A “CALL” for Community-Focused Palliative Care

2004 ◽  
Vol 5 (3) ◽  
pp. 167-173 ◽  
Author(s):  
Sylvia McSkimming ◽  
Marla R. London ◽  
Carol Lieberman ◽  
Carroll Quinn ◽  
Bridget Carney
Keyword(s):  
Palliative Care ◽  
Social Services ◽  
Terminal Illness ◽  
Positive Impact ◽  
Care Coordinator ◽  
Care Experience ◽  
Care Services ◽  
Life Threatening Illness ◽  
Health And Social Care ◽  
Palliative Care Services

Providing interdisciplinary coordinated health and social services has a profound positive impact on patients and families facing life-threatening illness. CALL Care is a demonstration project designed to provide this type of care and bridge gaps in the existing palliative care system. The program seeks to provide care that is comprehensive, adaptable, life-affirming, and longitudinal. Hallmarks of the approach include identification and offer of assistance to those facing terminal illness as close to diagnosis as possible, periodic comprehensive assessments of the patient and family situation, coordination of health and social care services made possible by an active interdisciplinary team process with a single care coordinator, and links to community resources. This article describes the CALL Care experience, presents several case studies illustrative of the interventions and their impact, and provides recommendations for those seeking to make a similar commitment to integrated palliative care services.

Understanding the needs of family caregivers of older adults dying with dementia

2013 ◽  
Vol 12 (3) ◽  
pp. 223-231 ◽  
Author(s):  
Genevieve N. Thompson ◽  
Kerstin Roger
Keyword(s):  
Palliative Care ◽  
Family Caregivers ◽  
Terminal Illness ◽  
English Language ◽  
Psychological Needs ◽  
Support Needs ◽  
Care Services ◽  
Unique Nature ◽  
Palliative Care Services ◽  
Services And Supports

AbstractObjectives:A challenge in understanding the needs of dementia family caregivers (DFC) within the purview of dementia as a terminal illness rests on the fact that literature in this area is dispersed across disciplines and not specifically grounded within the realm of palliative care. The objective of this paper is to describe the domains of DFC needs and their impact on the delivery of palliative care services.Methods:A literature search pertaining to dementia family caregivers and palliative/end-of-life care was conducted using the databases Medline, CINHAL, Ageline, PsychInfo, and Scopus for articles published in the English language between 1997 and 2011.Results:Supporting family caregivers of individuals with dementia throughout the disease trajectory requires consideration of caregivers : (1) physical, emotional, and psychological needs; (2) information and decisional support needs; and (3) instrumental support needs. The unique nature and prolonged duration of these needs directly influences the palliative care services and supports required by these family caregivers.Significance of results:Understanding the scope of DFC needs help further our understanding of how these needs may impact the delivery of palliative care services, and assists in developing a model of care for those dying from dementia and for their family caregivers.

scholarly journals Patients' experiences of attending an adapted cardiac rehabilitation programme for heart failure in a day hospice

2020 ◽  
Vol 26 (6) ◽  
pp. 292-300
Author(s):  
Helen Walthall ◽  
Christie Roberts ◽  
Dan Butcher ◽  
Sue Schutz
Keyword(s):  
Heart Failure ◽  
Palliative Care ◽  
Hospice Care ◽  
Positive Impact ◽  
Post Intervention ◽  
Cardiac Rehabilitation Programme ◽  
Care Services ◽  
Final Sample ◽  
Palliative Care Services ◽  
Poor Outcomes

Background: Heart failure is highly prevalent with poor outcomes, yet only a small proportion of patients receive specialist palliative care services. Aim: To explore if a programme focusing on support and symptom management of people with heart failure in a hospice environment would be acceptable and of benefit to patients. Methods: A pre/post intervention study design using mixed methods was used to evaluate the programme. The programme was delivered in 2-hour time slots over a period of 8 weeks. Participants completed three questionnaires pre- and post- and were interviewed within 1 week of completion. The study was conducted between June 2014 and January 2015. Findings: A response rate of 51.7% (n=15) was narrowed to a final sample size of 12 patients. The questionnaire results showed a positive impact on participants' wellbeing and views regarding the use of a hospice, but a desire for greater focus on emotional support. Four key themes emerged from inductive qualitative analysis: demystifying perceptions about hospice care; positivity about wellbeing; learning together; and consideration of end-of-life preparation. Conclusion: This adapted programme provides a useful model for the increased integration of palliative care into provision for those living with advancing heart failure.

scholarly journals Drivers of care costs and quality in the last 3 months of life among older people receiving palliative care: A multinational mortality follow-back survey across England, Ireland and the United States

2020 ◽  
Vol 34 (4) ◽  
pp. 513-523 ◽  
Author(s):  
Deokhee Yi ◽  
Bridget M Johnston ◽  
Karen Ryan ◽  
Barbara A Daveson ◽  
Diane E Meier ◽  
...  
Keyword(s):  
United States ◽  
Palliative Care ◽  
Home Care ◽  
Service Use ◽  
The United States ◽  
Care Services ◽  
Health And Social Care ◽  
Total Care ◽  
Palliative Care Services ◽  
Care Costs

Background: Care costs rise towards the end of life. International comparison of service use, costs and care experiences can inform quality and improve access. Aim: The aim of this study was to compare health and social care costs, quality and their drivers in the last 3 months of life for older adults across countries. Null hypothesis: no difference between countries. Design: Mortality follow-back survey. Costs were calculated from carers’ reported service use and unit costs. Setting: Palliative care services in England (London), Ireland (Dublin) and the United States (New York, San Francisco). Participants: Informal carers of decedents who had received palliative care participated in the study. Results: A total of 767 questionnaires were returned: 245 in England, 282 in Ireland and 240 in the United States. Mean care costs per person with cancer/non-cancer were US$37,250/US$37,376 (the United States), US$29,065/US$29,411 (Ireland), US$15,347/US$16,631 (England) and differed significantly ( F = 25.79/14.27, p < 0.000). Cost distributions differed and were most homogeneous in England. In all countries, hospital care accounted for > 80% of total care costs; community care 6%–16%, palliative care 1%–15%; 10% of decedents used ~30% of total care costs. Being a high-cost user was associated with older age (>80 years), facing financial difficulties and poor experiences of home care, but not with having cancer or multimorbidity. Palliative care services consistently had the highest satisfaction. Conclusion: Poverty and poor home care drove high costs, suggesting that improving community palliative care may improve care value, especially as palliative care expenditure was low. Major diagnostic variables were not cost drivers. Care costs in the United States were high and highly variable, suggesting that high-cost low-value care may be prevalent.

The Snog and Grog Club

2012 ◽  
Vol 23 (2) ◽  
pp. 147-155 ◽  
Author(s):  
Allison Kabel
Keyword(s):  
Palliative Care ◽  
Health Professionals ◽  
Day Care ◽  
The United States ◽  
Care Staff ◽  
Staff Members ◽  
Care Services ◽  
Life Threatening Illness ◽  
Palliative Care Services ◽  
End Stage

The popularity of British hospice day care signals the expanding boundaries of palliative care beyond end-stage illness. In this article, I examine the ways hospice philosophy was interpreted and implemented in an outpatient day therapy setting run by a multidisciplinary team of health professionals. Findings suggest that hospice day care staff members used several strategies to help patients cope and retain a sense of personhood while facing numerous emotional and physical challenges associated with life-threatening illness. Health professionals in the United States will need to prepare for patients accessing hospice and palliative care services earlier in the illness trajectory to take advantage of these opportunities for patient support and advocacy.

Palliative care

2019 ◽  
pp. 865-872
Author(s):  
Joseph O’Neill
Keyword(s):  
Palliative Care ◽  
Key Management ◽  
Low Resource ◽  
Care Services ◽  
Life Threatening Illness ◽  
Humanitarian Crises ◽  
Palliative Care Services ◽  
Life Threatening

This chapter covers a fundamentally important and often overlooked area of medicine, and outlines how even in humanitarian crises palliative care principles should be applied to relieve suffering for those with life-threatening illness. As not all humanitarian situations allow comprehensive textbook palliative care services for all patients, this chapter provides the underlying principles of palliation, implementation in low-resource environments, and key management components to allow adoption in varying contexts.

scholarly journals Where there is no morphine: The challenge and hope of palliative care delivery in Tanzania

2014 ◽  
Vol 6 (1) ◽  
Author(s):  
Kristopher Hartwig ◽  
Mervyn Dean ◽  
Kari Hartwig ◽  
Paul Z. Mmbando ◽  
Abduraoof Sayed ◽  
...  
Keyword(s):  
Palliative Care ◽  
Cancer Patients ◽  
Mixed Method ◽  
Care Delivery ◽  
Oral Morphine ◽  
Psychological Burden ◽  
Care Experience ◽  
Care Services ◽  
Palliative Care Teams ◽  
Palliative Care Services

Background: In Tanzania, a country of 42 million, access to oral morphine is rare.Aim: To demonstrate the effectiveness of palliative care teams in reducing patients’ pain and in increasing other positive life qualities in the absence of morphine; and to document the psychological burden experienced by their clinical providers, trained in morphine delivery, as they observed their patients suffering and in extreme pain.Setting: One hundred and forty-fie cancer patients were included from 13 rural hospitals spread across Tanzania.Method: A mixed method study beginning with a retrospective quantitative analysis of cancer patients who were administered the APCA African POS tool four times. Bivariate analyses of the scores at time one and four were compared across the domains. The qualitative arm included an analysis of interviews with six nurses, each with more than fie years’ palliative care experience and no access to strong opioids.Results: Patients and their family caregivers identifid statistically signifiant (p < 0.001) improvements in all of the domains. Thematic analysis of nurse interviews described the patient and family benefis from palliative care but also their great distress when ‘bad cases’ arose who would likely benefi only from oral morphine.Conclusion: People living with chronic cancer-related pain who receive palliative care experience profound physical, spiritual and emotional benefis even without oral morphine. These results demonstrate the need for continued advocacy to increase the availability of oral morphine in these settings in addition to palliative care services.

The modern context of palliative care

2018 ◽  
Author(s):  
Sheila Payne ◽  
Sara Morris
Keyword(s):  
Palliative Care ◽  
United Kingdom ◽  
Health Care Systems ◽  
Organizational Boundaries ◽  
Care Services ◽  
The United Kingdom ◽  
Health And Social Care ◽  
Palliative Care Services ◽  
Care Systems ◽  
Hospice And Palliative Care

Evidence suggests that in the past support services for patients and family carers of terminally ill people have often been unavailable or inadequate in addressing their needs. This chapter will briefly summarize the context of hospice and palliative care services. The chapter argues that definitions of palliative care are culturally and temporally dependent, exemplified by the changing terminology used in the United Kingdom. One of the challenges facing service deliverers is the necessity to work collaboratively across health and social care services, and statutory and voluntary sector organizational boundaries. The funding and organizational positioning of hospice and palliative care services are often contingent upon health care systems and resources. All roles require careful recruitment, dedicated training, and consistent support to provide effective contributions from volunteers. The chapter ends by providing a short description of three studies investigating the role of volunteers undertaken in the United Kingdom.

Challenges of palliative care for children with cancer in Iran: a review

2019 ◽  
Author(s):  
Maryam Rassouli MD ◽  
Naiire Salmani MD ◽  
Zahra Mandegari MSc ◽  
Atena Dadgari MSc ◽  
Bahare Fallah Tafti MSc ◽  
...  
Keyword(s):  
Palliative Care ◽  
Insurance Coverage ◽  
Home Care Services ◽  
Pediatric Palliative Care ◽  
Children With Cancer ◽  
Care Services ◽  
Life Threatening Illness ◽  
Relieve Pain ◽  
Palliative Care Services ◽  
Life Threatening

Pediatric palliative care is a holistic caring approach for children and families that begins with diagnosis of a life-threatening illness and continues until death; it aimed to relieve pain and other symptoms in physical, mental, social and spiritual aspects. In spite of available evidence concerning optimal outcomes of the provision of palliative care, establishment of a palliative care system for children has hardly been feasible so far due to a number of challenges. Therefore, this review study aimed at identifying the challenges of the provision of pediatric palliative care along with the relevant solutions. The identified challenges were classified into two categories including structure-based challenges (i.e. lack of a clear structure in the health system and classification of services, shortage of specialized staff, insufficient home care services, absence of health care tariffs along with insurance coverage of palliative care services) and process-based challenges (i.e. absence of guidelines, lack of educational programs for family, family attitudes and beliefs, communication barriers, and lack of access to opioids). Thereafter, the solutions for each challenge are provided in accordance with the available literature separately. Given the significance of palliative care for children with cancer and in order to improve the quality of life of the children and the families, it appears necessary that policymakers and managers take account of the challenges as well as the feasibility and the implementation of provided solutions.

scholarly journals Palliative care health professionals’ experiences of caring for patients with advance care directives

2015 ◽  
Vol 39 (2) ◽  
pp. 154 ◽  
Author(s):  
Claire E. Johnson ◽  
Rachel Singer ◽  
Malcolm Masso ◽  
Marcus Sellars ◽  
William Silvester
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Advance Care Planning ◽  
Health Professionals ◽  
Care Planning ◽  
Care Experience ◽  
Care Services ◽  
Palliative Care Services ◽  
Advance Care Directives ◽  
Advance Care

Objective To explore the health professionals’ (HPs) perceptions and experiences of advance care directives (ACDs) and advance care planning in Australian palliative care services. Methods A nationwide survey of 105 palliative care services was conducted, with two HPs from each service invited to participate. A qualitative analysis of open responses about advance care planning was undertaken. Results Sixty questionnaires were returned with open responses. Most responders were nurses (75%), aged ≥40 years (80%) and with a mean of 12 years palliative care experience. Data were grouped into four key themes: (1) the ACD; (2) the process of developing ACDs; (3) the process of using ACDs; and (4) the consequences of having ACDs. Participants were positive about advance care planning, commenting that ongoing communication about end-of-life care ensures mutual understanding between patients, family and HPs. Provision of care was considered easier and more efficient with an ACD in place. ACDs were perceived to reduce distrust and conflict between family, friends and HPs, and promote communication. Suboptimal documentation, clarity and explicitness limited the usefulness of ACDs when they were available. Conclusions Advance care planning benefits HPs, patients and their family. To maximise these benefits, ACDs need to be clear, comprehensive, medically relevant and transportable documents. What is known about the topic? Ideally, advance care planning encompasses the identification and documentation of a person’s preferences for future medical treatments and care in preparation for an occasion when the person cannot express their values and wishes. The uptake and practice of advance care planning is inconsistent, and the extent to which it is used by health professionals and patients is variable. Many people are cared for at the end of life in specialist palliative care services, but the intersection between palliative care and advance care planning remains under-researched. What does this paper adds? ACDs facilitate communication and advance care planning; help establish trust between health professionals, patients and their families; and make multiple aspects of care easier for HPs. Processes surrounding ACDs, particularly inadequate documentation, limit adherence and application. What are the implications for practitioners? Clear communication is necessary for effective ACD development and application. The presence of an ACD makes communication and advance care planning easier, and improves trust between HPs, patients and their family. To be useful, ACDs must be clear, comprehensive, medically relevant, transportable documents.

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