Impaired Decision-making Capacity Research Articles

Artificial intelligence and mental capacity legislation: Opening Pandora's modem

People with impaired decision-making capacity enjoy the same rights to access technology as people with full capacity. Our paper looks at realising this right in the specific contexts of artificial intelligence (AI) and mental capacity legislation. Ireland's Assisted Decision-Making (Capacity) Act, 2015 commenced in April 2023 and refers to ‘assistive technology’ within its ‘communication’ criterion for capacity. We explore the potential benefits and risks of AI in assisting communication under this legislation and seek to identify principles or lessons which might be applicable in other jurisdictions. We focus especially on Ireland's provisions for advance healthcare directives because previous research demonstrates that common barriers to advance care planning include (i) lack of knowledge and skills, (ii) fear of starting conversations about advance care planning, and (iii) lack of time. We hypothesise that these barriers might be overcome, at least in part, by using generative AI which is already freely available worldwide. Bodies such as the United Nations have produced guidance about ethical use of AI and these guide our analysis. One of the ethical risks in the current context is that AI would reach beyond communication and start to influence the content of decisions, especially among people with impaired decision-making capacity. For example, when we asked one AI model to ‘Make me an advance healthcare directive’, its initial response did not explicitly suggest content for the directive, but it did suggest topics that might be included, which could be seen as setting an agenda. One possibility for circumventing this and other shortcomings, such as concerns around accuracy of information, is to look to foundational models of AI. With their capabilities to be trained and fine-tuned to downstream tasks, purpose-designed AI models could be adapted to provide education about capacity legislation, facilitate patient and staff interaction, and allow interactive updates by healthcare professionals. These measures could optimise the benefits of AI and minimise risks. Similar efforts have been made to use AI more responsibly in healthcare by training large language models to answer healthcare questions more safely and accurately. We highlight the need for open discussion about optimising the potential of AI while minimising risks in this population.

New technology, psychiatry, and the law: Panic, prudence, possibility

Throughout human history, all new technology has been met with surprise, anxiety, panic, and – eventually – prudent adoption of certain aspects of specific technological advances. This pattern is evident in the histories of most technologies, ranging from steam power in the nineteenth century, to television in the twentieth century, and – now – ‘artificial intelligence’ (AI) in the twenty-first century. Each generation believes that the technological advances of its era are quantitatively and qualitatively different to those of previous generations, but the underlying phenomenon is the same: the shock of the new, followed by more gradual adjustment to (and of) new technology. These concerns are apparent today in relation to AI, which reflects interesting but incremental advances on existing technologies, rather than stand-alone developments. The usual concerns with all technologies (e.g., that they will replace certain aspects of human function) are, perhaps, more concerning in fields such as mental capacity law, which often applies to people with impaired decision-making capacity who might be especially vulnerable to technologies which appear capable of encroaching disproportionately on decision-making or other areas of core human function. This paper approaches this topic from an historical standpoint, noting both previous technological panics in the past and the possibilities offered by AI today, provided it is approached in a proportionate, prudent, and person-centered way, underpinned by appropriate ethical guidance and active ethical awareness in clinical and legal practice.

Restrictive practices and patients with impaired decision-making: Balancing duties and rights

There is a legislative lacuna in South Australian laws governing patients who present to hospitals with a medically impaired decision-making capacity where restrictive practices are warranted to facilitate assessment, treatment or mitigate the risk of harm. In this article, the author employs Charmaz’s constructivist grounded theory methodology to analyse how clinicians navigated this gap. A proposal is made to develop legal reforms balancing clinician duties with patients’ human rights, through standardised legislative frameworks with accessible avenues for redress for vulnerable patients.

Distributed rights protection: The 2000 Hague Convention on the International Protection of Adults and the challenge of securing fundamental rights across borders

The 2000 Hague Convention on the International Protection of Adults (‘the 2000 Convention’) entered into force on 1 January 2009, is cast as a private international law convention (i.e. one providing tools to minimise procedural, debates about cross-border matters affecting individuals). However, in little-known, and even less explored fashion, it has significant implications for the exercise of both administrative and legal powers by States over those in their territory in zones that are conventionally held close to the metaphorical heart of State power, for instance those experiencing mental ill health, or with impaired decision-making capacity. Even less explored are the consequences for the individuals at the centre of such situations, in particular as regards the protection of their fundamental rights. As we examine in this paper, focusing on both problems of abduction and of cross-border placement into circumstances of deprivation of liberty, such protection has to be distributed between jurisdictions; we suggest that this is a phenomenon which requires to be addressed in a transparent fashion, so that all concerned can be clear as to the implications for its effectiveness.

Cognitive determinants of decisional capacity in neurodegenerative disorders.

Cognitive contributions to decisional capacity are complex and not well understood. Capacity to consent for research has been linked to executive function, but executive function assessment tools are imperfect. In this study, we examine the relationship between decisional capacity and a newly developed executive function composite score and determine whether cognitive performance can predict impaired decisional capacity. This is a cross sectional study of participants at the National Institutes of Health with frontotemporal dementia-amyotrophic lateral sclerosis spectrum disorders enrolled between 2017 and 2022. A structured interview tool was used to ascertain research decisional capacity. Study participant Uniform Data Set (v3.0) executive function (UDS3-EF) composite score, Clinical Dementia Rating Scale©, and Neuropsychiatric Inventory was determined. A decrease in UDS3-EF composite score significantly increased the odds of impaired decisional capacity (OR = 2.92, 95% CI [1.66-5.13], p = 0.0002). Executive function was most impaired in frontotemporal dementia (-2.86, SD = 1.26) and least impaired in amyotrophic lateral sclerosis (-0.52, SD = 1.25) participants. The UDS3-EF composite score was also strongly correlated to the Clinical Dementia Rating Scale©. Decisional capacity is intrinsically related to executive function in neurodegenerative disorders, and executive dysfunction may predict a lack of decisional capacity alerting investigators of the need for additional scrutiny during the informed consent process.

Sharing Health Care Wishes in Primary Care (SHARE) among older adults with possible cognitive impairment in primary care: Study protocol for a randomized controlled trial

ObjectiveLittle is known about effective strategies to improve advance care planning (ACP) for persons with cognitive impairment in primary care, the most common setting of care. We describe a randomized controlled trial to test the efficacy of a multicomponent communication intervention, “Sharing Healthcare Wishes in Primary Care” (SHARE). ParticipantsPlanned enrollment of 248 dyads of adults 80 years and older with possible cognitive impairment and their care partner, from primary care clinics at 2 Mid-Atlantic health systems. MethodsThe treatment protocol encompasses an introductory letter from the clinic; access to a designated facilitator trained in ACP; person-family agenda-setting to align perspectives about the family's role; and print education. The control protocol encompasses minimally enhanced usual care, which includes print education and a blank advance directive. Randomization occurs at the individual dyad-level. Patient and care partner surveys are fielded at baseline, 6-, 12-, and 24- months. Fidelity of interventionist delivery of the protocol is measured through audio-recordings of ACP conversations and post-meeting reports, and by ongoing monitoring and support of interventionists. OutcomesThe primary outcome is quality of end-of-life care communication at 6 months; secondary outcomes include ACP process measures. An exploratory aim examines end-of-life care quality and bereaved care partner experiences for patients who die by 24 months. ConclusionsCaregiver burden, clinician barriers, and impaired decisional capacity amplify the difficulty and importance of ACP discussions in the context of cognitive impairment: this intervention will comprehensively examine communication processes for this special subpopulation in a key setting of primary care.Registration: ClinicalTrials.gov: NCT04593472.

Teenager and the transplant: how the case of William Verden highlights action is needed to optimise equitable access to organs for patients with impaired decision-making

In February 2022, the Court of Protection was faced with the question of whether a kidney transplant was in the best interests of William Verden. The case highlighted the legal,...

Impaired Decision-Making Capacity in the Elderly King David (c. 1040-970 BCE): Was Hypothyroidism the Underlying Cause?

It has been suggested in the medical literature that in the last period of his life King David (c. 1040-970 BCE) suffered from dementia, osteoporosis, hyperparathyroidism, Parkinson's disease, autonomic neuropathy, major depression, and malignancy. The goal of this study was to identify, based on the "Succession Narrative (SN)," a historically objective section of the Old Testament, the clinical syndrome presented by King David and to determine whether an impaired decision making capacity may have been manipulated by his courtiers to influence his succession's politics. The "SN" indicates that besides forgetfulness and trouble in thinking, King David suffered from marked cold intolerance and sexual dysfunction. The symptom triad consisting of cognitive impairment, cold intolerance, and sexual dysfunction is more strongly suggestive of hypothyroidism than of any other diagnoses proposed in the medical literature so far. We hypothesized that hypothyroidism was the underlying cause of the elderly King David's clinical picture and that his sometimes troubled thinking was successfully manipulated by the courtiers to favor his son Solomon's accession to the throne, with profound historical consequences.

Ethical Issues faced by Home Care Physicians and Nurses in Japan and their Ethics Support Needs: a Nationwide Survey.

This study aimed to identify the ethical issues faced by home care physicians and nurses, and the support they require. It was conducted in collaboration with the Japanese Association for Home Care Medicine from November to December 2020. An e-mail was sent to 2785 physicians and 582 nurses who are members of the society, requesting their participation in a web-based survey targeting physicians and nurses with practical experience in home care; 152 physicians and 53 nurses responded. Home care physicians and nurses face ethical issues, some of which are that "the patient's wishes cannot be reliably understood owing to their impaired decision-making capacity" and "there is disagreement between the patient and their family members over the necessary healthcare." The respondents sought "experience with, and insight into, healthcare ethics" and "home care" from people with whom they would consult on ethical issues, but at the time of the actual consultation, those individuals were the main healthcare professionals involved with the patient. In addition, the respondents desired to have "multidisciplinary discussions in the community," "participation of healthcare ethics experts at meetings," and "meetings held by healthcare ethics experts" to discuss specific cases. Given these results and the history of healthcare ethics education in Japan-which has been implemented mostly for healthcare providers-we conclude that it is important for academic societies that offer healthcare ethics education to healthcare providers and regional core hospitals with ethics support resources to collaborate to provide ethics consultation services in the community.

Informed consent in dermatology: a narrative review.

Informed consent is a legal and ethical obligation of healthcare providers, and there are several steps that must be followed for informed consent to be obtained. Numerous challenges exist to obtaining informed consent including gaps in health literacy, language barriers, impaired decision-making capacity, and inadequacy of informed consent forms. Dermatologists must understand the importance and process for obtaining informed consent to protect patients as well as avoid litigation. This narrative review provides an overview of the process of obtaining informed consent, insight into the top challenges that clinicians may face with suggested recommendations, and a brief review of litigation from improper consent among dermatologists.

The needs of patients with noncancer diseases and their families from hospital-based specialized palliative care teams in Japan.

Hospital-based specialized palliative care teams (HSPC) are important for symptom management and ethics support, especially during complex decision-making, but the needs of patients with noncancer diseases and their families from the HSPC are unclear. This study aimed to (I) compare the prevalence of symptom between patients with and without cancer and explore changes in symptom intensity after HSPC consultation in patients with noncancer; (II) determine factors related to ethics support; and (III) compare the percentage of request contents from patients and their families when a certified nurse specialist in gerontological nursing (geriatric care nurse below) is present in the HSPC to that when a certified nurse specialist in palliative care (palliative care nurse below) is present in the HSPC. We utilized a retrospective cohort study to analyze 761 patients (360 with noncancer and 401 with cancer) referred to our HSPC at the National Center for Geriatrics and Gerontology using 10-year data (since 2011) available in an electronic medical record database. (I) Symptom scores of the Support Team Assessment Schedule were compared between noncancer and cancer groups and between initial and 1-week assessments for noncancer patients. (II) Ethics support was compared between noncancer (including dementia) and cancer. The presence or absence of ethics support requests, which was set as the objective variable, was examined using logistic regression analysis. (III) The percentage of request contents selected from nine items defaulted on the electronic medical record when a geriatric care nurse was present in our HSPC were compared to those when a palliative care nurse was present in our HSPC. Compared to those with cancer, patients with noncancer suffered more from dyspnea and sputum accumulation. More than 10% of patients with noncancer had suffered from pain, dyspnea, sputum accumulation, and anorexia that required treatment, with symptom scores showing improvement after 1 week of HSPC involvement, except for the sputum accumulation. Moreover, for anorexia, symptom scores improved, but >10% of these patients continued to suffer. Patients with noncancer diseases, including dementia, received ethics support than those with cancer without dementia. More requests for ethics support were received when a geriatric care nurse was in the HSPC than when a palliative care nurse was in the HSPC. Logistic regression analysis revealed that requests for ethics support were more frequent from patients or families with impaired decision-making capacity or when the patient lacked an advocate. The needs of patients with noncancer diseases and families from the HSPC in Japan included (I) symptom management for intractable conditions, such as sputum accumulation; (II) ethics support for patients with noncancer diseases, including dementia, with impaired decision-making capacity, and without advocates; and (III) advice on ethics issues from a geriatric care nurse.

Importance of decisional capacity tools in obtaining informed consent in clinical settings.

Informed consent represents a specific protocol for obtaining consent from a fully informed human subject to take part in clinical research. Still, informed consent is not only required for clinical trials but it also represents a critical precondition before enrolment in standard everyday medical procedures. Relevant fundamental criteria for obtaining informed consent must be followed, and that is that patient must have the decisional capacity to reach autonomous decision. The patient must be adequately informed and not coerced. Evaluating decisional capacity is crucial to providing the required level of care. The decision of which decisional capacity tool to use can be challenging because of various dissimilarities among the instruments. In this paper, four widely documented instruments have been evaluated, namely, the MacArthur Competence Assessment Tool for Treatment (MacCAT-T), the Hopkins Competency Assessment Test (HCAT), the Structured Interview for Competency/Incompetency Assessment Testing, Ranking Inventory (SICIATRI), and the Capacity Assessment Tool (CAT). Some of them include a fully structured interview; semi-structured forms characterise others. Most of them are adaptable for different scenarios, and yet, some are tailored for specific treatment decisions. Some evaluate all four components of decisional capacity, while others do not. Although a broad range of capacity assessment tools is available, it has been shown that they notably improve the accuracy of capacity evaluations. Given that many pathological conditions could result in impaired decisional capacity, physicians must be able to correctly and consistently assess the capacity for which education and previous experience are pivotal.

Inequitable Access to Transplants: Adults With Impaired Decision-Making Capacity.

Inequitable access to deceased donor organs for transplantation has received considerable scrutiny in recent years. Emerging evidence suggests patients with impaired decision-making capacity (IDC) face inequitable access to transplantation. The “Ethical and Legal Issues” working group of the European Society of Transplantation undertook an expert consensus process. Literature relating to transplantation in patients with IDC was examined and collated to investigate whether IDC is associated with inferior transplant outcomes and the legitimacy of this healthcare inequality was examined. Even though the available evidence of inferior transplant outcomes in these patients is limited, the working group concluded that access to transplantation in patients with IDC may be inequitable. Consequently, we argue that IDC should not in and of itself be considered as a barrier to either registration on the transplant waiting list or allocation of an organ. Strategies for non-discrimination should focus on ensuring eligibility is based upon sound evidence and outcomes without reference to non-medical criteria. Recommendations to support policy makers and healthcare providers to reduce unintended inequity and inadvertent discrimination are set out. We call upon transplant centres and national bodies to include data on decision-making capacity in routine reporting schedules in order to improve the evidence base upon which organ policy decisions are made going forward.

214 - End-of-life decision-making capacity in older people with serious mental illness

ABSTRACTObjectives:The study’s main aim was to assess the end-of-life decision-making capacity and health-related values of older people with serious mental illness.Design, Setting, and Participants:This was a cross-sectional, observational study, done at Weskoppies Psychiatric Hospital, Gauteng Province, South Africa that included 100 adults older than 60 years of age and diagnosed with serious mental illness.Measurements:Socio-demographic, diagnostic, and treatment data were collected before administration of the Mini- Cog and a semi-structured clinical assessment of end-of-life decision-making capacity. Finally, the standardized interview, Assessment of Capacity to Consent to Treatment, was administered. This standardised instrument uses a hypothetical vignette to assess decision-making capacity and explores healthcare-related values.Results:According to the semi-structured decision-making capacity assessment, 65% of participants had decision-making capacity for end-of-life decisions. The Assessment of Capacity to Consent to Treatment scores were significant (p<0.001) when compared to decision-making capacity. Significant correlations with impaired decision-making capacity included: lower scores on the Mini-Cog (p<0.001); a duration of serious mental illness of 30-39 years (p=0025); having a diagnosis of schizophrenia spectrum disorders (p=0.0007); and being admitted involuntarily (p<0.0001).Conclusions:Two thirds of older people with serious mental illness had decision-making capacity and were able to engage in end-of-life care discussions. Healthcare providers have a duty to initiate advance care discussions, optimize decision-making capacity, and protect autonomous decision-making. Chronological age or diagnostic categories should never be used as reasons for discrimination, and older people with serious mental illness should receive end-of-life care in keeping with their preferences and values.

End-of-Life Decision-Making Capacity in Older People With Serious Mental Illness.

Background: The study's main aim was to assess the end-of-life decision-making capacity and health-related values of older people with serious mental illness.Methods: A cross-sectional, observational study, was done at Weskoppies Psychiatric Hospital, Gauteng Province, South Africa that included 100 adults older than 60 years of age and diagnosed with serious mental illness. The Mini-Cog and a semi-structured clinical assessment of end-of-life decision-making capacity was done before a standardized interview, Assessment of Capacity to Consent to Treatment, was administered. This standardized instrument uses a hypothetical vignette to assess decision-making capacity and explores healthcare-related values.Results: The Assessment of Capacity to Consent to Treatment scores correlated (p < 0.001) with the outcomes of the semi-structured decision-making capacity evaluation. Significant correlations with impaired decision-making capacity included: lower scores on the Mini-Cog (p < 0.001); a duration of serious mental illness of 30–39 years (p = 0025); having a diagnosis of schizophrenia spectrum disorders (p = 0.0007); and being admitted involuntarily (p < 0.0001). A main finding was that 65% of participants had decision-making capacity for end-of-life decisions, were able to express their values and engage in advance care discussions.Discussion and Conclusion: Healthcare providers have a duty to initiate advance care discussions, optimize decision-making capacity, and protect autonomous decision-making. Many older patients with serious mental illness can engage in end-of-life discussions and can make autonomous decisions about preferred end-of-life care. Chronological age or diagnostic categories should never be used as reasons for discrimination, and older people with serious mental illness should receive end-of-life care in keeping with their preferences and values.

A Conceptual Framework for the Ethical Evaluation of Supported Decision-Making

"Background: Supported decision-making (SDM) refers to all types of interventions support persons with impaired decision-making capacity (DMC) in making informed treatment decisions. It encompasses a wide range of interventions, such as enhanced consent procedures, elaborated plain language and involvement of family, friends or peers in the informed consent process. Empirical research showed that SDM can enhance DMC. The UN Convention on the Rights of Persons with Disabilities, which has been ratified by 180 states parties to date, pronounces in article 12(3) that “states parties shall take appropriate measures to provide access by persons with disabilities to the support they may require in exercising their legal capacity.” At the same time, medical ethicists and legal scholars have raised the concern that persons with impaired DMC are more likely to become subject to undue influence under SDM arrangements. Objectives: The aim of this presentation is to provide a conceptual framework to facilitate an ethical evaluation of various forms of supported decision-making. Methods: Empirically informed conceptual analysis. Various SDM interventions are analyzed. Findings: It is necessary to distinguish between input, process and output support. Input support involves influencing factors that are negatively correlated with DMC; process support involves interpreting a person’s preferences and carrying out intellectual processing; and output support involves enabling a person to communicate decisions to others. Conclusion: Most forms of input and output support are promising, but ethical issues in relation to framing and interpersonal leverage must be addressed. Forms of process support that involve “outsourcing” decision-making capacities are ethically problematic. "

Civil responsibility in Geriatric Psychiatry.

Mental health issues impair decision-making capacity, more so in elderly people. Impaired decision-making capacity can make person unfit to enter into various civil deeds and agreements. Such civil deeds can include guardianship, property transaction, holding a bank account, having voting rights, making a will, donating an organ, etc. This article focuses on importance of mental health in entering into above-mentioned civil agreements, how to do assessments to determine if one is fit to enter into civil agreements, and what are the legal ways in which a person can avail help to execute his/her civil rights even when affected by mental health issues.

Older Persons' and Their Caregivers' Perspectives and Experiences of Research Participation With Impaired Decision-Making Capacity: A Scoping Review.

Human research ethics statements support the equitable inclusion of diverse groups. Yet older people are underrepresented in clinical research, especially those with impaired decision-making capacity. The aim of this study was to identify the perspectives and experiences of older persons and their caregivers of research participation with impaired decision-making capacity. Scoping review of the literature and online sources in January-February 2019 (updated June 2020) according to Joanna Briggs Institute methodology and PRISMA Extension for Scoping Reviews. English-language peer-reviewed research articles and Australian online narratives were included. Data were tabulated and narratively synthesized. From 4,171 database records and 93 online resources, 22 articles (2000-2019, 82% United States, 16 first authors) and one YouTube webinar (2018) were initially included; updated searches yielded an additional article (2020) and YouTube webinar (2020). Studies were heterogeneous in terminology, methods, and foci, with hypothetical scenarios, quantitative analyses, and examination of proxy consent predominating. Participants (N = 7,331) were older persons (71%), caregivers of older persons with dementia/cognitive impairment (23%), and older persons with dementia/cognitive impairment (6%). Synthesis identified 2 themes: willingness to participate and decision-making approaches. Research participation by older persons with dementia may be optimized through reducing risks and burdens and increasing benefits for participants, greater consumer input into study development, and shared and supported decision-making. Older persons' and caregivers' perspectives and experiences of research participation with impaired decision-making capacity require investigation in a greater range of countries and conditions other than dementia, and dissemination through more varied media.

Older adults abuse: analysis of a New Zealand national dataset.

Older adult abuse (OAA), defined as abuse, neglect, or mistreatment of persons aged 65 years or older, is a globally pervasive concern, with severe consequences for its victims. While internationally reported rates of OAA are in the range of 5-20% per annum, New Zealand lacks the necessary data to quantify the issue. However, with a growing aging population, an increase in the prevalence of OAA is predicted. We investigated the extent of OAA in New Zealand, utilizing the mandatory interRAI-HC (International Resident Assessment Instrument-home care assessment) dataset, which included 18,884 interviewees from the Southern District Health Board between 2013 and 2019. Findings confirmed our hypothesis that the interRAI assessment is neither sufficiently sensitive nor specific capturing only 3% from a population of increased frailty and thus at higher risk of abuse. We characterized OAA victims as relatively younger males, depressed, and with impaired decision-making capacity. If the interRAIs were to serve as a preliminary screening tool for OAA in New Zealand, it would be germane to implement changes to improve its detection rate. Further studies are urgently called for to test changes in the interRAI that will aid in identifying often missed cases of OAA better and thus offer protection to this vulnerable population.

Determining medical decision-making capacity in brain tumor patients: why and how?

Brain tumor patients are at high risk of impaired medical decision-making capacity (MDC), which can be ethically challenging because it limits their ability to give informed consent to medical treatments or participation in research. The European Association of Neuro-Oncology Palliative Care Multidisciplinary Task Force performed a systematic review to identify relevant evidence with respect to MDC that could be used to give recommendations on how to cope with reduced MDC in brain tumor patients. A literature search in several electronic databases was conducted up to September 2019, including studies with brain tumor and other neurological patients. Information related to the following topics was extracted: tools to measure MDC, consent to treatment or research, predictive patient- and treatment-related factors, surrogate decision making, and interventions to improve MDC. A total of 138 articles were deemed eligible. Several structured capacity-assessment instruments are available to aid clinical decision making. These instruments revealed a high incidence of impaired MDC both in brain tumors and other neurological diseases for treatment- and research-related decisions. Incapacity appeared to be mostly determined by the level of cognitive impairment. Surrogate decision making should be considered in case a patient lacks capacity, ensuring that the patient's "best interests" and wishes are guaranteed. Several methods are available that may help to enhance patients' consent capacity. Clinical recommendations on how to detect and manage reduced MDC in brain tumor patients were formulated, reflecting among others the timing of MDC assessments, methods to enhance patients' consent capacity, and alternative procedures, including surrogate consent.