Doing for, or doing to?

Lionel is a 24-year old man with Down syndrome and significant intellectual disabilities, who lives at home. He is well-supported by a loving family and by all accounts has lived a happy life. His parents are his substitute decision makers for health decisions. He is minimally verbal, so one of his parents or a sibling is with him at all times to advocate and ensure he is provided the opportunity to participate as much as possible in his care.

A year ago, Lionel was diagnosed with lymphoma, at a stage where it was thought to be quite curable. His family advocated for a full course of treatment, and he is now being considered for stem cell transplant. As expected, the treatment has meant a number of unpleasant procedures and medications, and some severe side effects. His family is always present to support and comfort him, but even they acknowledge he does not understand what is happening. However, they continue to feel the treatment is worth it.

If the side effects can be managed, there is a good chance Lionel’s lymphoma will be cured. But the more difficult the treatment, the more questions arise about whether it is the right thing to do.

Questions for discussion and consideration:

1. What are the ethical implications in this situation?
2. How do ethical principles play out here? What relevance do respect for autonomy, beneficence, non-maleficence, and justice have?
3. How does Lionel’s quality of life play into decisions about whether to continue treatment? What effect might assumptions about his quality of life have on the treatment discussions?
4. How is this situation different from a situation involving a young child receiving a difficult course of treatment? How is it similar?