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

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McIlfatrick, Sonja

2007-01-01

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

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.

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

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

2017-06-02

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

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

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Fariba Taleghani

2018-01-01

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

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.

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 ...

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

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

2010-02-01

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

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

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Real, Shirley; Cobbe, Sinead; Slattery, Sinead

2016-07-01

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

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

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

2018-01-09

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

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.

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

Communication about palliative care: A phenomenological study exploring patient views and responses to its discussion.

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Collins, Anna; McLachlan, Sue-Anne; Philip, Jennifer

2018-01-01

Communication about palliative care is a complex task frequently delayed until otherwise unavoidable. There is a need for discussion of palliative care to be viewed as a distinct communication task that is guided by empirical data. However, little is known of patient views and responses to these encounters. To explore patient views surrounding communication about palliative care and their responses to its discussion. Cross-sectional, prospective, exploratory qualitative design, involving narrative-style interviews and underpinned by an interpretative phenomenological framework. Purposively sampled, English-speaking, adult patients with advanced cancer ( n = 30) recruited from cancer services at a tertiary metropolitan hospital in Melbourne, Australia. Three major themes evolved. (1) Death as unspeakable: death was expressed using only implicit, ambiguous or technical terms and perceived to be outside the parameters of medical interactions. (2) Palliative care as a euphemism for death: the term 'palliative care' was perceived to be used by health professionals as a tool to talk about dying and understood by patients as a euphemism for death. (3) Palliative care as unspeakable: 'palliative care' was personified by patients to mean not just death, but my death, in turn, also becoming unspeakable. This study provides important new patient insights and responses to the discussion of palliative care. Results demonstrate that the task of discussing palliative care remains complex, difficult and limited by our language. Greater consistency, sensitivity and sophistication are required when talking about palliative care to patients who may benefit from this care.

Cancer patients, emergencies service and provision of palliative care

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Bruno Miranda

2016-06-01

Full Text Available SUMMARY Objective: To describe the clinical and sociodemographic profile of cancer patients admitted to the Emergency Center for High Complexity Oncologic Assistance, observing the coverage of palliative and home care. Method: Cross sectional study including adult cancer patients admitted to the emergency service (September-December/2011 with a minimum length of hospital stay of two hours. Student’s t-test and Pearson chi-square test were used to compare the means. Results: 191 patients were enrolled, 47.6% elderly, 64.4% women, 75.4% from the city of Recife and greater area. The symptom prevalent at admission was pain (46.6%. 4.2% of patients were linked to palliative care and 2.1% to home care. The most prevalent cancers: cervix (18.3%, breast (13.6% and prostate (10.5%; 70.7% were in advanced stages (IV, 47.1%; 39.4% without any cancer therapy. Conclusion: Patients sought the emergency service on account of pain, probably due to the incipient coverage of palliative and home care. These actions should be included to oncologic therapy as soon as possible to minimize the suffering of the patient/family and integrate the skills of oncologists and emergency professionals.

The comparative palliative care needs of those with heart failure and cancer patients.

LENUS (Irish Health Repository)

O'Leary, Norma

2012-02-01

PURPOSE OF REVIEW: Patients with heart failure seem particularly suited to palliative care having needs that fall within the prototypical palliative care domains. Despite this there is still much debate as to who should respond to these needs and when. RECENT FINDINGS: Since the early 1990s many studies have been published outlining the unmet needs of patients with heart failure. However, there have been limitations to these studies and they have not guided professionals as to how to respond. More recently comparative studies using cancer as the reference have explored similarities and highlighted differences in need between heart failure and cancer patients. These studies are useful for informing future service development. SUMMARY: Patients with heart failure have variable needs and variable disease trajectories. A targeted response to these needs is required. Palliative triggers or transitions should be recognized by professionals caring for patients with heart failure. It is unlikely that either specialist palliative care or medical specialists working in isolation will be sufficiently experienced to respond to these needs. Research is required to determine the effectiveness of different collaborative approaches; heart failure specialist care aligned with palliative care consultancy or heart failure-oriented palliative care services.

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 ...

Danish Palliative Care Database

DEFF Research Database (Denmark)

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

2016-01-01

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

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

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

2018-03-05

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

[Comparison of Patients and their Care in Urban and Rural Specialised Palliative Home Care - A Single Service Analysis].

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Heckel, M; Stiel, S; Frauendorf, T; Hanke, R M; Ostgathe, C

2016-07-01

Specialised outpatient palliative care teams (in Germany called SAPV) aim to ensure best possible end-of-life care for outpatients with complex needs. Information on the influence of living areas (rural vs. urban) on patient and care related aspects is rare. This study aims to explore differences between palliative care patients in urban and rural dwellings concerning their nursing and service characteristics. A retrospective data analysis of documentary data for 502 patients supplied by SAPV team from December 2009 to June 2012 was conducted. Patients and care characteristics were investigated by frequency analysis and were compared for both groups of urban and rural dwelling patients (T test, Chi², Fisher's exact test p care, disease and service related aspects of palliative home care could be detected. An exception is that the rate of re-admittance to hospital is higher for rural dwelling patients (Fisher's exact test p=0.022). Although predominantly presumed, the single service analysis shows - except for the re-admittance rate to hospital - no considerable differences between palliative care patients regarding their living area. Our findings indicate that patients cared for in rural and urban settings have similar needs and impose similar requirements on palliative care teams. © Georg Thieme Verlag KG Stuttgart · New York.

[Dignity in the care of terminal ill and dying patients. Definitions and supportive interventions in palliative care].

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Mehnert, A; Schröder, A S; Puhlmann, K; Müllerleile, U; Koch, U

2006-11-01

Most patients, family members, health care professional as well as volunteers would agree that dignified care and being allowed to die with dignity are superior and unquestionable goals of palliative care. Although the majority of people have a more or less vague concept of dignity and despite its significance for palliative care, only a few empirical approaches to describe the sense of dignity from patients' and health care professionals' perspectives have been undertaken. However, individual descriptions of the dignity concept and definitions can serve as an impetus to improve the current palliative care practice by the development and evaluation of psychotherapeutic interventions for patients near the end of life and the allocation of resources. This article considers an internationally developed empirical-based model of dignity in severe and terminal ill patients by Chochinov et al. Furthermore, it illustrates the understanding of dignity as well as self-perceived exertions of influence on a patient's dignity from the perspective of health care professionals and volunteers. Psychotherapeutic interventions and strategies are introduced that can help conserve the sense of dignity of patients during palliative care.

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

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

2012-06-01

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

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

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Kwang, Ang Yee; Kandiah, Mirnalini

2010-03-01

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

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

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Busolo, David; Woodgate, Roberta

2015-01-01

The objective of this review is to synthesize the best available evidence on palliative care experiences of adult cancer patients from ethnocultural groups.More specifically, this systematic review seeks to answer the following questions:1. What are the palliative care experiences of adult cancer patients from diverse ethnocultural groups?2. What meanings do adult patients with cancer from diverse ethnocultural groups assign to their experiences with palliative care? Globally, over 20.4 million people need palliative care services annually. The majority of these people (19 million) are adults, with 34% of them being patients diagnosed with cancer. With the current increase in the aging population, especially in developed countries, the number of adults requiring palliative care is expected to rise. Furthermore, how palliative care is offered and received continues to be shaped by culture and ethnicity. Likewise, culture and ethnicity influence how palliative care patients experience diseases like cancer, and seek and utilize palliative care services. Also, healthcare providers sometimes find it challenging to address the palliative care needs of patients from different ethnocultural groups. Sometimes these challenges are believed to be due to cultural incompetence of the care provider. When palliative care patients and their providers differ in their perception of care needs and how to address them, negative palliative care experiences are likely to ensue. Therefore, as the demand for palliative care increases, and ethnocultural factors continue to affect palliation, it is important to gain a better understanding of palliative care experiences of patients from different ethnocultural groups.The terms culture and ethnicity have been defined and used differently in literature which sometimes lead to confusion. Ethnicity has been defined as distinctive shared origins or social backgrounds and traditions of a group of people that are maintained between generations and

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

Using social exchange theory to understand non-terminal palliative care referral practices for Parkinson's disease patients.

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Prizer, Lindsay P; Gay, Jennifer L; Perkins, Molly M; Wilson, Mark G; Emerson, Kerstin G; Glass, Anne P; Miyasaki, Janis M

2017-10-01

A palliative approach is recommended in the care of Parkinson's disease patients; however, many patients only receive this care in the form of hospice at the end of life. Physician attitudes about palliative care have been shown to influence referrals for patients with chronic disease, and negative physician perceptions may affect early palliative referrals for Parkinson's disease patients. To use Social Exchange Theory to examine the association between neurologist-perceived costs and benefits of palliative care referral for Parkinson's disease patients and their reported referral practices. A cross-sectional survey study of neurologists. A total of 62 neurologists recruited from the National Parkinson Foundation, the Medical Association of Georgia, and the American Academy of Neurology's clinician database. Participants reported significantly stronger endorsement of the rewards ( M = 3.34, SD = 0.37) of palliative care referrals than the costs ( M = 2.13, SD = 0.30; t(61) = -16.10, p < 0.0001). A Poisson regression found that perceived costs, perceived rewards, physician type, and the number of complementary clinicians in practice were significant predictors of palliative care referral. Physicians may be more likely to refer patients to non-terminal palliative care if (1) they work in interdisciplinary settings and/or (2) previous personal or patient experience with palliative care was positive. They may be less likely to refer if (1) they fear a loss of autonomy in patient care, (2) they are unaware of available programs, and/or (3) they believe they address palliative needs. Initiatives to educate neurologists on the benefits and availability of non-terminal palliative services could improve patient access to this care.

Palliative care content on cancer center websites.

Science.gov (United States)

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

2018-03-01

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

Societal costs of home and hospital end-of-life care for palliative care patients in Ontario, Canada.

Science.gov (United States)

Yu, Mo; Guerriere, Denise N; Coyte, Peter C

2015-11-01

In Canada, health system restructuring has led to a greater focus on home-based palliative care as an alternative to institutionalised palliative care. However, little is known about the effect of this change on end-of-life care costs and the extent to which the financial burden of care has shifted from the acute care public sector to families. The purpose of this study was to assess the societal costs of end-of-life care associated with two places of death (hospital and home) using a prospective cohort design in a home-based palliative care programme. Societal cost includes all costs incurred during the course of palliative care irrespective of payer (e.g. health system, out-of-pocket, informal care-giving costs, etc.). Primary caregivers of terminal cancer patients were recruited from the Temmy Latner Centre for Palliative Care in Toronto, Canada. Demographic, service utilisation, care-giving time, health and functional status, and death data were collected by telephone interviews with primary caregivers over the course of patients' palliative trajectory. Logistic regression was conducted to model an individual's propensity for home death. Total societal costs of end-of-life care and component costs were compared between home and hospital death using propensity score stratification. Costs were presented in 2012 Canadian dollars ($1.00 CDN = $1.00 USD). The estimated total societal cost of end-of-life care was $34,197.73 per patient over the entire palliative trajectory (4 months on average). Results showed no significant difference (P > 0.05) in total societal costs between home and hospital death patients. Higher hospitalisation costs for hospital death patients were replaced by higher unpaid caregiver time and outpatient service costs for home death patients. Thus, from a societal cost perspective, alternative sites of death, while not associated with a significant change in total societal cost of end-of-life care, resulted in changes in the distribution of

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 - ...

Mindfulness for palliative care patients. Systematic review.

Science.gov (United States)

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

A framework for complexity in palliative care: A qualitative study with patients, family carers and professionals.

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Pask, Sophie; Pinto, Cathryn; Bristowe, Katherine; van Vliet, Liesbeth; Nicholson, Caroline; Evans, Catherine J; George, Rob; Bailey, Katharine; Davies, Joanna M; Guo, Ping; Daveson, Barbara A; Higginson, Irene J; Murtagh, Fliss Em

2018-02-01

Palliative care patients are often described as complex but evidence on complexity is limited. We need to understand complexity, including at individual patient-level, to define specialist palliative care, characterise palliative care populations and meaningfully compare interventions/outcomes. To explore palliative care stakeholders' views on what makes a patient more or less complex and insights on capturing complexity at patient-level. In-depth qualitative interviews, analysed using Framework analysis. Semi-structured interviews across six UK centres with patients, family, professionals, managers and senior leads, purposively sampled by experience, background, location and setting (hospital, hospice and community). 65 participants provided an understanding of complexity, which extended far beyond the commonly used physical, psychological, social and spiritual domains. Complexity included how patients interact with family/professionals, how services' respond to needs and societal perspectives on care. 'Pre-existing', 'cumulative' and 'invisible' complexity are further important dimensions to delivering effective palliative and end-of-life care. The dynamic nature of illness and needs over time was also profoundly influential. Adapting Bronfenbrenner's Ecological Systems Theory, we categorised findings into the microsystem (person, needs and characteristics), chronosystem (dynamic influences of time), mesosystem (interactions with family/health professionals), exosystem (palliative care services/systems) and macrosystem (societal influences). Stakeholders found it acceptable to capture complexity at the patient-level, with perceived benefits for improving palliative care resource allocation. Our conceptual framework encompasses additional elements beyond physical, psychological, social and spiritual domains and advances systematic understanding of complexity within the context of palliative care. This framework helps capture patient-level complexity and target

Psychosocial issues in palliative care

African Journals Online (AJOL)

Repro

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

Transforming doctor-patient relationships to promote patient-centered care: lessons from palliative care.

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Yedidia, Michael J

2007-01-01

Palliative care was studied for its potential to yield lessons for transforming doctor-patient relationships to promote patient-centered care. Examination of patient and provider experiences of the transition from curative to palliative care promises valuable insights about establishing and maintaining trust as the goals of care shift and about addressing a broad spectrum of patient needs. The study was guided by a conceptual framework grounded in existing models to address five dimensions of doctor-patient relationships: range of needs addressed, source of authority, maintenance of trust, emotional involvement, and expression of authenticity. Data collection included observation of the care of 40 patients in the inpatient hospice unit and at home, interviews with patients and family members, and in-depth interviews with 22 physicians and two nurses providing end-of-life care. Standard qualitative procedures were used to analyze the data, incorporating techniques for maximizing the validity of the results and broadening their relevance to other contexts. Findings provide evidence for challenging prominent assumptions about possibilities for doctor-patient relationships: questioning the merits of the prohibition on emotional involvement, dependence on protocols for handling difficult communication issues, unqualified reliance on consumer empowerment to assure that care is responsive to patients' needs, and adoption of narrowly defined boundaries between medical and social service systems in caring for patients. Medical education can play a role in preparing doctors to assume new roles by openly addressing management of emotions in routine clinical work, incorporating personal awareness training, facilitating reflection on interactions with patients through use of standardized patients and videotapes, and expanding capacity to effectively address a broad range of needs through teamwork training.

How do GPs recognize needs for palliative care in their patients?

NARCIS (Netherlands)

Claessen, S.J.; Francke, A.L.; Deliens, L.

2012-01-01

Aim: The aim of this study was to explore how GPs in the Netherlands recognize patients’ needs for palliative care. Methods: We conducted qualitative semi-structured interviews with about 25 GPs. These GPs were interviewed about recognition of the needs for palliative care in their patients and how

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.

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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

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

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

2014-07-01

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

Integration of early specialist palliative care in cancer care: Survey of oncologists, oncology nurses, and patients

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Naveen Salins

2016-01-01

Conclusion: Oncologists, oncology nurses, and patients felt that integration of early specialist palliative care in cancer improves symptom control, end-of-life care, health-related communication, and continuity of care. The perceptions of benefit of the palliative care intervention in the components surveyed, differed among the three groups.

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

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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.

Future care planning: a first step to palliative care for all patients with advanced heart disease.

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Denvir, M A; Murray, S A; Boyd, K J

2015-07-01

Palliative care is recommended for patients with end-stage heart failure with several recent, randomised trials showing improvements in symptoms and quality of life and more studies underway. Future care planning provides a framework for discussing a range of palliative care problems with patients and their families. This approach can be introduced at any time during the patient's journey of care and ideally well in advance of end-of-life care. Future care planning is applicable to a wide range of patients with advanced heart disease and could be delivered systematically by cardiology teams at the time of an unplanned hospital admission, akin to cardiac rehabilitation for myocardial infarction. Integrating cardiology care and palliative care can benefit many patients with advanced heart disease at increased risk of death or hospitalisation. Larger, randomised trials are needed to assess the impact on patient outcomes and experiences. 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.

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

Science.gov (United States)

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

2017-10-01

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

Barriers and facilitators to palliative care of patients with chronic heart failure in Germany: a study protocol

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Stefan Köberich

2015-07-01

Full Text Available Background. Despite its high prevalence, similar symptoms and symptom burden, people suffering from chronic heart failure receive less palliative care than patients with malignant diseases. Internationally, numerous barriers to palliative care of patients with chronic heart failure are known, however, there are no credible data regarding barriers and facilitators to palliative care of people suffering from chronic heart failure available for Germany. Design and Methods. Tripartite study. First part of this study evaluates health care providers’ (physicians and nurses perceived barriers and facilitators to palliative care of patients with chronic heart failure using a qualitative approach. At least 18 persons will be interviewed. In the second part, based on the results of part one, a questionnaire about barriers and facilitators to palliative care of patients with chronic heart failure will be designed and applied to at least 150 physicians and nurses. In the last part a classic Delphi method will be used to develop specific measures to improve the palliative care for chronic heart failure patients. Expected Impact for Public Health. The results of this study will help to understand why patients with heart failure are seldom referred to palliative care and will provide solutions to overcome these barriers. Developed solutions will be the first step to improve palliative care in patients with heart failure in Germany. In addition, the results will help health care providers in other countries to take action to improve palliative care situations for heart failure patients.

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.

A conceptual model: Redesigning how we provide palliative care for patients with chronic obstructive pulmonary disease.

Science.gov (United States)

Philip, Jennifer; Crawford, Gregory; Brand, Caroline; Gold, Michelle; Miller, Belinda; Hudson, Peter; Smallwood, Natasha; Lau, Rosalind; Sundararajan, Vijaya

2017-05-31

Despite significant needs, patients with chronic obstructive pulmonary disease (COPD) make limited use of palliative care, in part because the current models of palliative care do not address their key concerns. Our aim was to develop a tailored model of palliative care for patients with COPD and their family caregivers. Based on information gathered within a program of studies (qualitative research exploring experiences, a cohort study examining service use), an expert advisory committee evaluated and integrated data, developed responses, formulated principles to inform care, and made recommendations for practice. The informing studies were conducted in two Australian states: Victoria and South Australia. A series of principles underpinning the model were developed, including that it must be: (1) focused on patient and caregiver; (2) equitable, enabling access to components of palliative care for a group with significant needs; (3) accessible; and (4) less resource-intensive than expansion of usual palliative care service delivery. The recommended conceptual model was to have the following features: (a) entry to palliative care occurs routinely triggered by clinical transitions in care; (b) care is embedded in routine ambulatory respiratory care, ensuring that it is regarded as "usual" care by patients and clinicians alike; (c) the tasks include screening for physical and psychological symptoms, social and community support, provision of information, and discussions around goals and preferences for care; and (d) transition to usual palliative care services is facilitated as the patient nears death. Our proposed innovative and conceptual model for provision of palliative care requires future formal testing using rigorous mixed-methods approaches to determine if theoretical propositions translate into effectiveness, feasibility, and benefits (including economic benefits). There is reason to consider adaptation of the model for the palliative care of patients with

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.

Post-Acute Care Facility as a Discharge Destination for Patients in Need of Palliative Care in Brazil.

Science.gov (United States)

Soares, Luiz Guilherme L; Japiassu, André M; Gomes, Lucia C; Pereira, Rogéria

2018-02-01

Patients with complex palliative care needs can experience delayed discharge, which causes an inappropriate occupancy of hospital beds. Post-acute care facilities (PACFs) have emerged as an alternative discharge destination for some of these patients. The aim of this study was to investigate the frequency of admissions and characteristics of palliative care patients discharged from hospitals to a PACF. We conducted a retrospective analysis of PACF admissions between 2014 and 2016 that were linked to hospital discharge reports and electronic health records, to gather information about hospital-to-PACF transitions. In total, 205 consecutive patients were discharged from 6 different hospitals to our PACF. Palliative care patients were involved in 32% (n = 67) of these discharges. The most common conditions were terminal cancer (n = 42, 63%), advanced dementia (n = 17, 25%), and stroke (n = 5, 8%). During acute hospital stays, patients with cancer had significant shorter lengths of stay (13 vs 99 days, P = .004), a lower use of intensive care services (2% vs 64%, P care. Further studies are necessary to understand the trajectory of posthospitalized patients with life-limiting illnesses and what factors influence their decision to choose a PACF as a discharge destination and place of death. We advocate that palliative care should be integrated into the portfolio of post-acute services.

Palliative care and neurology: time for a paradigm shift.

Science.gov (United States)

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

2014-08-05

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

Effectiveness of palliative home-care services in reducing hospital admissions and determinants of hospitalization for terminally ill patients followed up by a palliative home-care team: a retrospective cohort study.

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Riolfi, Mirko; Buja, Alessandra; Zanardo, Chiara; Marangon, Chiara Francesca; Manno, Pietro; Baldo, Vincenzo

2014-05-01

It has been demonstrated that most patients in the terminal stages of cancer would benefit from palliative home-care services. The aim of this study was to assess the effectiveness of appropriate palliative home-care services in reducing hospital admissions, and to identify factors predicting the likelihood of patients treated at home being hospitalized. Retrospective cohort study. We enrolled all 402 patients listed by the Local Health Authority No. 5, Veneto Region (North-East Italy), as dying of cancer in 2011. Of the cohort considered, 39.9% patients had been taken into care by a palliative home-care team. Irrespective of age, gender, and type of tumor, patients taken into care by the palliative home-care team were more likely to die at home, less likely to be hospitalized, and spent fewer days in hospital in the last 2 months of their life. Among the patients taken into care by the palliative home-care team, those with hematological cancers and hepatocellular carcinoma were more likely to be hospitalized, and certain symptoms (such as dyspnea and delirium) were predictive of hospitalization. Our study confirms the effectiveness of palliative home care in enabling patients to spend the final period of their lives at home. The services of a palliative home-care team reduced the consumption of hospital resources. This study also provided evidence of some types of cancer (e.g. hematological cancers and hepatocellular carcinoma) being more likely to require hospitalization, suggesting the need to reconsider the pathways of care for these diseases.

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.

Pediatric Palliative Care Initiative in Cambodia

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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

Life perceptions of patients receiving palliative care and experiencing psycho-social-spiritual healing.

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Li, Lingsheng; Sloan, Danetta H; Mehta, Ambereen K; Willis, Gordon; Weaver, Meaghann S; Berger, Ann C

2017-07-01

It is important to identify, from the patients' perspectives, the different factors that contribute toward psycho-social-spiritual healing. This was a qualitative study that took place at a large research center, an underserved clinic, and a community hospital. We used a needs assessment questionnaire and open-ended questions to assess the constituents of psycho-social-spiritual healing: (I) how previous life experiences affected patients' present situations in dealing with their illnesses; (II) barriers to palliative care, and (III) benefits of palliative care. Of a total of 30 participants from 3 different study sites, 24 (80%) were receiving inpatient or outpatient palliative care at a research center. Thirteen (43%) participants were female, 10 (33%) were Black/African American, and 16 (53%) reported being on disability. While the initial shock of the diagnosis made participants feel unprepared for their illnesses, many looked to role models, previous work experiences, and spiritual as well as religious support as sources of strength and coping mechanisms. Barriers to palliative care were identified as either external (lack of proper resources) or internal (symptom barriers and perceived self-limitations). The feeling of "being seen/being heard" was perceived by many participants as the most beneficial aspect of palliative care. The needs assessment questionnaire and open-ended questions presented in this study may be used in clinical settings to better help patients achieve psycho-social-spiritual healing through palliative care and to help clinicians learn about the person behind the patient.

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.

A Study of the Association Between Multidisciplinary Home Care and Home Death Among Thai Palliative Care Patients.

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Nagaviroj, Kittiphon; Anothaisintawee, Thunyarat

2017-06-01

Many terminally ill patients would prefer to stay and die in their own homes, but unfortunately, some may not be able to do so. Although there are many factors associated with successful home deaths, receiving palliative home visits from the multidisciplinary care teams is one of the key factors that enable patients to die at home. Our study was aimed to find whether there was any association between our palliative home care program and home death. A retrospective study was conducted in the Department of Family Medicine at Ramathibodi Hospital between January 2012 and May 2014. All of the patients who were referred to multidisciplinary palliative care teams were included. The data set comprised of patient's profile, disease status, functional status, patient's symptoms, preferred place of death, frequency of home visits, types of team interventions, and patient's actual place of death. Multiple logistic regression was applied in order to determine the association between the variables and the probability of dying at home. A total of 142 patients were included into the study. At the end of the study, 50 (35.2%) patients died at home and 92 (64.8%) patients died in the hospital. The multivariate logistic regression analysis demonstrated a strong association between multidisciplinary home care and home death (odds ratio 6.57, 95% confidence interval [CI] 2.48-17.38). Palliative home care was a significant factor enabling patients who want to die at home. We encourage health policy makers to promote the development of community-based palliative care programs in Thailand.

Strategies for Introducing Outpatient Specialty Palliative Care in Gynecologic Oncology.

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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.

Feasibility of hospital-initiated non-facilitator assisted advance care planning documentation for patients with palliative care needs.

Science.gov (United States)

Kok, Maaike; van der Werff, Gertruud F M; Geerling, Jenske I; Ruivenkamp, Jaap; Groothoff, Wies; van der Velden, Annette W G; Thoma, Monique; Talsma, Jaap; Costongs, Louk G P; Gans, Reinold O B; de Graeff, Pauline; Reyners, Anna K L

2018-05-24

Advance Care Planning (ACP) and its documentation, accessible to healthcare professionals regardless of where patients are staying, can improve palliative care. ACP is usually performed by trained facilitators. However, ACP conversations would be more tailored to a patient's specific situation if held by a patient's clinical healthcare team. This study assesses the feasibility of ACP by a patient's clinical healthcare team, and analyses the documented information including current and future problems within the palliative care domains. This multicentre study was conducted at the three Groningen Palliative Care Network hospitals in the Netherlands. Patients discharged from hospital with a terminal care indication received an ACP document from clinical staff (non-palliative care trained staff at hospitals I and II; specialist palliative care nurses at hospital III) after they had held ACP conversations. An anonymised copy of this ACP document was analysed. Documentation rates of patient and contact details were investigated, and documentation of current and future problems were analysed both quantitatively and qualitatively. One hundred sixty ACP documents were received between April 2013 and December 2014, with numbers increasing for each consecutive 3-month time period. Advance directives were frequently documented (82%). Documentation rates of current problems in the social (24%), psychological (27%) and spiritual (16%) domains were low compared to physical problems (85%) at hospital I and II, but consistently high (> 85%) at hospital III. Of 545 documented anticipated problems, 92% were physical or care related in nature, 2% social, 5% psychological, and will improve identification and documentation of non-physical problems remains to be investigated.

Palliative Care in Heart Failure

Directory of Open Access Journals (Sweden)

Hatice Mert

2012-04-01

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

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

Demoralization Scale in Spanish-Speaking Palliative Care Patients.

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

2016-04-01

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

Palliative Care for Patients and Families With Parkinson's Disease

NARCIS (Netherlands)

Bouca-Machado, R.; Titova, N.; Chaudhuri, K.R.; Bloem, B.R.; Ferreira, J.J.

2017-01-01

Parkinson's disease is the second most common neurodegenerative disease worldwide. There is widespread consensus that Parkinson patients, their carers, and clinicians involved in their care would benefit from a fully integrated, need-based provision of palliative care. However, the concept of

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.

Which cancer patients are referred to hospital at home for palliative care?

OpenAIRE

Grande, G. E.; McKerral, A.; Todd, C. J.

2002-01-01

Previous research has shown that palliative home care use is influenced by variables such as age, socioeconomic status, presence of an informal carer, diagnosis, and care dependency. However, there is little information on its association with other health service use. This study compared 121 cancer patients referred to Hospital at Home (HAH) for palliative care with a sample of 206 cancer patients not referred who died within the same period. Electronic record linkage of NHS databases enable...

Bed care for patients in palliative settings: considering risks to caregivers and bed surfaces.

Science.gov (United States)

Fragala, Guy

2015-02-01

Ensuring patients are comfortable in bed is key to effective palliative care, but when moving and positioning patients in bed, health professionals face an occupational risk of injury. The turning and positioning (TAP) system is a new method of moving patients in bed, that evidence has shown to reduce the risk of injury to caregivers. Providing the correct bed surface is another aspect of bed care essential to the comfort of the palliative patient, and to aid wound prevention and treatment. It is important to take a patient-centred approach when considering the most appropriate bed surface patients. This article provides an overview and discussion of these two aspects of bed care for palliative patients.

Palliative Care in Romania.

Science.gov (United States)

Mosoiu, Daniela; Mitrea, Nicoleta; Dumitrescu, Malina

2018-02-01

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

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.

[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.

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

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

2017-01-01

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

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.

Music therapy for palliative care: A realist review.

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McConnell, Tracey; Porter, Sam

2017-08-01

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

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

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

Directory of Open Access Journals (Sweden)

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

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

Science.gov (United States)

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.

Palliative Care Office Hours for Patients with Hematologic Malignancies: An Innovative Model for Symptom Management and Education.

Science.gov (United States)

Foxwell, Anessa M; Moyer, Mary E; Casarett, David J; O'Connor, Nina R

2017-10-01

Palliative care programs are experiencing rapid growth, with demand for consults surpassing staffing. Innovative models are needed to equip nonpalliative care providers to manage basic palliative care issues. To develop a novel program of palliative care office hours for hematologic oncology advanced practice providers, and to evaluate its impact on palliative care consult volume and composition. A palliative care nurse practitioner or pharmacist was available for weekday office hours to all inpatient hematologic oncology advanced practice providers at an academic medical center to offer advice on pain, nonpain symptoms, and psychosocial distress. A retrospective study looking at outcome measures after six months of office hour utilization and palliative care consults from the hematologic oncology services. Palliative care office hours had a mean duration of 16 minutes per day (range 5 to 55). A mean of 11 patients were discussed per week (range 4 to 20). Pain, nausea, and anxiety were the issues most frequently raised. Of 299 patients discussed during office hours, 44 (14.7%) subsequently required a full palliative care consult. Overall, palliative care consults from the hematologic oncology services decreased from 19.6% to 10.2% of admissions (87/445 vs. 61/594, p Office hours are an efficient way to address palliative care needs when demand for palliative care consults exceeds capacity. Office hours may serve an educational function as well, enabling primary teams to manage basic palliative care issues with increasing independence over time.

Palliative Care: A Partnership Across the Continuum of Care.

Science.gov (United States)

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

2016-01-01

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

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....

Providing palliative care to patients with cancer: Addressing the needs in Kenya

Directory of Open Access Journals (Sweden)

Pam Malloy

2017-01-01

Full Text Available Cancer is the third highest cause of death in Kenya, preceded by infectious and cardiovascular diseases, and in most cases, diagnosed in later stages. Nurses are the primary caregivers, assessing and managing these patients in the clinic, in inpatient settings, and in rural and remote communities. While cancer rates remain high, the burden to the patient, the caregiver, and society as a whole continues to rise. Kenya's poverty complicates cancer even further. Many Kenyans are unaware of cancer's signs and symptoms, and limited diagnostic and treatment centers are available. Despite these barriers, there is still hope and help for those in Kenya, who suffer from cancer. The World Health Organization has stated that palliative care is a basic human right and nurses providing this care in Kenya are making efforts to support cancer patients' ongoing needs, in order to promote compassionate palliative care and prevent suffering. The purpose of this paper is to address the palliative care needs of patients with cancer in Kenya by providing education to nurses and influencing health-care policy and education at micro and macro levels. A case study weaved throughout will highlight these issues.

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

Science.gov (United States)

Norinder, Maria; Goliath, Ida; Alvariza, Anette

2017-06-01

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

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

Science.gov (United States)

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

2018-03-29

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

[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"].

Science.gov (United States)

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.

Perceived barriers and facilitators for general practitioner-patient communication in palliative care: a systematic review

NARCIS (Netherlands)

Slort, W.; Schweitzer, B.P.M.; Blankenstein, A.H.; Abarshi, E.A.; Riphagen, I.I.; Echteld, M.A.; Aaronson, N.K.; van der Horst, H.E.; Deliens, L.

2011-01-01

While effective general practitioner (GP)-patient communication is required for the provision of good palliative care, barriers and facilitators for this communication are largely unknown. We aimed to identify barriers and facilitators for GP-patient communication in palliative care. In a systematic

Perceived barriers and facilitators for general practitioner-patient communication in palliative care: A systematic review

NARCIS (Netherlands)

Slort, W.; Schweitzer, B.P.M.; Blankenstein, A.H.; Abarshi-Fatiregun, E.A.B.; Riphagen, I.; Echteld, M.A.; Aaronson, N.K.; van der Horst, H.E.; Deliens, L.

2011-01-01

While effective general practitioner (GP)-patient communication is required for the provision of good palliative care, barriers and facilitators for this communication are largely unknown. We aimed to identify barriers and facilitators for GP-patient communication in palliative care. In a systematic

Perceived barriers and facilitators for general practitioner-patient communication in palliative care: a systematic review.

Science.gov (United States)

Slort, W; Schweitzer, B P M; Blankenstein, A H; Abarshi, E A; Riphagen, I I; Echteld, M A; Aaronson, N K; van der Horst, He; Deliens, L

2011-09-01

While effective general practitioner (GP)-patient communication is required for the provision of good palliative care, barriers and facilitators for this communication are largely unknown. We aimed to identify barriers and facilitators for GP-patient communication in palliative care. In a systematic review seven computerized databases were searched to find empirical studies on GP-patient communication in palliative care. Fifteen qualitative studies and seven quantitative questionnaire studies were included. The main perceived barriers were GPs' lack of availability, and patients' and GPs' ambivalence to discuss 'bad prognosis'. Main perceived facilitators were GPs being available, initiating discussion about several end-of-life issues and anticipating various scenarios. Lack of availability and failure to discuss former mistakes appear to be blind spots of GPs. GPs should be more forthcoming to initiate discussions with palliative care patients about prognosis and end-of-life issues. Empirical studies are needed to investigate the effectiveness of the perceived barriers and facilitators.

Healing ministry and palliative care in Christianity.

Science.gov (United States)

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

2017-01-01

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

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

Science.gov (United States)

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

Palliative care for patients with cancer: do patients receive the care they consider important? A survey study.

Science.gov (United States)

Heins, Marianne; Hofstede, Jolien; Rijken, Mieke; Korevaar, Joke; Donker, Gé; Francke, Anneke

2018-04-17

In many countries, GPs and home care nurses are involved in care for patients with advanced cancer. Given the varied and complex needs of these patients, providing satisfactory care is a major challenge for them. We therefore aimed to study which aspects of care patients, GPs and home care nurses consider important and whether patients receive these aspects. Seventy-two Dutch patients with advanced cancer, 87 GPs and 26 home care nurses rated the importance of support when experiencing symptoms, respect for patients' autonomy and information provision. Patients also rated whether they received these aspects. Questionnaires were based on the CQ index palliative care. Almost all patients rated information provision and respect for their autonomy as important. The majority also rated support when suffering from specific symptoms as important, especially support when in pain. In general, patients received the care they considered important. However, 49% of those who considered it important to receive support when suffering from fatigue and 23% of those who wanted to receive information on the expected course of their illness did not receive this or only did so sometimes. For most patients with advanced cancer, the palliative care that they receive matches what they consider important. Support for patients experiencing fatigue may need more attention. When symptoms are difficult to control, GPs and nurses may still provide emotional support and practical advice. Furthermore, we recommend that GPs discuss patients' need for information about the expected course of their illness.

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 ...

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

Science.gov (United States)

Eva, Gail; Morgan, Deidre

2018-05-01

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

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 "Palliative Care Quality of Life Instrument (PQLI" in terminal cancer patients

Directory of Open Access Journals (Sweden)

Kouvaris John

2004-02-01

Full Text Available Abstract Background This paper describes the development of a new quality of life instrument in advanced cancer patients receiving palliative care. Methods The Palliative Care Quality of Life Instrument incorporates six multi-item and one single-item scale. The questionnaire was completed at baseline and one-week after. The final sample consisted of 120 patients. Results The average time required to complete the questionnaire, in both time points, was approximately 8 minutes. All multi-item scales met the minimal standards for reliability (Cronbach's alpha coefficient ≥.70 either before or during palliative treatment. Test-retest reliability in terms of Spearman-rho coefficient was also satisfactory (p Conclusion The PQLI is a reliable and valid measure for the assessment of quality of life in patients with advanced stage cancer.

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

DEFF Research Database (Denmark)

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

2017-01-01

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

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.)

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

Directory of Open Access Journals (Sweden)

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.

Palliative care guidelines in oncology

International Nuclear Information System (INIS)

Krizanova, K.

2006-01-01

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

Cooperating with a palliative home-care team

DEFF Research Database (Denmark)

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

2005-01-01

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

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

Science.gov (United States)

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

2015-02-01

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

Living in the face of death: Studies on palliative care in upper GI cancer patients

NARCIS (Netherlands)

M.J. Uitdehaag (Madeleen)

2012-01-01

textabstractThis thesis explores palliative care provided to patients with advanced upper gastrointestinal (GI) cancer. The 5-year survival rates for these cancer sites range between 4 and 17%, which implies that many of these patients require palliative care. Considering the fact that there is no

Sleep Disturbances in Patients With Advanced Cancer in Different Palliative Care Settings.

Science.gov (United States)

Mercadante, Sebastiano; Aielli, Federica; Adile, Claudio; Ferrera, Patrizia; Valle, Alessandro; Cartoni, Claudio; Pizzuto, Massimo; Caruselli, Amanda; Parsi, Renato; Cortegiani, Andrea; Masedu, Francesco; Valenti, Marco; Ficorella, Corrado; Porzio, Giampiero

2015-12-01

Information regarding sleep disturbances in the population with advanced cancer is meager. To assess the prevalence of sleep disturbances and possible correlations with associated factors in a large number of patients with advanced cancer admitted to different palliative care settings. This was an observational study performed in different settings of palliative care. A consecutive sample of patients with advanced cancer was prospectively assessed for a period of six months. Epidemiological and clinical data, treatments received in the last month, Karnofsky status, Edmonton Symptom Assessment System scores, and concomitant medical treatment were recorded. Patients were administered the Athens Insomnia Scale and the Hospital Anxiety and Depression Scale (HADS). A total of 820 patients were surveyed. Mean age was 69.7 years (SD 12.7), and 429 patients were males. Consistent sleep disturbances (moderate to maximum) were found in 60.8% of patients. Aged patients were less likely to have sleep disturbances, whereas a poor Karnofsky level was significantly associated with sleep problems. Breast, gastrointestinal, head and neck, lung, and prostate cancers were associated with sleep problems. Patients who had a secondary school or undergraduate education had less sleep disturbances. Hormone therapy and use of opioids and corticosteroids were positively associated with sleep disturbances, and there was a positive correlation of HADS-Anxiety and HADS-Depression scores with sleep disturbances. More than 60% of palliative care patients have relevant sleep disturbances. Several factors associated with sleep disorders have been identified and should prompt physicians to make a careful examination and subsequent treatment of these disturbances. Copyright © 2015 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Team networking in palliative care

Directory of Open Access Journals (Sweden)

Odette Spruyt

2011-01-01

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

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

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/.

Prevalence of delirium in advanced cancer patients in home care and hospice and outcomes after 1 week of palliative care.

Science.gov (United States)

Mercadante, Sebastiano; Masedu, Francesco; Balzani, Isabella; De Giovanni, Daniela; Montanari, Luigi; Pittureri, Cristina; Bertè, Raffaella; Russo, Domenico; Ursini, Laura; Marinangeli, Franco; Aielli, Federica

2018-03-01

The aim of this study was to assess the prevalence of delirium in advanced cancer patients admitted to different palliative care services in Italy and possible related factors. The secondary outcome was to assess the changes of delirium after 1 week of palliative care. A consecutive sample of patients was screened for delirium in period of 1 year in seven palliative care services. General data, including primary tumor, age, gender, concomitant disease, palliative prognostic score (PaP), and Karnofsky status, were collected. Possible causes or factors associated with delirium were looked for. The Edmonton Symptom Assessment Scale was used to assess physical and psychological symptoms and the Memorial Delirium Assessment Scale (MDAS) to assess the cognitive status of patients, at admission (T0) and 1 week after palliative care (T7). Of 848 patients screened, 263 patients were evaluated. Sixty-six patients had only the initial evaluation. The mean Karnofsky status was 34.1 (SD = 6.69); the mean PaP score at admission was 6.9 (SD = 3.97). The mean duration of palliative care assistance, equivalent to survival, was 38.4 days (SD = 48, range 2-220). The mean MDAS values at admission and after 1 week of palliative care were 6.9 (SD = 6.71) and 8.8 (SD = 8.26), respectively. One hundred ten patients (41.8%) and 167 patients (67.3%) had MDAS values ≥ 7 at admission and after 1 week of palliative care, respectively. Age, dehydration, cachexia, chemotherapy in the last three months, and intensity of drowsiness and dyspnea were independently associated with a MDAS > 7. A worsening of drowsiness, the use of opioids, and the use of corticosteroids were independently associated with changes of MDAS from T0 to T7. Although the prevalence of delirium seems to be similar to that reported in other acute settings, delirium tended to worsen or poorly responded to a palliative care treatment. Some clinical factors were independently associated with delirium. This

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

Directory of Open Access Journals (Sweden)

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

Palliative care and spirituality

Directory of Open Access Journals (Sweden)

Narayanasamy Aru

2007-01-01

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

Need for palliative care for neurological diseases.

Science.gov (United States)

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

2016-10-01

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

Identification of the predictors of cognitive impairment in patients with cancer in palliative care

DEFF Research Database (Denmark)

Kurita, Geana Paula; Benthien, Kirstine Skov; Sjøgren, Per

2017-01-01

PURPOSE: Studies with neuropsychological assessments in patients with cancer are sparse, and the evidence is very limited regarding their status of cognitive function over time. This study aimed at assessing the prevalence and predictors of cognitive impairment in patients with cancer in palliative...... care. METHODS: Prospective longitudinal investigation derived from the European Palliative Care Cancer Symptom study (2011-2013) including patients with cancer in palliative care, ≥18 years, and with at least one assessment post-inclusion. For cognitive assessment, a 4-item version of the Mini Mental...... State Examination was applied at inclusion and after 4 to 16 weeks. Logistic regression model with multiple imputations was applied. RESULTS: The sample consisted of 1568 patients (50% male, mean age 65.5, 42% with 10-12 years schooling, mean Karnofsky Performance Status-KPS 68%). Longitudinal analysis...

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

Science.gov (United States)

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

2009-01-01

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

Accuracy of the Distress Thermometer for home care patients with palliative care needs in Germany.

Science.gov (United States)

Wüller, Johannes; Küttner, Stefanie; Foldenauer, Ann Christina; Rolke, Roman; Pastrana, Tania

2017-06-01

Our aim was to examine the accuracy of the German version of the Distress Thermometer (DT) compared with the Hospital Anxiety and Depression Scale (HADS) in patients with palliative care needs living at home. Ours was a 15-month cross-sectional study beginning in September of 2013 in Germany with consecutive patients cared for by a palliative home care service. The survey was implemented during the initial visit by a home care team. Patients were excluded if they were under 18 years of age, mentally or physically unable to complete the assessment questionnaires as judged by their healthcare worker, or unable to understand the German language. During the first encounter, the DT and HADS were applied, and sociodemographic and medical data were collected. A total of 89 persons completed both the HADS and DT questionnaires (response rate = 59.7%; mean age = 67 years; female = 55.1%; married = 65.2%; living home with relatives = 73.0%; oncological condition = 92.1%; Karnofsky Performance Scale [KPS] score: 0-40 = 30.3%, 50-70 = 57.3%, >80 = 6.7%). The mean DT score was 6.3 (±2.3), with 84.3% of participants scoring above the DT cutoff (≥4). The mean HADStotal score was 17.9 (±7.8), where 64% of participants had a total HADS score (HADStotal) ≥15, 51.7% reported anxiety (HADSanxiety ≥ 8), and 73% reported depression (HADSdepression ≥ 8). Using the HADS as a gold standard, a DT cutoff score ≥5 was optimal for identifying severe distress in patients with palliative care needs, with a sensitivity of 93.0%, a specificity of 34.4%, a positive predictive value (PPV) of 73.3%, and likelihood ratios LR+ = 1.42 (home with palliative care needs in order to offer adequate support.

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

LENUS (Irish Health Repository)

O'Leary, Norma

2012-02-01

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

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

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

2016-10-01

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

Information needs about palliative care and euthanasia: A survey of patients in different phases of their cancer trajectory.

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Beernaert, Kim; Haverbeke, Chloë; Van Belle, Simon; Deliens, Luc; Cohen, Joachim

2018-01-01

We assessed information provision and information needs about illness course, treatments, palliative care and euthanasia in cancer patients. Cancer patients consulting a university hospital (N=620) filled out a questionnaire. Their cancer related data were collected through the treating oncologist. This study is performed in Belgium, where "palliative care for all" is a patient's right embedded in the law and euthanasia is possible under certain conditions. Around 80% received information about their illness course and treatments. Ten percent received information about palliative care and euthanasia. Most information about palliative care and euthanasia was given when the patient had a life expectancy of less than six months. However, a quarter of those in earlier phases in their illness trajectory, particularly those who experienced high pain, fatigue or nausea requested more information on these topics. Many patients want more information about palliative care and euthanasia than what is currently provided, also those in an earlier than terminal phase of their disease. Healthcare professionals should be more responsive, already from diagnosis, to the information needs about palliative care and possible end-of-life decisions. This should be patient-tailored, as some patients want more and some patients want less information. Copyright © 2017 Elsevier B.V. All rights reserved.

Plasma concentrations of fentanyl with subcutaneous infusion in palliative care patients.

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Miller, R S; Peterson, G M; Abbott, F; Maddocks, I; Parker, D; McLean, S

1995-12-01

1. Plasma concentrations of fentanyl were measured by g.c. in 20 patients (median age: 75 years and range: 54-86 years; eight females) in palliative care receiving the drug by continuous s.c. infusion (median rate: 1200 micrograms day-1 and range: 100-5000 micrograms day-1). 2. The infusion rate was significantly related to the duration of therapy (Spearman rho = 0.56, P Infusion rates and both total and unbound plasma concentrations of fentanyl were correlated (Spearman rho = 0.92, P infusion in the palliative care setting, which necessitates careful titration of dosage according to individual clinical response.

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

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

2018-06-01

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

[The impact of patient identification on an integrated program of palliative care in Basque Country].

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Larrañaga, Igor; Millas, Jesús; Soto-Gordoa, Myriam; Arrospide, Arantzazu; San Vicente, Ricardo; Irizar, Marisa; Lanzeta, Itziar; Mar, Javier

2017-12-05

Evaluate the process and the economic impact of an integrated palliative care program. Comparative cross-sectional study. Integrated Healthcare Organizations of Alto Deba and Goierri Alto-Urola, Basque Country. Patients dead due to oncologic and non-oncologic causes in 2012 (control group) and 2015 (intervention group) liable to need palliative care according to McNamara criteria. Identification as palliative patients in primary care, use of common clinical pathways in primary and secondary care and arrange training courses for health professionals. Change in the resource use profile of patients in their last 3 months. Propensity score by genetic matching method was used to avoid non-randomization bias. The groups were compared by univariate analysis and the relationships between variables were analysed by logistic regressions and generalized linear models. One thousand and twenty-three patients were identified in 2012 and 1,142 patients in 2015. In 2015 doubled the probability of being identify as palliative patient in deaths due to oncologic (19-33%) and non-oncologic causes (7-16%). Prescriptions of opiates rise (25-68%) and deaths in hospital remained stable. Contacts per patient with primary care and home hospitalization increased, while contacts with hospital admissions decreased. Cost per patient rise 26%. The integrated palliative care model increased the identification of the target population. Relationships between variables showed that the identification had a positive impact on prescription of opiates, death outside the hospital and extension to non-oncologic diseases. Although the identification decreased admissions in hospital, costs per patient had a slight increase due to home hospitalizations. Copyright © 2017 Elsevier España, S.L.U. All rights reserved.

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.

Evaluating palliative care needs in Middle Eastern countries.

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

2015-01-01

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

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.

Overcoming recruitment challenges in palliative care clinical trials.

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

2013-11-01

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

A team approach in palliative care: enhancing outcomes.

Science.gov (United States)

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

2002-07-01

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

Palliative care nurses' views on euthanasia.

Science.gov (United States)

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

2004-09-01

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

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

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Kuhn Ulrike

2012-11-01

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

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

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Crul, B J; van Weel, C

2001-10-20

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

Palliative care and the arts: vehicles to introduce medical students to patient-centred decision-making and the art of caring.

Science.gov (United States)

Centeno, Carlos; Robinson, Carole; Noguera-Tejedor, Antonio; Arantzamendi, María; Echarri, Fernando; Pereira, José

2017-12-16

Medical Schools are challenged to improve palliative care education and to find ways to introduce and nurture attitudes and behaviours such as empathy, patient-centred care and wholistic care. This paper describes the curriculum and evaluation results of a unique course centred on palliative care decision-making but aimed at introducing these other important competencies as well. The 20 h-long optional course, presented in an art museum, combined different learning methods, including reflections on art, case studies, didactic sessions, personal experiences of faculty, reflective trigger videos and group discussions. A mixed methods approach was used to evaluate the course, including a) a post-course reflective exercise; b) a standardized evaluation form used by the University for all courses; and c) a focus group. Twenty students (2nd to 6th years) participated. The course was rated highly by the students. Their understanding of palliative care changed and misconceptions were dispelled. They came to appreciate the multifaceted nature of decision-making in the palliative care setting and the need to individualize care plans. Moreover, the course resulted in a re-conceptualization of relationships with patients and families, as well as their role as future physicians. Palliative care decision-making therefore, augmented by the visual arts, can serve as a vehicle to address several competencies, including the introduction of competencies related to being patient-centred and empathic.

Palliative Care Development in Mongolia.

Science.gov (United States)

Davaasuren, Odontuya; Ferris, Frank D

2018-02-01

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

Nurses experiences in palliative care of terminally-ill HIV patients in a level 1 district hospital

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Nokwanda E. Bam

2014-02-01

Full Text Available Background: Whilst the discourse of palliative care in HIV management is largely documented and regarded as being an essential component, various authors have further argued that within the context of HIV care in sub-Saharan Africa, palliative care and exploration of the dimensions thereof is largely lacking. This article presents the lived experiences of nurses involved in palliative care, thus providing the perspective of nurses and the multi-faceted dimensions of the nature of caring inherent.Objectives: This study explored the respondents’ understanding of the concepts ‘caring’ and ‘terminal patient’ and described the experiences of nurses caring for terminally-ill patients with HIV and how these experiences influence the nature of care rendered.Methods: Qualitative research using Husserl’s approach of phenomenology design underpinned the study and Giorgi’s steps of analysis were used to make meaning of the data.Results: The concept ‘caring’ was experienced by the nurses as transforming the patients’ quality of life through supportive care and hope for life. Palliative care made the nurses conscious of their own mortality, enabling them to be more sensitive, compassionate and dedicated to caring for their patients. The findings described the social networking that enabled nurses to collaborate with colleagues in the interdisciplinary teams and shared knowledge, skills and support within the palliative care team in order to optimise patient outcomes.Conclusion: Nurses with prolonged involvement in caring for terminally-ill patients with HIV experienced helplessness and emotional stress. Recommendations based on the results are that training in psychological and holistic care of the patient, professional counselling and stress management services are needed to support the nurse in this context.

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

Science.gov (United States)

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

2009-10-01

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

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

DEFF Research Database (Denmark)

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

2017-01-01

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

Work Experiences of Patients Receiving Palliative Care at a Comprehensive Cancer Center: Exploratory Analysis.

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Glare, Paul A; Nikolova, Tanya; Alickaj, Alberta; Patil, Sujata; Blinder, Victoria

2017-07-01

Employment-related issues have been largely overlooked in cancer patients needing palliative care. These issues may become more relevant as cancer evolves into more of a chronic illness and palliative care is provided independent of stage or prognosis. To characterize the employment situations of working-age palliative care patients. Cross-sectional survey setting/subjects: Consecutive sample of 112 patients followed in palliative care outpatient clinics at a comprehensive cancer center. Thirty-seven-item self-report questionnaire covering demographics, clinical status, and work experiences since diagnosis. The commonest cancer diagnoses were breast, colorectal, gynecological, and lung. Eighty-one percent had active disease. Seventy-four percent were on treatment. Eighty percent recalled being employed at the time of diagnosis, with 65% working full time. At the time of the survey, 44% were employed and 26% were working full time. Most participants said work was important, made them feel normal, and helped them feel they were "beating the cancer". Factors associated with being employed included male gender, self-employed, and taking less than three months off work. Respondents with pain and/or other symptoms were significantly less likely to be working. On multivariate analysis, only pain (odds ratio [OR] 8.16, p gender (OR 2.07), self-employed (OR 3.07), and current chemotherapy (OR 1.81) were included in the model, but were not statistically significant in this small sample. Work may be an important issue for some palliative care patients. Additional research is needed to facilitate ongoing employment for those who wish or need to continue working.

Palliative care services for Indian migrants in Australia: Experiences of the family of terminally Ill patients

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Sujatha Shanmugasundaram

2009-01-01

Full Text Available Background: The way that health care systems in developing countries like India care for dying patients, has an impact on the expectations of such care for those who migrate to other countries faces. At the end of life, cultural issues may impact on the quality of life remaining and for that reason, it is important that particular cultural practices are understood. This paper describes a study that investigated the cultural issues of access to palliative care services for Indian migrants in Australia. Purpose of the Study: To investigate the experiences of the family members of terminally ill Indian migrants in Victoria, Australia. Objective of the Study: To explore the issues related to accessing palliative care services for Indian migrants; to identify the effectiveness of palliative care in supporting the patient and family and to recommend strategies for improving this care. Materials and Methods: A qualitative descriptive design was utilized. Up to 6 family members were selected for in-depth interviews in understanding cultural issues related to the palliative care services for a family member. Results: Analysis of the interviews revealed that families of Indian patients experience difficulties whilst receiving palliative care services, which fell into three main categories: Indian support systems, cultural issues, and caring experiences. Although each of these issues had a direct influence on the experience of terminal care that their family member received, cultural issues and support systems also influenced the caring experiences. Conclusion: Despite the successful implementation of palliative care services across Australia, there are still problems in accessing and receiving the services among minority and disadvantaged groups like various cultural groups.

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

DEFF Research Database (Denmark)

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

2010-01-01

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

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....

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

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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

Patients' and Parents' Needs, Attitudes, and Perceptions About Early Palliative Care Integration in Pediatric Oncology.

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Levine, Deena R; Mandrell, Belinda N; Sykes, April; Pritchard, Michele; Gibson, Deborah; Symons, Heather J; Wendler, David; Baker, Justin N

2017-09-01

Early palliative care integration for cancer patients is now touted as the optimal care model, yet significant barriers often prevent its implementation. A perceived barrier, especially for pediatric oncology patients, is the notion that patients and their families may not need or want palliative care involvement early in the disease trajectory. To determine the perception of symptom burden early in treatment and assess attitudes toward early integration of palliative care in pediatric oncology patient-parent pairs. Novel but pretested survey tools were administered to 129 patient-parent dyads of hospital-based pediatric oncology ambulatory clinics and inpatient units between September 2011 and January 2015. All patient participants were aged between 10 and 17 years and were diagnosed as having an oncologic condition 1 month to 1 year before enrollment. Both the patient and the parent in the dyad spoke English, and all participating parents provided written informed consent. A convenience sample was used for selection, with participants screened when otherwise presenting at a participating site. A total of 280 eligible participants were approached for study inclusion, 258 of whom were enrolled in the study (92.1% positive response-rate). Degree of perceived suffering from early symptom-related causes, attitudes toward early palliative care integration, and patient-parent concordance. Statistical analysis included descriptive statistics, calculation of concordance, McNemar test results, and Cochran-Armitage trend test results. Of the 129 patients in the dyads, 68 were boys, and 61 girls; of the 129 parents, 15 were men, and 114 women. Patients reported the following symptoms in the first month of cancer therapy: nausea (n = 109; 84.5%), loss of appetite (n = 97; 75.2%), pain (n = 96; 74.4%), anxiety (n = 77; 59.7%), constipation (n = 69; 53.5%), depression (n = 64; 49.6%), and diarrhea (n = 52; 40.3%). A large proportion of those

[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.

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

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José L. Teruel

2015-10-01

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

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

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

2015-01-01

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

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

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

2017-04-01

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

Patient autonomy problems in palliative care: systematic development and evaluation of a questionnaire.

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Vernooy-Dassen, M.J.F.J.; Osse, B.H.P.; Schade, E.; Grol, R.P.T.M.

2005-01-01

No instrument to assess autonomy problems in palliative care is currently available. The purpose of this study was to develop a comprehensive and concise questionnaire to measure autonomy problems in palliative cancer patients and to study its validity and reliability. We systematically developed a

Learning to care: medical students’ reported value and evaluation of palliative care teaching involving meeting patients and reflective writing

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Erica Borgstrom

2016-11-01

Full Text Available Abstract Background Over recent years there has been an increase in teaching of both palliative care and reflective practice in UK medical schools. The palliative care teaching at the University of Cambridge School of Clinical Medicine is multi-faceted and involves students writing reflective essays after individually meeting patients approaching the end of life during their final year general practice and hospital medicine placements. This paper draws on two studies examining this teaching element to analyse what the students found valuable about it and to comment on the practice of meeting patients and subsequent reflective writing. Methods Two studies have explored students’ perceptions of these course components. The first was a thematic analysis of 234 reflective essays from 123 students written in 2007-2008, including examining what students wrote about the exercise itself. The second project involved a semi-structured questionnaire that students completed anonymously; this paper reports on the free text elements of that study [sample size =107]. Since similar themes were found in both studies, the coding structures from each project were compared and combined, enabling triangulation of the findings around what the students found valuable from the palliative care teaching involving meeting patients and reflective writing. Results Overall, students reported that these components of the palliative care teaching are valuable. Four main themes were identified as aspects that students valued: (1 dedicated time with patients, (2 learning about wider elements of treatment and holistic care, (3 practicing communication skills, and (4 learning about themselves through reflective writing. Some students expressed a dislike for having to formally write a reflective essay. Conclusion It is possible to arrange for all of the medical students to individually meet at least two patients receiving palliative or end of life care. Students found these

Palliative care in advanced cancer patients in a tertiary care hospital in Uttarakhand

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Manisha Bisht

2008-01-01

Full Text Available Aim: Advanced cancer, irrespective of the site of the cancer, is characterized by a number of associated symptoms that impair the quality of life of patients. The management of these symptoms guides palliative care. The present study aims to describe the symptoms and appropriate palliation provided in patients with advanced cancer in a tertiary care hospital in Uttarakhand. Methods: This was an observational study. A total of 100 patients with advanced cancer were included in the study. The data obtained from the patients included symptoms reported by the patients, currently prescribed treatments and the site of cancer. Results: The average number of symptoms reported per patient was 5.33 ± 0.67 (mean ± SE. The most common symptoms were pain, weakness/fatigue, anorexia, insomnia, nausea/vomiting, dyspnea, constipation and cough. Polypharmacy was frequent. Patients consumed approximately 8.7 ± 0.38 (mean ± SE drugs on average during the 2-month period of follow-up. Conclusion: The result gives insight into the varied symptomatology of patients with advanced cancer. Polypharmacy was quite common in patients with advanced cancer, predisposing them to complicated drug interactions and adverse drug reactions.

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

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

2016-04-01

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

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 ...

Educational Needs on Palliative Care for Cancer Patients in Iran: A SWOT Analysis.

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Ansari, Mojgan; Rassouli, Maryam; Akbari, Mohamad Esmaiel; Abbaszadeh, Abbas; Akbari Sari, Ali

2018-04-01

By acceptance of palliative care as a part of health system of each country and due to increasing prevalence of cancer, special focus on stakeholder's educational needs is of vital importance so that palliative care services are improved and the quality of life of patients is enhanced. This study was conducted to explore the educational needs of stakeholders of palliative care for cancer patients in Iran. This qualitative study with 20 semi-structured interviews was conducted from August 2016 to February 2017 in Shohadaye Tajrish and Emam Khomeini Hospitals of Tehran. Participants were selected through purposive sampling and included cancer patients and their family caregivers as well as healthcare providers, experts and policy-makers. The data were analyzed through Conventional Content Analysis of Landman and Graneheim using MAXQDA10 software. Statements of each main category of the study were summarized in SWOT categorizes. A total of 546 codes were extracted from the analysis of the interviews and four main categories and four subcategories were identified. The four main identified categories included: "academic education planning", "workforce education", "public awareness", and "patient and caregiver empowerment" that contained our subcategories as follows: "strengths", "weaknesses", "opportunities" and "threats" (SWOT). Meeting the educational needs of the stakeholders of palliative care requires policy-makers to identify the factors leading to strategies that are based on the use of opportunities, the removal of weaknesses, and coping with the threats to which the organization is faced.

Patient's and health care provider's perspectives on music therapy in palliative care - an integrative review.

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Schmid, W; Rosland, J H; von Hofacker, S; Hunskår, I; Bruvik, F

2018-02-20

The use of music as therapy in multidisciplinary end-of-life care dates back to the 1970s and nowadays music therapy (MT) is one of the most frequently used complementary therapy in in-patient palliative care in the US. However existing research investigated music therapy's potential impact mainly from one perspective, referring to either a quantitative or qualitative paradigm. The aim of this review is to provide an overview of the users' and providers' perspectives on music therapy in palliative care within one research article. A systematic literature search was conducted using several databases supplemented with a hand-search of journals between November 1978 and December 2016. Inclusion criteria were: Music therapy with adults in palliative care conducted by a certified music therapist. Both quantitative and qualitative studies in English, German or a Scandinavian language published in peer reviewed journals were included. We aimed to identify and discuss the perspectives of both patients and health care providers on music therapy's impact in palliative care to forward a comprehensive understanding of it's effectiveness, benefits and limitations. We investigated themes mentioned by patients within qualitative studies, as well as commonly chosen outcome measures in quantitative research. A qualitative approach utilizing inductive content analysis was carried out to analyze and categorize the data. Twelve articles, reporting on nine quantitative and three qualitative research studies were included. Seven out of the nine quantitative studies investigated pain as an outcome. All of the included quantitative studies reported positive effects of the music therapy. Patients themselves associated MT with the expression of positive as well as challenging emotions and increased well-being. An overarching theme in both types of research is a psycho-physiological change through music therapy. Both quantitative as well as qualitative research showed positive changes in

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.

Patient safety in palliative care: A mixed-methods study of reports to a national database of serious incidents.

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Yardley, Iain; Yardley, Sarah; Williams, Huw; Carson-Stevens, Andrew; Donaldson, Liam J

2018-06-01

Patients receiving palliative care are vulnerable to patient safety incidents but little is known about the extent of harm caused or the origins of unsafe care in this population. To quantify and qualitatively analyse serious incident reports in order to understand the causes and impact of unsafe care in a population receiving palliative care. A mixed-methods approach was used. Following quantification of type of incidents and their location, a qualitative analysis using a modified framework method was used to interpret themes in reports to examine the underlying causes and the nature of resultant harms. Reports to a national database of 'serious incidents requiring investigation' involving patients receiving palliative care in the National Health Service (NHS) in England during the 12-year period, April 2002 to March 2014. A total of 475 reports were identified: 266 related to pressure ulcers, 91 to medication errors, 46 to falls, 21 to healthcare-associated infections (HCAIs), 18 were other instances of disturbed dying, 14 were allegations against health professions, 8 transfer incidents, 6 suicides and 5 other concerns. The frequency of report types differed according to the care setting. Underlying causes included lack of palliative care experience, under-resourcing and poor service coordination. Resultant harms included worsened symptoms, disrupted dying, serious injury and hastened death. Unsafe care presents a risk of significant harm to patients receiving palliative care. Improvements in the coordination of care delivery alongside wider availability of specialist palliative care support may reduce this risk.

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

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

2004-01-01

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

Patient-centeredness to anticipate and organize an end-of-life project for patients receiving at-home palliative care: a phenomenological study.

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Oude Engberink, Agnès; Badin, Mélanie; Serayet, Philippe; Pavageau, Sylvain; Lucas, François; Bourrel, Gérard; Norton, Joanna; Ninot, Grégory; Senesse, Pierre

2017-02-23

The development of end-of-life primary care is a socio-medical and ethical challenge. However, general practitioners (GPs) face many difficulties when initiating appropriate discussion on proactive shared palliative care. Anticipating palliative care is increasingly important given the ageing population and is an aim shared by many countries. We aimed to examine how French GPs approached and provided at-home palliative care. We inquired about their strategy for delivering care, and the skills and resources they used to devise new care strategies. Twenty-one GPs from the South of France recruited by phone according to their various experiences of palliative care agreed to participate. Semi-structured interview transcripts were examined using a phenomenological approach inspired by Grounded theory, and further studied with semiopragmatic analysis. Offering palliative care was perceived by GPs as a moral obligation. They felt vindicated in a process rooted in the paradigm values of their profession. This study results in two key findings: firstly, their patient-centred approach facilitated the anticipatory discussions of any potential event or intervention, which the GPs openly discussed with patients and their relatives; secondly, this approach contributed to build an "end-of-life project" meeting patients' wishes and needs. The GPs all shared the idea that the end-of-life process required human presence and recommended that at-home care be coordinated and shared by multi-professional referring teams. The main tenets of palliative care as provided by GPs are a patient-centred approach in the anticipatory discussion of potential events, personalized follow-up with referring multi-professional teams, and the collaborative design of an end-of-life project meeting the aspirations of the patient and his or her family. Consequently, coordination strategies involving specialized teams, GPs and families should be modelled according to the specificities of each care system.

Ideology and Palliative Care: Moral Hazards at the Bedside.

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Rhodes, Rosamond; Strain, James J

2018-01-01

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

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

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

2016-01-01

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

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

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

2018-05-01

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

Quality assessment of palliative home care in Italy.

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

2017-08-01

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

How outpatient palliative care teleconsultation facilitates empathic patient-professional relationships: a qualitative study

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

2015-01-01

Objective The problems and needs of advanced cancer patients and proxies normally increase as the disease progresses. Home-based advanced cancer patients and their proxies benefit from collaborations between primary care physicians and hospital-based palliative care specialists when confronted with

How do GPs identify a need for palliative care in their patients? An interview study.

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Claessen, S.J.J.; Francke, A.L.; Engels, Y.; Deliens, L.

2013-01-01

Background: Little is known about how GPs determine whether and when patients need palliative care. Little research has been done regarding the assumption underpinning Lynn and Adamson’s model that palliative care may start early in the course of the disease. This study was conducted to explore how

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.

The role of dentist in palliative care team

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Rani P Mol

2010-01-01

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

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.

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.

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

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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

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

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Burton Christopher R

2012-11-01

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

Educational Needs on Palliative Care for Cancer Patients in Iran: A SWOT Analysis

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Ansari, Mojgan; Rassouli, Maryam; Akbari, Mohamad Esmaiel; Abbaszadeh, Abbas; Akbari Sari, Ali

2018-01-01

ABSTRACT Background: By acceptance of palliative care as a part of health system of each country and due to increasing prevalence of cancer, special focus on stakeholder’s educational needs is of vital importance so that palliative care services are improved and the quality of life of patients is enhanced. This study was conducted to explore the educational needs of stakeholders of palliative care for cancer patients in Iran. Methods: This qualitative study with 20 semi-structured interviews was conducted from August 2016 to February 2017 in Shohadaye Tajrish and Emam Khomeini Hospitals of Tehran. Participants were selected through purposive sampling and included cancer patients and their family caregivers as well as healthcare providers, experts and policy-makers. The data were analyzed through Conventional Content Analysis of Landman and Graneheim using MAXQDA10 software. Statements of each main category of the study were summarized in SWOT categorizes. Result: A total of 546 codes were extracted from the analysis of the interviews and four main categories and four subcategories were identified. The four main identified categories included: ”academic education planning”, “workforce education”, “public awareness”, and “patient and caregiver empowerment” that contained our subcategories as follows: “strengths”, “weaknesses”, “opportunities” and “threats” (SWOT). Conclusion: Meeting the educational needs of the stakeholders of palliative care requires policy-makers to identify the factors leading to strategies that are based on the use of opportunities, the removal of weaknesses, and coping with the threats to which the organization is faced. PMID:29607340

Educational Needs on Palliative Care for Cancer Patients in Iran: A SWOT Analysis

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Mojgan Ansari

2018-04-01

Full Text Available Background: By acceptance of palliative care as a part of health system of each country and due to increasing prevalence of cancer, special focus on stakeholder’s educational needs is of vital importance so that palliative care services are improved and the quality of life of patients is enhanced. This study was conducted to explore the educational needs of stakeholders of palliative care for cancer patients in Iran. Methods: This qualitative study with 20 semi-structured interviews was conducted from August 2016 to February 2017 in Shohadaye Tajrish and Emam Khomeini Hospitals of Tehran. Participants were selected through purposive sampling and included cancer patients and their family caregivers as well as healthcare providers, experts and policy-makers. The data were analyzed through Conventional Content Analysis of Landman and Graneheim using MAXQDA10 software. Statements of each main category of the study were summarized in SWOT categorizes. Result: A total of 546 codes were extracted from the analysis of the interviews and four main categories and four subcategories were identified. The four main identified categories included:”academic education planning”, “workforce education”, “public awareness”, and “patient and caregiver empowerment” that contained our subcategories as follows: “strengths”, “weaknesses”, “opportunities” and “threats” (SWOT. Conclusion: Meeting the educational needs of the stakeholders of palliative care requires policy-makers to identify the factors leading to strategies that are based on the use of opportunities, the removal of weaknesses, and coping with the threats to which the organization is faced.

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.

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.

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.

Smarter palliative care for cancer: Use of smartphone applications

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Nisha Rani Jamwal

2016-01-01

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

Pediatric Palliative Care at a Glance

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® ™ ® 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 ...

Palliative care in Pakistan.

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Khan, Robyna Irshad

2017-01-01

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

Home palliative care works: but how? A meta-ethnography of the experiences of patients and family caregivers.

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Sarmento, Vera P; Gysels, Marjolein; Higginson, Irene J; Gomes, Barbara

2017-12-01

To understand patients and family caregivers' experiences with home palliative care services, in order to identify, explore and integrate the key components of care that shape the experiences of service users. We performed a meta-ethnography of qualitative evidence following PRISMA recommendations for reporting systematic reviews. The studies were retrieved in 5 electronic databases (MEDLINE, EMBASE, PsycInfo, BNI, CINAHL) using 3 terms and its equivalents ('Palliative', 'Home care', 'Qualitative research') combined with 'AND', complemented with other search strategies. We included original qualitative studies exploring experiences of adult patients and/or their family caregivers (≥18 years) facing life-limiting diseases with palliative care needs, being cared for at home by specialist or intermediate home palliative care services. 28 papers reporting 19 studies were included, with 814 participants. Of these, 765 were family caregivers and 90% were affected by advanced cancer. According to participants' accounts, there are 2 overarching components of home palliative care: presence (24/7 availability and home visits) and competence (effective symptom control and skilful communication), contributing to meet the core need for security. Feeling secure is central to the benefits experienced with each component, allowing patients and family caregivers to focus on the dual process of living life and preparing death at home. Home palliative care teams improve patients and caregivers experience of security when facing life-limiting illnesses at home, by providing competent care and being present. These teams should therefore be widely available and empowered with the resources to be present and provide competent care. 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.

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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.

Palliative Care and Death Anxiety

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Figen Inci

2012-06-01

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

PALLIATIVE CARE IN ROMANIA : NEEDS AND RIGHTS

NARCIS (Netherlands)

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

2008-01-01

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

Music thanatology: prescriptive harp music as palliative care for the dying patient.

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Freeman, Lindsay; Caserta, Michael; Lund, Dale; Rossa, Shirley; Dowdy, Ann; Partenheimer, Andrea

2006-01-01

Music thanatology represents an emerging area in which the raw materials of music, usually harp and/or voice, assist and comfort the dying patient. During prescriptive "music vigils, " the clinician-musician carefully observes physiological changes, cues, and breathing patterns, thereby synchronizing the music to reflect or support the patient's physiology and overall condition. Using data collected from 65 patients, this study was designed to assess the effectiveness of prescriptive harp music on selected palliative care outcomes using a sample of de-identified data forms from past music vigils. Patients were administered a 25- to 95-minute intervention of prescriptive harp music. Data collected included vital signs and observational indicators before (Ti) and after (T2) the vigil. Patients were more likely to experience decreased levels of agitation and wakefulness while also breathing more slowly and deeply with less effort at the conclusion of the music vigil. Results from this study suggest that a prescriptive vigil conducted by a trained music thanatologist could provide an effective form of palliative care for dying patients.

The relationships between the combination of person- and organization-related conditions and patients' perceptions of palliative care quality.

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

2017-12-06

Little is known about the combination of person- and organization- related conditions and the relationships with patients' perspectives of care quality. Such a combination could contribute knowledge reflecting the complexity of clinical practice, and enhance individualized care. The aim was to investigate the relationships between the combination of person- and organization-related conditions and patients' perceptions of palliative care quality. A cross-sectional study, including 191 patients in the late palliative phase (73% response rate) admitted to hospice inpatient care (n = 72), hospice day care (n = 51), palliative units in nursing homes (n = 30) and home care (n = 38), was conducted between November 2013 and December 2014, using the instrument Quality from the Patients' Perspective specific to palliative care (QPP-PC). Data were analysed, using analysis of covariance, to explore the amount of the variance in the dependent variables (QPP-PC) that could be explained by combination of the independent variables - Person- and organization-related conditions, - while controlling for differences in covariates. Patients scored the care received and the subjective importance as moderate to high. The combination of person- and organization - related conditions revealed that patients with a high sense of coherence, lower age (person - related conditions) and being in a ward with access to and availability of physicians (organization-related condition) might be associated with significantly higher scores for the quality of care received. Gender (women), daily contact with family and friends, and low health-related quality of life (person-related conditions) might be associated with higher scores for subjective importance of the aspects of care quality. Healthcare personnel, leaders and policy makers need to pay attention to person- and organization-related conditions in order to provide person-centered palliative care of high quality. Further studies from

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

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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.

An evaluation of routine specialist palliative care for patients on the Liverpool Care Pathway

OpenAIRE

Thompson, Jo; Brown, Jayne; Davies, Andrew

2014-01-01

Introduction: This report describes a service evaluation of the 'added value' of routine specialist palliative care team (SPCT) involvement with patients on the Liverpool Care Pathway for the Dying Patient (LCP). Methods: In the authors' hospital, patients that are commenced on the LCP are routinely referred to the SPCT. They are reviewed on the day of referral and then at least every other day, depending on the clinical situation. The data for this report was obtained by reviewing the S...

Patient autonomy and advance care planning: a qualitative study of oncologist and palliative care physicians' perspectives.

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Johnson, Stephanie B; Butow, Phyllis N; Kerridge, Ian; Tattersall, Martin H N

2018-02-01

Patients' are encouraged to participate in advance care planning (ACP) in order to enhance their autonomy. However, controversy exists as to what it means to be autonomous and there is limited understanding of how social and structural factors may influence cancer patients' ability to exercise their autonomy. The objective of this study is to explore oncologists' and palliative care physicians' understanding of patient autonomy, how this influences reported enactment of decision-making at the end of life (EOL), and the role of ACP in EOL care. Qualitative semi-structured interviews were conducted with consultant oncologists (n = 11) and palliative medicine doctors (n = 7) working in oncology centres and palliative care units across Australia. We found that doctors generally conceptualized autonomy in terms of freedom from interference but that there was a profound disconnect between this understanding of autonomy and clinical practice in EOL decision-making. The clinicians in our study privileged care, relationships and a 'good death' above patient autonomy, and in practice were reluctant to 'abandon' their patients to total non-interference in decision-making. Patient autonomy in healthcare is bounded, as while patients were generally encouraged to express their preferences for care, medical norms about the quality and 'reasonableness' of care, the availability of services and the patients' family relationships act to enhance or limit patients' capacity to realize their preferences. While for many, this disconnect between theory and practice did not diminish the rhetorical appeal of ACP; for others, this undermined the integrity of ACP, as well as its relevance to care. For some, ACP had little to do with patient autonomy and served numerous other ethical, practical and political functions. The ethical assumptions regarding patient autonomy embedded in academic literature and policy documents relating to ACP are disconnected from the realities of clinical care

[Hospice and palliative care in the outpatient department].

Science.gov (United States)

Ikenaga, M; Tsuneto, S

2000-10-01

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

Twenty years of home-based palliative care in Malappuram, Kerala, India: a descriptive study of patients and their care-givers.

Science.gov (United States)

Philip, Rekha Rachel; Philip, Sairu; Tripathy, Jaya Prasad; Manima, Abdulla; Venables, Emilie

2018-02-14

The well lauded community-based palliative care programme of Kerala, India provides medical and social support, through home-based care, for patients with terminal illness and diseases requiring long-term support. There is, however, limited information on patient characteristics, caregivers and programme performance. This study was carried out to describe: i) the patients enrolled in the programme from 1996 to 2016 and their diagnosis, and ii) the care-giver characteristics and palliative care support from nurses and doctors in a cohort of patients registered during 2013-2015. A descriptive study was conducted in the oldest community-based palliative clinic in Kerala. Data were collected from annual patient registers from 1996 to 2016 and patient case records during the period 2013-2015. While 91% of the patients registered in the clinic in 1996 had cancer, its relative proportion came down to 32% in 2016 with the inclusion of dementia-related illness (19%) cardiovascular accidents (17%) and severe mental illness (5%).Among patients registered during 2013-15, the median number of home visits from nurses and doctors in 12 months were five and one respectively. In the same cohort, twelve months' post-enrolment, 56% of patients died, 30% were in continuing in active care and 7% opted out. Those who opted out of care were likely to be aged care-giver at home, 85% of these care-givers being female. The changing dynamics over a 20-year period of this palliative care programme in Kerala, India, highlights the need for similar programmes to remain flexible and adapt their services in response to a growing global burden of Non Communicable Diseases. While a high death rate is expected in this population, the high proportion of patients choosing to stay in the programme suggests that home-based care is valued within this particular group. A diverse range of clinical and psycho-social support skills are required to assist families and their caregivers when caring for a

Changes in symptoms and pain intensity of cancer patients after enrollment in palliative care at home

NARCIS (Netherlands)

Dumitrescu, Luminita; van den Heuvel-Olaroiu, Marinela; van den Heuvel, Wim J. A.

2007-01-01

This study describes the activities and interventions carried out by an at-home palliative care team treating cancer patients who died within two years of being enrolled in a palliative care program. It analyzes which changes in symptoms and pain occurred and which sociodemographic and medical

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

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Worster, Brooke; Swartz, Kristine

2017-06-01

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

Training hospital staff on spiritual care in palliative care influences patient-reported outcomes : Results of a quasi-experimental study

NARCIS (Netherlands)

van de Geer, Joep; Groot, Marieke; Andela, Richtsje; Leget, Carlo; Prins, Jelle; Vissers, Kris; Zock, Hetty

Background: Spiritual care is reported to be important to palliative patients. There is an increasing need for education in spiritual care. Aim: To measure the effects of a specific spiritual care training on patients' reports of their perceived care and treatment. Design: A pragmatic controlled

Training hospital staff on spiritual care in palliative care influences patient-reported outcomes: Results of a quasi-experimental study.

Science.gov (United States)

van de Geer, Joep; Groot, Marieke; Andela, Richtsje; Leget, Carlo; Prins, Jelle; Vissers, Kris; Zock, Hetty

2017-09-01

Spiritual care is reported to be important to palliative patients. There is an increasing need for education in spiritual care. To measure the effects of a specific spiritual care training on patients' reports of their perceived care and treatment. A pragmatic controlled trial conducted between February 2014 and March 2015. The intervention was a specific spiritual care training implemented by healthcare chaplains to eight multidisciplinary teams in six hospitals on regular wards in which patients resided in both curative and palliative trajectories. In total, 85 patients were included based on the Dutch translation of the Supportive and Palliative Care Indicators Tool. Data were collected in the intervention and control wards pre- and post-training using questionnaires on physical symptoms, spiritual distress, involvement and attitudes (Spiritual Attitude and Involvement List) and on the perceived focus of healthcare professionals on patients' spiritual needs. All 85 patients had high scores on spiritual themes and involvement. Patients reported that attention to their spiritual needs was very important. We found a significant ( p = 0.008) effect on healthcare professionals' attention to patients' spiritual and existential needs and a significant ( p = 0.020) effect in favour of patients' sleep. No effect on the spiritual distress of patients or their proxies was found. The effects of spiritual care training can be measured using patient-reported outcomes and seemed to indicate a positive effect on the quality of care. Future research should focus on optimizing the spiritual care training to identify the most effective elements and developing strategies to ensure long-term positive effects. This study was registered at the Dutch Trial Register: NTR4559.

Palliative care nurses' recognition and assessment of patients with delirium symptoms: a qualitative study using critical incident technique.

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Hosie, Annmarie; Agar, Meera; Lobb, Elizabeth; Davidson, Patricia M; Phillips, Jane

2014-10-01

Delirium is prevalent in palliative care inpatient settings and management is often challenging. Despite nurses' integral patient care role, little is known about palliative care nurses' capacity to recognise, assess and respond to patients' delirium symptoms. To explore the experiences, views and practices of inpatient palliative care nurses in delirium recognition and assessment. 30 nurses from nine Australian specialist palliative care inpatient services. Critical incident technique (CIT) guided a series of semi-structured interviews. Prior to interviews participants were given a vignette of a palliative care inpatient with an unrecognised hypoactive delirium, to prompt their recollection and recounting of a similar clinical incident. Clearly recalled and described incidents were analysed using thematic content analysis. 20 of 30 participants recalled and described 28 relevant delirium incidents. Two themes and six sub-themes provide a general description of participants' experiences, views and practice in delirium recognition and assessment. Participants experience distress related to caring for patients with delirium and express compassion and empathy for delirious patients. Enhancing their delirium knowledge, strengthening collaborative multidisciplinary team relationships and better communication are important supports. Some participants, usually those in advance practice roles, describe more comprehensive assessment capabilities that incorporate clinical expertise with whole person awareness, yet systematic and structured delirium screening and assessment processes and application of the delirium diagnosis criteria are largely missing. Use of ambiguous terminology to describe delirium symptoms contributes to ineffective practice. The findings of this study expands our understanding of how palliative care nurses' capacity to recognise and assess patients' delirium symptoms in the inpatient setting could be strengthened. Copyright © 2014 Elsevier Ltd. All

Understanding patient requirements for technology systems that support pain management in palliative care services: A qualitative study.

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Allsop, Matthew J; Taylor, Sally; Bennett, Michael I; Bewick, Bridgette M

2017-11-01

Approaches to pain management using electronic systems are being developed for use in palliative care. This article explores palliative care patients' perspectives on managing and talking about pain, the role of technology in their lives and how technology could support pain management. Face-to-face interviews were used to understand patient needs and concerns to inform how electronic systems are developed. A total of 13 interviews took place with a convenience sample of community-based patients with advanced cancer receiving palliative care through a hospice. Data were analysed using framework analysis. Four meta-themes emerged: Technology could be part of my care; I'm trying to understand what is going on; My pain is ever-changing and difficult to control; and I'm selective about who to tell about pain. Patients described technology as peripheral to existing processes of care. To be relevant, systems may need to take account of the complexity of a patient's pain experience alongside existing relationships with health professionals.

Palliative Care Physicians' Attitudes Toward Patient Autonomy and a Good Death in East Asian Countries.

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Morita, Tatsuya; Oyama, Yasuhiro; Cheng, Shao-Yi; Suh, Sang-Yeon; Koh, Su Jin; Kim, Hyun Sook; Chiu, Tai-Yuan; Hwang, Shinn-Jang; Shirado, Akemi; Tsuneto, Satoru

2015-08-01

Clarification of the potential differences in end-of-life care among East Asian countries is necessary to provide palliative care that is individualized for each patient. The aim was to explore the differences in attitude toward patient autonomy and a good death among East Asian palliative care physicians. A cross-sectional survey was performed involving palliative care physicians in Japan, Taiwan, and Korea. Physicians' attitudes toward patient autonomy and physician-perceived good death were assessed. A total of 505, 207, and 211 responses were obtained from Japanese, Taiwanese, and Korean physicians, respectively. Japanese (82%) and Taiwanese (93%) physicians were significantly more likely to agree that the patient should be informed first of a serious medical condition than Korean physicians (74%). Moreover, 41% and 49% of Korean and Taiwanese physicians agreed that the family should be told first, respectively; whereas 7.4% of Japanese physicians agreed. Physicians' attitudes with respect to patient autonomy were significantly correlated with the country (Japan), male sex, physician specialties of surgery and oncology, longer clinical experience, and physicians having no religion but a specific philosophy. In all 12 components of a good death, there were significant differences by country. Japanese physicians regarded physical comfort and autonomy as significantly more important and regarded preparation, religion, not being a burden to others, receiving maximum treatment, and dying at home as less important. Taiwanese physicians regarded life completion and being free from tubes and machines as significantly more important. Korean physicians regarded being cognitively intact as significantly more important. There are considerable intercountry differences in physicians' attitudes toward autonomy and physician-perceived good death. East Asia is not culturally the same; thus, palliative care should be provided in a culturally acceptable manner for each country

Why we need more poetry in palliative care.

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Davies, Elizabeth A

2018-03-23

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

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

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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.

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.

[Massage and music therapy for relief of anxiety of cancer patients in palliative care].

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Mantovan, Franco; Rauter, Elisabeth; Müller, Irene

2009-03-01

In palliative care between 13.9 and 25 percent of all patients suffering from cancer show signs of anxiety disorders. Up to 75 percent of these patients suffer from non-pathologic anxiety, which has a negative impact on the patients' quality of life. Therefore it is important to provide interventions that are able to reduce anxiety of cancer patients. Massage and music therapy are effective interventions for minimizing anxiety of cancer patients in palliative care. An empathic attitude of the nurse increases the effect of the mentioned interventions. While there is evidence of the interventions mentioned it is yet necessary to further explore these in additional clinical trials to consolidate the already existing results.

Palliative care team visits. Qualitative study through participant observation.

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

2016-03-30

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

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

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Regard, Lionel

2018-01-01

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

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 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.

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

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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.

Reflections on Palliative Care from the Jewish and Islamic Tradition

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Michael Schultz

2012-01-01

Full Text Available Spiritual care is a vital part of holistic patient care. Awareness of common patient beliefs will facilitate discussions about spirituality. Such conversations are inherently good for the patient, deepen the caring staff-patient-family relationship, and enhance understanding of how beliefs influence care decisions. All healthcare providers are likely to encounter Muslim patients, yet many lack basic knowledge of the Muslim faith and of the applications of Islamic teachings to palliative care. Similarly, some of the concepts underlying positive Jewish approaches to palliative care are not well known. We outline Jewish and Islamic attitudes toward suffering, treatment, and the end of life. We discuss our religions' approaches to treatments deemed unnecessary by medical staff, and consider some of the cultural reasons that patients and family members might object to palliative care, concluding with specific suggestions for the medical team.

[For the betterment of home palliative care].

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Midorikawa, Yasuhiko; Iiduka, Masashi

2010-12-01

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

Is the qualitative research interview an acceptable medium for research with palliative care patients and carers?

OpenAIRE

Shipman Cathy; Gysels Marjolein; Higginson Irene J

2008-01-01

Abstract Background Contradictory evidence exists about the emotional burden of participating in qualitative research for palliative care patients and carers and this raises questions about whether this type of research is ethically justified in a vulnerable population. This study aimed to investigate palliative care patients' and carers' perceptions of the benefits and problems associated with open interviews and to understand what causes distress and what is helpful about participation in a...

Teleconsultation for integrated palliative care at home: A qualitative study

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

2016-01-01

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

[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

Palliative Sedation in Patients With Cancer.

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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.

The problems experienced by patients with cancer and their needs for palliative care.

NARCIS (Netherlands)

Osse, B.H.P.; Vernooy-Dassen, M.J.F.J.; Schade, E.; Grol, R.P.T.M.

2005-01-01

OBJECTIVES: To investigate the problems that patients experience and their met- and unmet needs for professional help. This information is necessary to tailor palliative care to patient needs. PATIENTS AND METHODS: Patients (n=94) with disseminated cancer completed a validated checklist with 90

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

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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.

Online palliative care and oncology patient education resources through Google: Do they meet national health literacy recommendations?

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Prabhu, Arpan V; Crihalmeanu, Tudor; Hansberry, David R; Agarwal, Nitin; Glaser, Christine; Clump, David A; Heron, Dwight E; Beriwal, Sushil

The Google search engine is a resource commonly used by patients to access health-related patient education information. The American Medical Association and National Institutes of Health recommend that patient education resources be written at a level between the third and seventh grade reading levels. We assessed the readability levels of online palliative care patient education resources using 10 readability algorithms widely accepted in the medical literature. In October 2016, searches were conducted for 10 individual terms pertaining to palliative care and oncology using the Google search engine; the first 10 articles written for the public for each term were downloaded for a total of 100 articles. The terms included palliative care, hospice, advance directive, cancer pain management, treatment of metastatic disease, treatment of brain metastasis, treatment of bone metastasis, palliative radiation therapy, palliative chemotherapy, and end-of-life care. We determined the average reading level of the articles by readability scale and Web site domain. Nine readability assessments with scores equivalent to academic grade level found that the 100 palliative care education articles were collectively written at a 12.1 reading level (standard deviation, 2.1; range, 7.6-17.3). Zero articles were written below a seventh grade level. Forty-nine (49%) articles were written above a high school graduate reading level. The Flesch Reading Ease scale classified the articles as "difficult" to read with a score of 45.6 of 100. The articles were collected from 62 Web site domains. Seven domains were accessed 3 or more times; among these, www.mskcc.org had the highest average reading level at a 14.5 grade level (standard deviation, 1.4; range, 13.4-16.1). Most palliative care education articles readily available on Google are written above national health literacy recommendations. There is need to revise these resources to allow patients and their families to derive the most

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

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

2017-09-01

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

Humor Assessment and Interventions in Palliative Care: A Systematic Review

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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.

Development of the ProPal-COPD tool to identify patients with COPD for proactive palliative care

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Duenk RG

2017-07-01

Full Text Available RG Duenk,1 C Verhagen,1 EM Bronkhorst,2 RS Djamin,3 GJ Bosman,4 E Lammers,5 PNR Dekhuijzen,6 KCP Vissers,1 Y Engels,1,* Y Heijdra6,* 1Department of Anesthesiology, Pain and Palliative Medicine, 2Department of Health Evidence, Radboud University Medical Center, Nijmegen, 3Department of Respiratory Medicine, Amphia Hospital, Breda, 4Department of Respiratory Medicine, Slingeland Hospital, Doetinchem, 5Department of Respiratory Medicine, Gelre Hospitals, Zutphen, 6Department of Pulmonary Diseases, Radboud University Medical Center, Nijmegen, the Netherlands *These authors contributed equally to this work Background: Our objective was to develop a tool to identify patients with COPD for proactive palliative care. Since palliative care needs increase during the disease course of COPD, the prediction of mortality within 1 year, measured during hospitalizations for acute exacerbation COPD (AECOPD, was used as a proxy for the need of proactive palliative care.Patients and methods: Patients were recruited from three general hospitals in the Netherlands in 2014. Data of 11 potential predictors, a priori selected based on literature, were collected during hospitalization for AECOPD. After 1 year, the medical files were explored for the date of death. An optimal prediction model was assessed by Lasso logistic regression, with 20-fold cross-validation for optimal shrinkage. Missing data were handled using complete case analysis.Results: Of 174 patients, 155 patients were included; of those 30 (19.4% died within 1 year. The optimal prediction model was internally validated and had good discriminating power (AUC =0.82, 95% CI 0.81–0.82. This model relied on the following seven predictors: the surprise question, Medical Research Council dyspnea questionnaire (MRC dyspnea, Clinical COPD Questionnaire (CCQ, FEV1% of predicted value, body mass index, previous hospitalizations for AECOPD and specific comorbidities. To ensure minimal miss out of patients in need

Palliative care patients' perceptions of the work involved in understanding and managing the network of care provision surrounding them.

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Jarrett, N; Porter, K; Davis, C; Lathlean, J; Duke, S; Corner, J; Addington-Hall, J

2017-06-01

To explore the work carried out for cancer palliative care patients in understanding and dealing with the often large network of care provision surrounding them. Qualitative thematic analysis of interviews with 24 patients (aged 48-85 years) with 15 different types/sites of cancer and palliative care needs. The main theme of 'patient work-their strategies and project management' is presented. Subthemes included: being organised and keeping records; planning ahead and coordinating care; information gathering; understanding the hierarchy and knowing who the key people are; strategies to remember names and roles; understanding and 'working the system'. Insights are given into the work carried out on patients' behalf by family, although it was unclear who would do this work if no family was available. Some of the challenges faced by patients and families are identified. These included limited information; uncertainty when care is transferred between different teams or locations; deciding who to contact and how; and negotiating through gatekeepers. The number and variety of people contributing to the care of a cancer palliative care patient can be difficult for patients and family to comprehend. Work is required by patients or family on their behalf to achieve the level of understanding required to become accomplished at navigating the system and project managing their care organisation, and is probably influenced by role expectations and previous experience. Much of this additional, often hidden, workload for patients and family could probably be reduced with clear, timely information provision by health professionals. 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.

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

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Ticiane Dionizio de Sousa Matos

Full Text Available ABSTRACT Objectives: 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. Method: 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. Results: 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 (p<0.01 in both groups. Male sex, Catholic religion and the Brief Religious-Spiritual Coping score independently influenced the quality of life scores (p<0.01. Conclusion: both groups presented high quality of life and Religious-Spiritual Coping scores. Male participants who were active Catholics with higher Religious-Spiritual Coping scores presented a better perceived quality of life, suggesting that this coping strategy can be stimulated in palliative care patients.

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

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

2014-05-01

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

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

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

2017-08-01

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

Significances and meanings of the musical identity of patients and relatives receiving oncological palliative care

Directory of Open Access Journals (Sweden)

Vladimir Araujo de Silva

2014-03-01

Full Text Available This phenomenological study was structured on Heidegger’s theoretical-philosophical framework, with the objective of unveiling the significances and meanings of the musical identity of patients and relatives under oncological palliative care. Individual interviews were performed with 12 clients (seven patients and five relatives staying at the support residence of the Maringa Female Network Against Cancer. A total of eight musical meetings were performed between January and February of 2011. I understood that the musical identity of the evidenced beings refers to the religious and country music styles, that their significances and meanings are connected to their spirituality and the significant events of their historicity, and that their mood and reflection intermediated by music can influence their musical choice. I gave evidence to the need to consider the music identity and empowerment in musical choices, which carries existential, social, cultural, spiritual and family aspects as qualifying elements of nursing in palliative care. Descriptors: Nursing Care; Oncology Nursing; Music; Music Therapy; Palliative Care.

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

NARCIS (Netherlands)

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

2015-01-01

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

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

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

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

2016-09-01

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

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

DEFF Research Database (Denmark)

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

2018-01-01

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...... 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...

Palliative care for patients in the USA with amyotrophic lateral sclerosis: current challenges

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Houseman G

2015-11-01

Full Text Available Gail Houseman,1 Mary Kelley2 1The ALS Association Greater Philadelphia Chapter, Ambler, PA, USA; 2Department of Neurology, ALS Center at Penn Medicine, Philadelphia, PA, USA Abstract: Amyotrophic lateral sclerosis (ALS is a motor neuron disease that results in eventual paralysis of all voluntary muscles. Cognitive impairment may be a co-occurring condition with the ALS patient. Palliative care, which involves symptom management, is the most utilized treatment of choice. Managing the symptoms of ALS can be challenging. This paper provides experience-based facts on daily care provision in the USA and some practical guidelines. Keywords: amyotrophic lateral sclerosis, ALS, palliative care, challenges, symptom management

The palliative care needs of patients with stage 3 and 4 HIV infection

Directory of Open Access Journals (Sweden)

C Jameson

2008-01-01

Conclusions : Medical problems with poor symptom control were the commonest problems, followed by socioeconomic issues related to no income, poor living conditions and fears for the future of their children. Spiritual and psychological issues were surprisingly less of a problem possibly because the immediacy and severity of the demands of day-to-day survival. As a result of the needs identified among these patients, it became apparent that a palliative care ward catering to these needs was needed. The guiding principles in the development of this ward were the need for privacy, for a teamwork approach and for meticulous medical care, all of which underpin good palliative care.

Predictors of home death of home palliative cancer care patients: a cross-sectional nationwide survey.

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Fukui, Sakiko; Fujita, Junko; Tsujimura, Mayuko; Sumikawa, Yuka; Hayashi, Yayoi

2011-11-01

To identify factors influencing the place of death among home palliative cancer care patients, focusing on the role of nurses in terms of pre- and post-discharge from hospital to home care settings. A cross-sectional nationwide questionnaire survey was conducted at 1000 randomly selected homecare agencies in Japan. The questionnaires were completed by primary community nurses of home palliative patients just after their discharge. A total of 568 responses were analyzed (effective response rate, 69%). Multivariate logistic regression analysis revealed the following independent factors of place of death among those patients: desire for home death at referral by both patient and family caregiver; caregiver relationship to patient as daughter or daughter-in-law; totally bedridden functional status of patient; patient not suffering from depression and/or anxiety at referral; patients and caregivers duly informed about the dying process/death in detail, as well as instructed by community nurses about pain management and how to treat/prevent bedsores in home care settings. This study demonstrated the importance of both the hospital and community nurses' role in increasing the patients' chance of dying at home. Hospital nurses should support early transfer to home palliative care according to their assessment of the desire of patient/family caregiver for home death, the patients' clinical status, and caregivers' ability to provide patient care at home. Community nurses should inform patients/family caregiver in detail about the dying process/death just after discharge, relieve patient pain, treat/prevent bedsores, and instruct family caregivers on their symptom control. Crown Copyright © 2011. Published by Elsevier Ltd. All rights reserved.

Palliative home care: A designer′s perspective

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Tigmanshu Bhatnagar

2015-01-01

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

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

2014-11-01

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

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.

Opioid use in palliative care

African Journals Online (AJOL)

Repro

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

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

Evaluating an holistic assessment tool for palliative care practice.

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McIlfatrick, Sonja; Hasson, Felicity

2014-04-01

To evaluate a holistic assessment tool for palliative care practice. This included identifying patients' needs using the holistic tool and exploring the usability, applicability and barriers and facilitators towards implementation in practice. The delivery of effective holistic palliative care requires a careful assessment of the patients' needs and circumstances. Whilst holistic assessment of palliative care needs is advocated, questions exist around the appropriateness of tools to assist this process. Mixed-method research design. Data collection involved an analysis of piloted holistic assessments undertaken using the tool (n = 132) and two focus groups with healthcare professionals (n = 10). The tool enabled health professionals to identify and gain an understanding of the needs of the patients, specifically in relation to the physical healthcare needs. Differences, however, between the analysis of the tool documentation and focus group responses were identified in particular areas. For example, 59 (68·8%) respondents had discussed preferred priorities of care with the patient; however, focus group comments revealed participants had concerns around this. Similarly, whilst over half of responses (n = 50; 57·5%) had considered a prognostic clinical indicator for the patient as an action, focus group results indicated questions around healthcare professionals' knowledge and perceived usefulness of such indicators. Positive aspects of the tool were that it was easy to understand and captured the needs of individuals. Negative aspects of the tool were that it was repetitive and the experience of assessors required consideration. The tool evaluation identified questions regarding holistic assessment in palliative care practice and the importance of communication. A holistic assessment tool can support patient assessment and identification of patients' needs in the 'real world' of palliative care practice, but the 'tool' is merely an aid to assist professionals to

The Use of Emergency Medication Kits in Community Palliative Care: An Exploratory Survey of Views of Current Practice in Australian Home-Based Palliative Care Services.

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Bullen, Tracey; Rosenberg, John P; Smith, Bradley; Maher, Kate

2015-09-01

Improving symptom management for palliative care patients has obvious benefits for patients and advantages for the clinicians, as workload demands and work-related stress can be reduced when the emergent symptoms of patients are managed in a timely manner. The use of emergency medication kits (EMKs) can provide such timely symptom relief. The purpose of this study was to conduct a survey of a local service to examine views on medication management before and after the implementation of an EMK and to conduct a nationwide prevalence survey examining the use of EMKs in Australia. Most respondents from community palliative care services indicated that EMKs were not being supplied to palliative care patients but believed such an intervention could improve patient care. © The Author(s) 2014.

Mobile Technology Applications in Cancer Palliative Care.

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

2018-01-01

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

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

DEFF Research Database (Denmark)

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

2018-01-01

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

Improving End-of-Life Care: Palliative Care Embedded in an Oncology Clinic Specializing in Targeted and Immune-Based Therapies.

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Einstein, David J; DeSanto-Madeya, Susan; Gregas, Matthew; Lynch, Jessica; McDermott, David F; Buss, Mary K

2017-09-01

Patients with advanced cancer benefit from early involvement of palliative care. The ideal method of palliative care integration remains to be determined, as does its effectiveness for patients treated with targeted and immune-based therapies. We studied the impact of an embedded palliative care team that saw patients in an academic oncology clinic specializing in targeted and immune-based therapies. Patients seen on a specific day accessed the embedded model, on the basis of automatic criteria; patients seen other days could be referred to a separate palliative care clinic (usual care). We abstracted data from the medical records of 114 patients who died during the 3 years after this model's implementation. Compared with usual care (n = 88), patients with access to the embedded model (n = 26) encountered palliative care as outpatients more often ( P = .003) and earlier (mean, 231 v 109 days before death; P 7 days before death-a core Quality Oncology Practice Initiative metric-was higher in the embedded model (odds ratio, 5.60; P = .034). Place of death ( P = .505) and end-of-life chemotherapy (odds ratio, 0.361; P = .204) did not differ between the two arms. A model of embedded and automatically triggered palliative care among patients treated exclusively with targeted and immune-based therapies was associated with significant improvements in use and timing of palliative care and hospice, compared with usual practice.

Pain and palliative care in HIV/AIDS patients | Soyannwo | Discovery ...

African Journals Online (AJOL)

Pain and palliative care in HIV/AIDS patients. Olaitan A Soyannwo. Abstract. No Abstract. Discovery and Innovation Vol. 17, 2005: 50-51. Full Text: EMAIL FULL TEXT EMAIL FULL TEXT · DOWNLOAD FULL TEXT DOWNLOAD FULL TEXT · http://dx.doi.org/10.4314/dai.v17i2.15704 · AJOL African Journals Online. HOW TO ...

Perceptions of the care received from Australian palliative care services: A caregiver perspective.

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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

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

Science.gov (United States)

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

2016-05-01

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

Continuous palliative sedation for cancer and noncancer patients.

Science.gov (United States)

Swart, Siebe J; Rietjens, Judith A C; van Zuylen, Lia; Zuurmond, Wouter W A; Perez, Roberto S G M; van der Maas, Paul J; van Delden, Johannes J M; van der Heide, Agnes

2012-02-01

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. To study the practice of continuous palliative sedation for both cancer and noncancer patients. In 2008, a structured questionnaire was sent to 1580 physicians regarding their last patient receiving continuous sedation until death. A total of 606 physicians (38%) filled out the questionnaire, of whom 370 (61%) reported on their last case of continuous sedation (cancer patients: n=282 [76%] and noncancer patients: n=88 [24%]). More often, noncancer patients were older, female, and not fully competent. Dyspnea (odds ratio [OR]=2.13; 95% confidence interval [CI]: 1.22, 3.72) and psychological exhaustion (OR=2.64; 95% CI: 1.26, 5.55) were more often a decisive indication for continuous sedation for these patients. A palliative care team was consulted less often for noncancer patients (OR=0.45; 95% CI: 0.21, 0.96). Also, preceding sedation, euthanasia was discussed less often with noncancer patients (OR=0.42; 95% CI: 0.24, 0.73), whereas their relatives more often initiated discussion about euthanasia than relatives of cancer patients (OR=3.75; 95% CI: 1.26, 11.20). The practice of continuous palliative sedation in patients dying of cancer differs from patients dying of other diseases. These differences seem to be related to the less predictable course of noncancer diseases, which may reduce physicians' awareness of the imminence of death. Increased attention to noncancer diseases in palliative care practice and research is, therefore, crucial as is more attention to the potential benefits of palliative care consultation. Copyright © 2012 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.

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

Science.gov (United States)

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

2013-07-23

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

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

Science.gov (United States)

2013-01-01

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

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.

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

African Journals Online (AJOL)

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

An evaluation of routine specialist palliative care for patients on the Liverpool Care Pathway.

Science.gov (United States)

Thompson, Jo; Brown, Jayne; Davies, Andrew

2014-01-01

This report describes a service evaluation of the 'added value' of routine specialist palliative care team (SPCT) involvement with patients on the Liverpool Care Pathway for the Dying Patient (LCP). In the authors' hospital, patients that are commenced on the LCP are routinely referred to the SPCT. They are reviewed on the day of referral and then at least every other day, depending on the clinical situation. The data for this report was obtained by reviewing the SPCT's clinical database and the patients' LCP proformas. The SPCT intervened in the care of 80% of 158 newly referred patients, e.g. for alteration of continuous subcutaneous infusion (23%) or alteration of use of non-pharmacological interventions (21%). Furthermore, 11% of patients were taken off the LCP, around one quarter of whom were later put back on. The authors' model of care could overcome many of the issues relating to the LCP and would ameliorate the developing vacuum of care for patients at the end of life.

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

Science.gov (United States)

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

2018-04-24

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

Intervention for depression among palliative care patients and their families: A study protocol for evaluation of a training program for professional care staff.

Science.gov (United States)

Hallford, David J; McCabe, Marita P; Mellor, David; Davison, Tanya E; Goldhammer, Denisa L; George, Kuruvilla; Storer, Shane

2011-06-13

Clinical depression is highly prevalent yet under-detected and under-treated in palliative care settings and is associated with a number of adverse medical and psychological outcomes for patients and their family members. This article presents a study protocol to evaluate a training intervention for non-physician palliative care staff to improve the recognition of depression and provide support for depressed patients and their family members. Details of the hypotheses and expected outcomes, study design, training program development and evaluation measures are described. A randomised controlled trial will be implemented across two palliative care services to evaluate the "Training program for professional carers to recognise and manage depression in palliative care settings". Pre-, post- and three-month follow-up data will be collected to assess: the impact of the training on the knowledge, attitudes, self-efficacy and perceived barriers of palliative care staff when working with depression; referral rates for depression; and changes to staff practices. Quantitative and qualitative methods, in the form of self-report questionnaires and interviews with staff and family members, will be used to evaluate the effectiveness of the intervention. This study will determine the effectiveness of an intervention that aims to respond to the urgent need for innovative programs to target depression in the palliative care setting. The expected outcome of this study is the validation of an evidence-based training program to improve staff recognition and appropriate referrals for depression, as well as improve psychosocial support for depressed patients and their family members. Australia and New Zealand Clinical Trials Register (ANZCTR): ACTRN12610000183088.

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

Directory of Open Access Journals (Sweden)

Priya Darshini Kulkarni

2011-01-01

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

Palliative Care Options for a Young Adult Patient with a Diffuse Intrinsic Pontine Glioma.

Science.gov (United States)

Sison, Julian; Tran, Hung; Margol, Ashley; Tiwari, Nishant; Garcia, Karla M; Cotter, Jennifer; Kiehna, Erin; Olch, Arthur J; Wong, Kenneth

2017-08-18

Diffuse intrinsic pontine gliomas (DIPGs) are rare but devastating brain tumors that occur primarily in children. These gliomas have poor prognoses and present options focus on palliation of symptoms and prolongation of life. Here, we present a case of a 16-year-old female diagnosed with a DIPG whose age group has been mostly left out of discussions regarding psychosocial support options. This report is meant to start a conversation about the different support options available at our institution that have shown promising results in the literature for palliative care applications. These options can include camps for patients with brain tumors, psychological counseling, the Ronald McDonald House, and other psychosocial programs. Many of these programs can be tailored to meet the specific needs of adolescent and young adult (AYA) patients and will hopefully be integrated into a comprehensive palliative care regimen in future studies.

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,

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

Science.gov (United States)

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

2016-07-01

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

Oropharyngeal Candidiasis in Palliative Care Patients in Denmark

DEFF Research Database (Denmark)

Astvad, Karen; Johansen, Helle Krogh; Høiby, Niels

2015-01-01

BACKGROUND: Oropharyngeal candidiasis (OPC) is a significant cause of morbidity, especially among patients with advanced cancer. The incidence and significance of yeast carriage and OPC in the palliative care setting in Denmark is unknown. The best diagnostic strategy and treatment regimen has...... positive and negative predictive value (∼50%). Candida albicans accounted for half of the isolates cultured. No C. albicans isolate displayed acquired fluconazole resistance; however, 3 out of 12 isolates of normally fluconazole-susceptible species were fluconazole resistant. These were all from patients...... recently treated with azoles. CONCLUSIONS: In total, 52% of culture-positive patients harbored at least one isolate with innately or acquired decreased fluconazole susceptibility. Therefore, susceptibility testing appears recommendable for patients with clinical signs of OPC....

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

Science.gov (United States)

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

2016-01-01