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Bioethical implications of end-of-life decision-making in patients with dementia: a tale of two societies.

ABSTRACT: End-of-life decision-making in patients with dementia is a complex topic. Belgium and the Netherlands have been at the forefront of legislative advancement and progressive societal changes concerning the perspectives toward physician-assisted death (PAD). Careful consideration of clinical and social aspects is essential during the end-of-life decision-making process in patients with dementia. Geriatric assent provides the physician, the patient and his family the opportunity to end life with dignity. Unbearable suffering, decisional competence, and awareness of memory deficits are among the clinical considerations that physicians should incorporate during the end-of-life decision-making process. However, as other societies introduce legislature granting the right of PAD, new social determinants should be considered; Mexico City is an example. Current perspectives regarding advance euthanasia directives (AED) and PAD in patients with dementia are evolving. A new perspective that hinges on the role of the family and geriatric assent should help culturally heterogeneous societies in the transition of their public health care policies regarding end-of-life choices.

SUBMITTER: Mondragon JD

PROVIDER: S-EPMC7205770 | biostudies-literature | 2020 May

REPOSITORIES: biostudies-literature

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Bioethical implications of end-of-life decision-making in patients with dementia: a tale of two societies.

Mondragón Jaime D JD Salame-Khouri Latife L Kraus-Weisman Arnoldo S AS De Deyn Peter P PP

Monash bioethics review 20200501 1

End-of-life decision-making in patients with dementia is a complex topic. Belgium and the Netherlands have been at the forefront of legislative advancement and progressive societal changes concerning the perspectives toward physician-assisted death (PAD). Careful consideration of clinical and social aspects is essential during the end-of-life decision-making process in patients with dementia. Geriatric assent provides the physician, the patient and his family the opportunity to end life with dig ...[more]

PMID: 32335862

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Project description:BackgroundBest interests is a ubiquitous principle in medical policy and practice, informing the treatment of both children and adults. Yet theory underlying the concept of best interests is unclear and rarely articulated. This paper examines bioethical literature for theoretical accounts of best interests to gain a better sense of the meanings and underlying philosophy that structure understandings.MethodsA scoping review of was undertaken. Following a literature search, 57 sources were selected and analysed using the thematic method.ResultsThree themes emerged. The first placed best interests within the structure of wider theory, noting relationships with consequentialism, deontology, prudential value theory, rights and political philosophy. The second mapped a typology of processes of decision-making, among which best interests was ambiguously positioned. It further indicated factors that informed best interests decision-making, primarily preferences, dignity and quality of life. The final theme considered best interests from a relational perspective.ConclusionsCharacterisation of best interests as strictly paternalist and consequentialist is questionable: while accounts often suggested a consequentialist basis for best interests, arguments appeared philosophically weak. Deontological accounts, found in law and Kantianism, and theories of political liberalism influenced accounts of best interests, with accounts often associating best interests with negative patient preferences (i.e. individual refusals). There was much more emphasis on negative interests than positive interests. Besides preference, factors like dignity and quality of life were held to inform best interests decisions, but generally were weakly defined. To the extent that preferences were unable to inform decision making, decisions were either made by proxy authority or by an intersubjective process of diffuse authority. Differing approaches reflect bifurcations in liberal philosophy between new liberalism and neo-liberalism. Although neither account of authority appears dominant, bias to negative interests suggests that bioethical debate tends to reflect the widespread ascendancy of neo-liberalism. This attitude was underscored by the way relational accounts converged on private familial authority. The visible connections to theory suggest that best interests is underpinned by socio-political trends that may set up frictions with practice. How practice negotiates these frictions remains a key question.

Project description:BackgroundSubstituted judgment assumes adequate knowledge of patient's mind-set. However, surrogates' prediction of individual healthcare decisions is often inadequate and may be based on shared background rather than patient-specific knowledge. It is not known whether surrogate's prediction of patient's integrative life-story narrative is better.MethodsRespondents in 90 family pairs (30 husband-wife, 30 parent-child, 30 sibling-sibling) rank-ordered 47 end-of-life statements as life-story narrative measure (Q-sort) and completed instruments on decision-control preference and healthcare-outcomes acceptability as control measures, from respondent's view (respondent-personal) and predicted pair's view (respondent-surrogate). They also scored their confidence in surrogate's decision-making (0 to 4 = maximum) and familiarity with pair's healthcare-preferences (1 to 4 = maximum). Life-story narratives' prediction was examined by calculating correlation of statements' ranking scores between respondent-personal and respondent-surrogate Q-sorts (projection) and between respondent-surrogate and pair-personal Q-sorts before (simulation) and after controlling for correlation with respondent-personal scores (adjusted-simulation), and by comparing percentages of respondent-surrogate Q-sorts co-loading with pair-personal vs. respondent-personal Q-sorts. Accuracy in predicting decision-control preference and healthcare-outcomes acceptability was determined by percent concordance. Results were compared among subgroups defined by intra-pair relationship, surrogate's decision-making confidence, and healthcare-preferences familiarity.ResultsMean (SD) age was 35.4 (10.3) years, 69% were females, and 73 and 80% reported ≥ very good health and life-quality, respectively. Mean surrogate's decision-making confidence score was 3.35 (0.58) and 75% were ≥ familiar with pair's healthcare-preferences. Mean (95% confidence interval) projection, simulation, and adjusted-simulation correlations were 0.68 (0.67-0.69), 0.42 (0.40-0.44), and 0.26 (0.24-0.28), respectively. Out of 180 respondent-surrogate Q-sorts, 24, 9, and 32% co-loaded with respondent-personal, pair-personal, or both Q-sorts, respectively. Accuracy in predicting decision-control preference and healthcare-outcomes acceptability was 47 and 52%, respectively. Surrogate's decision-making confidence score correlated with adjusted-simulation's correlation score (rho = 0.18, p = 0.01). There were significant differences among the husband-wife, parent-child, and sibling-sibling subgroups in percentage of respondent-surrogate Q-sorts co-loading with pair-personal Q-sorts (38, 32, 55%, respectively, p = 0.03) and percent agreement on healthcare-outcomes acceptability (55, 35, and 67%, respectively, p = 0.002).ConclusionsDespite high self-reported surrogate's decision-making confidence and healthcare-preferences familiarity, family surrogates are variably inadequate in simulating life-story narratives. Simulation accuracy may not follow the next-of-kin concept and is 38% based on shared background.

Project description:Characteristics of the physician influence the essential decision-making in end-of-life care. However, the effect of special education in palliative medicine on different aspects of decision-making in end-of-life care remains unknown. The aim of this study was to explore the decision-making in end-of-life care among physicians with or without special competency in palliative medicine (cPM).A questionnaire including an advanced lung cancer patient-scenario with multiple decision options in end-of-life care situation was sent to 1327 Finnish physicians. Decisions to withdraw or withhold ten life-prolonging interventions were asked on a scale from 1 (definitely would not) to 5 (definitely would) - first, without additional information and then after the family's request for aggressive treatment and the availability of an advance directive. Values from chronological original scenario, family's appeal and advance directive were clustered by trajectory analysis.We received 699 (53%) responses. The mean values of the ten answers in the original scenario were 4.1 in physicians with cPM, 3.4 in general practitioners, 3.4 in surgeons, 3.5 in internists and 3.8 in oncologists (p?<?0.05 for physicians with cPM vs. oncologists and p?<?0.001 for physicians with cPM vs. others). Younger age and not being an oncologist or not having cPM increased aggressive treatment decisions in multivariable logistic regression analysis. The less aggressive approach of physicians with cPM differed between therapies, being most striking concerning intravenous hydration, nasogastric tube and blood transfusions. The aggressive approach increased by the family's request (p?<?0.001) and decreased by an advance directive (p?<?0.001) in all physicians, regardless of special education in palliative medicine.Physicians with special education in palliative medicine make less aggressive decisions in end-of-life care. The impact of specialty on decision-making varies among treatment options. Education in end-of-life care decision-making should be mandatory for young physicians and those in specialty training.

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Bioethical implications of end-of-life decision-making in patients with dementia: a tale of two societies.

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Bioethical implications of end-of-life decision-making in patients with dementia: a tale of two societies.

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