From autonomy to guardianship: Policy reviews medical decision-making options

by Dennis Z. Kuo, M.D., M.H.S., FAAP, and Renee M. Turchi, M.D., M.P.H., FAAP 

When youth with intellectual and/or developmental disabilities (IDD) reach the age of majority (typically age 18), they may need support in making medical decisions.

The process of pursuing alternative decision-making supports, including guardianship, is stressful for youth and caregivers.

The new AAP policy statement Considerations for Alternative Decision Making When Transitioning to Adulthood for Youth With Intellectual and Developmental Disabilities provides guidance for pediatricians to support conversations with youth and their caregivers.

Pediatricians are encouraged to uphold human rights and human dignity for youth with IDD. These youth have the right to be recognized as persons before the law and to enjoy legal capacity in all aspects of life on an equal basis with individuals without disabilities, according to the United Nations Convention on the Rights of Persons with Disabilities.

The policy, from the Council on Children with Disabilities and the Committee on Medical Liability and Practice Management, is available at https://doi.org/10.1542/peds.2024-066841 and will be published in the June issue of Pediatrics.

Continuum of support

Approximately one in six children (17%) between the ages of 3 and 17 years has a developmental disability (Zablotsky B, et al. Pediatrics. 2019;144:e2019081).

When these youth reach the age of majority, their ability to make health care decisions falls on a continuum from being fully autonomous to needing guardianship (legally recognized, fully substituted decision-making). In addition, states may recognize levels of supported decision-making in between these two extremes for individuals who are not fully incompetent but need assistance to make some decisions.

Youth are presumed to have the capacity to make decisions until proven otherwise, and balancing autonomy with appropriate supports is paramount. Pediatricians are encouraged to be familiar with local resources supporting youth with IDD and their autonomy, which may vary substantially by state (http://www.supporteddecisionmaking.org/).

Individuals with IDD who use supported decision-making report increased confidence in themselves and their decision-making, improved decision-making skills, increased engagement with their community and more control of their lives.

Support teams (including the youth, caregivers, teachers and pediatricians) should engage in transition planning, ideally starting between 12 and 14 years of age, to identify and develop resources to support the maturing youth’s capacity for independent decision-making.

If fully autonomous decision-making is not considered appropriate at the age of majority, the pediatrician is encouraged to raise consideration of alternative decision-making supports early enough to allow the youth and caregiver to consider different levels of supports available to them. The goal should be the least restrictive alternative, while preserving the youth’s human rights and human dignity and promoting autonomy.

The policy statement describes terms, concepts and legal requirements to help families navigate health care transition for youth with IDD. Such concepts include:

• supported decision-making, e.g., choosing a trusted person to attend medical appointments and talk through treatment options;
• other less restrictive alternatives, e.g., allowing a caregiver to access the youth’s medical record;
• health care power of attorney, a legal document that gives someone the right to make health care decisions for someone else in specified circumstances; and
• guardianship, a legal process that is the most-restrictive option when the youth is deemed unable to make decisions.

Key recommendations

• Preservation of human rights and human dignity for all youth is essential while promoting patients’ autonomy.
• Pediatricians should advocate for the least restrictive decision-making environment for their patients.
• Pediatricians can promote and support the developing autonomy of all patients by engaging them in conversations about care decisions while accounting for the youth’s intellectual or developmental ability to express preferences and understand decisions about different aspects of their care.
• Pediatricians can be aware of different levels of decision-making support for youth and partner with care teams, legal advocates, families and youth in determining the right types of support needed. They also can be familiar with local and state resources supporting disability and autonomy for youth with IDD, including medical-legal partnerships, and refer when appropriate.

Dr. Kuo and Dr. Turchi are lead authors of the policy statement and members of the AAP Council on Children with Disabilities.

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From autonomy to guardianship: Policy reviews medical decision-making options