Facilitating Autonomy and Understanding: Engaging Adults with Autism in Serious Illness Decision-Making

Key Message : This case highlights the challenges of complex medical decision-making for adults with autism spectrum disorder, emphasizing the role of Palliative Care in assessing decision-making capacity, supporting autonomy, and facilitating goal-concordant care. We explore communication strategies and ethical considerations to promote equitable cancer care for neurodiverse individuals.

Abstract:

Background:
Early-stage prostate cancer is a condition that can be effectively treated to prevent progression and subsequent morbidity and mortality (1). Adults living with autism spectrum disorder (ASD) represent an aging population in the United States with increasing need for invasive diagnostics and medical treatments. Although multiple validated tools exist for advance care planning (ACP) in patients with serious illness, none have been validated in neurodivergent populations, who face distinct communication and cognitive challenges. While much literature addresses ACP for these patients, little focuses on ACP with them.

Case Example:
We present the case of an adult man with ASD who was referred to the Palliative Care clinic for assistance with complex decision-making and advance care planning after deferring treatment for early-stage prostate cancer. The referral was prompted by concerns about his decision-making capacity and his ability to weigh risks and benefits in the context of his neurodevelopmental condition.

Discussion:
Through our consultation, we identified strategies for engaging neurodivergent adults in medical decision-making (2,3). Key approaches included avoiding abstract language, incorporating visual aids to enhance understanding, and involving trusted family members or caregivers to support shared decision-making. We also explored the nuances of assessing decision-making capacity in this context, drawing parallels to pediatrics, where patients may “assent” to care even if they cannot formally “consent.”

Conclusion:
This case highlights the need for tailored approaches to advance care planning and capacity assessment in adults with ASD. Developing structured, accessible, and inclusive methods for these discussions is essential to promoting patient autonomy and aligning care with what matters most to neurodivergent individuals.

References: 1) Zuur LG, de Barros HA, van der Mijn KJC, Vis AN, Bergman AM, Pos FJ, van Moorselaar JA, van der Poel HG, Vogel WV, van Leeuwen PJ. Treating Primary Node-Positive Prostate Cancer: A Scoping Review of Available Treatment Options. Cancers. 2023; 15(11):2962. https://doi.org/10.3390/cancers15112962
2) Satkoske V, Migyanka JM, Kappel D. Autism and Advance Directives: Determining Capability and the Use of Health-Care Tools to Aid in Effective Communication and Decision-Making. Am J Hosp Palliat Care. 2020 May;37(5):354-363. doi: 10.1177/1049909119888621. Epub 2019 Nov 21. PMID: 31749388.
3) Vella L, Ring HA, Aitken MR, Watson PC, Presland A, Clare IC. Understanding self-reported difficulties in decision-making by people with autism spectrum disorders. Autism. 2018 Jul;22(5):549-559. doi: 10.1177/1362361316687988. Epub 2017 Apr 20. PMID: 28425298; PMCID: PMC6795545.