Palliative Hospice Research Articles

Practical Model for Prognostication in Advanced Cancer Patients: Is Less More?

Prognostication of life expectancy is of utmost importance to patients, families, and oncologists, particularly in the advanced cancer setting. Accurate prognostication is essential for oncologists in formulating their recommendations. Patients’ predicted survival can have a profound impact on important decisions, such as palliative care and hospice referral, initiation of specific medications, and avoidance of aggressive therapies. As cancer patients progress over the course of their illness, knowing what to expect can also provide them with a sense of control and facilitate the process of advance care planning. 1 Clinicians have been consistently found to overestimate survival. 2 Therefore, prognostication tools are needed to enhance the accuracy of survival predictions. Traditional prognosis for cancer patients is primarily based on tumor-related factors, specifically disease burden and aggressiveness as indicated by various clinical, imaging, laboratory, pathologic, and molecular features. Prognostic models consisting of various combinations of these factors have been validated to provide highly accurate estimates of long-term survival for specific cancer types, allowing oncologists to provide risk-adapted treatment plans and to inform patients of their general prognosis. However, they tend to be less precise when it comes to predicting short-term outcomes in advanced states of disease, limiting their utility in day-to-day clinical decision making for patients with progressive cancer. To obtain a more accurate estimate of short-term prognosis, newer models have incorporated various patient-related prognostic factors, such as performance status, comorbidities, and physiologic parameters. While a number of prognostic models are now available for advanced cancer patients 3,4 and far advanced cancer patients, 5,6 there are significant barriers preventing their use in routine practice. These include limited applicability due to complexity of the model, restricted generalizability secondary to poor patient selection for the derivation cohort, and overall limited accuracy.

The Volunteer Program in a Children's Hospice

Canuck Place Children's Hospice (CPCH) is regarded as one of the leading pediatric palliative care systems in the world. Since 1995, it has been providing hospice care free of charge to children and their families living with life-threatening conditions. The pediatric palliative hospice is a relatively new practice in health care, in comparison to the longstanding adult model. As a result, development and implementation of volunteer programs in pediatric hospices is not currently represented in literature. With over 300 volunteers at present, CPCH has built a successful program that can serve as a model in pediatric volunteer services. To present the unique volunteer roles and experience at CPCH, and share ways volunteers work to support the efforts of the clinical team. Strategies to address current challenges in the volunteer program are also addressed. Descriptive design. A current CPCH volunteer discusses the volunteer program. Interviews were conducted with the founding volunteer director of CPCH and current volunteers. The volunteer program at CPCH fully embraces the life of each child and family. Volunteer selection is the groundwork for ensuring a cohesive work force, while training equips volunteers with the knowledge to carry out their role with confidence. Areas of improvement that have been recognized include offering effective feedback to volunteers and delivering adequate level of training for non-direct care roles. The talents of volunteers at CPCH are diverse, and CPCH aims to recognize and thank volunteers for their continuous contributions.

The voluntary contribution to UK childhood bereavement services: Locating the place and experiences of unpaid staff

This paper describes the unpaid contribution to UK childhood bereavement service provision. Data on staffing was gained through a national postal survey and eight organizational case studies. Compared to volunteers in specialist palliative care and hospice settings, unpaid staff were drawn from a younger age range, were more likely to be in full or part-time employment, and had more personal experience of a close bereavement. Whilst services were located in both the statutory and non-statutory sector, the use of unpaid staff was not so clearly differentiated. Three types of staffing arrangements were identified: services run solely by paid staff (11%), solely by unpaid staff (14%), or by a mixture of both (73%). The study highlighted the ambiguity in defining “voluntary,” and the difference in the use of unpaid staff, both within and between services. The terms “operational” and “non-operational” staff, and “core” and “support” operational activities, were introduced to reflect more fully the diversity, levels of responsibility, and extent to which services rely on unpaid staffing to deliver their core work. The changing nature of the UK non-statutory sector and the increasing pressure to bureaucratize services creates additional complexity that will need to be addressed in the near future.

Countertransference in Palliative Care and Hospice

Countertransference in Palliative Care and Hospice

DNR Does Not Mean No Care

End-of-life care is a complicated topic, especially in a neurological intensive care unit. Death is a daily part of nursing care and should be treated with respect and a definite plan of care. Unfortunately, there are still hospitals that do not have protocols to deal with this outcome. The administration of opioids and appropriate sedation can be the difference between a calm serene death or one that is fraught with dyspnea, struggling, and unhappy families. Every hospital should have palliative care and hospice planning. This case study is about a dying patient that did not receive palliative care appropriately; however, through determination and personal knowledge of death and dying, a neurosurgical nurse was able to change the way a hospital dealt with do-not-resuscitate patients. Do not resuscitate does not mean no care; it means a different kind of care that can best be achieved through end-of-life protocols and education.

303: A Screening Protocol to Identify Unmet Palliative Care and Hospice Needs of Elderly Patients in the ED

303: A Screening Protocol to Identify Unmet Palliative Care and Hospice Needs of Elderly Patients in the ED

The Development of Palliative Care Programs in the Veterans Administration

ABSTRACT The U.S. Department of Veterans Affairs (VA) has been a leader in program development and service delivery in the areas of geriatrics, hospice and palliative care for decades. Zelda Foster, MSW, serving as the Chief of Social Work Services at the Brooklyn VA Hospital for almost 20 years, was a force in the early days of the palliative care and hospice movement in the United States, publishing a seminal article in 1965, and contributing through educational initiatives, program development, information dissemination and mentorship of countless social workers. With an early recognition of the demographic imperative of aging veterans, the VA established a number of innovative programs which have been widely replicated outside of the VA. Zelda Foster was a central figure in the evolution of these programs and a strong and effective advocate for the inclusion of social workers. She deserves much credit for the fact that social workers are now centrally involved in an array of leadership activities in palliative and end-of-life care both within and outside of VA.

Indigenous Understanding of Hospice and Palliative Care

The following article presents findings from a study conducted in the Northern Territory of Australia that explores Indigenous peoples' understanding of the Western notion of palliative care and hospice. The findings provide practical insights into the problems occurring at the interface of Western palliative care and traditional Indigenous care of the dying. In so doing, the findings can inform the development of service provision for all involved in end-of-life care for Aboriginal people. If palliative care is to be introduced to Aboriginal people, it is imperative that it be done in a culturally appropriate way.

The variations in symptom clusters related to well-being in palliative care patients during the final weeks of life

19612 Background: The purpose of this study was to determine whether the relationships between symptoms and well-being, as experienced by palliative care patients, changed as patients approached death. Methods: Data were extracted from a database that included Edmonton Symptom Assessment System scores collected from palliative care patients on Day 7 of Weeks 5 (n=123), 2 (n=115), and 1 (n=113) prior to death between 1995 and 2000. The model contained 18 effect parameters. Based on standard sample size requirements for structural equation modeling of 10 cases per indicator variable, the study was adequately powered for all three time points. The majority of patients had advanced cancer and were receiving care in either a tertiary palliative care or hospice setting. All participants had Folstein Mini- Mental Status Examination scores of 22 or higher at the time of original data collection. A causal model, based primarily on clinical discussions, linking pain, anxiety, nausea, shortness of breath, drowsiness, loss of appetite, tiredness, depression, and well-being was proposed. The model was tested against the data from all three time points, using LISREL, version 8.7.2s. Results: The model fit the data for all time points, but was revised slightly based on the modification indices. The final Goodness of Fit Test values were χ2= 4.2 (d.f.=8, p=.84), χ2= 13.3 (d.f.=9, p=.15), and χ2= 5.5 (d.f.=9, p=.79) respectively. With respect to tiredness, depression and well-being, the model explained at least 70% of the variance at Week 5, between 57% and 83% of the variance at Week 2, and 42% to 58% of the variance in Week 1. Nausea was unimportant in all of the models. The two strongest effects, persisting over all three time periods, were those linking anxiety to depression, and drowsiness to tiredness, reflecting strong stability in patient rankings even as health declined and treatment changed. Conclusions: The symptom clusters in this study changed over time, in disagreement with existing research that assumes the relationships between symptoms within symptom clusters remain stable. An improved understanding of alterations in symptom clusters may contribute to improved control of patient comfort, quality of life, and quality of death. No significant financial relationships to disclose.

Direct decompressive surgery with post-operative radiotherapy (S + RT) versus radiotherapy (RT) alone for the treatment of metastatic epidural spinal cord compression (MESCC): A cost-utility analysis using Ontario health economic data

8570 Background: For selected patients with MESCC, S + RT has recently been shown to improve patients’ ability to ambulate and reduce opioid and corticosteroid use when compared with RT alone, with a trend towards survival benefit. (Patchell et al Lancet 2005) The economic impact of adopting this intervention has not been assessed previously. Methods: An analytic decision model was constructed based on the results from Patchell et al. (2005) The perspective of the public health care insurer of Ontario was adopted for the analysis. Costing was performed by using Ontario data for the following items: surgery, radiotherapy, hospitalization, home care services, palliative hospice, and medications. Utilities were obtained from the Harvard University Catalogue of preference score (HUC) and the Health Outcomes Data Repository Data - Health Utility list (HODaR). The primary analysis is a cost-utility analysis comparing surgery and radiotherapy (S+RT) with radiotherapy alone (RT). A probabilistic sensitivity analysis with Monte-Carlo simulation was performed. Results: When comparing S+ RT with RT alone, the incremental cost-effectiveness ratio (ICER) is CAD$ 43,796 per QALY gained. The cost-utility of S + RT is CAD$ 509,084 per QALY and that of RT alone is CAD$ 2,381,246 per QALY. S + RT costs approximately CAD$ 33 more when compared with RT alone per ambulatory day gained. The cost of surgery is partially offset by the decreased cost of hospice palliative care since more patients remain ambulatory and stay at home. Monte-Carlo simulation showed that there is a 25% chance that S + RT may dominate RT alone. The results are sensitive but generally robust to changes in assumptions about the costs of surgery, home care and palliative hospice care. Conclusions: S+RT is likely cost-effective when compared with RT alone for the treatment of MESCC in selected patients, and should be considered by health care policy makers. No significant financial relationships to disclose.

Abstracts from The Annual Assembly of Hospice and Palliative Medicine and Hospice and Palliative Nurses Association

Abstracts from The Annual Assembly of Hospice and Palliative Medicine and Hospice and Palliative Nurses Association

A Simple Wish…Unfulfilled

A Simple Wish…Unfulfilled

Hospital-Based Palliative Care and Hospice Services

Hospital-Based Palliative Care and Hospice Services

End-of-Life Care: Lessons from Other Nations

Palliative care and hospice services have evolved across the globe in different contexts and in different ways, although many of the challenges faced are similar. Comparison between countries helps to identify the best solutions for individual patients and their families, who have complex needs and problems. This paper describes the globally shared challenges and beginnings in hospice and palliative care. It reviews evolution of services and approaches. It compares the models of hospice and palliative care in the United States and the United Kingdom, where pioneer hospices were developed through the work of Dame Cicely Saunders, and then seeks to highlight ways to learn from the different approaches to address common questions. Several research recommendations result from this review. In many countries the research agenda in palliative and end-of-life care must move from describing need (where there are ample studies) to understanding how and determining whether services and interventions work, for whom, and when. Studies should consider the whole trajectory of illness, particularly in slowly progressive or relapsing conditions (including neurological conditions). Future studies should work toward the use of a similar set of core outcome measures, as well as take advantage of the opportunity to undertake "natural experiments" by comparing and contrasting care systems developed in different contexts around the world.

Assessment and Psychological Treatment of Depression in Older Adults with Terminal or Life-Threatening Illness.

Depression decreases the quality of life and hinders efforts to palliate symptoms of adults with terminal or life-threatening illness. Nevertheless, depression often may go undetected and untreated in palliative care and hospice settings due to a number of factors, including the overlap of depressive symptoms with those of serious medical illness and concern that frail elderly patients cannot tolerate psychotherapy or antidepressant treatment. In this paper we review the available research regarding assessment and treatment of depression in older adults with terminal or life-threatening illness, focusing on patients who are seen in palliative care, cancer treatment, or hospice settings. Although the prevalence of depression is relatively high in these settings in mixed-age adult samples, studies focused exclusively on older adults are rare and there appear to be no randomized controlled trials of psychotherapy conducted to date that specifically address their needs. There are, however, promising psychological approaches featured in case reports and pilot studies that are consistent with empirically supported therapies for the general treatment of depression in older adults. Based on these preliminary findings and reports, we offer tentative recommendations for the assessment and treatment of depression in terminally ill older adults. We conclude that controlled research on psychotherapy for late-life depression is both feasible and urgently needed in palliative care, cancer care, and hospice settings.

Role of the Speech-Language Pathologist in Palliative Hospice Care

In reviewing the literature, there are few articles describing the role of the speech-language pathologist in hospice. Communication impairments can impact upon the hospice team's ability to provide symptom control and supportive psychosocial care, and diminish the patient's ability to guide the decision making process and maintain social closeness with family. Swallowing difficulties may result in discomfort for patients and concern from caregivers. Patient care provided by the speech-language pathologist can align with the framework of the World Health Organization's components of palliative care. Four primary roles of the speech-language pathologist in hospice can be described. (1) To provide consultation to patients, families, and members of the hospice team in the areas of communication, cognition, and swallowing function; (2) To develop strategies in the area of communication skills in order to support the patient's role in decision making, to maintain social closeness, and to assist the client in fulfillment of end-of-life goals; (3) To assist in optimizing function related to dysphagia symptoms in order to improve patient comfort and eating satisfaction, and promote positive feeding interactions for family members and (4) To communicate with members of the interdisciplinary hospice team, to provide and receive input related to overall patient care. Further development of the speech-language pathologist as a participating member of the hospice interdisciplinary team would support the overall goal of providing quality care for patients and families served by hospice.

Voluntary consensus care standards

8073 Background: The National Consensus Project for Quality Palliative Care (NCP) is a groundbreaking initiative which originated in 2001 that aims to improve the delivery of palliative care in the United States. The NCP is a response to the need for uniformly accepted definitions of the essential elements and best practices in palliative care in order to create voluntary consensus Clinical Practice Guidelines for the establishment and development of clinical palliative care programs across the United States. Methods: To remedy this situation and improve delivery of palliative care in the United States, Voluntary Consensus Standards for Palliative Care were developed by the (NCP) and were released in January 2004. The NCP is a consortium of 5 national palliative care organizations including American Academy of Hospice and Palliative Medicine, Center to Advance Palliative Care, Hospice and Palliative Nurses Association, National Hospice and Palliative Care Organization and Partnership for Caring. A Steerin...

The Assisted Dying for the Terminally Ill Bill.

The National Council for Hospice and Specialist Palliative Care Services, in its 1997 article opposing euthanasia, acknowledged that, ‘universal availability of excellent palliative care services will not and can never eliminate all rational and persistent requests for euthanasia’

Review of Transitions in Dying and Bereavement: A Psychosocial Guide for Hospice and Palliative Care.

THE VICTORIA HOSPICE SOCIETY MOIRA CAIRNS, MARNEY THOMPSON, and WENDY WAINWRIGHT Transitions in Dying and Bereavement: A Psychosocial Guide for Hospice and Palliative Care Baltimore, MD: Health Professions Press, 2003, 408 pages (ISBN 1-87881-292-0, US$44.95 Paperback) This psychosocial guide book for hospice and palliative care represents joint effort between staff and volunteers of Victoria Hospice Society, Victoria, BC, in operation since 1980, and three talented clinicians with background in counseling, palliative care, and The staff at Victoria Hospice has been actively involved, provincially and nationally, in development of number of initiatives for palliative care training, advocacy and research, latter being weakest of their initiatives. The main objective of this book was to describe what palliative and bereavement counselors do and how they do it. The specific goal was to examine psychosocial needs and care of individuals who are dying or bereaved, with ultimate goal being improvement of quality of palliative psychosocial care services. Each chapter addresses significant transitions, identifies psychosocial issues that patients and fami lies may face, addresses team issues, and suggests tips and interventions. case studies provide human context behind these issues. My own voice presents personal stories and insights of individuals other than authors regarding care for dying patients. Perspective sections address important and overarching topics relevant to most transitions. The book starts with principles of palliative hospice care, description of Victoria Hospice's program and team, key concepts, and framework and model used to organize book (Chapter 1). Bates's (1993) definition of psychosocial domain is used to set scope of area, encompassing emotional, intellectual, spiritual, interpersonal, social, cultural and economic dimensions of dying and bereavement. In Chapter 2, they discuss psychosocial assessment and provide questions for conducting such assessment. They state that psychosocial assessments provide a core standardized reference information regarding patients... Unfortunately, no information is provided regarding current attempts in field by authors or others to develop standardized psychosocial assessment instruments to be used during palliative care and The framework for palliative care is provided by Palliative Performance Scale (PPSv2), and model of grief is based on Rando's (1984) phases of grief and Worden's (1992) grief's tasks. A metaphor of last journey through life is used along with PPSv2 to discuss transitions in palliative care and metaphor of walking through labyrinth is used to represent bereavement journey toward healing after loss. The PPSv2 is recommended as tool to assess patients who are dying. PPSv2 is an unpublished version of Palliative Performance Scale (Anderson, Downing, Hill, et al., 1996). Although The PPSv2 is recommended to assess patients who are dying, no information is provided in book (or in its web site reference) about whether this or original version is reliable and valid. The original PPS (Anderson et al., 1996) and PPSv2 only assess general physical functioning, mobility, intake, and conscious level. Based on their extensive clinical experience, in Chapter 2 authors describe psychosocial issues arising during dying journey, discuss importance of psychosocial assessment, and suggest assessment questions to ask. For psychosocial guide on palliative care, it is unfortunate that issues related to standardized psychosocial assessments are not discussed, as it would be useful to reflect on stage of scientific validity of palliative care field in general. The chronicity of disease and its recurrence, which is appropriately called the path not chosen, along with worst fears facing families are described in Chapter 3. …

Interdisciplinary teamwork in palliative care and hospice settings.

Interdisciplinary teamwork in palliative care and hospice settings.