Navigating complex end-of-life decisions in a family-centric society

2019 ◽  
Vol 27 (4) ◽  
pp. 1003-1011
Author(s):  
Guozhang Lee
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Careful Consideration ◽  
Best Interests ◽  
End Of Life Decisions ◽  
Difficult Decision ◽  
The Family ◽  
Decision Making Processes ◽  
End Of Life Decision ◽  
Economic Considerations

End-of-life decision making frequently involves a complex balancing of clinical, cultural, social, ethical, religious and economic considerations. Achieving a happy balance of these sometimes-competing interests, however, can be particularly fraught in a family-centric society like Singapore where the family unit often retains significant involvement in care determinations necessitating careful consideration of the family’s position during the decision-making process. While various decision-making tools such as relational autonomy, best interests principle and welfare-based models have been proposed to help navigate such difficult decision-making processes, their application in practical terms, however, is dubious at best. This case report is presented to highlight these issues and explore the utility of these frameworks within the Singapore end-of-life care context when the interests of the family may be dissonant from those of the patient.

scholarly journals Family Members’ Informal Roles in End-of-Life Decision Making in Adult Intensive Care Units

2012 ◽  
Vol 21 (1) ◽  
pp. 43-51 ◽  
Author(s):  
Jill R. Quinn ◽  
Madeline Schmitt ◽  
Judith Gedney Baggs ◽  
Sally A. Norton ◽  
Mary T. Dombeck ◽  
...  
Keyword(s):  
Health Care ◽  
Decision Making ◽  
Intensive Care ◽  
End Of Life ◽  
Intensive Care Units ◽  
Family Members ◽  
The Family ◽  
Decision Making Processes ◽  
End Of Life Decision ◽  
Life Decision

Background To support the process of effective family decision making, it is important to recognize and understand informal roles that various family members may play in the end-of-life decision-making process. Objective To describe some informal roles consistently enacted by family members involved in the process of end-of-life decision making in intensive care units. Methods Ethnographic study. Data were collected via participant observation with field notes and semistructured interviews on 4 intensive care units in an academic health center in the mid-Atlantic United States from 2001 to 2004. The units studied were a medical, a surgical, a burn and trauma, and a cardiovascular intensive care unit. Participants Health care clinicians, patients, and family members. Results Informal roles for family members consistently observed were primary caregiver, primary decision maker, family spokesperson, out-of-towner, patient’s wishes expert, protector, vulnerable member, and health care expert. The identified informal roles were part of families’ decision-making processes, and each role was part of a potentially complicated family dynamic for end-of-life decision making within the family system and between the family and health care domains. Conclusions These informal roles reflect the diverse responses to demands for family decision making in what is usually a novel and stressful situation. Identification and description of these informal roles of family members can help clinicians recognize and understand the functions of these roles in families’ decision making at the end of life and guide development of strategies to support and facilitate increased effectiveness of family discussions and decision-making processes.

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.

Palliative care nursing involvement in end-of-life decision-making: Qualitative secondary analysis

2018 ◽  
Vol 26 (6) ◽  
pp. 1680-1695 ◽  
Author(s):  
Pablo Hernández-Marrero ◽  
Emília Fradique ◽  
Sandra Martins Pereira
Keyword(s):  
Decision Making ◽  
Palliative Care ◽  
End Of Life ◽  
Secondary Analysis ◽  
Controversial Issues ◽  
End Of Life Decisions ◽  
Ethics Research ◽  
Qualitative Secondary Analysis ◽  
End Of Life Decision ◽  
Life Decision

Background: Nurses are the largest professional group in healthcare and those who make more decisions. In 2014, the Committee on Bioethics of the Council of Europe launched the “Guide on the decision-making process regarding medical treatment in end-of-life situations” (hereinafter, Guide), aiming at improving decision-making processes and empowering professionals in making end-of-life decisions. The Guide does not mention nurses explicitly. Objectives: To analyze the ethical principles most valued by nurses working in palliative care when making end-of-life decisions and investigate if they are consistent with the framework and recommendations of the Guide; to identify what disputed/controversial issues are more frequent in these nurses’ current end-of-life care practices. Design: Qualitative secondary analysis. Participants/context: Three qualitative datasets including 32 interviews from previous studies with nurses working in palliative care in Portugal. Ethical consideration: Ethical approval was obtained from the Ethics Research Lab of the Instituto de Bioética (Ethics Research Lab of the Institute of Bioethics) (Ref.04.2015). Ethical procedures are thoroughly described. Findings: All participant nurses referred to autonomy as an ethical principle paramount in end-of-life decision-making. They were commonly involved in end-of-life decision-making. Palliative sedation and communication were the most mentioned disputed/controversial issues. Discussion: Autonomy was highly valued in end-of-life care and decision-making. Nurses expressed major concerns in assessing patients’ preferences, wishes, and promoting advance care planning. Nurses working in palliative care in Portugal were highly involved in end-of-life decision-making. These processes embraced a collective, inclusive approach. Palliative sedation was the most mentioned disputed issue, which is aligned with previous findings. Communication also emerged as a sensitive ethical issue; it is surprising, however, that only three nurses referred to it. Conclusion: While the Guide does not explicitly mention nurses in its content, this study shows that nurses working in palliative care in Portugal are involved in these processes. Further research is needed on nurses’ involvement and practices in end-of-life decision-making.

Family involvement in the end-of-life decisions of competent intensive care patients

2012 ◽  
Vol 20 (1) ◽  
pp. 61-71 ◽  
Author(s):  
Ranveig Lind ◽  
Per Nortvedt ◽  
Geir Lorem ◽  
Olav Hevrøy
Keyword(s):  
Decision Making ◽  
Intensive Care ◽  
End Of Life ◽  
Family Involvement ◽  
Decision Making Process ◽  
Primary Role ◽  
Her Family ◽  
Intensive Care Patients ◽  
The Family ◽  
End Of Life Decision

In this article, we report the findings from a qualitative study that explored how relatives of terminally ill, alert and competent intensive care patients perceived their involvement in the end-of-life decision-making process. Eleven family members of six deceased patients were interviewed. Our findings reveal that relatives narrate about a strong intertwinement with the patient. They experienced the patients’ personal individuality as a fragile achievement. Therefore, they viewed their presence as crucial with their primary role to support and protect the patient, thereby safeguarding his values and interests. However, their inclusion in decision making varied from active participation in the decision-making process to acceptance of the physicians’ decision or just receiving information. We conclude that models of informed shared decision making should be utilised and optimised in intensive care, where nurses and physicians work with both the patient and his or her family and regard the family as partners in the process.

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.

Waiting for a miracle or best medical practice? End-of-life medical ethical dilemmas in Bahrain

2019 ◽  
Vol 45 (6) ◽  
pp. 367-372 ◽  
Author(s):  
Sayed Alwadaei ◽  
Barrak Almoosawi ◽  
Hani Humaidan ◽  
Susan Dovey
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Medical Practice ◽  
Life Support ◽  
Cultural Dimensions ◽  
End Of Life Decisions ◽  
Brain Dead ◽  
Life Decisions ◽  
End Of Life Decision ◽  
Life Decision

Background and objectivesIn Bahrain, maintaining life support at all costs is a cultural value considered to be embedded in the Islamic religion. We explore end-of-life decision making for brain dead patients in an Arab country where medical cultures are dominated by Western ideas and the lay culture is Eastern.MethodsIn-depth interviews were conducted from February to April 2018 with 12 Western-educated Bahraini doctors whose medical practice often included end-of-life decision making. Discussions were about who should make withdrawal of life support decisions, how decisions are made and the context for decision making. To develop results, we used the inductive method of thematic analysis.ResultsInformants considered it difficult to engage non-medical people in end-of-life decisions because of people’s reluctance to talk about death and no legal clarity about medical responsibilities. There was disagreement about doctors’ roles with some saying that end-of-life decisions were purely medical or purely religious but most maintaining that such decisions need to be collectively owned by medicine, patients, families, religious advisors and society. Informants practised in a legal vacuum that made their ethics interpretations and clinical decision making idiosyncratic regarding end-of-life care for brain dead patients. Participants referred to contrasts between their current practice and previous work in other countries, recognising the influences of religious and cultural dimensions on their practice in Bahrain.ConclusionsEnd-of-life decisions challenge Western-trained doctors in Bahrain as they grapple with aligning respect for local culture with their training in the ethical practice of Western medicine.

scholarly journals Withholding treatment and intellectual disability: Second survey on end-of-life decisions in Switzerland

2016 ◽  
Vol 4 ◽  
pp. 205031211665263 ◽  
Author(s):  
Monika T Wicki
Keyword(s):  
Decision Making ◽  
Intellectual Disability ◽  
End Of Life ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
Residential Homes ◽  
End Of Life Decisions ◽  
Life Decisions ◽  
End Of Life Decision ◽  
Life Decision

Background: As people live longer, they are more likely to die over a prolonged period from incurable, chronic illnesses that occur more frequently in old age. Therefore, people will experience an increase in end-of-life discussions and decisions. Aim: The aim of this study was to explore the prevalence and nature of end-of-life decisions for people with disabilities in Swiss residential homes. Design: A cross-sectional survey in the three biggest German-speaking regions in Switzerland (N = 209) was conducted. Setting: All of the residential homes for adults with disabilities (N = 209) were invited to participate in a cross-sectional survey. The response quote was 76.7%. Directors provided information on 82 deaths. Chi-square and t-tests were used to study differences in prevalence and nature of end-of-life decisions between people with intellectual disability (ID) and people with other disabilities. Results: An end-of-life decision was taken in 53.7% of the cases (n = 44). For people with ID, the decision to withhold treatment had been taken more often (28.9%, 13 cases) than for people with other disabilities (8.1%, 3 cases) (χ2 (1, N = 82) = 5.58, p = 0.017). Conclusion: The study provides insight in end-of-life decision-making for people with disabilities in Switzerland. The results have implications on surrogate decision-making for people with ID living in residential homes. As the study partly confirms the results of previous studies, further studies will be necessary.

Intensive care nurses’ involvement in the end-of-life process – perspectives of relatives

2012 ◽  
Vol 19 (5) ◽  
pp. 666-676 ◽  
Author(s):  
Ranveig Lind ◽  
Geir F Lorem ◽  
Per Nortvedt ◽  
Olav Hevrøy
Keyword(s):  
Decision Making ◽  
Intensive Care ◽  
End Of Life ◽  
Decision Making Process ◽  
Intensive Care Nurses ◽  
Decision Making Processes ◽  
Nurses Role ◽  
End Of Life Decision ◽  
Life Decision

In this article, we report findings from a qualitative study that explored how the relatives of intensive care unit patients experienced the nurses’ role and relationship with them in the end-of-life decision-making processes. In all, 27 relatives of 21 deceased patients were interviewed about their experiences in this challenging ethical issue. The findings reveal that despite bedside experiences of care, compassion and comfort, the nurses were perceived as vague and evasive in their communication, and the relatives missed a long-term perspective in the dialogue. Few experienced that nurses participated in meetings with doctors and relatives. The ethical consequences imply increased loneliness and uncertainty, and the experience that the relatives themselves have the responsibility of obtaining information and understanding their role in the decision-making process. The relatives therefore felt that the nurses could have been more involved in the process.

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