How do surrogates make treatment decisions for patients with dementia: An experimental survey study.

Despite the growing need for surrogate decision-making for older adults, little is known about how surrogates make decisions and whether advance directives would change decision-making. We conducted a nationally representative experimental survey that cross-randomized cognitive impairment, gender, and characteristics of advance care planning among hospitalized older adults through a series of vignettes. Our study yielded three main findings: first, respondents were much less likely to recommend life-sustaining treatments for patients with dementia, especially after personal exposure. Second, respondents were more likely to ignore patient preferences for life-extending treatment when the patient had dementia, and choose unwanted life-extending treatments for patients without dementia. Third, in scenarios where the patient's wishes were unclear, respondents were more likely to choose treatments that matched their own preferences. These findings underscore the need for improved communication and decision-making processes for patients with cognitive impairment and highlight the importance of choosing a surrogate decision-maker with similar treatment preferences.

Conspiracy theories, clinical decision-making, and need for bioethics debate: A response to Stout.

Although people who endorse conspiracy theories related to medicine often have negative attitudes toward particular health care measures and may even shun the healthcare system in general, conspiracy theories have received rather meager attention in bioethics literature. Consequently, and given that conspiracy theorizing appears rather prevalent, it has been maintained that there is significant need for bioethics debate over how to deal with conspiracy theories. While the proposals have typically focused on the effects that unwarranted conspiracy theories have in the public health context, Nathan Stout's recent argument concentrates on the impacts that such theories have at the individual level of clinical decision-making. In this article, I maintain that duly acknowledging the impacts of conspiracy theories that raise Stout's concern does not require bioethics debate over the proper response to the influence of conspiracy theories in healthcare. Having evaluated two possible objections, I conclude by briefly clarifying the purported import of the response to Stout.

On legal guardianship: An exploratory assessment of knowledge, attitudes and practices of resident physicians.

BACKGROUND: Clinicians encounter patients under legal guardianship. We aimed to assess the knowledge, attitudes and practices (KAP) on legal guardianship in residents. METHODS: A KAP pilot survey about legal guardianship was developed by an interdisciplinary medicine-law-public health team and was distributed via institutional email to internal medicine, psychiatry, and neurology residents in a single academic institution. RESULTS: Of the 172 invited residents, 105 (61%) responded and 102 surveys were included in the final analysis. Most respondents (58% women; internal medicine 73%, neurology 15%, psychiatry 12%) had attended 42 medical schools from 16 countries and had heard about guardianship (88%), but only 23% reported having received training on guardianship during medical school or residency. The vast majority (97%) understood the intended benefit of guardianship, but only 22.5% reported knowing that guardianship removed an individual's decision-making rights. Nearly half (47%) of respondents reported never having asked for documentation to prove that an individual was a patient's guardian, and only 15% expected to see a court order as proof of guardianship status. CONCLUSIONS: Although most residents intuitively understood the intended benefit of guardianship, they did not understand its full implications for clinical practice. Training interventions are warranted.

Uncertainty in surrogate decision-making about end-of-life care for people with dementia: An integrative review.

AIM: To describe uncertainty in surrogate decision-making regarding end-of-life care for people with dementia using Mishel's reconceptualized uncertainty in illness theory. DESIGN: Integrative literature review using Whittemore and Knafl's approach. DATA SOURCES: PubMed, CINAHL, EMBASE, Scopus and Web of Science were searched using terms such as uncertainty/unpredictability, decision-making/advance care planning/end-of-life care planning, surrogate/family/caregiver/proxy and dementia. The search was initially conducted on 28 September 2021 and updated on 31 July 2023. REVIEW METHODS: Through systematic screening, 20 research articles were included in the analysis. Content related to uncertainty in surrogate decision-making regarding end-of-life care was extracted and analysed, focusing on the reconceptualized uncertainty in illness theory. RESULTS: First, surrogate uncertainty exists in various areas of surrogate decision-making regarding end-of-life care. Second, antecedents of surrogate uncertainty include numerous intrinsic and extrinsic factors. Third, surrogates exhibited some negative psychological responses to uncertainty but continually processed and structured their uncertainty through certain approaches, leading them to grow as decision-makers. Finally, research-based evidence on surrogates' processing of uncertainty and shifts to new life perspectives remains limited. CONCLUSION: Surrogates' uncertainty in decision-making regarding end-of-life care for people with dementia is well characterized using the reconceptualized uncertainty in illness theory. Healthcare providers should help surrogates manage their uncertainty in surrogate decision-making more constructively throughout the dementia trajectory. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: The findings highlight the importance of assessing how surrogates process uncertainty and gauging how to help them process uncertainty and transition to new life perspectives. IMPACT: This review contributes to healthcare professionals' understanding of surrogates' uncertainty in end-of-life care planning for people with dementia, especially what they are uncertain about, what influences their uncertainty and how they process it. REPORTING METHOD: This study adheres to the PRISMA reporting guidelines. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution.

[Human dignity and autonomy in medicoethical decisions at the end of life]. / Menschenwürde und Autonomie bei medizinethischen Entscheidungen am Lebensende.

Respect of human dignity is an unquestionable part of daily clinical routine as well as of evaluations in medical ethics. Some aspects of human dignity are a subject of transformation in the course of a lifetime. If the ability to form a will is reduced, it might be difficult to satisfy the individual perception of a dignified treatment, which is of particular interest in terminal care. As illustrated by the presented case report, moral problems can arise when the patient's present verbal or non-verbal expressions are opposed to what is documented or what is estimated by dependants to be the individual's will. In clinical decision-making processes, the determination of the will via an advance directive can be overstated, which can go so far that human dignity is reduced to autonomy. A concept of dignity reduced to autonomy misses the point not only of a dignity-centered medical care but also of shared decision-making. In situations at the end of life other aspects, such as authenticity or self-actualization should be considered when respecting the individual's dignity. Medicine should as such not marginalize death but provide a care based on principles that focus on human interaction and respect for a comprehensive concept of dignity.

Prevalence of long-term decision regret and associated risk factors in a large cohort of ICU surrogate decision makers.

BACKGROUND: Whether surrogate decision makers regret decisions about the use of life support for incapacitated, critically ill patients remain uncertain. We sought to determine the prevalence of decision regret among surrogates of adult ICU patients and identify factors that influence regret. METHODS: We conducted a secondary analysis of data from the PARTNER 2 trial, which tested a family support intervention for surrogates of critically ill adults. At 6-month follow-up, surrogates rated their regret about life support decisions using the Decision Regret Scale (DRS), scored from 0 to 100, with higher scores indicating more regret. We used multiple linear regression to identify covariates associated with decision regret based on a psychological construct of regret. We constructed two models using the full cohort; model 1 included patient outcomes; model 2 focused on covariates known at the time of ICU decision-making. Subgroup analyses were also conducted based on patient survival status at hospital discharge and 6-month follow-up. RESULTS: 748 of 848 surrogates had complete DRS data. The median (IQR) DRS score was 15 (0, 25). Overall, 54% reported mild regret (DRS 5-25), 19% moderate-strong regret (DRS 30-100), and 27% no regret (DRS 0). Poor patient outcome at 6 months (death or severe functional dependence) was associated with more regret in model 1 (ß 10.1; 95% C.I. 3.2, 17.0). In model 2, palliative care consultation (3.0; 0.1, 5.9), limitations in life support (LS) prior to death (6.3; 3.1, 9.4) and surrogate black race (6.3; 0.3, 12.3) were associated with more regret. Other modulators of regret in subgroup analyses included surrogate age and education level, surrogate-patient relationship, death in hospital (compared to the post-discharge period), and code status at time of ICU admission. CONCLUSIONS: One in five ICU surrogate decision makers experience moderate to strong regret about life support decisions in ICU. Poor patient outcomes are linked to more regret. Decisions to limit life support prior to patient death may also increase regret. Future studies are needed to understand how regret relates to decision quality and how to lessen lasting regret.

Experiences of caregiving with Alzheimer's disease in the LGBT community.

BACKGROUND: The goal of this paper is to develop a more thorough understanding of the experiences of LGBT older adults living with dementia and their caregivers. METHODS: A phenomenological approach using in-depth interviews with current or former caregivers of LGBT persons living with Alzheimer's disease (AD) was conducted. RESULTS: Participants ranged in age from 44-77 years old; 74% were lesbian, 16% gay, 5% straight, and 5% unknown. Five themes were identified from the analysis: Caregiver tension and isolation; financial stress & security; lack of social support & connection; engineering grief support, and entrapment of past and present stigma and discrimination. CONCLUSIONS: Discrimination related to LGBT status was an important theme over the participants' lives and occurred for several during dementia care. While other themes were similar to prior AD studies, LGBT status affected these other aspects of the caregiving experience. Findings can inform future programs that better meet needs of LGBT people and those who care for them.

Family surrogate decision-makers' perspectives in decision-making of patients with disorders of consciousness.

To explore and describe the experience of decision-making for patients with disorders of consciousness (DOC) from the perspectives of family surrogate decision-makers. A total of 21 face-to-face interviews with family surrogate decision-makers from a tertiary hospital in Shanghai, China were conducted from January 2021 to February 2021. Thematic analysis was used for data analysis. Four main themes were identified and were included in this study: (1) a tough choice between life and dignity, (2) a major responsibility for patient's voice, (3) complex considerations between ethics and morals, and (4) the importance of realistic basis. The surrogate decision-making of DOC patients in China has been affected by the Chinese cultural context and several practical roots. And the family surrogate decision-makers shared their experiences of trade-offs during the decision-making process. Moreover, family surrogate decision-makers realized their serious responsibility to make a decision that would be in the best interest of DOC patients.

A Survey of Emergency Nurses' Perceptions and Practices to Support Patients' Families as Surrogate Decision Makers.

INTRODUCTION: Family members acting as surrogate decision makers for severely ill patients in emergency and critical care centers face psychological burdens. This study aimed to investigate the actual situation of emergency nurses' perceptions and practices to support patients' families and its structural elements. METHODS: We created an original 25-item questionnaire and surveyed 164 emergency nurses from 64 emergency and critical care centers regarding their perceptions of caring for people making surrogate decisions. Participants averaged 35.6 years old and 5.1 years as emergency nurses. RESULTS: Cronbach's α coefficients for importance and practice on the original questionnaire were 0.936 and 0.933, respectively. We identified 4 elements of necessary support for patient families making surrogate decisions according to emergency nurses: "collaboration in understanding the condition of the patient as well as empathetic support," "care that addresses the needs of patient's family members," "confirming the role of nurses and surrogate decision making," and "participation in meeting with a doctor and patient families." In addition, we identified 5 elements that indicate the current state of practice: "support from specialists such as nurses and other professionals," "compassionate care for family members and those who are providing support to family members," "empathetic support for family members," "support for making arrangements that address the needs of family members," and "considerations for family members." DISCUSSION: According to the findings of this study, emergency nurses should coordinate with other professionals and talk with family members and physicians to increase their understanding of the need to assist in surrogate decision making. In addition, emergency nurses also need to explain to patients' relatives how to support them in surrogate decision making.

Medical-Legal Partnerships and Prevention: Caring for Unrepresented Patients Through Early Identification and Intervention.

Caring for unrepresented patients encompasses legal, ethical, and moral challenges regarding decision-making, consent, the patient's values, wishes, best interest, and the healthcare team's professional integrity and autonomy. In this article, I consider the impact of the aging population and the effects of the social determinants of health and suggest that without preventive intervention, the number of unrepresented patients will continue to increase. The health, social, and legal risk factors for becoming unrepresented require a multidisciplinary response. Medical-Legal Partnerships (MLPs) bring healthcare and legal professionals together to address risk factors and health-harming legal needs. The article discusses the role of MLPs in identifying at-risk individuals, providing preventive interventions, and providing support. I make recommendations and conclude that proactive MLPs offer a sustainable approach to the ethical challenges in caring for unrepresented patients by providing interventions to prevent individuals from becoming unrepresented.

Longitudinal Changes in Neuropsychiatric Symptoms: Impact of Discrepancy in Everyday Preferences Between Persons With Cognitive Impairment and Their Care Partners.

OBJECTIVES: Neuropsychiatric symptoms (NPS) of dementia are common and may be driven by inability of persons with cognitive impairment (CI) to communicate needs. We addressed the relevance of this unmet-needs model to burden of NPS among persons with milder CI. METHODS: The sample included 48 dyads of persons with CI and their care partners. NPS were measured at baseline and follow-up (mean 486 days +/-107 SD). Mixed random and fixed effects longitudinal models were used to evaluate impact of discrepancies between persons with CI and their care partners in everyday preferences (baseline) on changes in NPS over time. RESULTS: Higher levels of underestimation of "social engagement" preferences of persons with CI by care partners were associated with a higher average burden of NPS across all follow-up. CONCLUSIONS: This study suggests that unmet-needs may be a useful construct for understanding etiology for NPS across the spectrum of severity of cognitive impairment.

Self-other differences in intertemporal decision making: An eye-tracking investigation.

This study investigated how intertemporal choices made for others differed from those made for oneself, and how attention directed to specific attributes of the choice problem contributed to such differences. Moderating effects of components of trait empathy, chronic construal-level, and personal sense of power were examined. Thirty-five participants performed a money choice task where they made choices for themselves and on behalf of an acquaintance, during which their eye movements were tracked. Results showed that lower scores on the fantasy component of empathy predicted decreased delay discounting while making decisions for others, while higher empathic concern favoured less impulsive choices for both self and others. Higher sense of power favoured less impulsive choices for both self and others. While making decisions for others, higher power biased more attention towards the reward attribute of the choice, which in turn predicted less delay discounting. Results are discussed from a construal-level perspective.

Three Kinds of Decision-Making Capacity for Refusing Medical Interventions.

According to a standard account of patient decision-making capacity (DMC), patients can provide ethically valid consent or refusal only if they are able to understand and appreciate their medical condition and can comparatively evaluate all offered treatment options. We argue instead that some patient refusals can be capacitated, and therefore ethically authoritative, without meeting the strict criteria of this standard account-what we call comparative DMC. We describe how patients may possess burdens-based DMC for refusal if they have an overriding objection to at least one burden associated with each treatment option or goals-based DMC for refusal if they have an overriding goal that is inconsistent with treatment. The overridingness of a patient's objections to burdens, or of their commitment to a goal, can justify the moral authority of their refusal, even when a patient lacks some of the cognitive capacities that standard accounts of DMC involve.

Decision-making regarding oral nutritional supplements for nursing home residents with advanced dementia: A cross-sectional pilot study.

BACKGROUND: Surrogate decision-making regarding oral nutritional supplements (ONS) for nursing home residents with advanced dementia is a complex process. In this cross-sectional study, we assessed whether Dutch dietitians, elderly care physicians (physicians) and surrogate decision-makers (SDMs) differ in the factors that they regard important when considering ONS. We also investigated differences in opinion regarding whether or not ONS is a life-prolonging measure. METHODS: Through an online survey, 90 dietitians, 53 physicians and 70 SDMs of nursing home residents (all aged ≥ 65 years old with advanced dementia) rated the level of perceived influence of 11 pre-defined factors on their decision-making, ranked factors in order of importance and stated whether they considered ONS a life-prolonging measure or not. By statistical analysis, we tested differences in the mean sum of ranks for perceived influence differing between groups. We also tested differences in proportions between groups of those who considered ONS a life-prolonging measure. RESULTS: Rating of perceived influence significantly differed for six factors. Quality of life was ranked as the most influential factor by all groups. Dietitians significantly differed in their opinion on the life-prolonging effect of ONS from physicians (odds ratio = 0.29, 95% confidence interval = 0.13-0.65), as well as from SDMs (odds ratio = 0.22, 95% confidence interval = 0.10-0.45). CONCLUSIONS: Although all groups proclaimed quality of life to be first priority in decision-making, we found that Dutch dietitians, physicians and SDMs differed in what they regarded important when considering ONS for nursing home residents with advanced dementia. Regarding the life-prolonging effect of ONS, dietitians differed in opinion from physicians, as well as from SDMs.

A Mixed Judgment Standard for Surrogate Decision-Making.

The Substituted Judgment Standard (SJS) for surrogate decision-making dictates that a surrogate, when making medical decisions on behalf of an incapacitated patient, ought to make the decision that the patient would have made if the patient had decisional capacity. Despite its intuitive appeal, however, SJS has been the target of a variety of criticisms. Most objections to SJS appeal to epistemic difficulties involved in determining what a patient would have decided in a given case. In this article, I offer an alternative standard for surrogate decision-making that avoids these difficulties. I then offer an account of its theoretical underpinnings which shows that it preserves the central moral justification for SJS, namely, respect for patient autonomy.

Development and preliminary evaluation of EMPOWER for surrogate decision-makers of critically ill patients.

OBJECTIVE: The objectives of this study were to develop and refine EMPOWER (Enhancing and Mobilizing the POtential for Wellness and Resilience), a brief manualized cognitive-behavioral, acceptance-based intervention for surrogate decision-makers of critically ill patients and to evaluate its preliminary feasibility, acceptability, and promise in improving surrogates' mental health and patient outcomes. METHOD: Part 1 involved obtaining qualitative stakeholder feedback from 5 bereaved surrogates and 10 critical care and mental health clinicians. Stakeholders were provided with the manual and prompted for feedback on its content, format, and language. Feedback was organized and incorporated into the manual, which was then re-circulated until consensus. In Part 2, surrogates of critically ill patients admitted to an intensive care unit (ICU) reporting moderate anxiety or close attachment were enrolled in an open trial of EMPOWER. Surrogates completed six, 15-20 min modules, totaling 1.5-2 h. Surrogates were administered measures of peritraumatic distress, experiential avoidance, prolonged grief, distress tolerance, anxiety, and depression at pre-intervention, post-intervention, and at 1-month and 3-month follow-up assessments. RESULTS: Part 1 resulted in changes to the EMPOWER manual, including reducing jargon, improving navigability, making EMPOWER applicable for a range of illness scenarios, rearranging the modules, and adding further instructions and psychoeducation. Part 2 findings suggested that EMPOWER is feasible, with 100% of participants completing all modules. The acceptability of EMPOWER appeared strong, with high ratings of effectiveness and helpfulness (M = 8/10). Results showed immediate post-intervention improvements in anxiety (d = -0.41), peritraumatic distress (d = -0.24), and experiential avoidance (d = -0.23). At the 3-month follow-up assessments, surrogates exhibited improvements in prolonged grief symptoms (d = -0.94), depression (d = -0.23), anxiety (d = -0.29), and experiential avoidance (d = -0.30). SIGNIFICANCE OF RESULTS: Preliminary data suggest that EMPOWER is feasible, acceptable, and associated with notable improvements in psychological symptoms among surrogates. Future research should examine EMPOWER with a larger sample in a randomized controlled trial.

Mechanisms of defense in clinical ethics consultation.

Clinical ethics consultants respond to a multitude of issues, ranging from the cognitive to the emotional. As such, ethics consultants must be prepared to analyze as well as empathize. And yet, there remains a paucity of research and training on the interpersonal and emotional aspects of clinical ethics consultations-the so-called skills in "advanced ethics facilitation." This article is a contribution to the need for further understanding and practical knowledge in the emotional aspects of ethics consultation. In particular, I draw attention to defense mechanisms: what they are, why they exist, and how we might work with them in the setting of ethics consultation.

Ethical Challenges in Pediatric Oncology Care and Clinical Trials.

The care of pediatric cancer patients is a vast departure from cancer care of adults. While the available treatment modalities-chemotherapy, radiation, and surgery-are the same, the diseases, care-delivery, and outcomes differ greatly. And just as 'children are not just little adults,' pediatric bioethics occupies a distinct place within the broader field of bioethics. In this chapter, we will begin with an introduction to fundamental principles and frameworks for understanding ethical issues in pediatrics, highlighting the triadic nature of medical decision-making between a physician, the child-patient, and the child's parent as the surrogate decision-maker. We will then delve into further details of how these principles and frameworks shape the care of children with cancer, examining specific ethical challenges commonly encountered by pediatric oncologists. We will traverse this landscape by examining issues involving (a) informed consent; (b) research involving children; (c) end of life; (d) genetic and genomic testing; and (e) professionalism. We also examine ethical challenges in clinical research, in children and more broadly. While not an exhaustive exploration of the myriad ethical issues one might encounter in pediatric cancer medicine and clinical trials, this chapter provides readers with a foundation for further reading.

Cross-sectional survey of surrogate decision-making in Japanese medical practice.

BACKGROUND: Instances of surrogate decision-making are expected to increase with the rise in hospitalised older adults in Japan. Few large-scale studies have comprehensively examined the entire surrogate decision-making process. This study aimed to gather information to assess the current state of surrogate decision-making in Japan. METHODS: A cross-sectional survey was conducted using online questionnaires. A total of 1000 surrogate decision-makers responded to the questionnaire. We examined the characteristics of surrogate decision-makers and patients, content of surrogate decision-making meeting regarding life-sustaining treatment between the doctors and surrogate decision-makers, extent of involvement of the various parties in the surrogate decision-making process, judgement grounds for surrogate decision-making, and frequency of involvement in the surrogate decision-making process. RESULTS: Of the participants, 70.5% were male and 48.3% were eldest sons. Only 7.6% of the patients had left a written record of their preferences and 48.8% of the surrogates reported no knowledge of the patient having expressed their prior intentions regarding medical care in any form. Respondents indicated that their family meetings with healthcare professionals mostly included the information recommended by guidelines in a surrogate decision-making meeting in Japan. Most participants reported a good understanding of the meeting content. Although many participants based their decisions on multiple grounds, surrogates' considerations may not adequately reflect respect for patient autonomy in Japan. Specifically, the eldest son considered his own preference more frequently than that of the other surrogate decision-makers. In 26.1% of the cases, either zero or one family meeting with healthcare professionals was held. In these cases, significantly fewer decisions involved the participation of healthcare professionals other than the doctor compared to cases with multiple meetings. CONCLUSIONS: Surrogate decisions in Japan are most commonly made by eldest sons and may not frequently consider the perspectives of other surrogates. The finding that patient preferences were rarely known suggests a role for increased advance care planning.

Making a family decision to donate the brain for genomic research: lessons from the genotype-tissue expression project (GTEx).

This study sheds light on the attitudes and circumstances that influence decisions by families to donate the brain of a deceased family member for research. This study, a part of the Genotype-Tissue Expression (GTEx) project, interviewed families of patients who had authorized organ and/or tissue donation for transplantation. A total of 384 family decision makers (FDMs) who decided to donate organs and/or tissues for transplantation were also asked to donate to GTEx. Of these, 297 families were asked to donate their loved one's whole brain and 87 families responded to a hypothetical request for brain donation. The decision to donate the brain to GTEx, actually or hypothetically, was the major outcome measure. The majority of the FDMs would choose to donate the brain, 78%. Unwillingness to donate the brain was associated with four attitudes: (1) the FDM unwillingness to donate their own tissues for research (OR 1.91, 95% CI .67 to 2.96; p = .05), (2) concern with potential for-profit use of tissues (OR 2.12, 95% CI 1.2 to 3.7; p = .008), (3) reported squeamishness about tissue donation (OR 1.34, 95% CI 1.1 to 1.7; p = .006), and (4) belief that FDMs should have a say in how the donated tissues are used (OR 1.36, 95% CI 1.13 to 1.5; p = .01). Organ and tissue donors may present a plenteous source of brains for research. Family concerns about tissue use and collection should be addressed by requesters.