End-of-Life Decisions Among Cancer Patients Compared With Noncancer Patients in Flanders, Belgium

2006 ◽  
Vol 24 (18) ◽  
pp. 2842-2848 ◽  
Author(s):  
Lieve Van den Block ◽  
Johan Bilsen ◽  
Reginald Deschepper ◽  
Greta Van Der Kelen ◽  
Jan L. Bernheim ◽  
...  
Keyword(s):  
End Of Life ◽  
Cancer Patients ◽  
Response Rate ◽  
Decision Making Process ◽  
End Of Life Decisions ◽  
Symptom Alleviation ◽  
Incidence Studies ◽  
Life Decisions ◽  
End Of Life Decision ◽  
Life Decision

Purpose Incidence studies reported more end-of-life decisions with possible/certain life-shortening effect (ELDs) among cancer patients than among noncancer patients. These studies did not correct for the different proportions of sudden/unexpected deaths of cancer versus noncancer patients, which could have biased the results. We investigated incidences and characteristics of ELDs among nonsudden cancer and noncancer deaths. Methods We sampled 5,005 certificates of all deaths in 2001 (Flanders, Belgium) stratified for ELD likelihood. Questionnaires were mailed to the certifying physicians. Data were corrected for stratification and nonresponse. Results The response rate was 59%. Among 2,128 nonsudden deaths included, ELDs occurred in 74% of cancer versus 50% of noncancer patients (P < .001). Symptom alleviation with possible life-shortening effect occurred more frequently among cancer patients (P < .001); nontreatment decisions occurred less frequently (P < .001). The higher incidence of lethal drug use among cancer patients did not hold after correcting for patient age. Half of the cancer patients who died after an ELD were incompetent to make decisions compared with 76% of noncancer patients (P < .001). Discussion with patients and relatives was similar in both groups. In one fifth of all patients the ELD was not discussed. Conclusion ELDs are common in nonsudden deaths. The different incidences for symptom alleviation with possible life-shortening effect and nontreatment decisions among cancer versus noncancer patients may be related to differences in dying trajectories and in timely recognition of patient needs. The end-of-life decision-making process is similar for both groups: consultation of patients and relatives can be improved in a significant minority of patients.

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.

scholarly journals Psychological support in end-of-life decision-making in neonatal intensive care units: Full population survey among neonatologists and neonatal nurses

2019 ◽  
Vol 34 (3) ◽  
pp. 430-434 ◽  
Author(s):  
Laure Dombrecht ◽  
Joachim Cohen ◽  
Filip Cools ◽  
Luc Deliens ◽  
Linde Goossens ◽  
...  
Keyword(s):  
Intensive Care ◽  
End Of Life ◽  
Intensive Care Units ◽  
Neonatal Intensive Care ◽  
Psychological Support ◽  
Neonatal Intensive Care Units ◽  
End Of Life Decisions ◽  
Life Decisions ◽  
End Of Life Decision ◽  
Life Decision

Background: Moral distress and burnout related to end-of-life decisions in neonates is common in neonatologists and nurses working in neonatal intensive care units. Attention to their emotional burden and psychological support in research is lacking. Aim: To evaluate perceived psychological support in relation to end-of-life decisions of neonatologists and nurses working in Flemish neonatal intensive care units and to analyse whether or not this support is sufficient. Design/participants: A self-administered questionnaire was sent to all neonatologists and neonatal nurses of all eight Flemish neonatal intensive care units (Belgium) in May 2017. The response rate was 63% (52/83) for neonatologists and 46% (250/527) for nurses. Respondents indicated their level of agreement (5-point Likert-type scale) with seven statements regarding psychological support. Results: About 70% of neonatologists and nurses reported experiencing more stress than normal when confronted with an end-of-life decision; 86% of neonatologists feel supported by their colleagues when they make end-of-life decisions, 45% of nurses feel that the treating physician listens to their opinion when end-of-life decisions are made. About 60% of both neonatologists and nurses would like more psychological support offered by their department when confronted with end-of-life decisions, and 41% of neonatologists and 50% of nurses stated they did not have enough psychological support from their department when a patient died. Demographic groups did not differ in terms of perceived lack of sufficient support. Conclusion: Even though neonatal intensive care unit colleagues generally support each other in difficult end-of-life decisions, the psychological support provided by their department is currently not sufficient. Professional ad hoc counselling or standard debriefings could substantially improve this perceived lack of support.

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.

scholarly journals End-of-Life Decision Making in Chronic Life-Limiting Disease: A Concept Analysis and Conceptual Model

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 417-417
Author(s):  
Kristin Levoy ◽  
Elise Tarbi ◽  
Joseph De Santis
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Conceptual Model ◽  
Family Caregivers ◽  
Family Caregiver ◽  
Concept Analysis ◽  
End Of Life Decisions ◽  
Life Decisions ◽  
End Of Life Decision ◽  
Life Decision

Abstract Most deaths from chronic life-limiting diseases are preceded by end-of-life decisions, yet patients and caregivers are ill-equipped to make them. The lack of a common vocabulary surrounding end-of-life decision making and the paucity of conceptual models that explicate its components hamper improvements in clinical practice and research. Walker and Avant’s method for concept analysis was used to investigate uses of “end-of-life decision making” in the literature in order to identify its components (antecedents, attributes, consequences), describe stakeholder roles (patients, family/caregivers, health care providers), and develop a conceptual model. An iterative search strategy resulted in 143 included sources. These encompassed 1,127,095 patients (primarily older adults), 3,384 family/caregivers, and 588 healthcare providers. Evidence revealed that end-of-life decision making is a process, not a discrete event. This begins with preparation (antecedents), which involves the designation of a decision maker and iterative patient, family/caregiver, and healthcare provider communication across the chronic illness. These preparatory processes inform end-of-life decisions, which possess three attributes: 1) serial choices in the terminal illness phase that are 2) weighed in terms of their potential outcomes 3) through patient and family/caregiver collaboration. The components impact patients’ death experiences, caregivers’ bereavement, and healthcare systems (outcomes). The resulting conceptual model highlights the larger context of preparation (beyond advance care planning) and the prominent role of caregivers in the end-of-life decision making process. Enhanced measurement must account for the dose, content, and quality of the preparation and decision components that collectively contribute to outcomes, which holds implications for practice improvements and research.

End-of-life decisions between inner reflexivity and care relationship: notes for a research design

2011 ◽  
pp. 66-84
Author(s):  
Guido Giarelli
Keyword(s):  
End Of Life ◽  
Vegetative State ◽  
End Of Life Decisions ◽  
Care Relationship ◽  
Research Designs ◽  
Different Types ◽  
Life Decisions ◽  
Italian Context ◽  
End Of Life Decision ◽  
Life Decision

After reconstructing in details the cases of Piergiorgio Welby and Eluana Englaro as illustrative in the Italian context of the problems raised by the crises of the idea of cerebral death and by the condition of "permanent vegetative state", there is an attempt to analyze, beyond the news, the different types of end-of-life decisions considering the specific issues of legal, bioethical and sociological nature pertaining to each of them, trying to outline for everyone some research designs of sociological interest; to conclude with a series of considerations on a couple of background questions related to the concept of person which, implicitly or explicitly, cross cuts all the different debates, and the care relationship, as a framework within which the end-of-life decision is embedded.

End-of-Life Decisions

2013 ◽  
Author(s):  
Ellen L. Csikai
Keyword(s):  
End Of Life ◽  
Health Care Providers ◽  
Care Providers ◽  
End Of Life Decisions ◽  
Psychosocial Consequences ◽  
Wish To Die ◽  
Advance Care ◽  
Life Decisions ◽  
End Of Life Decision ◽  
Life Decision

As medical technology advances producing the ability to prolong life almost indefinitely, individuals and families are asked to make increasingly complex choices about what treatments best correspond to their conceptions of how they wish to die. These decisions create a need for attention to medical aspects as well as psychosocial consequences. Social workers play pivotal roles in ensuring access to needed information and resources and in safeguarding individuals' rights to self-determination in end-of-life decisions. This entry discusses issues related to advance care planning, the process of end-of-life decision making, and social work roles with individuals, families, and health care providers.

Trends in End-of-Life Decision Making in Patients With and Without Cancer

2013 ◽  
Vol 31 (11) ◽  
pp. 1450-1457 ◽  
Author(s):  
Koen Pardon ◽  
Kenneth Chambaere ◽  
H. Roeline W. Pasman ◽  
Reginald Deschepper ◽  
Judith Rietjens ◽  
...  
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Death Certificate ◽  
Symptom Burden ◽  
End Of Life Decisions ◽  
Patients With Cancer ◽  
Symptom Alleviation ◽  
End Of Life Decision ◽  
Explicit Request ◽  
Life Decision

Purpose Because of cancer's high symptom burden and specific disease course, patients with cancer are more likely than other patients to face end-of-life decisions that have possible or certain life-shortening effects (ELDs). This study examines the incidence of ELDs in patients with cancer compared with patients without cancer and the trends in ELD incidence from 1998-2007. Patients and Methods A nationwide death certificate study in Flanders, Belgium, was conducted in 2007, analogous to one completed in 1998. Physicians who had signed selected death certificates (n = 6,927) were sent a questionnaire. Results The response rate was 58.4%. Nonsudden deaths were studied. Intensified symptom alleviation occurred more in patients with cancer than in those without (53.8% v 31.7%; P < .001) as did euthanasia (6.8% v 0.9%; P < .001). There was no difference between groups in nontreatment decisions and life-ending acts without patient's explicit request. Patients with cancer were less involved in the end-of-life decision-making process than patients without cancer (69.7% v 83.5%; P = .001). From 1998 to 2007, ELD incidence has increased in patients with cancer (+6.7%) and even more in patients without cancer (+14.9%) because of an increase in intensified symptom alleviation. In patients with cancer, euthanasia rates increased strongly and life-ending acts without the patient's explicit request decreased. Conclusion The higher ELD incidence in patients with cancer compared with those without is probably related to differences in disease trajectories and access to end-of-life care. During the period from 1998 to 2007, when euthanasia was legalized and palliative care intensified, overall ELDs increased, including those as a result of symptom alleviation and euthanasia, with a decrease in life-ending acts without explicit request.

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.

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