Q&A: How to handle nondisclosure requests from parents of seriously ill children
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Key takeaways:
- Health care teams usually support involving children in conversations about their diagnosis and prognosis.
- In most cases, parents have the legal authority to make decisions for their children.
What happens when a parent asks a clinician not to disclose to their child that the child has a serious illness?
The AAP published new guidance from its Committee on Bioethics in Pediatrics that addresses how to approach parental requests for nondisclosure.
We spoke with Sara Taub, MD, MBE, FAAP, an associate professor of pediatrics in the divisions of palliative care and general pediatrics at Oregon Health and Science University, about the guidance and the ethical questions involved in these situations.
Healio: What prompted this report?
Taub: Several years ago, members of the AAP Committee on Bioethics, upon discussing some works in the adult literature on the topic of disclosure, recognized that the AAP should have a statement on this topic for the world of pediatrics. Indeed, within the sphere of pediatric medicine, there are unique obligations, dynamics and nuances that deserve consideration.
Healio: How should medical teams handle a parental request not to disclose an illness to their child?
Taub: A first step is to recognize that there are many reasons why parents may initially favor nondisclosure. The news of a serious illness in a child can be devastating to families, who naturally feel protective. Therefore, medical teams should approach a request for nondisclosure with curiosity and sensitivity: What are family members’ concerns surrounding disclosure? What are the family’s interrelationship dynamics?
From there, medical teams should offer education around possible implications and harms of nondisclosure and reasons why health care teams usually support involving children in conversations around their diagnosis and prognosis in a developmentally appropriate fashion.
Where there is disagreement, it may be feasible to find common ground by acknowledging that disclosure need not be all or nothing and negotiating what information will be provided, by whom, and how. Support around this process can come in various forms from offering to share agreed upon information in the presence of family, to coaching a family member around some language to use, to inviting other community supports to be part of the process.
Family dynamics, cultural preferences, age and developmental status of the child, along with level of inquisitiveness, severity and impact of the medical condition are all factors that should be taken into consideration at each step of this process — with an eye toward respect and harm reduction.
If disagreements persist and there is a perceived professional obligation to disclose, health care teams should still endeavor to partner with families regarding how the disclosure will be handled. And supports will be important across the board because distress is likely to ensue in these circumstances.
Healio: What are the ethical and legal considerations involved in this situation?
Taub: The report aims to provide pediatricians with practical guidance to navigate differences that may arise between health care teams and families. The ethical questions at the heart of this situation are:
- How should health care teams proceed when professional obligations — here toward honesty and truth-telling — are in tension with requests and preferences of the families they serve?
- What happens when there are conflicting perceptions of what is in the best interest of a child to know or not to know?
- What are the limits around parental discretion in making decisions on behalf of their child?
- Who should decide how children, who have not yet achieved decision-making capacity, should be involved in their medical care?
Legal considerations are only addressed in the report as they are adjacent to its scope. In a majority of cases, parents or guardians have the legal authority to make treatment decisions for their children. There is no statute, however, that would categorically support parental demand for nondisclosure.
On the flip side, it is not clear what the legal implication of acceding to a parental request for nondisclosure could be. In the absence of legal precedent and with conflicting pressures to withhold or disclose, the report encourages striving to find common ground and build alignment.
Healio: What are some common illnesses or diseases where this might come up?
Taub: Some illnesses that come to mind for which conversations around disclosure might arise include cancer — particularly types of cancer considered more serious for their grueling treatment regimens or poor prognoses; degenerative neurological conditions, like juvenile Huntington’s disease or Duchenne muscular dystrophy; and genetic or metabolic conditions like adrenoleukodystrophy. These are not common, although those of us who work with seriously ill children see them. Progression of lung, liver, intestinal, heart or kidney disease — to name some — toward organ failure might also raise these questions.
Healio: What other guidance does the committee offer in the article?
Taub: The article offers concrete strategies for how to partner with patients, with parents, with interdisciplinary members in the health care team and/or community to constructively navigate circumstances where there may be disagreement surrounding requests for nondisclosure of information. The goal is to try to find a path forward that all at once respects the interests of the patient, the values of the family and the obligations of the health care team.
The report recognizes that cases where there is a request for nondisclosure may result in moral distress for medical staff and acknowledges the importance of having structures for these concerns to be shared in a safe and supportive environment. If disclosure must happen despite a family’s request for nondisclosure, there should still be attempts at partnering so that the family has some control around how it happens.
References:
Taub S, et al. Pediatrics. 2023;doi: 10.1542/peds.2023-063754.
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