palliative irradiation is one of the most important question in order to secure a good quality of life of patients. From our experiences, it is our belief that if local progression is symptomatic, palliative irradiation should be initiated as soon as possible. (author).

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

A social capital framework for palliative care: supporting health and well-being for people with life-limiting illness and their carers through social relations and networks.

Science.gov (United States)

Lewis, Joanne M; DiGiacomo, Michelle; Luckett, Tim; Davidson, Patricia M; Currow, David C

2013-01-01

Social relations and networks are vital for sustaining and enhancing end-of-life care. The social capital concept supports a framework to understand the association between social relations and well-being; yet, to date, there has been very limited investigation of social capital in the palliative care literature. A framework for understanding social contexts in end-of-life care is necessary. To summarize the literature on social capital, well-being, and quality of life for key outcomes to inform a model of social capital in palliative care. The electronic databases MEDLINE (1997 to March 2011), Embase (1997 to March 2011), CINAHL (1997 to March 2011), and PsycINFO (1997 to March 2011) were searched using key/MeSH search terms of "social capital," "palliative care," and "well-being" and/or "quality of life." The literature was reviewed to identify key concepts to develop and inform a palliative care social capital framework. A total of 93 articles were included in the literature review, with only two articles identifying discourse on social capital and palliative care. Four key areas integrating the social capital outcomes informed a framework for palliative care. The social capital concept provides a structure for understanding how the organization and meaning of social contexts can potentially enhance or hinder end-of-life care. Research that identifies specificity in application of social capital concepts is fundamental to issues of access to services, sustaining levels of care, quality of life, and well-being. The importance of "bridged" social capital relations and networks for improved resource acquisition and information flow was identified in the literature and outlined within the palliative care social capital framework. Differential access to social capital by disadvantaged groups provides further impetus to engage a model of social capital for palliative care. Copyright © 2013 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights

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.

Continuous Palliative Sedation for Cancer and Noncancer Patients

NARCIS (Netherlands)

Swart, S.J.; Rietjens, J.A.C.; van Zuylen, L.; Zuurmond, W.W.A.; Perez, R.S.G.M.; van der Maas, P.J.; van Delden, J.J.M.; van der Heide, A.

2012-01-01

Context: Palliative care is often focused on cancer patients. Palliative sedation at the end of life is an intervention to address severe suffering in the last stage of life. Objectives: To study the practice of continuous palliative sedation for both cancer and noncancer patients. Methods: In 2008,

Managing stress in a palliative care team.

Science.gov (United States)

Gupta, Vineeta; Woodman, Clare

2010-12-01

This article describes a strategy to reduce the high levels of stress experienced by community nurses in a children's palliative care team. The development, use and effectiveness of a problem-solving team intervention are illustrated by direct quotations from the nurses themselves.

Specialist palliative care services for adults with advanced, incurable illness in hospital, hospice, or community settings--protocol for a systematic review.

Science.gov (United States)

Gaertner, Jan; Siemens, Waldemar; Antes, Gerd; Meerpohl, Joerg J; Xander, Carola; Schwarzer, Guido; Stock, Stephanie; Becker, Gerhild

2015-09-25

Specialist palliative care (SPC) interventions aim to relieve and prevent suffering in the physical, psychological, social, and spiritual domain. Therefore, SPC is carried out by a multi-professional team with different occupations (e.g., physician, nurse, psychologist, and social worker). Remaining skepticism concerning the need for SPC may be based on the scarcity of high-quality evaluations about the external evidence for SPC. Therefore, we will conduct a systematic review according to Cochrane standards to examine the effects of SPC for adults with advanced illness. The comprehensive systematic literature search will include randomized controlled trials (RCTs) and cluster RCTs. We will search the databases MEDLINE, EMBASE, Cochrane Central Register of Controlled Trials (CENTRAL), and PsycINFO. Patients must be adults suffering from life-limiting diseases. Proxy and caregiver outcomes will not be assessed in order to ensure a clear and well-defined research question for this review. Interventions may be in an in- or outpatient setting, e.g., consulting service, palliative care ward, and palliative outpatient clinic. In line with the multi-dimensional scope of palliative care, the primary outcome is quality of life (QoL). Key secondary outcomes are patients' symptom burden, place of death and survival, and health economic aspects. Subgroup analysis will assess results according to cancer type, age, early vs not early SPC, site of care, and setting. Analysis will be performed with the current RevMan software. We will use the Cochrane Collaboration risk of bias assessment tool. The quality of evidence will be judged according to the Grading of Recommendations Assessment, Development, and Evaluation (GRADE) approach. The available evidence will be summarized and discussed to provide a basis for decision-making among health care professionals and policy makers. For SPC, we believe that multi-professional care is of utmost importance. Therefore, single

Spiritual Assessment within Clinical Interventions Focused on Quality of Life Assessment in Palliative Care: A Secondary Analysis of a Systematic Review

Directory of Open Access Journals (Sweden)

Gianluca Catania

2016-03-01

Full Text Available One of the most crucial palliative care challenges is in determining how patients’ needs are defined and assessed. Although physical and psychological needs are commonly documented in patient’s charts, spiritual needs are less frequently reported. The aim of this review was to determine which explicit, longitudinal documentation of spiritual concerns would sufficiently affect clinical care to alleviate spiritual distress or promote spiritual wellbeing. A secondary analysis of a systematic review originally aimed at appraising the effectiveness of complex interventions focused on quality of life in palliative care was conducted. Five databases were searched for articles reporting interventions focused on QoL including at least two or more QoL dimensions. A narrative synthesis was performed to synthesize findings. In total, 10 studies were included. Only three studies included spiritual wellbeing assessment. Spirituality tools used to assess spiritual wellbeing were different between studies: Hospital QoL Index 14; Spiritual Needs Inventory; Missoula-Vitas QoL Index; and the Needs Assessment Tool: Progressive Disease-Cancer. Only one study reported a healthcare professional’s session training in the use of the QoL tool. Two out of three studies showed in participants an improvement in spiritual wellbeing, but changes in spiritual wellbeing scores were not significant. Overall patients receiving interventions focused on QoL assessment experienced both improvements in their QoL and in their spiritual needs. Although spiritual changes were not significant, the results provide evidence that a spiritual need exists and that spiritual care should be appropriately planned and delivered. Spiritual needs assessment precedes spiritual caring. It is essential that interventions focused on QoL assessment in palliative care include training on how to conduct a spiritual assessment and appropriate interventions to be offered to patients to address their

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.

Palliative sedation in Germany: factors and treatment practices associated with different sedation rate estimates in palliative and hospice care services.

Science.gov (United States)

Stiel, Stephanie; Nurnus, Mareike; Ostgathe, Christoph; Klein, Carsten

2018-03-13

Clinical practice of Palliative Sedation (PS) varies between institutions worldwide and sometimes includes problematic practices. Little available research points at different definitions and frameworks which may contribute to uncertainty of healthcare professionals in the application of PS. This analysis investigates what demographic factors and characteristics of treatment practices differ between institutions with high versus low sedation rates estimates in Palliative and Hospice Care in Germany. Data sets from 221 organisations from a prior online survey were separated into two sub-groups divided by their estimated sedation rate A) lower/equal to 16% (n = 187; 90.8%) and B) higher than 16% (n = 19; 9.2%) for secondary analysis. Demographic factors and characteristics of PS treatment practices between the two groups were compared using T-Tests and Chi 2 / Fisher Exact Tests and considered significant (*) at two-sided p palliative and hospice care representatives show divergence, which may be influenced one by another. A comprehensive framework considering conceptual, clinical, ethical, and legal aspects of different definitions of PS could help to better distinguish between different types and nuances of PS.

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.

Pediatric Palliative Care: A Personal Story

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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 ...

Pediatric Palliative Care: A Personal Story

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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 ...

Oropharyngeal dysphagia: the experience of patients with non-head and neck cancers receiving specialist palliative care.

Science.gov (United States)

Roe, Justin W G; Leslie, Paula; Drinnan, Michael J

2007-10-01

Difficulty swallowing is a well-documented symptom in head and neck cancer and oesophageal malignancy. The frequency of oropharyngeal swallowing difficulties in the palliative phase of other malignancies is less reported. 1) To describe the patient experience of swallowing and associated difficulties while receiving specialist palliative care for malignancies other than those affecting the head and neck and 2) to identify the quality of life issues for the participants with dysphagia and compare with normative and dysphagic data provided by SWAL-QOL. Four month prospective pilot study - questionnaire design. Acute teaching hospital. Eleven patients receiving specialist palliative care. Participants were interviewed using a modified version of the SWAL-QOL, a validated quality of life assessment tool for use specifically with people with oropharyngeal dysphagia. Eight quality of life domains were explored as well as fourteen dysphagic symptoms. Seven of the 11 participants had dysphagic symptoms detailed in the SWAL-QOL and a further two patients reported transient dysphagic symptoms since diagnosis of their disease. Nine participants reported an impact on their quality of life and three reported a considerable impact in four or more domains. Eight of the 11 participants had self-selected softer textured foods. A notable group were three patients with lung cancer and one with lung metastases with a history of vocal fold motion impairment, all of who had experienced dysphagic symptoms since diagnosis. Patients with cancers not affecting the head and neck are at risk of developing symptoms of oropharyngeal dysphagia and subsequently, compromized nutrition, hydration and quality of life. Areas for further research are suggested.

Acceptance of dying: a discourse analysis of palliative care literature.

Science.gov (United States)

Zimmermann, Camilla

2012-07-01

The subject of death denial in the West has been examined extensively in the sociological literature. However, there has not been a similar examination of its "opposite", the acceptance of death. In this study, I use the qualitative method of discourse analysis to examine the use of the term "acceptance" of dying in the palliative care literature from 1970 to 2001. A Medline search was performed by combining the text words "accept or acceptance" with the subject headings "terminal care or palliative care or hospice care", and restricting the search to English language articles in clinical journals discussing acceptance of death in adults. The 40 articles were coded and analysed using a critical discourse analysis method. This paper focuses on the theme of acceptance as integral to palliative care, which had subthemes of acceptance as a goal of care, personal acceptance of healthcare workers, and acceptance as a facilitator of care. For patients and families, death acceptance is a goal that they can be helped to attain; for palliative care staff, acceptance of dying is a personal quality that is a precondition for effective practice. Acceptance not only facilitates the dying process for the patient and family, but also renders care easier. The analysis investigates the intertextuality of these themes with each other and with previous texts. From a Foucauldian perspective, I suggest that the discourse on acceptance of dying represents a productive power, which disciplines patients through apparent psychological and spiritual gratification, and encourages participation in a certain way to die. Copyright © 2012 Elsevier Ltd. All rights reserved.

Wiisokotaatiwin: development and evaluation of a community-based palliative care program in Naotkamegwanning First Nation.

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Nadin, Shevaun; Crow, Maxine; Prince, Holly; Kelley, Mary Lou

2018-04-01

Approximately 474 000 Indigenous people live in 617 First Nations communities across Canada; 125 of those communities are located in Ontario, primarily in rural and remote areas. Common rural health challenges, including for palliative care, involve quality and access. The need for culturally relevant palliative care programs in First Nations communities is urgent because the population is aging with a high burden of chronic and terminal disease. Because local palliative care is lacking, most First Nations people now leave their culture, family and community to receive care in distant hospitals or long-term care homes. Due to jurisdictional issues, a policy gap exists where neither federal nor provincial governments takes responsibility for funding palliative care in First Nations communities. Further, no Canadian program models existed for how different levels of government can collaborate to fund and deliver palliative care in First Nations communities. This article describes an innovative, community-based palliative care program (Wiisokotaatiwin) developed in rural Naotkamegwanning, and presents the results of a process evaluation of its pilot implementation. The evaluation aimed to (i) document the program's pilot implementation, (ii) assess progress toward intended program outcomes and (iii) assess the perceived value of the program. The Wiisokotaatiwin Program was developed and implemented over 5 years using participatory action research (http://www.eolfn.lakeheadu.ca). A mixed-method evaluation approach was adopted. Descriptive data were extracted from program documents (eg client registration forms). Client tracking forms documented service provision data for a 4-month sample period. Quantitative and qualitative data were collected through client and family member questionnaires (n=7) and healthcare provider questionnaires (n=22). A focus group was conducted with the program leadership team responsible for program development. Quantitative data were

Palliative Care

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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 ...

PALLIATIVE CARE IN GERIATRICS: CURRENT ISSUES AND PROSPECTS

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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.

PROGRAM OF PALLIATIVE CANCER CARE – OUR EXPERIENCE

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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.

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

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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

Music therapy in palliative care: current perspectives.

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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.

Is Palliative Care Right for You?

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... 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 ...

Perceptions of family members of palliative medicine and hospice patients who experienced music therapy.

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Gallagher, Lisa M; Lagman, Ruth; Bates, Debbie; Edsall, Melissa; Eden, Patricia; Janaitis, Jessica; Rybicki, Lisa

2017-06-01

Evidence shows that music therapy aids in symptom management and improves quality of life for palliative medicine and hospice patients. The majority of previous studies have addressed patient needs, while only a few addressed the needs of family members. The primary purpose of this study was to understand family members' perceptions of music therapy experienced by a relative in palliative medicine or hospice. Patient self-reported scales and music therapist assessment of change were also investigated. Patients scored their symptoms (pain, anxiety, depression, shortness of breath, and mood) before and after music therapy sessions. One family member present during the session assessed perceived effect on the patient's pain, anxiety, depression, shortness of breath, stress level, restlessness, comfort level, mood, and quality of life. The effect on family member's stress level, quality of life, and mood and helpfulness of the music therapy session for the patient and self were studied. Recommendations about future patient participation in music therapy and qualitative comments were also solicited. Fifty family member/patient dyads participated in the study. Family member perceptions were positive, with 82% of responders indicating improvement for self and patient in stress, mood, and quality of life; 80% rating the session as extremely helpful; and 100% of 49 recommending further music therapy sessions for the patient. Patients reported statistically significant improvement in pain, depression, distress, and mood scores. Family members of patients in palliative medicine and hospice settings reported an immediate positive impact of music therapy on the patient and on themselves. More research needs to be conducted to better understand the benefits of music therapy for family members.

Prevalence of hyponatremia in palliative care patients

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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.

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

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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

Burnout in nurses who work in palliative care: a systematic review

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Iolanda Rosado Mendes da Silva

2015-12-01

Full Text Available This paper is a systematic review of burnout in nurses who work in palliative care. Objectives: To investigate and to analyze the current literature on burnout in nurses of palliative care. Methods: For this systematic review we made searches in electronic databases (CINAHL, MEDLINE, MEDICLATINA, SCIELO in 2009-2015. Results: The burnout affects the nurse, the patient, the family and the team. Nurses are the professional group with higher levels of fatigue and burnout. The work overload, lack of working conditions for the provision of care to the patient and family, the disorganization of work, difficulties in interpersonal relationships with peers and relatives and lack of psychological support in the institution serve as risk factors for developing this syndrome. The mutual affection and support within the team, recognition of his work, seeing the benefit of actions/quality of life and well- -being in patients and family are protective factors. To support policies of hospital workers increase satisfaction levels and help in preventing burnout. Conclusions: There is burnout in nurses in palliative care but at lower levels than nurses working in other services.

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

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Busolo, David; Woodgate, Roberta

2015-01-01

bring about a sense of identity that may encompass a common language and religion. Ethnicity is fluid and should not be confused with nationality or migration or race. In this review, we define ethnicity in relation to the self-identification of participants in studies that will be included in the review.Culture refers to patterns of explanatory models, beliefs, values and customs. These patterns may be informed and expressed in things like diet, clothing or rituals, or in the form of language and social or political systems. Culture may be fluid because of developments in people's lives. In light of the aforementioned definitions, and recognizing the inconsistency in how these terms are sometimes used, the authors of this review define ethnocultural patients, as described in papers to be reviewed, as those who belong to an ethnic group by way of involvement, attachment, self-labelling or attitude towards the group, and who share cultural traditions, ancestry, language, nationality or country of origin.Palliative care in the context of cancer focuses on the improvement of the quality of life of patients by addressing their physical, emotional and spiritual needs, and by supporting their families. Palliative care is often associated with supportive and hospice care. Supportive care emphasizes meeting patients' needs such as physical, mental, social, psychological, emotional and material needs from the period before diagnosis, during diagnosis, treatment to the follow-up period in the cancer trajectory. Hospice care in the context of cancer aims to relieve patients' pain and suffering, and improve their quality of life. Hospice care includes palliative care services and other services such as case management, respite care and bereavement care. Hospice care focuses on patients with terminal illness (i.e. with expected survival of less than six months) and their families. Moreover, hospice care is facilitated by a multidisciplinary team of physicians, nurses, social workers

Application of Transformational Leadership Principles in the Development and Integration of Palliative Care Within an Advanced Heart Failure Program.

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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.

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

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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.