Incorporating parental values in complex paediatric and perinatal decisions
Rosa Geurtzen, Dominic J C Wilkinson
The Lancet – Child & Adolescent Health, 11 January 2024
Summary
Incorporating parental values in complex medical decisions for young children is important but challenging. In this Review, we explore what it means to incorporate parental values in complex paediatric and perinatal decisions. We provide a narrative overview of the paediatric, ethics, and medical decision-making literature, focusing on value-based and ethically complex decisions for children who are too young to express their own preferences. We explain key concepts and definitions, discuss paediatric-specific features, reflect on challenges in learning and expressing values for both parents and health-care providers, and provide recommendations for clinical practice. Decisional values are informed by global and external values and could relate to the child, the parents, and the whole family. These values should inform preferences and assure value-congruent choices. Additionally, parents might hold various meta values on the process of decision making itself. Complex decisions for young children are emotionally taxing, ethically difficult, and often surrounded by uncertainty. These contextual factors make it more likely that values and preferences are initially absent or unstable and need to be constructed or stabilised. Health-care professionals and parents should work together to construct and clarify values and incorporate them into personalised decisions for the child. An open communication style, with unbiased and tailored information in a supportive environment, is helpful. Dedicated training in communication and shared decision making could help to improve the incorporation of parental values in complex decisions for young children.
Year: 2024
Adolescent assent in research: a relational ethics approach
Adolescent assent in research: a relational ethics approach
Case Study
Happy Indri Hapsari, Mei-Chih Huang
Indian Journal of Medical Ethics, October-December 2023
Open Access
Abstract
Researchers often neglect adolescents’ willingness to participate in research. The granting of permission by parents is sometimes not in accordance with the unwillingness of adolescents. Relational ethics is the right approach to overcome inconsistencies between legal and ethical agreements in granting parental permission and adolescent’s assent. This is because relational ethics is based on building relationships among many parties. The focus of this case study is to improve understanding of the assent of adolescents through intensive study of research conflict, reinforced using existing research and to understand how relational ethics can be used as an approach in decision making, especially in conflicts between parental permission and assent from adolescents.
Are Psychedelic Experiences Transformative? Can We Consent to Them?
Are Psychedelic Experiences Transformative? Can We Consent to Them
Brent M. Kious, Andrew Peterson, Amy L. McGuire
Perspectives in Biology and Medicine, 20 February 2024; pp 143-154
Abstract
Psychedelic substances have great promise for the treatment of many conditions, and they are the subject of intensive research. As with other medical treatments, both research and clinical use of psychedelics depend on our ability to ensure informed consent by patients and research participants. However, some have argued that informed consent for psychedelic use may be impossible, because psychedelic experiences can be transformative in the sense articulated by L. A. Paul (2014). For Paul, transformative experiences involve either the acquisition of knowledge that cannot be obtained in any other way or changes in the self. Either of these characteristics may appear to undermine informed consent. This article argues, however, that there is limited evidence that psychedelic experiences are transformative in Paul’s sense, and that they may not differ in their transformative features from other common medical experiences for which informed consent is clearly possible. Further, even if psychedelic experiences can be transformative, informed consent is still possible. Because psychedelic experiences are importantly different in several respects from other medical experiences, this article closes with recommendations for how these differences should be reflected in informed consent processes.
Giving Consent to the Ineffable
Giving Consent to the Ineffable
Original Paper
Daniel Villiger
Neuroethics, 15 February 2024; 17(11)
Open access
Abstract
A psychedelic renaissance is currently taking place in mental healthcare. The number of psychedelic-assisted therapy trials is growing steadily, and some countries already grant psychiatrists special permission to use psychedelics in non-research contexts under certain conditions. These clinical advances must be accompanied by ethical inquiry. One pressing ethical question involves whether patients can even give informed consent to psychedelic-assisted therapy: the treatment’s transformative nature seems to block its assessment, suggesting that patients are unable to understand what undergoing psychedelic-assisted therapy actually means for them and whether it aligns with their values. The present paper argues that patients often have sufficient knowledge to give informed consent because they know that they want to change their negative status quo and that psychedelic-assisted therapy offers an effective way to do so. Accordingly, patients can understand what the transformative nature of psychedelic-assisted therapy means for them and a make a value-aligned choice even if they are unable to anticipate the manifestation of a psychedelic experience.
Barriers and Facilitators of Surrogates Providing Consent for Critically Ill Patients in Clinical Trials. A Qualitative Study
Barriers and Facilitators of Surrogates Providing Consent for Critically Ill Patients in Clinical Trials. A Qualitative Study
Original Research
Dustin C. Krutsinger, Shannon I. Maloney, Katherine R. Courtright, Karsten Bartels
Chest, 20 February 2024
Abstract
Background
Enrollment into critical care clinical trials is often hampered by the need to rely on surrogate decision-makers. To identify potential interventions facilitating enrollment into critical care clinical trials, a better understanding of surrogate decision-making for critical care clinical trial enrollment is needed.
Research Question
What are the barriers and facilitators of critical care trial enrollment? What are surrogate decision makers’ perspectives on proposed interventions to facilitate trial enrollment?
Study Design and Methods
The authors conducted semi-structured interviews with 20 surrogate decision-makers of critically ill patients receiving mechanical ventilation. The interviews were recorded and transcribed verbatim, and analyzed for themes using an inductive approach.
Results
Twenty surrogate decision-makers of critically ill patients participated in the semi-structured interviews. Thematic analysis confirmed previous research showing that trust in the system, assessing the risks and benefits of trial participation, the desire to help others, and building medical knowledge as important motivating factors for trial enrollment. Two previously undescribed concerns among surrogate decision makers of critically ill patients were identified, including the potential to interfere with clinical treatment decisions and negative sentiment about placebos. Surrogates viewed public recognition and charitable donations for participation as favorable potential interventions to encourage trial enrollment. However, participants viewed direct financial incentives and prioritizing research participants during medical rounds negatively.
Interpretation
This study confirms and extends previous findings that health system trust, study risks and benefits, altruism, knowledge generation, interference with clinical care and placebos are key concerns and barriers for surrogate decision-makers to enroll patients in critical care trials. Future studies are needed to evaluate if charitable giving on the patient’s behalf and public recognition are effective strategies to promote enrollment into critical care trials.
A survey on service users’ perspectives about information and shared decision‐making in psychotropic drug prescriptions in people with intellectual disabilities
A survey on service users’ perspectives about information and shared decision‐making in psychotropic drug prescriptions in people with intellectual disabilities
Original Research
Gerda de Kuijper Josien Jonker, Rory Sheehan, Angela Hassiotis
British Journal of Learning Disabilities, 1 February 2024
Open Access
Abstract
Background
In people with intellectual disabilities and mental disorders and/or challenging behaviours, rates of psychotropic drug prescription are high. In clinical treatments and evaluations, all stakeholders should be involved in a process of shared decision-making (SDM). We aimed to investigate the perspectives of clients and their carers on clients’ treatments with psychotropic drugs.
Methods
We conducted a survey among adults with intellectual disabilities in a Dutch mental healthcare centre providing community, outpatient and inpatient care. Data were collected between January and June 2022. Questions focused on experiences with the provision of information, treatment involvement and SDM and participants’ wishes in this regard.
Findings
Respondents (57 clients and 21 carers) were largely satisfied with the overall care from their clinicians, and with how information on the pharmacological treatment was provided verbally, but written information was insufficient or not provided. Seventy per cent of clients and 60% of carers reported being involved in medication decision-making. However, over 75% of participants desired greater involvement in SDM and over 60% in medication reviews.
Conclusions
Service users and representatives were satisfied about the treatment and verbal information on their psychotropic drug use. The provision of written information, the SDM process and ongoing evaluation of psychotropic medication use could be improved.
Effect of enhanced informed consent on veteran hesitancy to disclose suicidal ideation and related risk factors
Effect of enhanced informed consent on veteran hesitancy to disclose suicidal ideation and related risk factors
Original Article
Brock C. Tucker, Vivian M. Gonzalez
Suicide and Life-Threatening Behavior, 12 February 2024
Abstract
Introduction
The concealment of suicidal ideation (SI) constitutes a significant barrier to reducing veteran deaths by suicide and is associated with fear of negative consequences (e.g., involuntary hospitalization). This study examined whether augmenting informed consent with psychoeducation aimed to help patients achieve a more realistic risk appraisal of consequences associated with disclosure of SI, decreased hesitancy to disclose SI, and related risk behaviors among U.S. veterans.
Method
Participants (N = 133) were recruited from combat veteran social media groups and were randomly assigned to a video simulated treatment-as-usual informed consent (control) or to one of two psychoeducation-enhanced informed consent conditions (psychoed, psychoed + trust).
Results
Compared with the control group, participants in both psychoeducation and enhanced informed consent conditions reported lower hesitancy to disclose SI, firearm access, and problems with drugs/thoughts of harming others, as well as greater trust and respect for the simulated clinician.
Conclusions
These findings suggest that brief psychoeducation regarding common factors that affect hesitancy to disclose SI may be beneficial for increasing trust in providers during the informed consent process and decreasing concealment of SI and firearm access among veterans.
P50: Looking for the best: Video vs written informed consent in coronary angiography procedures
P50: Looking for the best: Video vs written informed consent in coronary angiography procedures
Ines Testoni, Francesca Lampis, Erika Iacona, Roberto Valle, Gabriele Boscolo, Diego De Leo
Cambridge University Press, 2 February 2024
Abstract
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Background
Informed consent practices in healthcare are a fundamental element of patient-centred care; however, the traditional written description of the medical procedure for obtaining informed consent seems to have several limitations.
Aim
This research aimed to evaluate the effects of an alternative method of obtaining informed consent, based on a short informative video for patients waiting to undergo a coronary angiography procedure in Italy.
Methods
The study involved 40 participants, 28 males and 12 females (mean age: 68.55, SD = 13.03), equally divided into two groups, one that received video informed consent and the other the traditional written one. Each group was asked to fill out two questionnaires, one created ad hoc by the authors to measure the level of understanding of the information provided and the perception of usefulness of informed consent, and the other the DASS-21 scale, able to assess anxiety, depression and stress levels.
Results
Comparing the results of the two groups showed that informed consent via video enabled participants to better understand the information provided, as well as feel more confident in their subjective understanding of it, while perceiving informed consent via video as more useful than the traditional one. Video informed consent did not lead to higher levels of anxiety, depression, or stress among participants.
Conclusion
It can be hypothesized that video formats could represent a more useful and understandable alternative to traditional informed consent in the coronary angiography procedure sector.
Informed consent-patients’ understanding of risk
Informed consent-patients’ understanding of risk
Wijohn TR, Newcombe RM, Reynolds J, El-Jack S, Armstrong GP
The New Zealand Medical Journal, 23 February 2024; 137(1590) pp 14-21
Abstract
Aims
The central concept of informed consent is communication of the chance of a successful outcome. The risks and benefits are probabilistic concepts derived from populations; they do not map with any certainty to the individual. We tested patients’ comprehension of basic probability concepts that are needed for informed consent.
Methods
Patients (n=478) completed five questions designed to test risk estimates that are relevant to informed consent. The questions posed non-medical scenarios to avoid patients associating them with their clinical care. The questionnaire was in English and was only offered to patients whose nurse felt that they had sufficient English literacy to understand the questions.
Results
Out of a possible total of five correct answers, Asian patients scored lowest, and significantly less than Pākehā/Europeans (average total score 2.6±1.7 vs 3.6±1.4, p<0.001, 95% confidence interval 0.5 to 1.38). The total score for Māori/Pasifika was intermediate (3.2±1.4), yet they had the lowest deprivation index. This discordant finding may be due to poorer English literacy among Asian participants. On multiple linear regression, Asian ethnicity and advancing age were the independent predictors of a low score. Socio-economic deprivation decile and sex were not.
Conclusions
When answering questions constructed according to best practice, many (but not all) patients have reasonable risk comprehension. Further improvement could target older patients, those of Asian ethnicity and probably all patients where English is a second language. Liberal use of interpreters is suggested.
Macro and micro ethics in fetal and embryological collections: Exploring the paradigms of informed consent among Australian education-focused stakeholders
Macro and micro ethics in fetal and embryological collections: Exploring the paradigms of informed consent among Australian education-focused stakeholders
Joyce El-Haddad, Nalini Pather
Anatomical Sciences Education, 12 February 2024
Abstract
The management of human fetal and embryological collections presents an ethical challenge that can be explored from different perspectives, particularly when considering informed consent. The “micro ethics” level focuses on parties engaged in giving and receiving human tissue while the “macro ethics” level focusses on the collective responsibility of the discipline and society. Additionally, adopting a framework, where ways of working are designed with relevant communities, requires understanding the perspectives of individuals, communities, and organizations. The aim of this study therefore was to assess the perceptions of education-focused Australian stakeholders. A survey collected the perspectives of 198 participants. The majority of participants (61.6%; n = 122/198) indicated that human fetal and embryological remains obtained prior to era of informed consent should be retained for use in education/research. It is likely that their perspective is based on the notion that if human fetal and embryological collections are used for good, then disposing of them would deny this benefit. Women (p < 0.001) indicated a preference for obtaining fetuses and embryos with informed consent for education and research (38.4%; n = 76/198). Majority were in favor of recording both maternal (MI) (59.6%; n = 118/198) and paternal information (PI) (58.1%; n = 115/198) with each donation. Majority (56.1%; n = 111/198) expressed that donations should be accepted from both parental sources. Consideration of stakeholder perspectives is important in developing guidelines regarding these collections. The results from this study demonstrate a level of discomfort with respect to collections without informed consent, which should be considered at the macro ethical and micro ethical level.