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End-of Life Care for Patients with Intellectual Disabilities

June 17, 2016

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End-of-life care is a complex and contentious topic. The issues of autonomy, advance directives, and the role of proxies in decision-making are the frequent (and rightful) subject of bioethical reflection. The consideration of patients with intellectual disabilities (ID) complicate these matters even further. Established wisdom regarding surrogate decision-making and carrying out the wishes of incapacitated patients can provide some direction, but the unique situations of the ID population warrant additional work. The first significant issue to address is assessing the level of intellectual disability in a particular person. A person with ID may possess sufficient decision-making capacity so as to not require the services of a proxy. For the person who lacks capacity to make complex healthcare decisions for her or his self, the initial question is whether a person with ID is fit to choose a surrogate. Perhaps a person with ID will have sufficient mental capabilities to recognize who is trustworthy and reflective of her or his general desires, while not being able to adequately comprehend the difference between short-term and long-term ventilator support, for example. However, attempting to gauge an individual’s cognitive capacity is not enough. The unique values and concerns of persons with ID must be considered in healthcare decisions as well. For example, a future traumatic brain injury that results in additional cognitive impairments may not be interpreted as a devastating loss to a person with ID whose value system has already been developed around extracting value from a life with diminished mental functioning. These unique considerations and value systems developed by persons with ID must be honored and weighed appropriately.

Keywords:
Surrogate decision making; Competence; Capacity; Best interest; Quality of life; Death and dying