scholarly journals Dying individuals and suffering populations: applying a population-level bioethics lens to palliative care in humanitarian contexts: before, during and after the COVID-19 pandemic

2020 ◽  
Vol 46 (8) ◽  
pp. 514-525 ◽  
Author(s):  
Keona Jeane Wynne ◽  
Mila Petrova ◽  
Rachel Coghlan
Keyword(s):  
Palliative Care ◽  
Terminal Illness ◽  
Research Effort ◽  
Symptom Relief ◽  
Population Level ◽  
Moral Dilemmas ◽  
Humanitarian Emergencies ◽  
Resource Limitations ◽  
Clinical Bioethics ◽  
International Body

BackgroundHumanitarian crises and emergencies, events often marked by high mortality, have until recently excluded palliative care—a specialty focusing on supporting people with serious or terminal illness or those nearing death. In the COVID-19 pandemic, palliative care has received unprecedented levels of societal attention. Unfortunately, this has not been enough to prevent patients dying alone, relatives not being able to say goodbye and palliative care being used instead of intensive care due to resource limitations. Yet global guidance was available. In 2018, the WHO released a guide on ‘Integrating palliative care and symptom relief into the response to humanitarian emergencies and crises’—the first guidance on the topic by an international body.AimsThis paper argues that while a landmark document, the WHO guide took a narrowly clinical bioethics perspective and missed crucial moral dilemmas. We argue for adding a population-level bioethics lens, which draws forth complex moral dilemmas arising from the fact that groups having differential innate and acquired resources in the context of social and historical determinants of health. We discuss dilemmas concerning: limitations of material and human resources; patient prioritisation; euthanasia; and legacy inequalities, discrimination and power imbalances.ImplicationsIn parts of the world where opportunity for preparation still exists, and as countries emerge from COVID-19, planners must consider care for the dying. Immediate steps to support better resolutions to ethical dilemmas of the provision of palliative care in humanitarian and emergency contexts will require honest debate; concerted research effort; and international, national and local ethical guidance.

Diagnosis, assessment, and treatment of depression in advanced disease

2018 ◽  
Author(s):  
Matthew Hotopf
Keyword(s):  
Palliative Care ◽  
Advanced Disease ◽  
Antidepressant Treatment ◽  
Population Level ◽  
Care Staff ◽  
Care Services ◽  
Treatment Of Depression ◽  
Assessment And Treatment ◽  
Palliative Care Services ◽  
Key Issues

Depression in palliative care is common, under-recognised and has significant impacts for sufferers. There are effective treatments but often a shortage of staff to provide them. This chapter sets out a number of key issues to consider when assessing and treating individual patients and considers the way in which palliative care services can innovate to provide a population level response to depression. Palliative care staff can be trained to deliver basic depression care and follow simple protocols to initiate, monitor and adjust antidepressant treatment. These approaches have been tested in trials in cancer care but the challenge is to take these approaches from research trials conducted in centres of excellence with good resources, to other settings.

Happiness at the end of life: A qualitative study

2021 ◽  
pp. 1-7
Author(s):  
Tan Seng Beng ◽  
Wong Ka Ghee ◽  
Ng Yun Hui ◽  
Ooi Chieh Yin ◽  
Khoo Wei Shen Kelvin ◽  
...  
Keyword(s):  
Palliative Care ◽  
Qualitative Study ◽  
End Of Life ◽  
Terminal Illness ◽  
Terminally Ill ◽  
Social Connections ◽  
Targeted Interventions ◽  
Pain And Suffering ◽  
The University ◽  
Eudaimonic Happiness

Abstract Objective Dying is mostly seen as a dreadful event, never a happy experience. Yet, as palliative care physicians, we have seen so many patients who remained happy despite facing death. Hence, we conducted this qualitative study to explore happiness in palliative care patients at the University of Malaya Medical Centre. Method Twenty terminally ill patients were interviewed with semi-structured questions. The results were thematically analyzed. Results Eight themes were generated: the meaning of happiness, connections, mindset, pleasure, health, faith, wealth, and work. Our results showed that happiness is possible at the end of life. Happiness can coexist with pain and suffering. Social connections were the most important element of happiness at the end of life. Wealth and work were given the least emphasis. From the descriptions of our patients, we recognized a tendency for the degree of importance to shift from the hedonic happiness to eudaimonic happiness as patients experienced a terminal illness. Significance of results To increase the happiness of palliative care patients, it is crucial to assess the meaning of happiness for each patient and the degree of importance for each happiness domain to allow targeted interventions.

Palliative care referral practices and perceptions: The divide between metropolitan and non-metropolitan general practitioners

2011 ◽  
Vol 9 (2) ◽  
pp. 181-189 ◽  
Author(s):  
Claire E. Johnson ◽  
Afaf Girgis ◽  
Christine L. Paul ◽  
David C. Currow
Keyword(s):  
Palliative Care ◽  
General Practitioners ◽  
Advanced Cancer ◽  
Terminal Illness ◽  
Symptom Control ◽  
Physical Symptoms ◽  
Care Physician ◽  
Self Report ◽  
Psychosocial Needs ◽  
Consultative Service

AbstractObjective:Late or non-referral of patients to specialist palliative care (SPC) services may affect patients' and their carers' quality of care. General practitioners (GPs) are key professionals in linking people with SPC. The aim of this article is to assess GPs' perceptions and SPC referrals for their patients with advanced cancer and differences between metropolitan (M GPs) and non-metropolitan GPs (NM GPs).Method:Self-report survey mailed to a stratified random sample of 1,680 Australian GPs was used.Results:Thirty-one percent (469) of eligible GPs returned surveys. More M GPs than NM GPs reported referring >60% of their patients for SPC (p = 0.014); and that a more comprehensive range of SPC services was available. The most frequently reported referral prompts were: presence of terminal illness (M GPs, 71%, NM GPs, 66%, ns (not significant)); future need for symptom control (69% vs. 59%, ns) and uncontrolled physical symptoms (63% vs. 54%, ns). Reasons for not referring were: doctor's ability to manage symptoms (62% vs. 68%, ns) and the absence of symptoms (29% vs. 18%, p = 0.025). Higher referral was associated with: having a palliative care physician or consultative service available; agreeing that all patients with advanced cancer should be referred, and agreeing that with SPC, the needs of the family are better met.Significance of results:Referrals for SPC were primarily disease-related rather than for psychological and emotional concerns. Measures are needed to encourage referrals based upon psychosocial needs as well as for physical concerns, and to support GPs caring for people with advanced cancer in areas with fewer comprehensive SPC services.

Mapping end-of-life and anticipatory medications in palliative care patients using a longitudinal general practice database

2021 ◽  
pp. 1-7
Author(s):  
H. Khalil ◽  
M. Garett ◽  
A. Byrne ◽  
P. Poon ◽  
K. Gardner ◽  
...  
Keyword(s):  
Health Care ◽  
Palliative Care ◽  
General Practice ◽  
End Of Life ◽  
Nurse Practitioners ◽  
Hospital Admissions ◽  
Population Level ◽  
Screening Tools ◽  
Care Needs ◽  
Stakeholder Consultation

Abstract Objective End-of-life and anticipatory medications (AMs) have been widely used in various health care settings for people approaching end-of-life. Lack of access to medications at times of need may result in unnecessary hospital admissions and increased patient and family distress in managing palliative care at home. The study aimed to map the use of end-of-life and AM in a cohort of palliative care patients through the use of the Population Level Analysis and Reporting Data Space and to discuss the results through stakeholder consultation of the relevant organizations. Methods A retrospective observational cohort study of 799 palliative care patients in 25 Australian general practice health records with a palliative care referral was undertaken over a period of 10 years. This was followed by stakeholders’ consultation with palliative care nurse practitioners and general practitioners who have palliative care patients. Results End-of-life and AM prescribing have been increasing over the recent years. Only a small percentage (13.5%) of palliative care patients received medications through general practice. Stakeholders’ consultation on AM prescribing showed that there is confusion about identifying patients needing medications for end-of-life and mixed knowledge about palliative care referral pathways. Significance of results Improved knowledge and information around referral pathways enabling access to palliative care services for general practice patients and their caregivers are needed. Similarly, the increased utility of screening tools to identify patients with palliative care needs may be useful for health care practitioners to ensure timely care is provided.

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.

Abstract 68: Palliative Care Is Underutilized in Patients with Severe Intracerebral Hemorrhage

Stroke ◽  
2015 ◽  
Vol 46 (suppl_1) ◽  
Author(s):  
April Sisson ◽  
Karen C Albright ◽  
Michelle Peck ◽  
Linh M Nguyen ◽  
Michael Lyerly ◽  
...  
Keyword(s):  
Palliative Care ◽  
Poor Prognosis ◽  
Care Service ◽  
Care Center ◽  
Symptom Relief ◽  
Tertiary Care ◽  
Palliative Care Service ◽  
Code Status ◽  
Ich Score ◽  
Expected Mortality

Background and Purpose: Palliative care is an essential part of ICH care, particularly in patients with high ICH scores given their poor prognosis. Palliative care involves consultation by the Palliative Care Service and includes de-escalation of care, changing code status, and making pain and symptom relief the central goal of management. Methods: We performed a retrospective review of consecutive patients presenting to our tertiary care center from 2008-2013 with primary ICH. Demographic and clinical data were collected. Our sample included only patients who died or were transferred to hospice. We examined the proportion of patients that received an inpatient palliative care consult and compared this group to patients who did not receive an inpatient palliative care consult. Patients were categorized by ICH score. Results: Of the 99 ICH patients who died or were discharged to hospice, only 23% received a palliative care consult. Figure 1 displays death, predicted death, and palliative care consult proportions by ICH score. Patients that received a Palliative Care consult were older (mean age 65 vs. 73, p=0.018) and more frequently had evidence of infection (32% vs. 13%, p=0.038); no other significant differences were found between groups. Conclusions: In our sample of ICH patients, 23% of patients received a palliative care consult. In those with high ICH scores utilization was only 28%, despite 30 day expected mortality of 97% or greater. This raises concern that palliative care may be underutilized in patients who may benefit from it the most.

scholarly journals There's no Place like Home: Oklahoman's Preferences for Site of Death

2008 ◽  
Vol 1 ◽  
pp. PCRT.S1058 ◽  
Author(s):  
Marianne Matzo ◽  
Kamal Hijjazi
Keyword(s):  
Palliative Care ◽  
Terminal Illness ◽  
Income Level ◽  
Stated Preferences ◽  
Care Needs ◽  
Attitudes And Behaviors ◽  
Dying At Home ◽  
Palliative Care Needs ◽  
Insight Into ◽  
At Home

Objective This study sought to document Oklahomans knowledge, attitudes, and behaviors regarding palliative care; this paper focuses on subjects stated preferences for where they would choose to die. Design Quantitative study used a random state-wide telephone sample of Oklahoma residents. Subjects Data from 804 residents in the State of Oklahoma between November and December (2005). Results An overwhelming majority of the respondents (80%) reported preference to die at home in the event that they suffer a terminal illness. The proportion of respondents under the age of 65 who preferred to die at home (80.9%) was slightly higher than those aged 65 and over (74.8%). Also, while 81.4% of the female respondents reported preference for dying at home, 75.8% of the male respondents shared such preference (P < 0.05). More married respondents (82.7%) than non-married respondents (74.7%) reported preference for dying at home (P < 0.01). A significant association (P < 0.05) between income level and preference for dying at home was noted. While 84.3% of those with income level at $21,000 or more reported reference for dying at home, 76.4% of those with income below $21,000 reported the same preference. Conclusions This paper offers insight into factors that influence Oklahoman's stated preferences for site of death that can assist the statewide agenda in the planning and provision of palliative care. This information can be adapted in other states or countries to determine palliative care needs.

Surgical Palliative Care

2018 ◽  
Author(s):  
Zara Cooper ◽  
Emily B. Rivet
Keyword(s):  
Decision Making ◽  
Palliative Care ◽  
End Of Life ◽  
Symptom Relief ◽  
Psychological Needs ◽  
Sudden Onset ◽  
Transitions Of Care ◽  
Patient Comfort ◽  
Health State ◽  
Surgery Patient

Palliative care is a multidisciplinary approach to care that includes relief of suffering and attention to the social, spiritual, physical, and psychological needs of patients and families. The intent of palliative care is to help patients live as well as possible for as long as possible, and relevant domains of palliative care include symptom relief, prognostication, communication with patients, families and clinicians, transitions of care, and end-of-life care. Palliative care is distinct from hospice in many respects including that it can be provided simultaneously with recovery-directed treatments rather than reserved for individuals at end of life. Patients with surgical disease are particularly in need of palliative care due to the common occurrence of severe symptoms such as pain and nausea, complex decision-making, and the often sudden onset of the disease or injury which precludes preparation for the new health state.   Key Words: communication, end-of- life, goals of care, high-risk surgery, palliative, palliative care, palliative surgery, patient comfort, surgical decision-making, surgical prognostication This review contains 3 figures, 10 tables, and 61 references.

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