Assessment of capacity to give informed consent for medical assistance in dying: a qualitative study of clinicians’ experience
Ellen Wiebe, Michaela Kelly, Thomas McMorrow, Sabrina Tremblay-Huet, Mirna Hennawy Abstract
Canadian Medical Association Journal, 13 April 2021;9(2) pp E358-E363
Open Access
Abstract
Background
Under the Canadian Criminal Code, medical assistance in dying (MAiD) requires that patients give informed consent and that their ability to consent is assessed by 2 clinicians. In this study, we intended to understand how Canadian clinicians assessed capacity in people requesting MAiD.
Methods
This qualitative study used interviews conducted between August 2019 and February 2020, by phone, video and email, to explore how clinicians assessed capacity in people requesting MAiD, what challenges they had encountered and what tools they used. The participants were recruited from provider mailing listserves of the Canadian Association of MAiD Assessors and Providers and Aide médicale à mourir. Interviews were audio-recorded and transcribed verbatim. The research team met to review transcripts and explore themes as they emerged in an iterative manner. We used abductive reasoning for thematic analysis and coding, and continued to discuss until we reached consensus.
Results
The 20 participants worked in 5 of 10 provinces across Canada, represented different specialties and had experience assessing a total of 2410 patients requesting MAiD. The main theme was that, for most assessments, the participants used the conversation about how the patient had come to choose MAiD to get the information they needed. When the participants used formal capacity assessment tools, this was mostly for meticulous documentation, and they rarely asked for psychiatric consults. The participants described how they approached assessing cases of nonverbal patients and other challenging cases, using techniques such as ensuring a quiet environment and adequate hearing aids, and using questions requiring only “yes” or “no” as an answer.
Interpretation
The participants were comfortable doing MAiD assessments and used their clinical judgment and experience to assess capacity in ways similar to other clinical practices. The findings of this study suggest that experienced MAiD assessors do not routinely require formal capacity assessments or tools to assess capacity in patients requesting MAiD.

Impact of Age on Consent in a Geriatric Orthopaedic Trauma Patient Population
Research Article
Madeline M. McGovern, Michael F. McTague, Erin Stevens, Juan Carlos Nunez Medina, Esteban Franco-Garcia, Marilyn Heng
Geriatric Orthopedic Surgery & Rehabilitation, 30 March 2021
Open Access
Abstract
Introduction
Persistent misconceptions of frailty and dementia in geriatric patients impact physician-patient communication and leave patients vulnerable to disempowerment. Physicians may inappropriately focus the discussion of treatment options to health care proxies instead of patients. Our study explores the consenting process in a decision-making capable orthogeriatric trauma patient population to determine if there is a relationship between increased patient age and surgical consent by health care proxy.
Methods
Patients aged 65 and older who underwent operative orthopaedic fracture fixation between 1 of 2 Level 1 Trauma Centers were retrospectively reviewed. Decision-making capable status was defined as an absence of patient history of cognitive impairment and a negative patient pre-surgical Confusion Assessment Method (CAM) and Mini-Cog Assessment screen. Provider of surgical consent was the main outcome and was determined by signature on the consent form.
Results
510 patients were included, and 276 (54.1%) patients were deemed capable of consent. In 27 (9.8%) of 276 decision-capable patients, physicians obtained consent from health care proxies. 20 of these 27 patients (74.1%) were 80 years of age or older. However, in patients aged 70 to 79, only 7 health care proxies provided consent. (p = 0.07). For every unit increase in age, the log odds of proxy consent increased by .0008 (p < 0.001). Age (p < 0.001), income level (p = 0.03), and physical presence of proxy at consult (p < 0.001) were factors associated with significantly increased utilization of health care proxy provided consent. Language other than English was a significant predictor of proxy-provided consent (p = 0.035). 48 (22%) decision-making incapable patients provided their own surgical consent.
Discussion
The positive linear association between age and health care proxy provided consent in cognitively intact geriatric orthopaedic patients indicates that increased patient age impacts the consenting process. Increased physician vigilance and adoption of institutional consenting guidelines can reinforce appropriate respect of geriatric patients’ consenting capacity.

Competence and informed consent
Adam Doležal, Tomáš Doležal
Vnitr̆ní lékar̆ství, Winter 2021; 67(1) pp 49-55
Abstract
The issue of a patient´s competence is often solved in practice without a major theoretical concept. Such an approach, focused only on the basis of intuitions and experiences of physicians, however, may lead in some cases to an inadequate assessment of competence of a particular patient. Ultimately, it can happen that the decision of an incompetent person will be respected or that the decision of the competent person will be disrespected. Both possibilities can have ethical as well as legal consequences. This article addresses both theoretical and practical issues of competence in adult patients.

Editor’s note: Internal Medicine is the official journal of the Czech Internal Medicine Society.

Psychological, ethical and legal aspects of neurosurgical procedures in conscious patients with judgment consent
Zygmunt Siedlecki, Agnieszka Gutkowska, Karol Nowak, Sheeba Shaik, Maciej Śniegocki
Psychology and Education, 2021; 58(2) pp 7179-7183
Open Access
Abstract
Neurosurgical procedures are often performed on patients with brain diseases, making them mentally dysfunctional. These patients may be unconscious, and the surgery is emergency and life-saving then. Its execution from a legal point of view is performed with implied consent. Another problem, both ethically and legally, are the conscious patients who, however, has mental limitations and disturbed criticism, are fully conscious and who do not agree to pronounced treatment. Judgment approval is necessary in these cases. A certain dilemma is the implementation of treatment during the consistently emphasized refusal of treatment. It is difficult for physician, especially since he has contact with this patient every day. We present our own experience in the treatment of such patients. We share our comments and observations. We describe cases of patients treated for brain tumors, hydrocephalus and chronic subdural hematomas. We present the daily ethical, legal and organizational aspects of treating such patients. We suggest that empathy and conversation with such patients is of key importance.

Consent, Informed: Rethinking Informed Consent & Competency for Patients with Schizophrenia & Anosognosia
Nina Labovich
Boston College Law Review, 24 February 2021; 62(2)
Open Access
Abstract
Anosognosia is a common symptom of schizophrenia and schizoaffective disorder that renders individuals unable to understand that they are living with a disease. This symptom often leads people to refuse anti-psychotic medication, and may increase an individual’s likelihood of becoming homeless or incarcerated. When courts find individuals to be a danger to others or themselves, states can impose involuntary commitment. When a state grants involuntary commitment, however, a court may find the individual remains competent to refuse medication. This Note argues that documented anosognosia requires a finding of incompetency, whether people are a danger to themselves or not. Science suggests that a person with severe anosognosia lacks the insight to refuse treatment. This Note proposes a novel statutory definition of competency, encompassing the specific needs of people with anosognosia, and grapples with the significant interests at stake in taking away an individual’s right to choose or refuse treatment, including antipsychotic medication.

Informed Consent or Assent Strategies for Research with Individuals with Deafblindness or Dual Sensory Impairment: A Scoping Review
Review
Archives of Rehabilitation Research and Clinical Translation, 22 February 2021
Abinethaa Paramasivam, Atul Jaiswal, Renu Minhas, Walter Wittich, Roxanna Spruyt-Rocks
Abstract
Objective
To synthesize evidence on existing informed consent/assent strategies and processes that enable the participation of individuals with deafblindness or dual sensory impairment in research.
Data Sources
Five scientific databases (PubMed, MEDLINE, CINAHL, Web of Science, and PsycINFO) and other sources such as Google Scholar, the Journal of Visual Impairment and Blindness, and the British Journal of Visual Impairment were hand-searched from January 2015 until July 2020.
Study Selection
Studies were selected using a priori inclusion criteria of sensory and cognitive disabilities and focused on consent/assent strategies and processes in research within this population. Articles related to the medical or sexual consent processes were excluded.
Data Extraction
An Excel spreadsheet was used to extract data from the eligible sources. Discrepancies were resolved in discussion with team members.
Data Synthesis
A total of 2163 sources were screened, of which 16 articles were included in the review. Seven sources only examined consent strategies, whereas the remaining eight included a combination of consent/assent and dissent strategies. Using thematic analysis, three key themes emerged – consent/assent strategies, researcher capacity, and capacity to consent tools. Key identified strategies included the accessibility of the consent/assent process, building relationships with participants and caregivers, identifying behavioural cues, and communication training for researchers.
Conclusion
Despite the absence of literature on consent/assent strategies within the deafblind population, the review found promising strategies applied to individuals with other cognitive or sensory disabilities that researchers can adopt. Researchers are encouraged to use best practices in creating an inclusive research environment to include individuals with deafblindness.

Decisional capacity to consent to treatment and research in patients affected by Mild Cognitive Impairment. A systematic review and meta-analysis
Review
Giovanna Parmigiani, Antonio Del Casale, Gabriele Mandarelli, Benedetta Barchielli, Georgios D. Kotzalidis, Fabrizia D’Antonio, Antonella Di Vita, Carlo de Lena, Stefano Ferracuti
International Psychogeriatrics, 15 February 2021; pp 1-14
Open Access
Abstract
Objectives
To perform a meta-analysis of clinical studies on the differences in treatment or research decision making capacity among patients with Mild Cognitive Impairment (MCI), Alzheimer’s disease (AD), and healthy comparisons (HCs).
Design
A systematic search was conducted on Medline/Pubmed, CINAHL, PsycINFO, Web of Science, and Scopus. Standardized mean differences and random-effects model were used in all cases.
Setting
The United States, France, Japan, and China.
Participants
Four hundred and ten patients with MCI, 149 with AD, and 368 HCs were included.
Measurements
The studies we included in the analysis assessed decisional capacity to consent by the MacArthur Competence Assessment Tool for Treatment (MAcCAT-T), MacArthur Competence Assessment Tool for Clinical Research (MacCAT-CR), Capacity to Consent to Treatment Instrument (CCTI), and University of California Brief Assessment of Capacity to Consent (UBACC).
Results
We identified 109 potentially eligible studies from 1672 records, and 7 papers were included in the metaanalysis. The meta-analysis showed that there was significant impairment in a decision-making capacity in MCI patients compared to the HCs group in terms of Understanding (SMD = − 1.04, 95% CI: − 1.31 to − 0.77, P < 0.001; I 2 =52%, P= 0.07), Appreciation (SMD = − 0.51, 95% CI: − 0.66 to − 0.36, P <0.001; I 2 = 0%, P = 0.97), and Reasoning (SMD = − 0.62, 95% CI: − 0.77, −0.47, P< 0.001; I 2 =0%, P=0.46). MCI patients scored significantly higher in Understanding (SMD = 1.50, 95% CI: 0.91, 2.09, P =0.01, I 2 = 78%, P= 0.00001) compared to patients affected by AD.
Conclusions
Patients affected by MCI are at higher risk of impaired capacity to consent to treatment and research compared to HCs, despite being at lower risk compared to patients affected by AD. Clinicians and researchers need to carefully evaluate decisional capacity in MCI patients providing informed consent.

Surrogate Informed Consent: A Qualitative Analysis of Surrogate Decision Makers’ Perspectives
Trevor Lane , Elinor Brereton , Carolyn Nowels , Jeffrey McKeehan , Marc Moss , Daniel D Matlock
Annals of the American Thoracic Society, 2 February 2021
Abstract
Rationale
Clinical critical care research often hinges on surrogate informed consent as patients commonly lack decision making capacity due to their acute illness. The surrogate informed consent process has been identified as having flaws and needing improvement. A better understanding of surrogates’ perspectives is required in order to understand and address these shortcomings and thereby improve this process.
Objectives
To explore the perspectives of surrogate decision makers of critically ill mechanically ventilated patients about being approached about having their loved one participate in hypothetical research studies.
Methods
We performed semi-structured qualitative interviews of surrogate decision makers of critically ill mechanically ventilated patients exploring their decisional needs surrounding participation in research. These interviews were recorded and transcribed verbatim. A thematic analysis of transcripts was performed with an iterative group framework using a mixed inductive and deductive approach.
Results
A sample of 21 surrogate decision makers were interviewed. Thematic saturation was achieved by consensus of the investigators. We identified trust as a unifying domain for the themes that emerged through the analytic process. Embedded within the domain of trust, two central themes became apparent: knowledge-based trust and context-based trust. Knowledge-based trust includes sub-themes of logistics, accountability, and mutual respect, whereas context-based trust includes trust in the individual clinicians and trust in the hospital system.
Conclusions
Our findings highlight the nuanced layers of trust central to the surrogate informed consent process. To enhance the surrogate informed consent process for participation in critical care research studies it is crucial that researchers recognize the inherent importance of trust to ensure an effective informed consent process.

Incapacity in childbirth – rare or common?
Neelam Singh, Peter Lepping, Rhiannon Whitaker, Barkat Masood, Shweta Joshi, Philip Banfield
European Journal of Obstetrics & Gynecology and Reproductive Biology, 29 January 2021
Abstract
Objective
Impaired decision making ability is common on general medical wards. Audit evidence suggests that the prevalence of incapacity may be higher than previously assumed in Obstetric Emergency Procedures (OEP) during childbirth. We investigated the prevalence of incapacity in OEP and factors associated with this.
Design
Capacity to consent to treatment was assessed retrospectively in 93 women undergoing OEP. All women were interviewed using a semi-structured questionnaire aided interview within 24 hours of the emergency. Five assessors (3 obstetricians and 2 psychiatrists) were asked to determine capacity to consent from audio recordings of the interviews.
Results
All 5 assessors determined 59% of women to have capacity to consent to treatment and 2% of women to lack capacity. In 39% of women there was some disagreement between assessors. Using a majority decision (3 assessors in agreement), 14% of women lacked capacity. High pain scores, young age and no previous history of theatre deliveries were associated with more incapacity judgments, whilst parity and history of mental illness were not. Using a 7point Likert scale only marginally improved agreement between assessors, compared to their binary decision.
Conclusion
It is often assumed that it is rare to lack capacity in an obstetric emergency procedure during childbirth, but these data suggest that incapacity may be relatively common. In particular, severe pain is a demonstrable risk factor for impaired capacity. Wide variation between assessors questions the validity of current commonly employed (informal) methods used in clinical practice to assess capacity to consent during OEP.

Communication in Psychiatric Coercive Treatment and Patients’ Decisional Capacity to Consent [BOOK CHAPTER]
Gabriele Mandarelli, Giovanna Parmigiani
Springer – Empathy, Normalization and De-escalation, 29 January 2021; pp 113-132
Abstract
Effective communication and the acquisition of a valid consent are central to a good doctor-patient relationship and a clinician’s ethical obligation in order to respect patients’ autonomy, as well as their right to be involved in treatment decisions. However, often clinicians face several issues in performing this task, among which the most frequently reported are the fear of hurting the patient by communicating a bad diagnosis or not knowing how to manage the patient’s emotional reactions. In addition, there are vulnerable populations, such as those represented by psychiatric patients, who are at higher risk of decisional incapacity. Especially for those patients, it is in fact particularly difficult for clinicians to find the proper balance between respecting the right of capable patients to make choices about their treatment and the right of incapable patients to be protected from the possible harmful consequences of their improper decisions. However, nor the presence of a severe psychiatric disorder nor a status of “involuntary hospitalized patient” has been reported to be a label for incapacity. Several tools have been developed to assist clinicians in patients’ decisional capacity evaluations, together with interventions aimed at enhancing informed consent acquisition in order to achieve shared decision-making and lead the patient to become actively involved in his/her treatment decisions. Such an approach would lead to a decrease in the perceived coercion, often reported in mental healthcare settings and also from patients who are not involuntarily hospitalized, and to an increase in patients’ adherence to treatment.