Ethics in Palliative Care

2018 ◽  
Author(s):  
Robert C. Macauley
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Moral Distress ◽  
Clinical Medicine ◽  
Ethical Issues ◽  
Ethical Dilemmas ◽  
Age Groups ◽  
Life Threatening Illness ◽  
Unique Nature ◽  
The Right

No specialty faces more diverse and challenging ethical dilemmas than palliative medicine. What is the best way to plan ahead for the end of life? How should physicians respond when patients refuse treatments likely to be beneficial or demand treatments not likely to be? Who makes medical decisions for patients who are too ill to decide for themselves? Do patients have the “right to die” (and, if so, what exactly does that mean)? Other ethics texts have explored these issues but often from an academic perspective that overlooks the practical realities of clinical medicine. Conversely, medical textbooks frequently lack sufficient philosophical depth to fully explore the complexities of these issues. This complete guide to the ethics of palliative care combines clinical experience with philosophical rigor to provide a comprehensive analysis of this fascinating field. Using relevant case studies, core subjects such as intensive symptom management at the end of life, physician-assisted dying, and palliative sedation are examined from historical, legal, clinical, and ethical perspectives. Whereas pediatric issues are often an afterthought in palliative care textbooks, this guide explores the unique nature of ethical dilemmas in the prenatal, neonatal, and adolescent age groups. Other important topics such as neuro-palliative care, organ donation, research, and moral distress are also covered in detail. Written with clinical nuance for medical professionals—and clear language as well as a glossary for lay readers—this guide offers all readers an opportunity to explore and understand the fascinating ethical issues facing patients suffering from life-threatening illness.

Final Thoughts (DRAFT)

2018 ◽  
Author(s):  
Robert C. Macauley
Keyword(s):  
Palliative Care ◽  
Moral Distress ◽  
Ethical Dilemmas ◽  
Economic Resources ◽  
Emotional Challenges ◽  
Seriously Ill Patients ◽  
External Forces ◽  
The Right ◽  
Developed World ◽  
Seriously Ill

It is not enough to know how to respond to ethical dilemmas in palliative care. Sufficient resources are required to implement the nuanced approach to ethical dilemmas presented in this textbook. In the developed world, there exists a profound shortage of palliative care clinicians, as well as regulatory barriers which may impede the provision of optimal palliative care. The situation is far more serious in the developing world, where access to symptomatic medications may be severely restricted due to lack of economic resources or bureaucratic barriers. Even when a qualified team is available and necessary tools are at hand, the emotional challenges inherent in caring for seriously ill patients may negatively impact team dynamics. This is particularly true in situations where members of the team believe they know what the “right” thing to do is, but external forces prevent them from doing it, thus causing moral distress.

scholarly journals 77 National Audit of Care At the End of Life (NACEL)—Round Two Findings

2021 ◽  
Vol 50 (Supplement_1) ◽  
pp. i12-i42
Author(s):  
D Hibbert
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Care Service ◽  
Palliative Care Service ◽  
Care Plan ◽  
Specialist Palliative Care ◽  
Experience Of Care ◽  
Outcomes Of Care ◽  
Specialist Palliative Care Service ◽  
The Right

Abstract   NACEL is a national comparative audit of the quality and outcomes of care experienced by the dying person and those important to them during the final admission in acute and community hospitals in England and Wales. Mental health inpatient providers participated in the first round but excluded from the second round. NACEL round two, undertaken during 2019/20, comprised: Data was collected between June and October 2019. 175 trusts in England and 8 Welsh organisations took part in at least one element of NACEL (97% of eligible organisations). Key findings include Recognising the possibility of imminent death: The possibility that the patient may die was documented in 88% of cases. The median time from recognition of dying to death was 41 hours (36 hours in the first round). Individual plan of care: 71% of patients, where it had been recognised that the patient was dying (Category 1 deaths), had an individualised end of life care plan. Of the patients who did not have an individualised plan of care, in 45% of these cases, the time from recognition of dying to death was more than 24 hours. Families’ and others’ experience of care: 80% of Quality Survey respondents rated the quality of care delivered to the patient as outstanding/excellent/good and 75% rated the care provided to families/others as outstanding/excellent/good. However, one-fifth of responses reported that the families’/others’ needs were not asked about. Individual plan of care: 80% of Quality Survey respondents believed that hospital was the “right” place to die; however, 20% reported there was a lack of peace and privacy. Workforce Most hospitals (99%) have access to a specialist palliative care service. 36% of hospitals have a face-to-face specialist palliative care service (doctor and/or nurse) available 8 hours a day, 7 days a week. NACEL round three will start in 2021.

scholarly journals Dignity Therapy for End-of-Life Care Patients: A Literature Review

2021 ◽  
Vol 8 ◽  
pp. 237437352199695
Author(s):  
Pearl Ed Cuevas ◽  
Patricia Davidson ◽  
Joylyn Mejilla ◽  
Tamar Rodney
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Cultural Context ◽  
Age Groups ◽  
Empirical Support ◽  
Family Care ◽  
Life Care ◽  
Dignity Therapy ◽  
Meta Analyses

Dignity therapy as an intervention has been used for individuals receiving palliative care. The goal of this review is to explore the current state of empirical support to its use for end-of-life care patients. Data sources were articles extracted from search engines PubMed, Cochrane, Embase, CINAHL, Web of Science, and PsycINFO. The years searched were 2009 to 2019 (10-year period). The review process was guided by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses. Results revealed the feasibility, acceptability, satisfaction, and effectiveness of dignity therapy for life-limiting cases/conditions of patients in different age groups. It also highlighted the importance of the therapy setting and the need to apply this in the cultural context. The meaning of dignity therapy to patients and their family care members also emerged. Findings showed most patients displayed the need to leave a legacy and from this their core values surfaced. In conclusion, this review highlighted the contribution of dignity therapy to the holistic care of patients who hope to leave a legacy. The therapy was also relevant to decrease the anxiety; depression, and burden of family members throughout the palliative care period of their loved ones.

scholarly journals 309 The Growing Need for Advance Care Planning Discussion: An Admission to Die for?

2019 ◽  
Vol 48 (Supplement_3) ◽  
pp. iii17-iii65
Author(s):  
Aoife McFeely ◽  
Cliona Small ◽  
Susan Hyland ◽  
Jonathan O'Keeffe ◽  
Graham Hughes ◽  
...  
Keyword(s):  
Palliative Care ◽  
Older People ◽  
End Of Life ◽  
End Of Life Care ◽  
Care Planning ◽  
Life Care ◽  
Advance Care ◽  
Early Decision ◽  
One Year ◽  
The Right

Abstract Background Older people living in nursing homes (NHs) are among the most frail and vulnerable in our community. Over the last 5 years, a review of our local NH admission database revealed a 7% increase in the number of unscheduled hospital attendances from NHs (1015 in 2012/13 vs 1435 in 2016/17). Additionally we have seen an increase in the number of NH residents experiencing ≥2 unscheduled re-admissions within one year (21.1% in 2012/13 vs 30.45% in 2016/17). Our aim was to examine the proportion of patients from NHs who died within 24 hours of presentation, prompting a review of methods that could prevent inappropriate hospital transfers and promoting dignified and comfortable end of life care. Methods A prospective database was collected between 01/01/2016 - 31/12/2017. This recorded all emergency admissions of older people from NHs recording length of stay, readmission rates and mortality. The data was retrospectively analysed, looking specifically at patients who died in hospital ≤ 24 hours Results Of 1435 ED admissions, 49 patients (3.4%) died in hospital ≤ 24 hours after presentation. Of these, 31 patients (61%) died in palliative care suites. 8 patients (16.3%) died in the ED. Conclusion A small number of NH residents presenting to our hospital died within 24 hours. A large proportion of these patients died in a palliative care suite, suggesting poor prognosis was identified rapidly after presentation. We wonder if some of these hospital transfers were avoidable and could certain patients have experienced less disruptive deaths in their NHs? Advanced Care Planning can be difficult for all involved. However, it plays an essential role in ensuring people receive the right care, at the right time, in the right place, from the right team. We support the collaborative roles of a palliative care CNS or Geriatric ANP, and integration with NH Outreach services, to facilitate early decision-making and promote better end of life care.

scholarly journals Paramedics’ perceptions and educational needs with respect to palliative care

2015 ◽  
Vol 12 (5) ◽  
Author(s):  
Ian R Rogers ◽  
Freya R Shearer ◽  
Jeremy R Rogers ◽  
Gail Ross-Adjie ◽  
Leanne Monterosso ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Causes Of Death ◽  
Ethical Issues ◽  
Symptom Control ◽  
Educational Needs ◽  
Palliative Approach ◽  
Common Causes ◽  
The Common ◽  
End Of Life Communication

IntroductionTo identify and measure paramedics’ perspectives and educational needs regarding palliative care provision, as well as their understanding of the common causes of death.MethodsAll St John Ambulance Western Australia paramedics were invited to complete a mixed methods qualitative and quantitative survey using a tool previously validated in studies involving other emergency care providers. Quantitative results are reported using descriptive statistics, while Likert-type scales were converted to ordinal variables and expressed as means +/- SD. Qualitative data was analysed using content analysis techniques and reported as themes. ResultsCompleted surveys were returned by 29 paramedics. They considered palliative care to be strongly focussed on end-of-life care, symptom control and holistic care. The dominant educational needs identified were ethical issues, end-of-life communication and the use of structured patient care pathways. Cancer diagnoses were overrepresented as conditions considered most suitable for palliative care, compared with their frequency as a cause of death. Conditions often experienced in ambulance practice, such as heart failure, trauma and cardiac arrhythmias were overestimated in their frequency as causes of death. ConclusionsParamedics have a sound grasp of some important aspects of palliative care including symptom control and the holistic nature of the palliative approach. They did however tend to equate palliative care with that occurring in the terminal phase and saw it as being particularly applied to cancer diagnoses. Paramedic palliative care educational efforts should focus on ethical issues and end-of-life communication, as well as increasing understanding of the common causes of death and those where a palliative approach might be beneficial.

scholarly journals Visitor Restrictions, Palliative Care, and Epistemic Agency: A Qualitative Study of Nurses’ Relational Practice During the Coronavirus Pandemic

2021 ◽  
Vol 8 ◽  
pp. 233339362110517
Author(s):  
Kim McMillan ◽  
David K. Wright ◽  
Christine J. McPherson ◽  
Kristina Ma ◽  
Vasiliki Bitzas
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Moral Agency ◽  
Ethical Issues ◽  
Ethical Reasoning ◽  
Epistemic Agency ◽  
Relational Practice ◽  
Philosophy Of Palliative Care ◽  
Pandemic Response

Efforts to curb spread of COVID-19 has led to restrictive visitor policies in healthcare, which disrupt social connection between patients and their families at end of life. We interviewed 17 Canadian nurses providing palliative care, to solicit their descriptions of, and responses to, ethical issues experienced as a result of COVID-19 related circumstances. Our analysis was inductive and scaffolded on notions of nurses’ moral agency, palliative care values, and our clinical practice in end-of-life care. Our findings reveal that while participants appreciated the need for pandemic measures, they found blanket policies separating patients and families to be antithetical to their philosophy of palliative care. In navigating this tension, nurses drew on the foundational values of their practice, engaging in ethical reasoning and action to integrate safety and humanity into their work. These findings underscore the epistemic agency of nurses and highlight the limits of a purely biomedical logic for guiding the nursing ethics of the pandemic response.

scholarly journals The ethical implications of verbal autopsy: responding to emotional and moral distress

2021 ◽  
Vol 22 (1) ◽  
Author(s):  
Alex Hinga ◽  
Vicki Marsh ◽  
Amek Nyaguara ◽  
Marylene Wamukoya ◽  
Sassy Molyneux
Keyword(s):  
Public Health ◽  
Emotional Distress ◽  
Verbal Autopsy ◽  
Moral Distress ◽  
Ethical Issues ◽  
Community Members ◽  
Research Staff ◽  
Autopsy Data ◽  
The Right ◽  
Death Data

Abstract Background Verbal autopsy is a pragmatic approach for generating cause-of-death data in contexts without well-functioning civil registration and vital statistics systems. It has primarily been conducted in health and demographic surveillance systems (HDSS) in Africa and Asia. Although significant resources have been invested to develop the technical aspects of verbal autopsy, ethical issues have received little attention. We explored the benefits and burdens of verbal autopsy in HDSS settings and identified potential strategies to respond to the ethical issues identified. Methods This research was based on a case study approach centred on two contrasting HDSS in Kenya and followed the Mapping-Framing-Shaping Framework for empirical bioethics research. Data were collected through individual interviews, focus group discussions, document reviews and non-participant observations. 115 participants were involved, including 86 community members (HDSS residents and community representatives), and 29 research staff (HDSS managers, researchers, census field workers and verbal autopsy interviewers). Results The use of verbal autopsy data for research and public health was described as the most common potential benefit of verbal autopsy in HDSS. Community members mentioned the potential uses of verbal autopsy data in addressing immediate public health problems for the local population while research staff emphasized the benefits of verbal autopsy to research and the wider public. The most prominent burden associated with the verbal autopsy was emotional distress for verbal autopsy interviewers and respondents. Moral events linked to the interview, such as being unsure of the right thing to do (moral uncertainty) or knowing the right thing to do and being constrained from acting (moral constraint), emerged as key causes of emotional distress for verbal autopsy interviewers. Conclusions The collection of cause-of-death data through verbal autopsy in HDSS settings presents important ethical and emotional challenges for verbal autopsy interviewers and respondents. These challenges include emotional distress for respondents and moral distress for interviewers. This empirical ethics study provides detailed accounts of the distress caused by verbal autopsy and highlights ethical tensions between potential population benefits and risks to individuals. It includes recommendations for policy and practice to address emotional and moral distress in verbal autopsy.

Are hospital clinicians aware of legislation surrounding provision of palliative care?

2016 ◽  
Vol 34 (26_suppl) ◽  
pp. 118-118
Author(s):  
Aaron Kee Yee Wong
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Decision Makers ◽  
Medical Decision ◽  
Poor Knowledge ◽  
Tertiary Teaching ◽  
Futile Treatment ◽  
Substitute Decision Makers ◽  
Legal Frameworks ◽  
The Right

118 Background: Many deaths require medical treatment to be withheld or withdrawn. Patients or their substitute decision makers may disagree with these decisions, and sometimes refuse the right to appropriate palliative care. An awareness of legal frameworks surrounding end of life decisions is vital to navigate through these conflicts. Without this, patients suffer unnecessarily. Methods: 542 hospital doctors and nurses were recruited from a large metropolitan public tertiary teaching hospital network involving 5 campuses and 2 medical schools. A questionnaire examined their regarding legislation surrounding end of life care, both in adults with and without capacity. Results: Approximately a quarter of respondents did not believe that the “Not for Resuscitation Form” is legally a medical decision. Most doctors (68%), but not nurses, believed competent patients cannot demand futile treatment. Most clinicians (79% doctors and 85% nurses) erroneously believe that competent patients can refuse appropriate palliative care. There was significant confusion regarding the roles of substitute decision makers. Most clinicians could not find the advance directive. Groups with most correct answers were doctors, had 5-10 years experience, and were in palliative care and critical care specialties. Conclusions: This study confirms poor knowledge regarding legislation surrounding provision of palliative care. An unusually high proportion believed patients could refuse appropriate palliative care. Most clinicians could not locate advance directives. Most nurses believed patients could legally demand futile treatment. Both junior and senior staff had comparably poor knowledge in this area.

Ethics Education During Palliative Medicine Fellowship

2019 ◽  
Vol 36 (12) ◽  
pp. 1076-1080 ◽  
Author(s):  
Elizabeth K. Vig ◽  
Susan E. Merel
Keyword(s):  
Palliative Care ◽  
Work Environment ◽  
Palliative Medicine ◽  
Online Survey ◽  
Ethics Education ◽  
Ethical Dilemmas ◽  
Weekly Basis ◽  
Ethics Curriculum ◽  
The Right ◽  
E Mail

Background: Palliative care clinicians frequently encounter situations in which there are ethical dilemmas about the right thing to do. Palliative medicine fellowships are required to include education about ethics. Our fellowship increased fellows’ ethics education through monthly didactics, lectures in a professional development series, and a month-long ethics rotation. Methods: We sought input from graduates of our palliative medicine fellowship about the content and amount of the ethics education they received. Fellowship graduates were invited via e-mail to complete an online survey about the ethics education they received during fellowship. They were asked questions about their work environment, frequency with which they encounter ethical dilemmas, their perspectives on the ethics content, the amount of ethics education they received during fellowship, and their input on ways to improve the ethics education within the fellowship. Results: Twenty-eight (82%) of 34 fellowship graduates completed the survey; 93% noted that they encounter ethical dilemmas in their work, with half encountering these on a daily or weekly basis, and 86% noted that colleagues ask them questions about ethics because of their palliative medicine training. None responded that they had received too much ethics education. Fellowship graduates identified ethics content that has been useful since completing fellowship and suggested ways to improve ethics education for future fellows. Conclusion: Graduates of a palliative medicine fellowship encounter ethical dilemmas often and frequently are asked questions about ethics. Palliative medicine fellowships may want to examine their ethics curriculum to ensure that graduating fellows are learning about relevant ethics topics and are comfortable discussing ethical dilemmas with others.

scholarly journals ‘Powerlessness’ or ‘doing the right thing’ – Moral distress among nursing home staff caring for residents at the end of life: An interpretive descriptive study

2017 ◽  
Vol 31 (9) ◽  
pp. 853-860 ◽  
Author(s):  
Amanda Young ◽  
Katherine Froggatt ◽  
Sarah G Brearley
Keyword(s):  
Nursing Home ◽  
Nursing Homes ◽  
End Of Life ◽  
Critical Incident ◽  
Nurse Managers ◽  
Moral Distress ◽  
Structured Interviews ◽  
Nursing Home Staff ◽  
The Right ◽  
Do The Right Thing

Background: Caring for dying people can contribute to moral distress experienced by healthcare professionals. Moral distress can occur when this caring is restricted by organisational processes, resources or the provision of futile care. These factors apply to end of life care in nursing homes but research is lacking. Aim: To describe how nursing home staff experience moral distress when caring for residents during and at the end of life. Methods: An interpretive descriptive design, using the critical incident technique in semi-structured interviews to collect data from nursing home staff. Data were analysed using a thematic analysis approach. Setting: Four nursing homes in one large metropolitan area. Participants: A total of 16 staff: 2 nurse managers, 4 nurses and 10 care assistants. Findings: Participants described holding ‘good dying’ values which influenced their practice. The four practice-orientated themes of advocating, caring, communicating and relating with residents were found to influence interactions with residents, relatives, general practitioners, and colleagues. These led staff to be able to ‘do the right thing’ or to experience ‘powerlessness’, which could in turn lead to staff perceiving a ‘bad death’ for residents. Conclusion: When there are incongruent values concerning care between staff and others involved in the care of residents, staff feel powerless to ‘do the right thing’ and unable to influence care decisions in order to avoid a ‘bad death’. This powerlessness is the nature of their moral distress.

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