Doing the Right Thing : Page 2 of 2

June 15, 2012

We went ahead with the probate court proceeding, with the appointment of a guardian ad litem for Jane. He reviewed all of the documents and met with Jane. His report, along with the letters from her three children, the letter from her former employer, and my letter as her physician, were submitted to the court. After two hearings, Jane’s son was granted permission as guardian to order that the nursing home stop assisting his mother with feeding when they gave her food on the basis of her strongly held beliefs and wishes. This was not “neglect” that licensed nursing and social work personnel would be required to report, but rather a thoughtful process of “doing the right thing.”

Facility staff members who had not participated in the family meetings were educated about the process. Comfort measures, including fastidious mouth care, were provided. With at least one of her children by her bedside every day, Jane died peacefully. She was no longer suffering, and she was relieved of her worst nightmare in the way that she had requested.

After Jane’s death, all of the people involved continued to think about the issues this case raised. Many of us felt we needed to amend our own advance directives to provide specific guidance for family members if a situation like what occurred with Jane ever arose for us. Most endorsed a statement similar to one drawn up by my palliative care colleague: “If I become severely demented or suffer some other permanent or terminal alteration of consciousness, such that I cannot recognize and interact with my loved ones and cannot feed myself, I wish to be allowed to die without oral nutrition and hydration, undergoing only such treatments as are needed to make me comfortable, but none intended to have the effect of extending or preserving my life.”

As we increasingly treat heart disease, infections, kidney failure, and many forms of cancer effectively and patients are living longer, dementia is becoming a more common terminal diagnosis, and a source of terrible suffering. Therefore, we should think of Jane’s situation and thank her family for having the courage and strength to carry out their mother’s wishes, “doing the right thing,” while educating us about what that might mean for the rest of us.

Dr. Singer reports having served as an expert witness in malpractice and liability cases. Dr. Clary reports no relevant financial relationships.