End-of-life decision making in critical illness: Perspectives of Asian parents

2021 ◽  
pp. 1-10
Author(s):  
Kristy Xinghan Fu ◽  
Yee Keow Chiong ◽  
Nicola Ngiam
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Tertiary Care ◽  
Asian Population ◽  
Emergency Department Visits ◽  
Case Vignette ◽  
Healthcare Team ◽  
Care Hospital ◽  
Case Vignettes ◽  
End Of Life Decision

Abstract Objective To explore parents’ perspectives regarding end-of-life (EOL) decisions, factors and possible barriers that influence the EOL decision making process, and to understand parental preferences for communication about EOL care in an Asian population. Method A prospective questionnaire cohort study conducted in a university-based tertiary care hospital. 30 parents of children who had been admitted to general pediatric wards for acute ailments and/or were being followed up in general pediatric outpatient clinics after inpatient admissions or emergency department visits completed 30 interviewer-administered questionnaires. With the first 10 completed questionnaires, we sought feedback on the design of the four case vignettes and related questions. Responses to specific questions related to each case vignette were rated on a Likert scale. Results The majority of parents were able to comprehend and identify with the issues in the case vignettes, which allowed them to respond appropriately. Parents tended to avoid active withdrawal or withholding of life-sustaining treatment. The top three priorities for parents making EOL decisions for their children were: the chance of improvement, the presence of pain or discomfort, and information provided by healthcare staff. Parents reported that they would prefer to know immediately if their child is at risk of dying; they also preferred to get as much information as possible from the healthcare team and thought that meeting with the healthcare team before making EOL decisions was pivotal. Significance of results Parents place highest priorities on their child's likelihood of improvement, perception of their child's pain, and information provided by healthcare professionals in making EOL decisions.

‘It all depends!’: A qualitative study of preferences for place of care and place of death in terminally ill patients and their family caregivers

2019 ◽  
Vol 33 (7) ◽  
pp. 802-811 ◽  
Author(s):  
Katrin Gerber ◽  
Barbara Hayes ◽  
Christina Bryant
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Family Caregivers ◽  
Terminally Ill ◽  
Qualitative Description ◽  
Place Of Death ◽  
Care Hospital ◽  
Structured Interviews ◽  
Terminally Ill Patients ◽  
End Of Life Decision

Background: 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 family caregivers, 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. Aim: 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. Design: Semi-structured interviews with patients and family caregivers, which were analysed thematically using qualitative description. Setting/participants: A total of 17 participants (8 patients and 9 caregivers) recruited from an acute palliative care hospital ward, a sub-acute hospice unit, and a palliative homecare organisation in Melbourne, Australia. Results: The process of forming location preferences was shaped by uncertainty relating to the illness, the caregiver and the services. Patients and caregivers dealt with this uncertainty on a level of thoughts, emotions, and actions. At the end of this process, patients and caregivers expressed their choices as contextual, personal, relational, conditional and flexible preferences. Conclusions: These findings suggest that in many cases end-of-life decision-making does not conclude with a clear and stable choice. Understanding the reasons for the malleability of preferences and the process of how they are formed has implications for both clinicians and researchers.

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

The implications of the Mental Capacity Act (MCA) 2005 for advance care planning and decision making

2018 ◽  
Author(s):  
Simon Chapman ◽  
Ben Lobo
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Advance Care Planning ◽  
Care Planning ◽  
Best Interest ◽  
Policy And Practice ◽  
Advance Care ◽  
Current Context ◽  
Mental Capacity Act ◽  
End Of Life Decision

This chapter provides an overview of the MCA’s impact on end-of-life care. It situates the MCA in the current context of policy and practice. It describes how the MCA can be used to improve care, enable people to express and protect choices, and empower and enable the professional and/or the proxy decision maker. It also presents an introduction and explanation of the role of the IMCA and how it might apply to advance care planning (ACP) and end of life decision making, and an explanation of the legal and ethical process involved in reaching best interest decisions, especially for potentially vulnerable people in care homes and other settings.

scholarly journals Facing Death: Attitudes toward Physician-Assisted End of Life among Physicians Working at a Tertiary-Care-Hospital in Israel

2021 ◽  
Vol 18 (12) ◽  
pp. 6396
Author(s):  
Keren Dopelt ◽  
Dganit Cohen ◽  
Einat Amar-Krispel ◽  
Nadav Davidovitch ◽  
Paul Barach
Keyword(s):  
End Of Life ◽  
Tertiary Care Hospital ◽  
Human Life ◽  
Tertiary Care ◽  
Terminally Ill ◽  
Background Information ◽  
Care Hospital ◽  
Medical Assistance In Dying ◽  
Terminally Ill Patients ◽  
The Right

The demand for medical assistance in dying remains high and controversial with a large knowledge gap to support optimal patient care. The study aimed to explore physicians’ attitudes regarding euthanasia and examine the factors that related to these attitudes. We surveyed 135 physicians working at a tertiary-care hospital in Israel. The questionnaire was comprised of demographic and background information, DNR procedure information, encounters with terminally ill patients, familiarity with the law regarding end-of-life questions, and Attitudes toward Euthanasia. About 61% agreed that a person has the right to decide whether to expedite their own death, 54% agreed that euthanasia should be allowed, while 29% thought that physicians should preserve a patients’ life even when they expressed the wish to die. A negative statistically significant relationship was found between the level of religiosity and attitudes toward euthanasia. The physicians’ attitudes towards euthanasia are quite positive when compared to other countries. The data shows a conflict of values: the sacredness of human life versus the desire to alleviate patients’ suffering. The Coronavirus-19 outbreak reinforces the importance of supporting physicians’ efforts to provide ethical and empathic communication for terminally ill patients. Future studies should aim to improve our understanding and treatment of the specific types of suffering that lead to end-of-life requests.

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