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118 Background: Many deaths require medical treatment to be withheld or withdrawn.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.

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 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.

End-of-Life Decision-Making

2017 ◽  
Author(s):  
Chad D. Kollas ◽  
Beth Boyer Kollas
Keyword(s):  
Decision Making ◽  
Elderly Patients ◽  
End Of Life ◽  
Planning Process ◽  
Legal Reasoning ◽  
The United States ◽  
Medical Decision ◽  
The Right ◽  
End Of Life Decision ◽  
Life Decision

Growth in the size and wealth of the United States’ elderly population, coupled with a trend toward increasing patient autonomy, has created an environment for increased conflict in end-of-life decision-making. This chapter explores the required elements for making decisions at the end of life, including determination of medical decision-making capacity. Also discussed is the development of the legal reasoning that governs situations involving elderly patients who lack the capacity, but retain the right, to make medical decisions. The chapter describes the utility of the advance care planning process, by which elderly patients can make their preferences for medical treatment known in advance of conditions or illness that could result in cognitive impairment that would otherwise hamper their ability to participate personally in end-of-life decisions. Finally, a variety of forms of advance directives are described, critical tools in honoring the medical autonomy of elderly patients.

scholarly journals Operationalizing legal rights in end-of- life decision-making: A qualitative study

2021 ◽  
pp. 026921632110401
Author(s):  
Cheryl Tilse ◽  
Lindy Willmott ◽  
Jill Wilson ◽  
Rachel Feeney ◽  
Ben White
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Terminally Ill ◽  
Decision Makers ◽  
Legal Rights ◽  
Terminally Ill Patients ◽  
Health Care Practitioners ◽  
Substitute Decision Makers ◽  
End Of Life Decision ◽  
Life Decision

Background: For a patient’s legal right to make end-of-life treatment decisions to be respected, health care practitioners, patients and their substitute decision-makers must know what rights exist and how to assert them (or support others to assert them). Yet very little is known about what enhances or obstructs the operationalization of legal rights from the perspective of patients, family members and substitute decision-makers. Aim: To explore barriers and facilitators to the operationalization of rights in end-of-life decision-making from the perspectives of terminally-ill patients and family members and substitute decision-makers of terminally ill patients in Australia. Design: Semi-structured interviews (face to face and telephone) with patients, family or substitute decision-makers experienced in end-of-life decision-making completed between November 2016 and October 2017. A thematic content analysis of interview transcripts. Setting/participants: Purposive sampling across three Australian states provided 16 terminally-ill patients and 33 family and/or substitute decision-makers. Results: Barriers and facilitators emerged across three overlapping domains: systemic factors; individual factors, influenced by personal characteristics and decision-making approach; and communication and information. Health care practitioners play a key role in either supporting or excluding patients, family and substitute decision-makers in decision-making. Conclusion: In addition to enhancing legal literacy of community members and health practitioners about end-of-life decision-making, support such as open communication, advocacy and help with engaging with advanced care planning is needed to facilitate people operationalizing their legal rights, powers and duties. Palliative care and other support services should be more widely available to people both within and outside health systems.

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.

scholarly journals End-of-Life Practices in France under the Claeys-Leonetti Law: Report of Three Cases in the Oncology Unit

2016 ◽  
Vol 9 (3) ◽  
pp. 650-654 ◽  
Author(s):  
Alexandre de Nonneville ◽  
Anthony Marin ◽  
Theo Chabal ◽  
Veronique Tuzzolino ◽  
Marie Fichaux ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Final Stage ◽  
Close Collaboration ◽  
Patient Centered ◽  
Continuous Sedation ◽  
The Right ◽  
Oncology Unit ◽  
First Descriptions

On February 2, 2016, the French government enacted the Claeys-Leonetti law introducing the right to deep and continuous sedation and forbade euthanasia for end-of-life patients. This article reports the first descriptions of this kind of intervention at the final stage of life of 3 patients and highlights the need of patient-centered goals and the importance of close collaboration between the patient, family, and medical and paramedical team to achieve a higher quality of final palliative care.

Dr. Szasz or Dr. Seuss: Whose Right to Refuse Mental Health Treatment?

1981 ◽  
Vol 9 (3) ◽  
pp. 283-303
Author(s):  
Grant H. Morris
Keyword(s):  
Mental Health ◽  
Medical Treatment ◽  
Mental Health Treatment ◽  
Psychiatric Treatment ◽  
Decision Makers ◽  
Willingness To Accept ◽  
Health Treatment ◽  
Mental Patients ◽  
Substitute Decision Makers ◽  
The Right

In this article, the author asserts that the right of involuntarily confined mental patients to refuse psychiatric treatment is both legally sound and medically desirable. This right is viewed as one example of the broader right of any patient to deny his consent to proposed medical treatment. The author critiques two devices that are utilized to subvert the right of mental patients to refuse psychiatric treatment: (1) a competency test that equates the patient's competence with his willingness to accept the psychiatrist's proposed therapy, and (2) the appointment of guardians to act as substitute decision-makers for civil and criminal patients who have not been declared incompetent to make treatment decisions.

Substitute decision makers’ experiences of making decisions at end of life for older persons with dementia: A systematic review and qualitative meta-synthesis

Dementia ◽  
2018 ◽  
Vol 19 (5) ◽  
pp. 1532-1559 ◽  
Author(s):  
Sarah Jane Cresp ◽  
Susan Fiona Lee ◽  
Cheryle Moss
Keyword(s):  
Quality Of Life ◽  
Systematic Review ◽  
End Of Life ◽  
Older Persons ◽  
Decision Makers ◽  
Research Quality ◽  
Advanced Dementia ◽  
Care Plans ◽  
Substitute Decision Makers

Background Substitute decision makers are important for people with advanced dementia, particularly at the end of life. Substitute decision makers report issues in providing support, and physical and psychological consequences from the role. However, there is no synthesised evidence about how substitute decision makers are affected by and experience making decisions for older persons diagnosed with dementia at end of life. Methodology: A protocol for a qualitative systematic review was developed. Seven articles met both inclusion and research quality criteria following a comprehensive search for published and unpublished studies (January 2007–2017, English language). Meta-synthesis was achieved through meta-aggregation of the results from included studies. Results Meta-aggregation of 20 themes into eight categories resulted in five synthesised findings. The findings were: ‘trust’; ‘guilt, mistrust and confusion’; ‘translating quality of life’; ‘negotiating families’; and ‘uncertainty and reactivity’. Trust in healthcare personnel positively affected substitute decision makers and supported their adaptability. Substitute decision makers experienced guilt, mistrust, and confusion as they encountered increased complexity in care and health interventions as social needs changed. Substitute decision makers experienced complexities and struggles as they interpreted quality of life and negotiated end of life treatment decisions. Substitute decision makers experienced practical needs to negotiate family as they fulfilled their support roles. Ambiguity in advance care plans, limited knowledge of dementia, end of life uncertainties, and communication issues reduced substitute decision makers’ proactivity. Implications: Being a substitute decision maker for people with advanced dementia at end of life is stressful. Health professionals need to be cognizant of substitute decision makers experiences and needs, and identify mechanisms to achieve support and education. The findings generate need for further investigation of interventions to meet the needs of substitute decision makers.

scholarly journals Examining Interventions Designed to Support Shared Decision Making and Subsequent Patient Outcomes in Palliative Care: A Systematic Review of the Literature

2018 ◽  
Vol 36 (1) ◽  
pp. 76-88 ◽  
Author(s):  
Dawon Baik ◽  
Hwayoung Cho ◽  
Ruth M. Masterson Creber
Keyword(s):  
Decision Making ◽  
Palliative Care ◽  
End Of Life ◽  
Shared Decision Making ◽  
Patient Outcomes ◽  
Medical Decision ◽  
Cochrane Library ◽  
Shared Decision ◽  
Patient Centered

Background: Shared decision making (SDM) is a key attribute of patient-centered care, which empowers palliative care patients to be able to make optimal medical decisions about end-of-life treatments based on their own values and preferences. Aim: The aim of this systematic literature review is to detail and compare interventions supporting SDM over the last 10 years (January 2008 to December 2017) and to analyze patient/caregiver outcomes at the end of life. Methods: This review followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. PubMed, CINAHL, Embase, and Cochrane Library were searched with key search terms: SDM, decision aid, decision support, palliative care, and hospice care. The Mixed Methods Appraisal Tool was used to assess the quality of the included studies. Results: The initial search yielded 2705 articles, and 12 studies were included in the final review. The quality of the studies was modest and technology-enabled delivery modes (e.g., video, DVD, web-based tool) were most commonly used. Patient/caregiver knowledge of end-of-life care was the most common primary outcome across studies. The strength of the association between the SDM interventions and patient/caregiver outcomes varied. Conclusion: The findings from the studies that examined the effects of the SDM intervention on patient outcomes were inconsistent, highlighting the need for further SDM intervention studies among diverse patient populations using consistent measures. Given the availability of health technologies, future studies should focus on developing individual-tailored, technology-enabled interventions to support patient-centered medical decision making.

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