scholarly journals Life's hard and then you die: the end-of-life priorities of people experiencing homelessness in the UK

2020 ◽  
Vol 26 (3) ◽  
pp. 120-132 ◽  
Author(s):  
Wendy Ann Webb ◽  
Theresa Mitchell ◽  
Paul Snelling ◽  
Brian Nyatanga

Background: People experiencing homelessness often die young and without adequate support. In the UK, they fail to access palliative care services and their end-of-life priorities remain poorly understood. Aims: To explore the end-of-life concerns, fears, preferences and priorities of a sample of people experiencing homelessness in the UK. Methods: This is an interpretive phenomenology. Data collected through semi-structured, audio-recorded, face-to-face interviews with 21 homeless participants in the UK were analysed iteratively using thematic analysis. Findings have been interpreted through the lens of Merleau-Ponty's philosophy. Results: Eight themes are reported: spiritual concerns; practical concerns; fear of needing care; fear of being forgotten; preference for dying suddenly; preference for being somewhere comfortable where people know me; prioritising autonomy and self-determination; and prioritising authenticity. Conclusion: A strengths-based, trauma-informed, person-centred, collaborative ‘compassionate community’ approach to care is recommended for people experiencing homelessness at end of life.

Author(s):  
Ros Scott

This chapter explores the history of volunteers in the founding and development of United Kingdom (UK) hospice services. It considers the changing role and influences of volunteering on services at different stages of development. Evidence suggests that voluntary sector hospice and palliative care services are dependent on volunteers for the range and quality of services delivered. Within such services, volunteer trustees carry significant responsibility for the strategic direction of the organiszation. Others are engaged in diverse roles ranging from the direct support of patient and families to public education and fundraising. The scope of these different roles is explored before considering the range of management models and approaches to training. This chapter also considers the direct and indirect impact on volunteering of changing palliative care, societal, political, and legislative contexts. It concludes by exploring how and why the sector is changing in the UK and considering the growing autonomy of volunteers within the sector.


2012 ◽  
Vol 30 (8) ◽  
pp. 880-887 ◽  
Author(s):  
Thomas J. Smith ◽  
Sarah Temin ◽  
Erin R. Alesi ◽  
Amy P. Abernethy ◽  
Tracy A. Balboni ◽  
...  

Purpose An American Society of Clinical Oncology (ASCO) provisional clinical opinion (PCO) offers timely clinical direction to ASCO's membership following publication or presentation of potentially practice-changing data from major studies. This PCO addresses the integration of palliative care services into standard oncology practice at the time a person is diagnosed with metastatic or advanced cancer. Clinical Context Palliative care is frequently misconstrued as synonymous with end-of-life care. Palliative care is focused on the relief of suffering, in all of its dimensions, throughout the course of a patient's illness. Although the use of hospice and other palliative care services at the end of life has increased, many patients are enrolled in hospice less than 3 weeks before their death, which limits the benefit they may gain from these services. By potentially improving quality of life (QOL), cost of care, and even survival in patients with metastatic cancer, palliative care has increasing relevance for the care of patients with cancer. Until recently, data from randomized controlled trials (RCTs) demonstrating the benefits of palliative care in patients with metastatic cancer who are also receiving standard oncology care have not been available. Recent Data Seven published RCTs form the basis of this PCO. Provisional Clinical Opinion Based on strong evidence from a phase III RCT, patients with metastatic non–small-cell lung cancer should be offered concurrent palliative care and standard oncologic care at initial diagnosis. While a survival benefit from early involvement of palliative care has not yet been demonstrated in other oncology settings, substantial evidence demonstrates that palliative care—when combined with standard cancer care or as the main focus of care—leads to better patient and caregiver outcomes. These include improvement in symptoms, QOL, and patient satisfaction, with reduced caregiver burden. Earlier involvement of palliative care also leads to more appropriate referral to and use of hospice, and reduced use of futile intensive care. While evidence clarifying optimal delivery of palliative care to improve patient outcomes is evolving, no trials to date have demonstrated harm to patients and caregivers, or excessive costs, from early involvement of palliative care. Therefore, it is the Panel's expert consensus that combined standard oncology care and palliative care should be considered early in the course of illness for any patient with metastatic cancer and/or high symptom burden. Strategies to optimize concurrent palliative care and standard oncology care, with evaluation of its impact on important patient and caregiver outcomes (eg, QOL, survival, health care services utilization, and costs) and on society, should be an area of intense research. NOTE. ASCO's provisional clinical opinions (PCOs) reflect expert consensus based on clinical evidence and literature available at the time they are written and are intended to assist physicians in clinical decision making and identify questions and settings for further research. Because of the rapid flow of scientific information in oncology, new evidence may have emerged since the time a PCO was submitted for publication. PCOs are not continually updated and may not reflect the most recent evidence. PCOs cannot account for individual variation among patients and cannot be considered inclusive of all proper methods of care or exclusive of other treatments. It is the responsibility of the treating physician or other health care provider, relying on independent experience and knowledge of the patient, to determine the best course of treatment for the patient. Accordingly, adherence to any PCO is voluntary, with the ultimate determination regarding its application to be made by the physician in light of each patient's individual circumstances. ASCO PCOs describe the use of procedures and therapies in clinical trials and cannot be assumed to apply to the use of these interventions in the context of clinical practice. ASCO assumes no responsibility for any injury or damage to persons or property arising out of or related to any use of ASCO's PCOs, or for any errors or omissions.


2021 ◽  
Vol 39 (28_suppl) ◽  
pp. 31-31
Author(s):  
Laura Donovan ◽  
Donna Buono ◽  
Melissa Kate Accordino ◽  
Jason Dennis Wright ◽  
Andrew B. Lassman ◽  
...  

31 Background: GBM is associated with a poor prognosis and early death in elderly patients. Prior studies have demonstrated a high burden of hospitalization in this population. We sought to evaluate and examine trends in hospitalizations and EOL care in GBM survivors. Methods: Using SEER-Medicare linked data, we performed a retrospective observational cohort study of patients aged ≥ 65 years diagnosed with GBM from 2005-2017 who lived at least 6 months from the time of diagnosis. Aggressive EOL care was defined as: chemotherapy or radiotherapy within 14 days of death (DOD), surgery within 30 DOD, > 1 emergency department visit, ≥ 1 hospitalization or intensive care unit admission within 30 DOD; in-hospital death; or hospice enrollment ≤ 3 DOD. We evaluated age, race, ethnicity, marital status, gender, socioeconomic status, comorbidities, prior treatment and percentage of time hospitalized. Multivariable logistic regression was performed to determine factors associated with aggressive end of life care. Results: Of 5827 patients, 2269 (38.9%) survived at least 6 months. Among these, 1106 (48.7%) survived 6-12 months, 558 (24.6%) survived 12-18 months, and 605 (26.7%) survived > 18 months. Patients who survived 6-12 months had the highest burden of hospitalization and spent a median of 10.6% of their remaining life in the hospital compared to those surviving 12-18 months (5.4%) and > 18 months (3%) (P < 0.001). 10.1% of the cohort had claims for palliative care services; 49.8% of initial palliative care consults occurred in the last 30 days of life. Hospice claims existed in 83% with a median length of stay 33 days (IQR 12, 79 days). 30.1% of subjects received aggressive EOL care. Receiving chemo at any time (OR 1.510, 95% CI 1.221-1.867) and spending ≥ 20% of life in the hospital after diagnosis (OR 3.331, 95% CI 2.567-4.324) were associated with aggressive EOL care. Women (OR 0.759, 95% CI 0.624-0.922), patients with higher socioeconomic status (OR 0.533, 95% CI 0.342-0.829), and those diagnosed ≥ age 80 (OR 0.723, 95% CI 0.528-0.991) were less likely to receive aggressive EOL care. Race, ethnicity, marital status, and extent of initial resection were not associated with aggressive EOL care. Conclusions: A minority of elderly patients with GBM in the SEER-Medicare database survived ≥ 6 months; hospitalizations were common and patients spent a significant proportion of their remaining life hospitalized. Although hospice utilization was high in this cohort, 30% of patients received aggressive EOL care. Despite the aggressive nature of GBM, few patients had palliative care consults during their illness. Increased utilization of palliative care services may help reduce hospitalization burden and aggressive EOL care in this population.


2021 ◽  
Vol 39 (15_suppl) ◽  
pp. e24005-e24005
Author(s):  
Renana Barak ◽  
Einav Zagagi Yohay ◽  
Barliz Waissengrin ◽  
Ido Wolf

e24005 Background: Aggressive end-of-life (EOL) care in cancer patients, especially the administration of chemotherapy, is considered a poor-quality measure, that may divert the treatment course from its' main palliative intent. Decisions taken at EOL are more than evidence-based and often rely on cultural and personal prospects. The universal and free Israeli health care system enables the administration of active treatment without financial or regulatory barriers, even at EOL. Two major advancements in recent years were the implementation of national at-home palliative care services and the approval of targeted and immunotherapies for advanced cancers. We hypothesized that these changes will reduce the use of chemotherapy at EOL. Methods: We sampled consecutive patients treated at a tertiary oncology center who died of advanced cancers between January 2019 to August 2020, and examined the administration of oncologic treatments near EOL. Results: A total of 294 patients were included. Their median age was 67 and 147 were men, 64% (189) of the patients received oncologic treatment during the last month before death, chemotherapy was administered in nearly two-thirds of the cases, 64% (121), followed by immunotherapy (21%, 40), targeted therapy (10%, 19) and a clinical trial (5%, 9). Neither age (P = 0.4), gender (P = 0.9), performance status (P = 0.8), disease duration (P = 0.5), and type of previous oncologic treatment (P = 0.3) were associated with aggressive EOL care. Conclusions: Our data demonstrate that in the absence of any regulatory or financial limitations, an aggressive EOL care may be administered to the majority of patients, regardless of age, performance status or disease duration. Despite increasing use of immunotherapy and targeted therapies and despite its’ toxicity profile and low beneficial effect at this stage, chemotherapy remained the most commonly used type of treatment. These data call for the implementation of educational measures and appropriate universal guidelines, aiming at improving quality of treatment at the EOL, focusing on quality of life rather than the elusive potential of extending life.


2011 ◽  
Vol 17 (1) ◽  
Author(s):  
John Rosenberg

The process of dying at home brings the nexus between the paternalism of conventional palliative care and a social understanding of end of life care into sharp focus. Away from institutional places of care, issues of ownership, compliance and communal responsibility are heightened. At this interface, palliative care services are confronted with the irony of relinquishing their 'ownership' of dying whilst leading communities to reclaim their principal role in the business of dying. This benign – but enduring – paternalism remains a barrier to a paradigmatic shift towards a more complete understanding of the business of dying. Whilst nascent attempts to promote community engagement in end of life issues are evident in the interface between palliative care and public health, dying remains, for the most part, the remit of health care services. In this article, I contend that the business of dying is incompletely attended. This lack of attention will be partially redressed here by considering the home as a fitting death scene.


2017 ◽  
Vol 35 (3) ◽  
pp. 497-504 ◽  
Author(s):  
Manali I. Patel ◽  
Vyjeyanthi S. Periyakoil ◽  
David Moore ◽  
Andrea Nevedal ◽  
Tumaini R. Coker

Objectives: Persistent gaps in end-of-life cancer care delivery and growing associated expenditures remain imminent US public health issues. The objective of this study was to understand clinical providers’ experiences delivering cancer care for patients at the end of life and their perspectives on potential solutions to improve quality of care. Methods: Semistructured interviews were conducted with 75 cancer care providers across the United States. The interviews were recorded, transcribed, and analyzed using constant comparative method of qualitative analysis. Results: Providers identified 3 major cancer care delivery challenges including lack of time to educate patients and caregivers due to clinical volume and administrative burdens, ambiguity in determining both prognosis and timing of palliative care at the end-of-life, and lack of adequate systems to support non-face-to-face communication with patients. To address these challenges, providers endorsed several options for clinical practice redesign in their settings. These include use of a lay health worker to assist in addressing early advance care planning, proactive non-face-to-face communication with patients specifically regarding symptom management, and community and in-home delivery of cancer care services. Discussion: Specific strategies for cancer care redesign endorsed by health-care providers may be used to create interventions that can more efficiently and effectively address gaps in end-of-life cancer care.


2018 ◽  
Vol 32 (8) ◽  
pp. 1344-1352 ◽  
Author(s):  
Rossana De Palma ◽  
Daniela Fortuna ◽  
Sarah E Hegarty ◽  
Daniel Z Louis ◽  
Rita Maria Melotti ◽  
...  

Background: Multiple studies demonstrate substantial utilization of acute hospital care and, potentially excessive, intensive medical and surgical treatments at the end-of-life. Aim: To evaluate the relationship between the use of home and facility-based hospice palliative care for patients dying with cancer and service utilization at the end of life. Design: Retrospective, population-level study using administrative databases. The effect of palliative care was analyzed between coarsened exact matched cohorts and evaluated through a conditional logistic regression model. Setting/participants: The study was conducted on the cohort of 34,357 patients, resident in Emilia-Romagna Region, Italy, admitted to hospital with a diagnosis of metastatic or poor-prognosis cancer during the 6 months before death between January 2013 and December 2015. Results: Patients who received palliative care experienced significantly lower rates of all indicators of aggressive care such as hospital admission (odds ratio (OR) = 0.05, 95% confidence interval (CI): 0.04–0.06), emergency department visits (OR = 0.23, 95% CI: 0.21–0.25), intensive care unit stays (OR = 0.29, 95% CI: 0.26–0.32), major operating room procedures (OR = 0.22, 95% CI: 0.21–0.24), and lower in-hospital death (OR = 0.11, 95% CI: 0.10–0.11). This cohort had significantly higher rates of opiate prescriptions (OR = 1.27, 95% CI: 1.21–1.33) ( p < 0.01 for all comparisons). Conclusion: Use of palliative care at the end of life for cancer patients is associated with a reduction of the use of high-cost, intensive services. Future research is necessary to evaluate the impact of increasing use of palliative care services on other health outcomes. Administrative databases linked at the patient level are a useful data source for assessment of care at the end of life.


Author(s):  
David C. Currow ◽  
Stein Kaasa

Hospice and palliative care services have developed in very different ways around the world. Most have been built on the momentum of visionary clinicians and funders who have responded to perceived needs from health-care providers, patients, families, and communities rather than in response to well-formed national policies with an adequately funded planning and development phase. This chapter describes the work that is being done at pan-national, national, and sub-national levels to create effective policies that can further the key work of hospice/palliative care, often after a large number of apparently unconnected local services have been well established. The chapter highlights that there are particular challenges in forming public policy on hospice/palliative care, especially the end-of-life component, and notes the importance of ‘patients’ voices’-the voice of the community which helps to inform health policies including end-of-life care. The chapter ends by describing a variety of country-specific and World Health Organization policy documents and legislation.


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