Background     This Fast Fact will address medical decision making for adults with intellectual and developmental disabilities (IDD) who are facing terminal or life-limiting diseases such as cancer, end-stage organ failure, or progressive debility.  See Fast Fact #192 for barriers to care and symptom assessment issues for persons with IDD.

Advance care planning     Clinicians should elicit individual preferences regarding end-of-life care from adults with IDD or their guardians early in the disease trajectory. Early discussions of a disease’s likely course, as well as concerns such as cardiopulmonary resuscitation, mechanical ventilation, artificial nutrition, spiritual values, and place and circumstances of death are important for providing anticipatory guidance. Unfortunately, studies show that individuals with IDD often are not a part of these discussions, nor are they always informed when they are dying.   It remains unknown when the ideal time for advanced care planning should begin.

Who decides?   Many patients with IDD have legal guardians (often, but not always, family members).  However, some adults with IDD can express their values and wishes which should be accommodated as much as possible by surrogates and clinicians.  Non-guardian family members and caregivers often provide valuable insight, and decisions should ideally be made by consensus of all interested parties. Guardians are obliged to act in the patient’s best interests; in the rare instance that clinicians suspect they are not doing so, adult protective services or the courts need to be involved.

On what grounds?   Treatment decisions need to be made based on reasonable estimates of benefits vs. risks, with attention always to effects on the patient’s quality of life (QOL).   

• Clinicians should be aware of their own biases in assessing a patient’s QOL.  People with profound disabilities can lead rich lives, considered precious to them and those who love them, and often with higher quality of life than perceived by others.  Surrogate decisions should be made by caregivers who know the patient well and attempt to view the QOL from the patient’s perspective.
• Define the risks/burdens of treatments for the patient:
  • Will treatments be understood?  Can the patient readily comply with the therapy or will restraints or sedation be necessary (e.g. to receive chemotherapy or undergo diagnostic studies)?
  • Will treatments result in undue pain, suffering, or fear (hospitalization, IVs, nausea, vomiting, mucositis, diarrhea, or other side effects)?
  • How will QOL be different after treatment (e.g. post -chemotherapy neuropathy, new functional deficits, change in place of residence due to health status)?
  • Will remission or benefit be sustained long enough to warrant the duration of therapy?
• In emergency situations or in the absence of a decision maker, life-sustaining care is the usual initial approach. However, withdrawal or withholding of life-prolonging care is ethically appropriate if inconsistent with a patient or guardian’s goals of care or the burdens of treatment clearly outweigh any medical benefit. Clinicians should be aware of local regulations governing such decisions.

Communication    

• Find out as much about the patient as possible: “What is a normal day like for her?” “What sorts of activities seem to be enjoyable or meaningful him?” “What disturbs her?” 
• Focus on goals: “If he could no longer enjoy X, what do you think he would want?”  “Sounds like being at home – in familiar surroundings – is very important for her happiness.  Is removing her from home frequently going to be worthwhile, even if she does live somewhat longer?”
• Make recommendations on your best understanding of the clinical situation and likely outcomes.
• Avoid language that makes assumptions about the patient’s “quality of life.”
• Avoid use of the term “futility” or language that otherwise seems to undervalue the patient’s life.  Recognize that trust may need to be built with families due to prior incorrect predictions such as “Your baby will never live to be an adult,” “You will never be able to care for this child by yourself,” or “They will never have a meaningful life.”

References 

1. Botsford, A., & King, A. (2005). End-of-life care policies for people with an intellectual disability: Issues and strategies. Journal of Disability Policy Studies, 16, 22–30.
2. American Association on Intellectual and Developmental Disabilities.  Position statement on Caring at the End of Life. July 2012. Available at: http://aaidd.org/news-policy/policy/position-statements/caring-at-the-end-of-life. Accessed July 2015.
3. Friedman, S. L., & Helm, D. T. (Eds.). (2010). End-of-life care for children and adults with intellectual and developmental disabilities. Washington, DC: American Association on Intellectual and Developmental Disabilities.
4. Kingsbury, L. A. C. (2009). People planning ahead: A guide to communicating healthcare and end-of-life wishes. Washington, DC: American Association on Intellectual and Developmental Disabilities.
5. Voss et al. Advance Care Planning in the Palliative Phase of People With Intellectual Disabilities: Analysis of Medical Files and Interviews. Journal of Pain and Symptom Management. 2017-12, Vol. 54 (6), p. 938-960.e1.
6. Foo et al. Specialist palliative care staff’s varying experiences of talking with people with intellectual disability about their dying and death: A thematic analysis of in-depth interviews. Palliative Medicine, 2021, Vol. 35 (4), p. 738-749.
7. Sullivan et al. Promoting health care decision-making capabilities of adults with intellectual and developmental disabilities. Canadian Family Physician, 2019 Apr;65 (Suppl 1): S27-S29.
8. Kripke, Clarissa. Adults with Developmental Disability: A Comprehensive Approach to Medical Care. American Family Physician, 2018-05-15, Volume 97, Issue 10, Pages 649-656.

Version History:  Originally published November 2007.  Version re-copy-edited in May 2009; web-links updated. Revised and updated by Jessica Greupner MD in October 2025.
Conflicts of Interest: None to report.