Surrogate Decision Research Articles

Multidimensional Sleep Health in Surrogate Decision-Makers of Critically Ill Patients.

Supporting the sleep health of surrogate decision-makers of patients in the intensive care unit is a research priority. However, few studies have approached sleep health as a multidimensional construct, instead focusing on 1 or 2 dimensions in isolation. To holistically examine the sleep health (satisfaction, timing, efficiency, duration) of surrogate decision-makers of critically ill patients. This secondary analysis involved surrogate decision-makers of incapacitated intensive care unit patients at a tertiary medical center in northeastern Ohio (n = 19). Sleep-health data were captured by means of a subjective scale (satisfaction) and objectively (timing, efficiency, duration) by means of a wrist-worn accelerometer (Actiwatch Spectrum Plus; Philips Respironics). Upon enrollment, participants completed the satisfaction scale and wore the Actiwatch Spectrum Plus for 3 consecutive days. Descriptive statistics of the study variables were evaluated. A minority (15%) of the sample reported poor sleep satisfaction. Sleep timing variables were comparable to those found in other adult studies. Participants averaged approximately 6 hours of sleep per day with an average sleep efficiency of 83.7%. Despite adequate satisfaction scores, intensive care unit surrogate decision-makers' sleep duration is inadequate and sleep efficiency is suboptimal. Sleep-health interventions may be needed in this at-risk population. Future research should consider the impact of surrogate decision-maker sleep health on their capacity to serve in the surrogate decision-maker role.

A Survey of Surrogates and Health Care Professionals Indicates Support of Cognitive Motor Dissociation-Assisted Prognostication.

Prognostication of patients with acute disorders of consciousness is imprecise but more accurate technology-supported predictions, such as cognitive motor dissociation (CMD), are emerging. CMD refers to the detection of willful brain activation following motor commands using functional magnetic resonance imaging or machine learning-supported analysis of the electroencephalogram in clinically unresponsive patients. CMD is associated with long-term recovery, but acceptance by surrogates and health care professionals is uncertain. The objective of this study was to determine receptiveness for CMD to inform goals of care (GoC) decisions and research participation among health care professionals and surrogates of behaviorally unresponsive patients. This was a two-center study of surrogates of and health care professionals caring for unconscious patients with severe neurological injury who were enrolled in two prospective US-based studies. Participants completed a 13-item survey to assess demographics, religiosity, minimal acceptable level of recovery, enthusiasm for research participation, and receptiveness for CMD to support GoC decisions. Completed surveys were obtained from 196 participants (133 health care professionals and 63 surrogates). Across all respondents, 93% indicated that they would want their loved one or the patient they cared for to participate in a research study that supports recovery of consciousness if CMD were detected, compared to 58% if CMD were not detected. Health care professionals were more likely than surrogates to change GoC with a positive (78% vs. 59%, p = 0.005) or negative (83% vs. 59%, p = 0.0002) CMD result. Participants who reported religion was the most important part of their life were least likely to change GoC with or without CMD. Participants who identified as Black (odds ratio [OR] 0.12, 95% confidence interval [CI] 0.04-0.36) or Hispanic/Latino (OR 0.39, 95% CI 0.2-0.75) and those for whom religion was the most important part of their life (OR 0.18, 95% CI 0.05-0.64) were more likely to accept a lower minimum level of recovery. Technology-supported prognostication and enthusiasm for clinical trial participation was supported across a diverse spectrum of health care professionals and surrogate decision-makers. Education for surrogates and health care professionals should accompany integration of technology-supported prognostication.

The Ethical Standard for End-of-Life Decisions for Unrepresented Patients

There has been increasing awareness of the medical and moral challenges in the care of unrepresented patients: those who cannot make their own medical decisions, do not have any surrogate decision maker, and have not indicated their treatment preferences. Most discussions have focused on procedural questions such as who should make decisions for these patients. An issue that has not gotten enough attention is the ethical standard that should govern medical decision making. I explore the question of which ethical standard provides better justification for end-of-life decisions for unrepresented patients. Two options are considered: the conventional and less demanding best interest standard, and the novel and more demanding medical futility standard. I explain the similarities and differences between these two standards, examine arguments for and against each one, and suggest that the medical futility standard is ethically superior and should replace the established best interest standard.

The experience of surrogate decision-making and deciphering critically ill patient values: A qualitative study.

Surrogate decision-makers (SDMs) who make decisions for critically ill patients often face great challenges. Although shared decision-making has been advocated, its implementation has been less than satisfactory. To explore the experience of the surrogate decision-making process and determine how SDMs understand the values and preferences of critically ill patients. A constructivist qualitative study was used. The data were collected using semistructured interviews with four questions conducted between January and February 2023. The audio recordings were transcribed verbatim and analysed via thematic analysis. Fourteen SDMs (all family members) of 10 critically ill patients were recruited according to the inclusion criteria. We identified eight sub-themes that were classified into three themes: (a) the unbalanced act: no respite for the surrogates, conflict between rationality and emotion, and sacrifice in surrogate decision-making; (b) unclear values and preferences: ignored values, intentional silence and substituted values; and (c) unsatisfying surrogate decisions: decision regret and decreased surrogate decision-making self-efficacy. These findings underscore the urgent need for enhanced communication strategies and support systems to better assist SDMs in navigating their roles. Effective interventions could help clarify patients' values and preferences, thereby improving the decision-making process and outcomes for both SDMs and patients. Misalignment between patient values and those of SDMs can potentially degrade the quality of decision-making. Clinicians should be skilled in stimulating SDMs to think about patient values and preferences.

Delayed Withdrawal of Life-Sustaining Treatment in Disorders of Consciousness: Practical and Theoretical Considerations.

Disorders of consciousness (DoC) resulting from severe acute brain injuries may prompt clinicians and surrogate decision makers to consider withdrawal of life-sustaining treatment (WLST) if the neurologic prognosis is poor. Recent guidelines suggest, however, that clinicians should avoid definitively concluding a poor prognosis prior to 28days post injury, as patients may demonstrate neurologic recovery outside the acute time period. This practice may increase the frequency with which clinicians consider the option of delayed WLST (D-WLST), namely, WLST that would occur after hospital discharge, if the patient's recovery trajectory ultimately proves inconsistent with an acceptable quality of life. However acute care clinicians are often uncertain about what D-WLST entails and therefore find it difficult to properly counsel surrogates about this option. Here, we describe practical and theoretical considerations relevant to D-WLST. We first identify post-acute-care facilities to which patients with DoC are likely to be discharged and where D-WLST may be considered. Second, we describe how clinicians and surrogates may determine the appropriate timing of D-WLST. Third, we outline how D-WLST is practically implemented. And finally, we discuss psychosocial barriers to D-WLST, including the regret paradox, in which surrogates of patients who do not recover to meet preestablished goals frequently choose not to ultimately pursue D-WLST. Together, these practical, logistic, and psychosocial factors must be considered when potentially deferring WLST to the post-acute-care setting to optimize neurologic recovery for patients, avoid prolonged undue suffering, and promote informed and shared decision-making between clinicians and surrogates.

Advance Care Planning of Patients Undergoing High-Risk Surgery: A Concept Analysis

The aim of this research was to clarify the concept of advance care planning (ACP) for patients undergoing high-risk surgery. The Walker & Avant’s approach to concept analysis was used. ACP for the patient who received a high-risk surgery was defined as follows: patients who are aware of the risks of surgery are initiated voluntarily with the need to participate in anticipatory decision-making. To do this, patients define their life-prolonging treatment, provided that appropriate treatment is guaranteed, and prepare for end-of-life care decisions through discussions involving healthcare providers and surrogate decision-makers. It is a continuous, patient-centered decision that allows the patient’s treatment goals to transition over time. The goal of the ACP is to focus on quality of life and care rather than determining end-of-life care. The development of this concept contributes to an assessment of the value of ACP support, which can lead to improved approaches to help patients recover in a short period.

Decoding decision delegation to artificial intelligence: A mixed-methods study on the preferences of decision-makers and decision-affected in surrogate decision contexts

Organizations are increasingly opting to use decision-making systems based on artificial intelligence (AI) to increase decision quality and speed and free up resources. However, delegating decisions to AI is challenging, especially in contexts that go beyond classical optimization problems. Current research has so far largely neglected to include the viewpoints of the decision-affected and of surrogate decision-makers in the discussion. To address these gaps, in this study we rely on two experimental designs and complement our findings with qualitative interview data to shed light on both sides: the perspective of those affected by the decision and that of the decision maker in surrogate and ethically complex decision contexts. Findings reveal that the individual decision-making perspective may lead to opposing perceptions. Whereas the willingness to delegate an ethically challenging decision to AI in a surrogate decision context is lower than that in a non-surrogate context (decision-maker perspective), people affected by the decision do not generally prefer humans to AI (decision-affected perspective). By these findings, we contribute to the literature on AI-enabled decision-making and decision delegation to non-human entities.

The mediating effects of parental hope and psychological resilience on social support and decision conflict in children with hypospadias

IntroductionThe most common congenital genital abnormality of the urinary system in infants is hypospadias; its frequency is rising to 0.33 percent globally. Surgical reconstruction is the most effective treatment for hypospadias. Parents, as surrogate decision-makers for children, frequently experience decision-making conflicts when making decisions. Stress is neither a straightforward stimulus nor a simple response. However, a stressor (stimulus) caused by life events and influenced by numerous intermediate factors including personality, social support, and psychosomatic symptoms or diseases is a multi-factor process of stress response (response) . The surgical decision conflict of parents of children with hypospadias is a type of stress response, and social support may have an effect on parents' hope, psychological resilience, and decision conflict, with hope and psychological resilience serving as mediators between social support and decision conflict. AimTo investigate the structural relationship between parental social support, hope, psychological resilience, and parents decision conflict in children with hypospadias. Study DesignA cross-sectional design was used to collect the data of 210 parents of children with hypospadias from Department of Urology, Shenzhen Children's Hospital from April 2022 to March 2023. ResultsSocial support indirectly affects decision conflict through hope and psychological resilience, with a total effect of -0.224 (P<0.05), DiscussionDecision conflicts and regret can be reduced if medical professionals provide adequate and clear information, decision assistance, and meet support requirements during the decision-making process. Improving the level of psychological resilience, hope, and social support among parents of children with hypospadias is a crucial strategy for reducing the level of decision conflict they experience. In the process of making surgical decisions for children with hypospadias, the more sufficient social support from relatives, friends, and medical staff can stimulate their hope, boost their belief in the success of surgery, and the greater their psychological resilience, the more effectively decision conflict can be reduced. Some potential limitations of this study should be considered. Firstly, this study was a cross-sectional survey design. It may have some limitations in providing causal relationships between selected variables. Second, the survey investigated only one hospital, which reduces the generalizability of the findings. ConclusionThe data support the proposed model and confirm the structural relationship among the four study variables. This study provides new information on the mediating role of hope and psychological resilience between social support and decision-making conflict.

Navigating the Ethical Challenges of Clinical Decision-Making for Patients with Mental Illness Presenting with Self-Inflicted Burns

Abstract Complex ethical considerations can arise when patients with severe, persistent mental illness (SPMI) present with critical illness resulting from self-injury. This article presents two clinical cases in which a patient with SPMI was admitted with severe injuries following self-inflicted burns, with substantial impact on their anticipated quality of life and challenges directing their medical care. In both cases, the medical teams held discussions with surrogate decision-makers in order to evaluate the patient's minimal acceptable quality of life and make medical decisions that best reflected the patient's voice and goals. These cases underscore the importance of advance care planning in SPMI, particularly the appointment of a surrogate decision-maker, and highlight the moral distress that can arise among surgical teams and trainees while caring for patients with illness resulting from self-harm. This article offers a framework for approaching decision-making in critical illness resulting from self-harm for patients with SPMI.

Autonomous by Extension: Balancing Patient Autonomy and Vulnerability in Surrogate Decision-making.

The experience of serious illness or injury frequently results in increased vulnerability. In cases in which decision-making capacity is compromised, this vulnerability is compounded by threats to a patient's autonomy. This case report presents an opportunity to explore the elaborately entwined relationship between autonomy and vulnerability in patients with severe impairment who are reliant on surrogate decision-makers. Expanded views of autonomy and vulnerability are applied to the case of a young woman with a severe and life-altering spinal cord injury and iatrogenic loss of decisional capacity to illustrate how one can experience enhanced autonomy despite special vulnerability and can be made less vulnerable through surrogate-mediated autonomy. Also revealed is how attitudes and actions of surrogates can potentiate pathogenic vulnerability and disturb the balance between patient autonomy and vulnerability. Through methodical review and robust deliberation, clinical ethics committees can play a stabilizing role in helping distressed care teams reconcile the two.

Hidden Fault Lines in the Bedrock: A Critical Examination of Surrogate Decision-Making Standards in Ethics Consultation.

AbstractClinical ethicists are routinely consulted in cases that involve conflicts and uncertainties related to surrogate decision-making for incapacitated patients. To navigate these cases, we invoke a canonical ethical-legal hierarchy of decision-making standards: the patient's known wishes, substituted judgment, and best interest. Despite the routine application of this hierarchy, however, critical scholarly literature alleges that these standards fail to capture patients' preferences and surrogates' behaviors. Moreover, the extent to which these critiques are incorporated into consultant practices is unclear. In this article I thus explore whether, and how, existing critiques of the hierarchy affect the application of these standards during ethics consults. After discussing four critiques of the hierarchy, I examine how two prominent published ethics consultation methodologies-bioethics mediation and CASES-incorporate these critiques differently. I then argue that while both methodologies explicitly endorse the same hierarchy, the varying degrees to which these four criticisms are incorporated into the prescribed consultation process could produce different applications of the same standard. I demonstrate with a case study how an ethics consultant following either methodology might produce two substantively different recommendations despite using the same substituted judgment standard. I conclude that while this heterogeneity of application should not dismantle the hierarchy's status as field-wide canon, it complicates projects of professional ethics consultation consensus building.

Validating older adult patient's Medical Treatment Decision Maker's (MTDM). A retrospective observational study with follow-up phone interview transcript

A Medical Treatment Decision Maker (MTDM), also referred to as surrogate decision maker, by law, is to be appointed to make medical treatment decisions on behalf of a person who cannot make such decisions for themselves. In the Emergency Department (ED) and acute healthcare services, the clinicians’ (nurses and doctors) ability to contact MTDMs is essential for patient care, particularly in time-critical situations. Our primary objective was to review the verification process and assess the accuracy of MTDM contact numbers in the Health Information System (HIS) to assess compliance with legislation. We used a quantitative method with retrospective observational study design and follow-up phone interview transcript. One hundred and fifty-nine participants were randomly selected of whom 76 % had MTDM. Patient advancing age had statistically significant association with the number of call attempts made to reach the listed MTDM (P = 0.043; CI, -3.541 to -0.057) and the MTDM's consent to participate (p = 0.023).

Incorporating Patient Values in Large Language Model Recommendations for Surrogate and Proxy Decisions.

Surrogates, proxies, and clinicians making shared treatment decisions for patients who have lost decision-making capacity often fail to honor patients' wishes, due to stress, time pressures, misunderstanding patient values, and projecting personal biases. Advance directives intend to align care with patient values but are limited by low completion rates and application to only a subset of medical decisions. Here, we investigate the potential of large language models (LLMs) to incorporate patient values in supporting critical care clinical decision-making for incapacitated patients in a proof-of-concept study. We simulated text-based scenarios for 50 decisionally incapacitated patients for whom a medical condition required imminent clinical decisions regarding specific interventions. For each patient, we also simulated five unique value profiles captured using alternative formats: numeric ranking questionnaires, text-based questionnaires, and free-text narratives. We used pre-trained generative LLMs for two tasks: 1) text extraction of the treatments under consideration and 2) prompt-based question-answering to generate a recommendation in response to the scenario information, extracted treatment, and patient value profiles. Model outputs were compared with adjudications by three domain experts who independently evaluated each scenario and decision. Automated extractions of the treatment in question were accurate for 88% (n = 44/50) of scenarios. LLM treatment recommendations received an average Likert score by the adjudicators of 3.92 of 5.00 (five being best) across all patients for being medically plausible and reasonable treatment recommendations, and 3.58 of 5.00 for reflecting the documented values of the patient. Scores were highest when patient values were captured as short, unstructured, and free-text narratives based on simulated patient profiles. This proof-of-concept study demonstrates the potential for LLMs to function as support tools for surrogates, proxies, and clinicians aiming to honor the wishes and values of decisionally incapacitated patients.

Gender Differences Regarding Palliative Care Consultation Among Persons Hospitalized With Heart Failure

ContextPalliative care is increasingly recognized as an important aspect of heart failure (HF) management, but data on gender differences regarding palliative care needs are scarce. ObjectiveWe retrospectively studied patients hospitalized with a primary diagnosis of HF who received an initial palliative care consultation in the Mount Sinai Health System to examine gender differences. MethodsFrom electronic health records, we extracted patient information, diagnostic codes, and the palliative care consult assessment which included the Karnofsky performance status (KPS) and the Edmonton symptom assessment scale (ESAS). The population was stratified according to self-identified gender. Unadjusted and adjusted generalized linear models were fitted to study the association of gender with KPS and ESAS scores. ResultsAmong 667 patients with HF who received a palliative care consultation, 327 (49.0%) were women. Women with HF were older than men and less likely to be married. As compared to men, women had worse functional status, were less likely to have capacity to designate a surrogate medical decision-maker, had a higher symptom burden and were more likely to experience severe symptoms at the time of initial palliative care consultation. Differences in functional status and symptom burden were particularly pronounced in young women and women identifying as Black or Hispanic. The association of gender with functional status and symptom burden remained statistically significant after adjusting for possible confounders. ConclusionAs compared to men, women with HF were more severely impaired at the time of palliative care consult, and dedicated efforts to better address their needs are warranted.

Identifying Decisional Needs for Adult Tracheostomy and Prolonged Mechanical Ventilation Decision Making to Inform Shared Decision-Making Interventions.

Decision making for adult tracheostomy and prolonged mechanical ventilation is emotionally complex. Expectations of surrogate decision makers and physicians rarely align. Little is known about what surrogates need to make goal-concordant decisions. Currently, little is known about the decisional needs of surrogates and providers, impeding efforts to improve the decision-making process. Using a thematic analysis approach, we performed a qualitative study with semistructured interviews with surrogates of adult patients receiving mechanical ventilation (MV) being considered for tracheostomy and physicians routinely caring for patients receiving MV. Recruitment was stopped when thematic saturation was reached. We describe the decision-making process, identify core decisional needs, and map the process and needs for possible elements of a future shared decision-making tool. Forty-three participants (23 surrogates and 20 physicians) completed interviews. Hope, Lack of Knowledge Data, and Uncertainty emerged as the 3 main themes that described the decision-making process and were interconnected with one another and, at times, opposed each other. Core decisional needs included information about patient wishes, past activity/medical history, short- and long-term outcomes, and meaningful recovery. The themes were the lens through which the decisional needs were weighed. Decision making existed as a balance between surrogate emotions and understanding and physician recommendations. Tracheostomy and prolonged MV decision making is complex. Hope and Uncertainty were conceptual themes that often battled with one another. Lack of Knowledge & Data plagued both surrogates and physicians. Multiple tangible factors were identified that affected surrogate decision making and physician recommendations. Understanding this complex decision-making process has the potential to improve the information provided to surrogates and, potentially, increase the goal-concordant care and alignment of surrogate and physician expectations. Decision making for tracheostomy and prolonged mechanical ventilation is a complex interactive process between surrogate decision makers and providers.Qualitative themes of Hope, Uncertainty, and Lack of Knowledge & Data shared by both providers and surrogates were identified and described the decision-making process.Concrete decisional needs of patient wishes, past activity/medical history, short- and long-term outcomes, and meaningful recovery affected each of the larger themes and represented key information from which surrogates and providers based decisions and recommendations.The qualitative themes and decisional needs identified provide a roadmap to design a shared decision-making intervention to improve adult tracheostomy and prolonged mechanical ventilation decision making.

Medical Decision Making in Correctional Facilities: Highlighting Gaps and Advocating for Policy Change.

In the United States, a disproportionately high number of incarcerated individuals suffer from serious mental illnesses, substance use disorders, chronic medical conditions, infectious diseases, and traumatic brain injuries. Correctional facilities are often ill-equipped to address the incarcerated community's physical and mental health needs. Current laws and policies remain outdated and do not adequately address the complex health issues faced by incarcerated individuals, particularly the aging and terminally ill patients in correctional settings. We present a case of a male with schizophrenia whose ongoing psychiatric symptoms impaired his decisional capacity, leading to him to refuse medical treatment for an initially treatable medical condition, ultimately resulting in his death due to the lack of a surrogate decision-maker. This case underscores the urgent need for policy revisions to assign medical decision-making authority for individuals in custody and highlights potential interventions to bridge existing gaps in care for this population.

‘It’s not making a decision, it’s prompting the discussions’: a qualitative study exploring stakeholders’ views on the acceptability and feasibility of advance research planning (CONSULT-ADVANCE)

BackgroundHealth and care research involving people who lack capacity to consent requires an alternative decision maker to decide whether they participate or not based on their ‘presumed will’. However, this is often unknown. Advance research planning (ARP) is a process for people who anticipate periods of impaired capacity to prospectively express their preferences about research participation and identify who they wish to be involved in future decisions. This may help to extend individuals’ autonomy by ensuring that proxy decisions are based on their actual wishes. This qualitative study aimed to explore stakeholders’ views about the acceptability and feasibility of ARP and identify barriers and facilitators to its implementation in the UK.MethodsWe conducted semi-structured interviews with 27 researchers, practitioners, and members of the public who had participated in a preceding survey. Interviews were conducted remotely between April and November 2023. Data were analysed thematically.ResultsParticipants were supportive of the concept of ARP, with differing amounts of support for the range of possible ARP activities depending on the context. Six main themes were identified: (1) Planting a seed – creating opportunities to initiate/engage with ARP; (2) A missing part of the puzzle – how preferences expressed through ARP could help inform decisions; (3) Finding the sweet spot – optimising the timing of ARP; (4) More than a piece of paper – finding the best mode for recording preferences; (5) Keeping the door open to future opportunities – minimising the risk of unintended consequences; and (6) Navigating with a compass – principles underpinning ARP to ensure safeguarding and help address inequalities. Participants also identified a number of implementation challenges, and proposed facilitative strategies that might overcome them which included embedding advance research planning in existing future planning processes and research-focused activities.ConclusionsThis study provides a routemap to implementing ARP in the UK to enable people anticipating impaired capacity to express their preferences about research, thus ensuring greater opportunities for inclusion of this under-served group, and addressing the decisional burden experienced by some family members acting as proxies. Development of interventions and guidance to support ARP is needed, with a focus on ensuring accessibility.

Artificial Intelligence as Surrogate Decision-Maker

Artificial Intelligence as Surrogate Decision-Maker

Effectiveness of initiating advance care planning among older outpatients through intervention by physicians trained in a model discussion video: A randomized controlled trial.

This study aimed to assess the impact of a physician-led intervention on advance care planning (ACP) introduction among older outpatients using a model discussion video. This prospective interventional study included Japanese general practice outpatients aged ≥65 years. All participants received an ACP leaflet. Co-researchers were trained using a model discussion video based on the "Serious Illness Conversation Guide," and provided ACP introduction explanations to the intervention group to ensure intervention content consistency. The control group received the ACP leaflet only, with no standardized explanations. The primary outcome was ACP discussion occurrence. Secondary outcomes included ACP engagement (assessed through the 4-item ACP Engagement Survey), engagement score for advance directives acquisition and score for surrogate decision-maker identification, and anxiety incidence (assessed through Generalized Anxiety Disorder-7). This study included 48 participants: 25 (52.1%) in the intervention group and 23 (47.9%) in the control group. Regarding primary outcome, the intervention group had significantly more ACP discussions compared with the control group (92.0% vs 26.1%, adjusted odds ratio 50.2, P = 0.0012). Regarding secondary outcomes, the intervention group showed greater readiness (mean scores for the 4-item Engagement Survey [P = 0.0001], engagement score for advance directives acquisition [P = 0.01] and score for surrogate decision-maker determination [P = 0.03]) than the control group, without increasing anxiety. This physician-led ACP introduction for older patients in a Japanese general practice setting enhanced ACP readiness and stimulated discussions, without increasing anxiety. The model discussion video for ACP introduction might effectively train physicians in general practice settings. Geriatr Gerontol Int 2024; ••: ••-••.

Can Artificial Intelligence Speak for Incapacitated Patients at the End of Life?

This Viewpoint examines how artificial intelligence could support surrogate decision-makers while addressing some of the attendant epistemic and moral challenges.