Exploring the Ethical and Moral Implications of Requiring Informed Consent to Determine Death by Neurologic Criteria

Exploring the Ethical and Moral Implications of Requiring Informed Consent to Determine Death by Neurologic Criteria
Matthew J. Hibbs, Morgan C. Arnold, Mark S. Beveridge
Journal of Pain and Symptom Management, May 2023; 65(5)
The American Academy of Pediatrics published guidelines in 1987 providing criteria for the declaration of brain death for children. Multiple societies, including neurology and critical care, renewed these guidelines in 2011 to further standardize the brain-death exam. Despite clear guidelines, laws regarding brain death vary among states, including whether consent is required to perform neurologic testing.
To examine the role of parental consent in brain-death testing from an ethicolegal perspective as well as its potential to create clinician distress.
Case report
Patient is a 3-year-old, previously healthy male who suffered a tragic submersion injury requiring prolonged cardiopulmonary resuscitation. During the subsequent hospitalization, his clinical exam, head CT scan, and electroencephalogram demonstrated devastating, irreversible neurologic injury concerning for brain death. The family refused formal brain-death testing, instead requesting more time to allow for a miraculous recovery. The patient remains on life support after 5 weeks and is beginning to experience multiorgan dysfunction.
Many physicians feel that brain-death testing should not require parental consent. Despite this, states vary in their requirements for parental consent for brain-death testing. When legally permissible, there are competing ethical principles governing a family’s request to delay or refuse brain-death testing.The principle of informed consent reflects the culture change from a paternalistic physician-patient relationship to a collaborative, family-centered approach. However, the argument remains that brain-death testing offers no therapeutic benefit and has the potential to cause harm via apnea testing, thereby requiring informed consent. This case presentation will illustrate the varied legal landscape surrounding pediatric brain-death testing, the ethical principles involved, and the moral injury that can result.

Informed Consent, Assent, and Confidentiality

Informed Consent, Assent, and Confidentiality
Book Chapter
Eron Linver
Caring for the Hospitalized Child, May 2023 [American Academy of Pediatrics]
Informed consent is defined as the voluntary agreement of an individual or their authorized representative who has the legal authority to give such agreement. This consent must be exercised within the context of free choice, without any application of inducement or coercion. To give informed consent, an individual must have sufficient knowledge and understanding to be able to make a knowledgeable decision. Health care providers may have a different level of education and understanding than patients and their guardians. This knowledge gap can add complexity and potential misunderstandings to conversations surrounding informed consent…

Consent for the paediatric patient

Consent for the paediatric patient
Andrew Jones, James Hyde, Sharon Lee, Sondos Albadri, Laura Gartshore
Faculty Dental Journal, 1 April 2023; 14(2)
Obtaining valid consent is a fundamental process in dentistry. Written consent must be obtained where treatment involves conscious sedation or general anaesthesia. For children, consent may be provided by a person with parental responsibility (PR).
A retrospective evaluation was completed of 160 children over 2 UK hospital sites with paediatric services. Cases involving conscious sedation or general anaesthesia for dental treatment were selected. Data were obtained to establish whether it was documented that the correct person had provided consent for a child and whether all possible individuals with PR for the child were identified at the initial visit. UK national legislation and guidance was reviewed, from which a PR form (to determine PR status for a child) was created and implemented. A second evaluation was subsequently completed, again with 160 children.
Combined data from both sites confirmed documentation of an appropriate person providing consent in 127 cases (79%) in the first evaluation. This improved to 155 cases (97%) following implementation of the PR form. All possible individuals who had PR for the child were identified at the initial visit in 35 cases (22%). This improved to 139 cases (87%) following the introduction of the PR form.
Use of a PR form improved documentation regarding valid consent for children.

Editor’s note: This is a publication from the Royals College of Surgeons England.

Parents’ and child welfare workers’ understandings of consent to emergency placements

Parents’ and child welfare workers’ understandings of consent to emergency placements
Research Article
A.S. Storhaug, M.K. Fylkesnes, E. Langsrud, Ø. Christiansen
Nordic Social Work Research, 22 March 2023
Emergency placements of children are often made in haste and experienced as dramatic. This article is based on interviews with 9 parents who have consented to emergency placements and their caseworkers. We explore parents’ reasons for giving their consent to placement and the child welfare workers’ understanding of these consents. This leads to a discussion of what constitutes valid consent from parents in emergency cases. Relational autonomy is applied as a perspective to understand the context and influencing factors of parental consent. The results, derived by thematic analysis, show three main themes regarding parents’ reasons for their consent: (1) The child wanted to move out, (2) the parents couldn’t manage the situation, and (3) parents felt the child welfare service (CWS) gave them no choice. Parents experience a high degree of pressure in the context of giving their consent, either from their child or the CWS. Asymmetrical power dynamics between the CWS and parents were highly present and relevant in parents’ reasons for consent, especially when the CWS communicated that the alternative to consent is coercive placement. Furthermore, it is often unclear to the parents what consent entails. This is especially evident through CWS’s regulation of child-parent contact. In the discussion, we emphasize a high degree of awareness on the part of CW workers with regards to understanding how contextual and relational factors influence parent’s choice to consent; when consent is valid; how far consent extends, and the potential weakening of parents’ legal security when a voluntary placement is conducted.

Perceptions of pediatric deceased donor consent: A survey of organ procurement organizations

Perceptions of pediatric deceased donor consent: A survey of organ procurement organizations
Gretchen B Chapman, Alison Butler, Mandy Lanyon, Justin Godown, Daniel J Lebovitz
Pediatric Transplant, 21 March 2023
Children awaiting transplantation face a high risk of waitlist mortality due to a shortage of pediatric organ donors. Pediatric donation consent rates vary across Organ Procurement Organizations (OPOs), suggesting that some OPOs might utilize more effective pediatric-focused donor recruitment techniques than others. An online survey of 193 donation requestor staff sheds light on the strategies that OPO staff utilize when approaching potential pediatric deceased organ donors.
In collaboration with the Association of Organ Procurement Organizations, the research team contacted the executive directors and medical directors of all 57 of the OPOs in the US. Of these, 51 OPOs agreed to participate, and 47 provided contact information for donation requestor staff. Of the 379 staff invited to participate in the survey, 193 provided complete responses.
Respondents indicated more comfort approaching adult donors than pediatric donors, and they endorsed approach techniques that were interpersonal and emotional rather than professional and informative. Respondents were accurate in their perceptions about which donor characteristics are associated with consent. However, respondents from OPOs with high consent rates (according to data from the Scientific Registry of Transplant Recipients), and those from OPOs with low consent rates were very similar in terms of demographics, training, experience, and reported techniques.
Additional research is needed to better determine why some OPOs have higher consent rates than others and whether the factors that lead to high consent rates in high-performing OPOs can be successful when implemented by lower-performing OPOs.

Children’s ages of consent to non-urgent heart surgery: The views of two paediatric cardiology teams

Children’s ages of consent to non-urgent heart surgery: The views of two paediatric cardiology teams
Original Article
Priscilla Alderson, Hannah Bellsham-Revell, Liz King, Trisha Vigneswaran, Jo Wray
Children & Society, 4 March 2023
Open Access
Paediatric cardiology practitioners and related experts report unusually young ages when they begin to inform children about their non-urgent heart surgery and begin to respect children’s consent or refusal. Research methods included observations in two paediatric cardiology units, audio-recorded interviews with 45 experts, and qualitative data analysis. Significantly younger ages were cited than are usually recommended in the clinical and legal literature. Interviewed practitioners took seriously children’s consent to or refusal of a heart transplant from around 6 years, and a child’s firm refusal of induction of anaesthesia from around 4 years, when surgery might be postponed.

Prioritizing choice and assent in the assessment and treatment of food selectivity

Prioritizing choice and assent in the assessment and treatment of food selectivity
Holly C. Gover, Gregory P. Hanley, Kelsey W. Ruppel, Robin K. Landa, Juliana Marcus
International Journal of Developmental Disabilities, 1 February 2023; pp 53-65
Food selectivity affects up to 72% and 45% of individuals with and without disabilities, respectively, and there is a need for interventions that rely on positive, unrestrictive strategies. We evaluated an assessment and treatment package for food selectivity for young children with developmental disabilities that prioritized caregiver collaboration, client autonomy, and did not rely on restrictive procedures (e.g. escape extinction). The process involved: (a) collaborating with caregivers on the selection of foods and design of the children’s functional analyses; (b) indirectly and directly measuring food preferences prior to treatment; (c) evaluating the sensitivity of mealtime problem behavior to environmental variables through an interview-informed synthesized contingency analysis (IISCA); and (c) incorporating the assessment results into a progressive treatment process consisting of choice-making opportunities and differential reinforcement of successive approximations to consumption. Children also had the ability to opt in and out of treatment sessions. The treatment was effective in increasing consumption of nonpreferred foods and successfully extended to caregivers. Practical implications and directions for future research are discussed.

Adolescent Self-Consent for COVID-19 Vaccination: Views of Healthcare Workers and Their Adolescent Children on Vaccination Autonomy

Adolescent Self-Consent for COVID-19 Vaccination: Views of Healthcare Workers and Their Adolescent Children on Vaccination Autonomy
Original Article
Jeanne R. Delgado, Lisa N. Mansfield, Katia Bruxvoort, Mayra Macias, Joseph Grotts, Bruno Lewin, David Bronstein, Corrine Munoz-Plaza, Peter Szilagyi, John Chang, Kristen Choi
Journal of Adolescent Health, 10 February 2023
This study explored the perceptions of healthcare worker parents (physicians, nurses, and staff) and their adolescents (aged 12–17 years) on adolescent self-consent to COVID-19 vaccination by applying the concept of positive deviance of those already vaccinated against COVID-19.
We used a qualitative descriptive design to conduct individual, semi-structured interviews with COVID-19–vaccinated healthcare workers in Southern California and their vaccinated adolescent children. Separate interviews were conducted with parents and adolescents from November to December 2021 using digital phone conferencing software. All interviews were recorded and transcribed. Thematic and constant comparative analysis techniques were used to identify relevant themes and subthemes.
Twenty one healthcare workers (9 nurses, one nurse practitioner, one technologist, and 10 physicians) and their adolescents (N = 17) participated. Three overarching themes were identified to describe participants’ perspectives about adolescent self-consent for COVID-19 vaccination: (1) Family values and practices around adolescent vaccination; (2) Differences in parent and adolescent support for vaccine self-consent laws; and (3) Parent and adolescent uncertainty on readiness for vaccine self-consent laws. Adolescents largely supported self-consent while parents supported the policy if they would be able to have a discussion with their adolescent prior to the decision.
Parents and adolescents supported adolescent self-consent for COVID-19 vaccination, with the reservation that adolescents should discuss the decision alongside their parents to exercise their medical autonomy with supportive guidance. Greater adolescent involvement in making decisions and providing self-consent for healthcare, including vaccines, could prepare adolescents to have a greater sense of autonomy over their health and contribute to population health measures.

Consent Rights of Gender Diverse Children in Australia and the United Kingdom: Will the Court’s Involvement End?

Consent Rights of Gender Diverse Children in Australia and the United Kingdom: Will the Court’s Involvement End?
Jacko G
Journal of law and Medicine, 1 December 2022; 29(4) pp 1269-1287
Gender diversity allows individuals to express their innate sense of self and has been increasingly recognised over time. Consequently, paediatric gender services have seen exponential increases in referrals internationally. This has resulted in novel issues for courts, such as a child’s “best interests” when accessing puberty-suppressing and gender-affirming medical care. Most recently, in the United Kingdom, the adequacy of information provided to transgender children and their families was also debated. Progression of the common law in Australia has resulted in transgender children consenting to medical treatment once Gillick competent. Yet, Bell v Tavistock [2020] EWHC 3274 temporarily halted the care of the United Kingdom’s transgender children, who were previously afforded consenting rights. On appeal it was determined to be inappropriate for the divisional court to have provided generalised guidance on children’s capacity to consent to medical therapy. Through comparative analysis of case law, the adequacy of these regulations will be assessed.

Children and bioethics: clarifying consent and assent in medical and research settings

Children and bioethics: clarifying consent and assent in medical and research settings
Invited Review
Merle Spriggs
British Medical Bulletin, 8 December 2022
Open Access
The concept of consent in the pediatric setting is complex and confusing. Clinicians and researchers want to know whose consent they should obtain, when a child can provide independent consent and how that is determined. The aim of this article is to establish what produces the justification to proceed with medical or research interventions involving children and the role of consent in that. I clarify concepts such as consent, assent, capacity and competence.
Source of data
Literature review.
Areas of agreement
Engaging with children and involving them in decisions about matters that affect them is a good thing. Areas of controversy: The role of competence or capacity and the question of when a child can provide sole consent.
Growing points
Flawed assumptions around competence/capacity.
Areas for developing research
An account of children’s well-being that accommodates children’s interests during the transition to adulthood.