Capacity, autonomy, and risk: reflecting on asymmetries in capacity to consent and capacity to refuse
Jonathan Pugh
Ethical Theory and Moral Practice, 2024
Abstract
There has been renewed interest in whether we should understand standards of decision-making capacity (DMC) to be risk relative. Critics of risk-relative standards often highlight a puzzling asymmetry that they imply; a patient may have the requisite DMC to consent to a treatment that is in their best interests, whilst lacking the requisite DMC to refuse that same treatment, given the much higher risk that this would entail. Whilst some have argued that this asymmetry suggests that risk-relative standards are nonsensical, in this paper I defend a ‘quality of evidence’ view of such standards. I begin by outlining DMC’s purported gate-keeping role in medical ethics, and identifying three key normative claims that undergird this role. I then explain how two competing theories of risk-relative standards are incompatible with at least one of these claims. Drawing on Douglas’ distinction between standards of ‘true capacity’ and standards invoked in the ‘test’ for capacity, I then outline my ‘quality of evidence’ view. I explain how the view is compatible with the aforementioned normative claims and outline the nature of the asymmetry it implies. I conclude by responding to the objection that there is no meaningful distinction between ‘true capacity’ and the ‘test’ for capacity.

Editor’s note: The distinction between the standards of ‘true capacity’ referenced in this abstract refer to arguments made by Thomas Douglas in his article Pragmatic argument for an acceptance-refusal asymmetry in competence requirements.

Assessment of decision-making autonomy in chronic pain patients: a pilot study
Research
Marguerite d’Ussel, Emmanuelle Sacco, Nathan Moreau, Julien Nizard, Guillaume Durand
BMC Medical Ethics, 18 September 2024
Open Access
Abstract
Background
Patient decision-making autonomy refers to the patients’ ability to freely exert their own choices and make their own decisions, given sufficient resources and information to do so. In pain medicine, it is accepted that appropriate beneficial management aims to propose an individualized treatment plan shared with the patients, as agents, to help them live as autonomously as possible with their pain. However, are patients in chronic pain centers sufficiently autonomous to participate in the therapeutic decisions that concern them? As this question still remains unanswered, a pilot study was set up to that aim.
Methods
Over a 2-month period, first-time patients within a tertiary multidisciplinary pain center underwent a systematic evaluation of their autonomy using the MacArthur Competence Assessment Tool for Treatment (MacCAT-T), considered the benchmark tool for measuring a patient’s ability to consent to treatment. Demographic data and pain characteristics of the patients were collected and their respective attending pain physicians were asked to clinically assess their patients’ degree of autonomy. Another physician, who had not participated in the initial patient evaluation, subsequently administered the MacCAT-T questionnaire to the same patients.
Results
Twenty-seven patients were included during the study period (21 women and 6 men), with an average age of 50 years. The average duration of pain was 8 years. Based on their clinical experience, the 4 different pain physicians in charge of these patients considered that out of 25 assessed patients, 22 of them (89%) had full decision-making capacity, with no deficit in autonomy. According to the MacCAT-T results, only 13 of these 25 patients (48%) had no deficit, while 7 (26%) had a major deficit in autonomy. The only patient characteristic that appeared to be related to autonomy was pain type, specifically nociplastic pain. The average time taken to complete the test was 20 min, and patients were very satisfied with the interview.
Conclusion
Results from the present pilot study suggest that patients suffering from chronic pain do not appear to be entirely autonomous in their decision to consent to the proposed treatment plan according to the MacCAT-T questionnaire, and physicians seem to find it difficult to properly assess this competence in a clinical setting. Further studies with larger samples are needed to better evaluate this concept to improve the complex management of these patients.

Consent to voluntary antipsychotic drug treatment-Is it free and informed?
Refael Yonatan-Leus, Nili Karako-Eyal
Psychiatric Rehabilitation Journal, 16 September 2024
Abstract
Objective
The present research investigates the dynamics of consent in the context of antipsychotic drug therapy, with a particular emphasis on the essential attributes that constitute free and informed consent within medical treatment scenarios.
Method
Twenty individuals treated with antipsychotic drugs with consent underwent semistructured interviews.
Results
The following major themes were identified: (a) lack or total absence of information regarding the treatment, emphasizing side effects, risks, chances of success, and treatment alternatives. (b) A subjective experience of the lack of free choice that was sometimes also accompanied by the conditioning of psychiatric rehabilitation services or receiving treatment in an open ward by taking antipsychotic medication.
Conclusions and implications for practice
The research findings may indicate a problem in obtaining informed consent for antipsychotic treatment that should be addressed. The themes highlight the need to examine the interface between rehabilitation services and psychiatric treatment from the legal and ethical perspective of the autonomy of individuals receiving care.

Enhancing Assent and Treatment Outcomes: A Case Study on Responding to Aversive Ambient Auditory Stimuli for an Autistic Adult

Original Article

Faris R. Kronfli, J. Stephanie Gonzalez, Malchijah T. Williams, Timothy R. Vollmer

Journal of Developmental and Physical Disabilities, 3 September 2024

Abstract

We explored assent procedures to promote assent and treatment effectiveness for an autistic adult. The objective, at the request of the participant, was to evaluate an innovative approach to (a) identify aversive auditory stimuli and (b) teach Steven, a 19-year-old male, appropriate responses in the presence of these stimuli without directly exposing him to the stimuli. The results suggest that the procedures effectively identified auditory stimuli for assessment and taught the participant to avoid the aversive stimuli appropriately (that is, in ways that were not dangerous). Through the implementation of this novel approach, assent and treatment effectiveness were enhanced for the autistic individual.

Communication Strategies in Negotiating Autonomy and Consent for Persons with Dementia (PWD)

Josephine Misaro, Jimoh J. Braimoh, Josephine Akuamoah Boateng

International Journal of Enhanced Research in Medicines & Dental Care (IJERMDC), August 2024

Open Access

Abstract

Objectives

The aim of this study is to explore the communication strategies deployed by administrators and staff in Assisted Living communities in negotiating sexual autonomy. Furthermore, the study investigates outcomes and effectiveness of such strategies in maintaining independence and freedom for Persons With Dementia (PWD)’s sexual and intimacy desires.

Method

This research relies on thematic qualitative design using interviews for collecting data. Semi-structured interviews with administrators and staff from 7 assisted living communities were analyzed based on how PWDs are communicated with and the outcomes.

Results

The findings revealed that some communication strategies, namely, Watchful Oversight/Oversurveillance, Redirecting, and Reporting ensure safety but often compromise residents’ autonomy and well-being. Formal policies on sexual rights and comprehensive staff training could foster a more supportive and inclusive environment.

Discussion

This research is important because it emphasizes the unique communication strategies that support the autonomy and dignity of PWD. It was evident from the findings that while the communication strategies of Oversight/Oversurveillance, Redirecting, and Reporting ensure safety and compliance, they often compromise residents’ autonomy and well-being. Balancing these strategies with empathy, formal policies on sexual rights, and comprehensive staff training is crucial for a supportive and respectful environment in AL communities.

It’s a spiral staircase, not just two steps: An iterative approach to assessing patient capacity for medical decision-making
Marc Tunzi, Philip G. Day, David J. Satin
Patient Education and Counseling, October 2024
Abstract
The assessment of medical decision-making capacity as part of the process of clinical informed consent has been considered a bioethical housekeeping matter for decades. Yet in practice, the reality bears little resemblance to what is described in the medical literature and professed in medical education. Most literature on informed consent refers to medical decision-making capacity as a precondition to the consent process. That is, a clinician must first determine if a patient has capacity, and only then may the clinician engage with the patient for the rest of informed consent. The problem with this two-step approach is that it makes no sense in actual practice. We see the assessment of medical decision-making capacity within the process of informed consent as a spiral staircase, not just two steps, requiring clinicians to keep circling up and around, making progress, until they get to where they need to be: 1. Clinicians start with a general presumption of capacity for most adults, sometimes having a provisional appraisal of capacity based on prior patient contact. 2. Then, they begin performing informed consent for the current situation and intervention options. 3. Next, they must reassess capacity during this process. 4. After that, they continue with informed consent. 5. If capacity is not yet clear, they repeat 1–4.

Modifications to consent documentation with adults with communication disorders following brain injury: An exploratory study
Original Article
Jennifer Watermeyer, Chiara Aylward
Developing World Bioethics, 14 July 2024
Open Access
Abstract
Consent documentation for research studies is often inaccessible to people with neurogenic communication disorders following brain injury and there is limited literature on specific modifications for informed consent. This exploratory study aimed to identify effective strategies and modifications to consent processes for adults with brain injury. Using a fictitious research study, we developed a set of Participant Information Sheets (PISs) varying in complexity, presentation format, and communication modality. Evaluations were conducted with eight participants. Findings indicated diverse participant preferences for PIS modifications, suggesting simplified vocabulary, reduced text, carefully selected images, and an interactive presentation modality as helpful strategies. Building on previous literature, we present refined guidelines for consent modifications for adults with neurogenic communication disorder after brain injury. These guidelines can promote more appropriate inclusion of communicatively impaired populations in research and assist ethics committees and researchers in preparing modified consent documents.

Measuring Cognition in Clinical Trials in Parkinson’s Disease, Dementia with Lewy Bodies, and Related Disorders
Roundtable Proceedings and Roadmap for Research
Shannon D. Donofry, Claire E. O’Hanlon
Rand, 8 July 2024
Excerpt
   Emerging research suggests that Parkinson’s disease (PD) and dementia with Lewy bodies (DLB) share underlying pathology and may represent a single, biologically defined disease spectrum. Cognitive changes are among the most worrisome symptoms for patients with PD, and are the core feature of DLB. While the cognitive changes experienced by individuals with PD and mild cognitive impairment share some clinical characteristics with patients who have undiagnosed or prodromal DLB, these changes are distinct from other types of dementias, such as Alzheimer’s disease.

To spur the adaptation of existing cognition-focused measures and the development of new ones to underlie clinical trial endpoints in PD and DLB, the PD/DLB Cognition Roundtable was held on January 10 and 11, 2024, in Washington, D.C. The roundtable brought together representatives from academia and industry, as well as with representatives of regulatory agencies, community partners, patient advocates, and research funders, to build consensus and collaborate on the outcome assessment and trial design methods that will support the development of new treatments for early or mild cognitive changes in disorders on the PD/DLB spectrum.

The authors of this document summarize the roundtable, discussing the state of the field for clinical trial design and cognition measures in PD and DLB, promising avenues of research, and perspectives of regulatory agencies…

Important legal principles of consent and mental capacity
Iwan Dowie
British Journal of Community Nursing, 4 July 2024
Abstract
Consent is an essential part of healthcare practice, allowing patients to make autonomous decisions. However, this changes when a patient has mental incapacity or is unable to make decisions for themselves for a duration of time. This month’s Policy column looks at some of the key principles of the Mental Capacity Act 2005, and how this can be applied in community nursing practice.

Informed Consent and Surrogate Interference at the Initiation of Community-Based Palliative Care Services
John C. Stys
Palliative Medicine Reports, 22 April 2024
Open Access
Abstract
Community-based palliative care (CBPC) clinicians sometimes contend with an ethically charged scenario when they encounter patients for the first time: The patient’s spouse, or other loved one or caregiver, revokes the patient’s valid informed consent to initiate care. While surrogates are usually motivated by protective instincts, there are other situations where surrogates act out of self-interest. This article considers whether it is ever ethically justified for an adult to revoke another adult’s valid informed consent to initiate palliative care services. The article examines this scenario from three perspectives: the patient’s capacity to give or relinquish informed consent, the surrogate’s intent and use of substituted judgment or best interest, and the clinician’s duty to provide clinical care. This ethical analysis argues that CBPC clinicians have an ethical responsibility to provide palliative care services for patients who have given valid informed consent for those services even when a surrogate acts as an interfering or oppositional force.