scholarly journals Role of Law in End-of-Life Decision-Making: Perspectives of Patients, Substitute Decision-Makers and Families

2021 ◽  
Author(s):  
Lindy Willmott ◽  
Ben White ◽  
Rachel Feeney ◽  
Cheryl Tilse ◽  
Jill Wilson ◽  
...  
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Decision Makers ◽  
Substitute Decision Makers ◽  
End Of Life Decision ◽  
Life Decision

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.

What parents want from doctors in end-of-life decision-making for children

2013 ◽  
Vol 99 (3) ◽  
pp. 216-220 ◽  
Author(s):  
J Sullivan ◽  
P Monagle ◽  
L Gillam
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Decision Maker ◽  
Semistructured Interview ◽  
End Of Life Decisions ◽  
Parental Autonomy ◽  
End Of Life Decision ◽  
Life Decision

ObjectiveEnd-of-life decision-making is difficult for everyone involved, as many studies have shown. Within this complexity, there has been little information on how parents see the role of doctors in end-of-life decision-making for children. This study aimed to examine parents’ views and experiences of end-of-life decision-making.DesignA qualitative method with a semistructured interview design was used.SettingParent participants were living in the community.ParticipantsTwenty-five bereaved parents.Main outcomesParents reported varying roles taken by doctors: being the provider of information without opinion; giving information and advice as to the decision that should be taken; and seemingly being the decision maker for the child. The majority of parents found their child's doctor enabled them to be the ultimate decision maker for their child, which was what they very clearly wanted to be, and consequently enabled them to exercise their parental autonomy. Parents found it problematic when doctors took over decision-making. A less frequently reported, yet significant role for doctors was to affirm decisions after they had been made by parents. Other important aspects of the doctor's role were to provide follow-up support and referral.ConclusionsUnderstanding the role that doctors take in end-of-life decisions, and the subsequent impact of that role from the perspective of parents can form the basis of better informed clinical practice.

“Standing in Terri Schiavo's Shoes”: The Role of Genre in End-of-Life Decision Making

2013 ◽  
Vol 22 (3) ◽  
pp. 195-218 ◽  
Author(s):  
Mary Lay Schuster ◽  
Ann La Bree Russell ◽  
Dianne M. Bartels ◽  
Holli Kelly-Trombley
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
End Of Life Decision ◽  
Life Decision

scholarly journals “They Can't Do That?” The Role of Court-Appointed Guardians in End-of-Life Decision-Making (TH311)

2017 ◽  
Vol 53 (2) ◽  
pp. 320
Author(s):  
Diane Dietzen ◽  
Christine Bryson ◽  
Peter DePergola ◽  
Barbara Stoll
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
End Of Life Decision ◽  
Life Decision

Ethical, legal, and end-of-life decision-making

2020 ◽  
pp. 139-152
Author(s):  
Samiran Ray ◽  
Miriam R. Fine-Goulden ◽  
Joe Brierley
Keyword(s):  
Decision Making ◽  
Intensive Care ◽  
End Of Life ◽  
Paediatric Intensive Care ◽  
Legal Advice ◽  
Brainstem Death ◽  
Treatment Limitation ◽  
End Of Life Decision ◽  
Life Decision

All of those working in paediatric intensive care will be faced with difficult decisions and will be looking after children at the end of their lives. Chapter 12 addresses the principles of medical ethics. It explains the assessment of ‘Gillick’ competence and obtaining consent from children, when to consider treatment limitation and involve the palliative care team, and, in some cases, where legal advice should be sought. Brainstem death is defined, and guidance is provided on how to perform brainstem death tests, including the use of ancillary tests and specific requirements for children under the age of 2 months. The chapter discusses end-of-life care in the Paediatric Intensive Care Unit, including organ donation in children. The final scenario explores the role of the intensivist in resource allocation decision-making and intensive care triage.

scholarly journals At the end: A vignette-based investigation of strategies for managing end-of-life decisions in the intensive care unit

2020 ◽  
pp. 175114372095472
Author(s):  
Tom W Reader ◽  
Ria Dayal ◽  
Stephen J Brett
Keyword(s):  
Intensive Care Unit ◽  
Decision Making ◽  
Intensive Care ◽  
End Of Life ◽  
Family Members ◽  
Decision Makers ◽  
End Of Life Decisions ◽  
Life Decisions ◽  
End Of Life Decision ◽  
Life Decision

Background Decision-making on end-of-life is an inevitable, yet highly complex, aspect of intensive care decision-making. End-of-life decisions can be challenging both in terms of clinical judgement and social interaction with families, and these two processes often become intertwined. This is especially apparent at times when clinicians are required to seek the views of surrogate decision makers (i.e., family members) when considering palliative care. Methods Using a vignette-based interview methodology, we explored how interactions with family members influence end-of-life decisions by intensive care unit clinicians ( n = 24), and identified strategies for reaching consensus with families during this highly emotional phase of care. Results We found that the enactment of end-of-life decisions were reported as being affected by a form of loss aversion, whereby concerns over the consequences of not reaching a consensus with families weighed heavily in the minds of clinicians. Fear of conflict with families tended to arise from anticipated unrealistic family expectations of care, family normalization of patient incapacity, and belief systems that prohibit end-of-life decision-making. Conclusions To support decision makers in reaching consensus, various strategies for effective, coherent, and targeted communication (e.g., on patient deterioration and limits of clinical treatment) were suggested as ways to effectively consult with families on end-of-life decision-making.

scholarly journals End-of-Life Decision Support in the ICU: Where Are We Now?

2016 ◽  
Vol 40 (1) ◽  
pp. 84-120 ◽  
Author(s):  
Grant Pignatiello ◽  
Ronald L. Hickman ◽  
Breanna Hetland
Keyword(s):  
Intensive Care Unit ◽  
Decision Making ◽  
Intensive Care ◽  
Decision Support ◽  
End Of Life ◽  
Decision Makers ◽  
Surrogate Decision Makers ◽  
Surrogate Decision ◽  
End Of Life Decision ◽  
Life Decision

Determining effective decision support strategies that enhance quality of end-of-life decision making in the intensive care unit is a research priority. This systematic review identified interventional studies describing the effectiveness of decision support interventions administered to critically ill patients or their surrogate decision makers. We conducted a systematic literature search using PubMed, CINAHL, and Cochrane. Our search returned 121 articles, 22 of which met the inclusion criteria. The search generated studies with significant heterogeneity in the types of interventions evaluated and varied patient and surrogate decision-maker outcomes, which limited the comparability of the studies. Few studies demonstrated significant improvements in the primary outcomes. In conclusion, there is limited evidence on the effectiveness of end-of-life decision support for critically ill patients and their surrogate decision makers. Additional research is needed to develop and evaluate innovative decision support interventions for end-of-life decision making in the intensive care unit.

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