End-of-Life Decision Making: A Preliminary Outline for Preparing Counselors to Work With Terminally Ill Individuals

2008 ◽  
Vol 16 (4) ◽  
pp. 384-390 ◽  
Author(s):  
Jill D. Duba ◽  
Mary Magenta
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Terminally Ill ◽  
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.

scholarly journals ‘It all depends!’ – Preferences for place of care and place of death in terminally ill patients and their carers

2019 ◽  
Author(s):  
Katrin Gerber ◽  
BARBARA HAYES ◽  
CHRISTINA BRYANT
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Terminally Ill ◽  
Qualitative Description ◽  
Place Of Death ◽  
Care Hospital ◽  
Structured Interviews ◽  
Terminally Ill Patients ◽  
End Of Life Decision ◽  
Life Decision

<div><b>Background</b>: It is often suggested that terminally ill patients favour end-of-life care at home. Yet, it is unclear how these preferences are formed, if the process is similar for patients and carers, and if there are discrepancies between preferences for place of care and place of death. Understanding these nuances is essential to support people in their decision-making and ultimately provide better care at the end of life.</div><div><b>Aim</b>: To gain an in-depth understanding of how terminally ill patients and their family caregivers make decisions about preferred place of care and place of death.</div><div>Design: Semi-structured interviews with patients and carers, which were analysed thematically using qualitative description.</div><div><b>Setting/ participants</b>: A total of 17 participants (eight patients and nine carers) recruited from an acute palliative care hospital ward, a sub-acute hospice unit, and a palliative</div><div>homecare organisation in Melbourne, Australia.</div><div><b>Results</b>: The process of forming preferences for place of care and place of death was shaped by uncertainty relating to the illness, the carer and the services. Participants dealt with this uncertainty on a level of thoughts, emotions, and actions. At the end of this process, participants expressed their choices as conditional, personal, relational, contextual and flexible preferences.</div><div><b>Conclusions</b>: End-of-life decision-making rarely ends with a clear and stable choice. Understanding the reasons for the malleability of preferences and the process of how they are</div><div>formed has implications for both clinicians and researchers.</div>

scholarly journals ‘It all depends!’ – Preferences for place of care and place of death in terminally ill patients and their carers

2019 ◽  
Author(s):  
Katrin Gerber ◽  
BARBARA HAYES ◽  
CHRISTINA BRYANT
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Terminally Ill ◽  
Qualitative Description ◽  
Place Of Death ◽  
Care Hospital ◽  
Structured Interviews ◽  
Terminally Ill Patients ◽  
End Of Life Decision ◽  
Life Decision

<div><b>Background</b>: It is often suggested that terminally ill patients favour end-of-life care at home. Yet, it is unclear how these preferences are formed, if the process is similar for patients and carers, and if there are discrepancies between preferences for place of care and place of death. Understanding these nuances is essential to support people in their decision-making and ultimately provide better care at the end of life.</div><div><b>Aim</b>: To gain an in-depth understanding of how terminally ill patients and their family caregivers make decisions about preferred place of care and place of death.</div><div>Design: Semi-structured interviews with patients and carers, which were analysed thematically using qualitative description.</div><div><b>Setting/ participants</b>: A total of 17 participants (eight patients and nine carers) recruited from an acute palliative care hospital ward, a sub-acute hospice unit, and a palliative</div><div>homecare organisation in Melbourne, Australia.</div><div><b>Results</b>: The process of forming preferences for place of care and place of death was shaped by uncertainty relating to the illness, the carer and the services. Participants dealt with this uncertainty on a level of thoughts, emotions, and actions. At the end of this process, participants expressed their choices as conditional, personal, relational, contextual and flexible preferences.</div><div><b>Conclusions</b>: End-of-life decision-making rarely ends with a clear and stable choice. Understanding the reasons for the malleability of preferences and the process of how they are</div><div>formed has implications for both clinicians and researchers.</div>

End-of-Life Decision-Making in Canada: The Report by the Royal Society of Canada Expert Panel on End-of-Life Decision-Making

2011 ◽  
Author(s):  
Udo Schuklenk ◽  
Johannes J. M. van Delden ◽  
Jocelyn Downie ◽  
Sheila McLean ◽  
Ross Upshur ◽  
...  
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Royal Society ◽  
Expert Panel ◽  
End Of Life Decision ◽  
Life Decision

scholarly journals “What Would You Do?”: How Cat Owners Make End-of-Life Decisions and Implications for Veterinary-Client Interactions

Animals ◽  
2021 ◽  
Vol 11 (4) ◽  
pp. 1114
Author(s):  
Katherine Littlewood ◽  
Ngaio Beausoleil ◽  
Kevin Stafford ◽  
Christine Stephens
Keyword(s):  
Decision Making ◽  
New Zealand ◽  
End Of Life ◽  
Companion Animals ◽  
Chronically Ill ◽  
Future Research ◽  
End Of Life Decisions ◽  
Life Decisions ◽  
End Of Life Decision ◽  
Life Decision

Cats are the most common companion animals in New Zealand. Advances in veterinary care means that cats are living longer and there are many older cats. End-of-life decisions about cats are complicated by owner–cat relationships and other psychosocial factors. Our study explored the ways in which end-of-life decisions were being made by owners of older and chronically ill cats in New Zealand and the role of their veterinarian in the process. Qualitative data were gathered via retrospective semi-structured interviews with 14 cat owners using open-ended questions. Transcripts of these interviews were explored for themes using template analysis and nine themes were identified. Four were animal-centered themes: cat behavior change, pain was a bad sign, signs of ageing are not good, and the benefits of having other people see what owners often could not. Five were human-centered themes: veterinarians understanding owners’ relationships with their cat, normalizing death, the need for a good veterinarian to manage end of life, veterinary validation that owners were doing the right thing, and a strong desire to predict the time course and outcome for their cat. End-of-life decision making is complex, and the veterinarian’s role is often poorly defined. Our owners appreciated the expertise and validation that their veterinarian provided but continuity of care was important. Future research aimed at exploring the veterinarian’s perspective during end-of-life decision making for cats would be a valuable addition to the topic.

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