'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).

BACKGROUND: Health 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. METHODS: We 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. RESULTS: Participants 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. CONCLUSIONS: This 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.

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.

C-L Case Conference: Assessment of Dispositional Capacity in Medically Complex Patients.

We present the case of a 76-year-old male with mild cognitive impairment and delirium who was referred to consultation-liaison psychiatry for an assessment of capacity to choose discharge. Cases involving "dispositional capacity" are complex and increasingly frequent, with momentous consequences for patients and their families, but are rarely discussed in the literature. In this article, experts in functional assessment, cognition, and ethics provide guidance for this commonly encountered clinical scenario based on their experience and available literature. We review the content and formulation of occupational and physical therapy assessments and their utility to the consultation-liaison psychiatrist. We also examine the relationship of cognitive impairment to decisional capacity and offer suggestions on a structured approach to evaluation. Finally, we discuss the ethical and systemic considerations of dispositional capacity and explore potential pitfalls that can lead to interprofessional conflict and missed opportunities in patient care.

Assessment of Decision-Making Capacity in 97 Hospitalized Patients With Cancer: A Call for Standardization.

Hospitalized patients with cancer face pivotal decisions that will affect their cancer care trajectory and quality of life, but frequently lack decision making capacity (DMC). Standardization is conspicuously missing for inpatient oncology teams and for consultation-liaison psychiatrists performing DMC assessments for patients with cancer. This study sought to characterize a single institutional experience of psychiatric consultations to assess DMC. We conducted a retrospective chart review of 97 consecutive psychiatric consultations for DMC from 2017 to 2019. Demographic, hospital-based, and psychiatry consult differences were assessed based on the reasons for DMC evaluation (uncertainty, patient refusal, and emergency) and whether patients had decisional capacity. Out of 97 consultations, 56 (59%) hospitalized patients with cancer were unable to demonstrate capacity. Consultations came from medical services almost exclusively. Only 5% of primary teams documented their own DMC evaluation. Only 22% of DMC evaluation by consultation-liaison psychiatrists documented four determinates of DMC. Few commented on reversibility or tenuousness of DMC, and the identification of agents/surrogates; however, psychiatry consultants were more likely to follow up on patients without DMC. One-third of patients died in the hospital and two-thirds of patients were deceased 3 months after the consult. Given the substantial heterogeneity in the documentation of DMC evaluations in this retrospective chart review, we call for more rigor and standardization in documentation of DMC evaluations.

Legal and Ethics Considerations in Capacity Evaluation for Medical Aid in Dying.

Evaluating decisional capacity for patients seeking medical aid in dying (MAID) raises challenging legal, logistical, and ethics questions. The existing literature on the subject has been shaped largely by early disagreements over whether effective capacity assessment for such patients is ever possible, which in turn stemmed from debates over the ethics of MAID itself. In attempting to establish meaningful criteria for assessments, many jurisdictions have sought either to apply or to adapt models of capacity evaluation designed for other forms of medical decision-making, such as the widely used "four skills" model, failing to account for the fundamental differences in kind between these other decisions and MAID. This article seeks to reexamine these questions with a focus on two logistical matters (the appropriate credentialing for the evaluator and the potential liability of the evaluator) and three clinical matters (level of understanding, clinical scrutiny and certainty, and impairment) in an effort to raise legal and ethics concerns that remain unresolved, even as MAID is permitted in an increasing number of jurisdictions.