Each life and each death is a profound event, or no life--not a single life ever--Was of any consequence. Everything matters or nothing has mattered.
--Burton Blatt, 1973
Dying and death have become more and more complicated for everyone. Technology and the patient autonomy movement have come together to create a host of possible end of life treatment dilemmas. The introduction of advance directives in medical decision-making has raised further issues about projecting treatment wishes into future, unknowable situations. And, of course, advance planning with adults who have intellectual disabilities raises additional ethical questions.
At the same time, legal, policy, and advocacy trends show support for more involvement of persons with intellectual disabilities in decisions that affect their lives, including those related to the end of life experience. And people with intellectual disabilities are living longer now with life expectancies often approaching that of the general population. This suggests that parents--the traditional front-line surrogates who in the past often outlived their child with an intellectual disability--may now be unavailable to "see their child safely to his or her final rest."
In this article, I will share some findings from a research study that I conducted on end of life decision-making and adults with intellectual disabilities. For this study, I talked with adults with intellectual disabilities and with family members of adults with intellectual disabilities. My motivation for doing this research came in large part from my friend John, who receives services from the agency where I conducted the study. A number of years ago, John started talking with me about how he wanted his end of life experience to be and how he wanted to make sure someone would communicate his wishes if he were to become unable to tell others himself. John's determination to have his wishes respected really inspired me to begin talking with others about this complex issue.
Caring at the End of Life Should Start Now
The family member who is most knowledgeable about a person's wishes may be unavailable to advocate for that loved one at the end of life. This is just one of many reasons why caring at the end of life needs to start long before family members may be "ready" to face the daunting prospect of discussing and planning for their loved one's end of life experience. One mother said, "Look, nobody likes talking about this stuff!" But even though family members admitted to procrastinating about taking action on this emotionally-charged assignment, their advice to others was still: "Don't put it off! Just do it!"
The American Association on Intellectual and Developmental Disabilities has expressed its views on this matter in a position statement called, "Caring at the End of Life" (June 2005), which states in part that "discussions about caring at the end of life should begin before the last six months of life." In other words, the work of caring at the end of life should begin long before a person has been labeled terminally ill.
What Adults with Intellectual Disabilities Know and Want
Sixteen adults with intellectual disabilities took part in the study. Most client participants demonstrated capacity for and interest in involvement in end of life planning, and most were able to express definite end of life preferences and opinions. My friend John said, "You have a right to make your own decisions; we know about our own body."
Client participants understood basic death concepts. They had all been to funerals. Some were familiar with the notion of life supports.
Some had been on life supports. They had talked with others about death, both informally and in clinical settings. They had seen death on television, in the movies, even at the opera. They had all experienced the death of significant people in their lives. …