Right To Consent In Informed Consent For Medical Treatment For People With Mental Health Disorders
Santi Novia Ayu Kurniawati, Erna Dyah Kusumawati
International Journal of Business, Economics and Law, April 2023; 28(3)
Open Access
Abstract
Based on the philosophy of legal protection, this article seeks to determine the interpretation of the meaning of mental disorders according to the Civil Code and the application of informed consent to medical treatment for people with mental disorders governed by the Civil Code. Based on the principle of legal protection, this article also seeks to determine the implementation of informed consent to medical treatment for people with mental problems. In this study, the normative law method is being employed. The study’s findings reveal that one interpretation of the idea of mental disorder, based on Article 433 of the Civil Code which reads, “Any adult who is constantly dumb, sick of the brain, or dark-eyed should be put under guardianship, even when he is occasionally proficient with his mind.” maintains that mental disorder is a sort of inability to act or incompetence to conduct a legal act. Following the requirements of the Civil Code, even if those under guardianship are adults, they are considered legally incapable. Due to their inability to act for themselves, individuals with mental problems must give informed consent to medical treatment through family members or legal guardians. The application of informed consent to medical treatment for people with mental problems is governed by the Civil Code, which requires physicians to acquire permission from the patient’s family (supporters, according to the Civil Code). Due to their inability to make decisions for themselves, people with mental disorders cannot give informed permission for medical treatment. However, under Law No. 18 of 2014 concerning Mental Health, social services will assume the role of guardian if the patient has no family or relatives.

Editor’s note: The Civil Code referenced in this abstract is present in Indonesia.

Cardiac Interventions In The Absence Of Assent: An Ethical Dilemma
Complex Clinical Cases
Cooper B. Kersey, Beteal Ashinne, Jeffrey Keenan, James N. Kirkpatrick
Journal of the American College of Cardiology, March 2023
Open Access
Abstract
Background
Cardiovascular practitioners increasingly encounter complex treatment decisions, further complicated when patient decisional-capacity is impaired. We present an ethical conundrum of a patient without decision-making capacity who declined a life-saving surgery.
Case
A 63-year-old woman with schizophrenia and a prior history of mitral and aortic valve endocarditis was found to have recurrent endocarditis of her bioprosthetic mitral valve. Surgical management was recommended, but the patient declined. During a formal capacity assessment, the patient was deemed unable to comprehend her medical condition or the consequences of refusing surgery. The patient then developed transient complete heart block. Goals of care discussions revealed that the patient valued life prolongation and amelioration of her symptoms.
Decision-making
The patient’s durable power of attorney gave consent to proceed with the surgery. Surrogate decision-making rests on substituted judgement (based on knowledge of what the patient would have wanted) or best interest standards (based on beneficence or non-maleficence). The hospital ethics team supported the decision to proceed with surgery over the objections of the patient, in light of the prognosis without surgery, the likelihood of surgical benefit, and the values and goals the patient espoused. The ethics consult team also recommended seeking assent for the surgery from the patient. Assent is not required in addition to consent from a surrogate, but it oftentimes facilitates interventions without chemical or physical restraints. Ultimately, the patient provided passive assent and underwent successful re-do mitral and aortic valve replacements and was discharged in stable condition.
Conclusion
We highlight a case in which cardiovascular clinicians encountered a patient without decision-making capacity refusing a life-saving intervention. Cardiovascular clinicians should be familiar with important ethical elements involved in complex decision-making, including autonomy and its limits, substituted judgement and best interests standards, and standards and laws pertaining to surrogate decision-makers.

Informed consent in psychotic decompensation
Matea Podgornjak, Lea Hrvat Matić, Anita Stanišić, Ena Gutić, Igor Salopek
European Journal of Bioethics, 20 February 2023
Abstract
The consent of an informed patient is not merely a signature on a legally binding document,  but rather a process in which the patient is empowered and becomes an active ally in a treatment. Valid informed consent includes adequate information that is given to the patient in an appropriate manner, the voluntariness of consent, and the patient’s ability to make a decision regarding treatment. Meeting these conditions when treating patients with mental health disorders can be challenging. Mental disorders can compromise a person’s ability to understand relevant information about the nature of their illness as well as their ability to make decisions regarding treatment. However, a psychiatric diagnosis does not imply that a person is unable to make a decision regarding their treatment, nor does it exclude them as an equal partner in the therapeutic process. By reviewing the case of a 39-year-old patient who developed an acute psychotic disorder during the treatment of COVID pneumonia, we dive into the ethical dilemmas that arise when approaching a patient who is experiencing psychotic decompensation.

Applying the ‘Human Rights Model of Disability’ to Informed Consent: Experiences and Reflections from the SHAPES Project
Richard Lombard-Vance, Evelyn Soye, Delia Ferri, Emma McEvoy, Malcolm MacLachlan, Sari Sarlio-Siintola
Disabilities, 14 January 2023; 3(1) pp 28-47
Abstract
Understanding the complexity of informed consent processes is critically important to the success of research that requires participants to test, develop, or inform research data and results. This is particularly evident in research involving persons experiencing neurodegenerative diseases (e.g., Alzheimer’s disease, dementia) that impair cognitive functioning, who according to national law are considered to have a diminished capacity, or to lack the capacity, to consent to research participation. Those who would potentially benefit most from applied research participation may be excluded from participating and shaping data and outcomes. This article offers insights into challenges faced by the Smart and Healthy Ageing through People Engaging in Supportive Systems (SHAPES) Project in obtaining the consent of older persons, including older persons with disabilities. The promotion of continuing health, active ageing, and independent living is central to SHAPES, requiring project partners to reflect on traditional informed consent approaches to encourage the full, cognisant participation of older persons with disabilities. We examine how this issue may be addressed, with reference to the inclusive approach of SHAPES. In respecting the inalienable legal capacity of all legal persons, SHAPES uses the UN Convention on the Rights of Persons with Disabilities (CRPD) and the human rights model of disability as part of the theoretical framework. A novel, inclusive, representative informed consent framework was designed and is detailed herein. This framework provides significant opportunity to advance the inclusion of persons with disabilities or those experiencing neurodegenerative diseases in innovative research and is readily transferable to other research studies. The SHAPES approach is a substantial contribution to research on informed consent, demonstrating the utility of the human rights model of disability in facilitating the full research participation of target populations.

Reification and assent in research involving those who lack capacity
Anna Smajdor
BMJ, 26 December 2022
Open Access
Abstract
In applied ethics, and in medical treatment and research, the question of how we should treat others is a central problem. In this paper, I address the ethical role of assent in research involving human beings who lack capacity. I start by thinking about why consent is ethically important, and consider what happens when consent is not possible. Drawing on the work of the German philosopher Honneth, I discuss the concept of reification—a phenomenon that manifests itself when we fail to observe or respond to our fellow humans’ need for recognition. I suggest that assent is a way of responding to this moral need for recognition, which exists independently of cognitive capacity. I will look at the circumstances in which consent cannot be obtained from human beings, and ask whether some of the same ethically important considerations that underpin the need for consent might be achieved through seeking assent. I discuss the ways in which this might be beneficial for researchers, for prospective research participants and for society at large.

Assessment of cognitive function among adults aged ≥ 60 years using the Revised Hasegawa Dementia Scale: cross-sectional study, Lao People’s Democratic Republic
Research
Sengchanh Kounnavong, Manithong Vonglokham, Somphou Sayasone, Vanthanom Savathdy, Emiko Masaki, Ryoma Kayano, Bounfeng Phoummalaysith, Boungnong Boupha, Nobuyuki Hamajima
Health Research Policy and Systems, 29 November 2022; 20(121)
Open Access
Abstract
Background
Rapid population ageing remains an important concern for health, social and economics systems; thus, a broader assessment of cognitive decline among adults aged ≥ 60 years is essential. It is important to regularly collect reliable data through validated and affordable methods from people living in different areas and in different circumstances to better understand the significance of this health problem. This study aimed to identify the prevalence of cognitive impairment and the related risk factors by reassessing the scoring of the Revised Hasegawa Dementia Scale among older adults in the Lao People’s Democratic Republic.
Methods
A community-based cross-sectional investigation was conducted in rural and urban settings in six districts of three provinces in the country from January to July 2020. In total, 2206 individuals aged 60–98 years (1110 men and 1096 women) were interviewed in person using a pretested Lao version of the Revised Hasegawa Dementia Scale and the WHO STEPwise approach to noncommunicable disease (NCD) risk factor surveillance (the STEPS survey tool). The adjusted odds ratios (AORs) and 95% confidence intervals (95% CIs) were estimated using a logistic model.
Results
The study found that 49.3% (1088/2206) of respondents (39.7% [441/1110] of men and 59.0% [647/1096] of women) had scores associated with some level of cognitive impairment. In addition to age, the following factors were significantly associated with cognitive impairment: having no formal education (AOR = 9.5; 95% CI: 5.4 to 16.8, relative to those with a university education), living in the northern region of the country (AOR = 1.4; 95% CI: 1.1 to 1.9, relative to living in the central region), living in a rural area (AOR = 1.5; 95% CI: 1.2 to 1.8), needing assistance with self-care (AOR = 1.8; 95% CI: 1.2 to 2.7) and being underweight (AOR = 1.5; 95% CI: 1.1 to 2.2). Factors associated with no cognitive impairment among older adults include engaging in moderate-intensity physical activity lasting for 10 minutes and up to 1 hour (AOR = 0.6; 95% CI: 0.5 to 0.8) and for > 1 hour (AOR = 0.6; 95% CI: 0.4 to 0.8).
Conclusions
Using the Lao version of the Revised Hasegawa Dementia Scale, this study found that more than half of adults aged ≥ 60 years had cognitive impairment, and this impairment was associated with several risk factors. The limitations of this study may include possible overdetection due to the cutoff point for the assessment of cognitive decline used in the Revised Hasegawa Dementia Scale, given that the participants were not familiar with the instrument. However, the study results can be used to help inform health policy in the Lao People’s Democratic Republic regarding the urgent need for a routine data collection system and for providing an environment that addresses and reduces the identified risk factors for cognitive decline to mitigate their impact.

Capacity to Consent of People with Dementia: a Narrative Review from an Ethical Perspective
Urfa Khairatun Hisan, Nurul Qomariyah, Kristina Elizabeth
Jurnal Profesi Medika, 2022
Abstract
People with dementia have impairment to execute daily life activities by presenting as a deterioration of mental processes, such as memory, thinking, reasoning, and judgment. Many participants in dementia research may lack the capacity to provide informed consent. Additional safeguards are needed for dementia research participants’ protection because of their vulnerability. Only after carefully weighing the risks and possible benefits for the participants in the research may it be decided to use vulnerable participants. The intention to prevent harm pushes against the removal of autonomy. This dilemma is the driving force behind this article’s narrative review of the capacity to consent problems in dementia research. For this critical narrative review, we conducted a thorough search of Scopus, PubMed, and Wiley Open Library for literature addressing the ethical and legal issues on the capacity to consent of people with dementia. We outline the dilemmas and difficulties that surround them including the related ethical principles, the informed consent process, capacity to consent, and safeguards for the participant in research involving people with dementia.

Editor’s note: Jurnal Profesi Medika is an Indonesian journal published by by the Faculty of Medicine UPN Veteran Jakarta

Importance of decisional capacity tools in obtaining informed consent in clinical settings
Original Article
Miroslav Radenković
Bioethics, 24 November 2022
Open Access
Abstract
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.

Working in a gray area—Healthcare staff experiences of receiving consent when caring for persons with dementia
Dementia, 15 November 2022
Research Article
Lena Östlund, Marie Ernsth Bravell, Linda Johansson
Abstract
Background
Every person has the right to autonomy, and to be involved in decisions about their care. When persons with dementia have difficulties in expressing what they want, their autonomy is challenged. Staff should strive to involve the person in care decisions, to obtain consent and to avoid the use of coercion and restraints. However, care without consent exists and coercion and restraints are being used. In order to improve care, further knowledge is warranted.
Aims
The purpose of this study was to explore staff’s experiences of obtaining consent when caring for persons with dementia.
Methods
In total 14 focus group interviews were conducted with staff with experience of dementia care who work in either home care or residential care in Sweden. An inductive qualitative content analysis was used to analyze the collected data.
Results
Three categories were generated describing staff experiences of consent in dementia care: the person as the decision-maker, the staff as the decision-makers, and the viability of the consent. Overall, staff found it difficult to know if they really had consent from the individual. Even if the person verbally gave consent, it was challenging to know if the person really understood what they had consented to. Common to all three categories was the significance of the relationship between the person with dementia and staff: getting to know the person, recognizing the person’s response in terms of their facial expressions and body language as well as being able to explain and justify specific actions to the person.
Conclusion
Staff need better conditions in dementia care, including training and time to reflect on how to obtain consent. A person-centered approach can be one way to develop care and ensure that persons with dementia are allowed autonomy and to share in making decisions.