Singer K, Clary P. Doing the right thing. Annals of Long-Term Care: Clinical Care and Aging. 2012;20(6):40-41.
Whenever I saw Jane at the nursing home, her gray hair unkempt, her spine twisted by age, barely able to speak, I also saw the other Jane I had known 15 years earlier. That Jane had been the receptionist at our local neurologist’s office. In those days, she was highly organized and efficient, her hair always perfectly in place, and she was proud of her role as gatekeeper and trusted administrative assistant to a physician she admired. Although I had witnessed the ravages of dementia in many other patients over the years, the changes in Jane were more striking because of the long gap between the time she stopped working at the neurologist’s office and her admission to the nursing home, where I currently work.
Over the 18 months following her admission, Jane’s dementia continued to progress. Despite receiving meticulous care at the nursing home, she would often end up on the floor, sustaining injuries that left her with bruises on her face, shoulders, and knees. Her feet became deformed, painful, and sometimes bled spontaneously. Although she did not sustain any fractures, she was clearly in pain, both physically and emotionally. Her three adult children remarked on the suffering they observed with her recurrent falls and the futile struggle to accomplish even the most basic activities of daily living. They heard her cry in fear and pain, mumbling about being punished with a wild and terrified look in her eyes. She wept when her children addressed her affectionately because she realized that she should recognize these people and was tortured by her failure to do so. They continued to visit frequently and became close to the staff, who admired their compassion for and connection to Jane.
My understanding of Jane’s background and wishes expanded during an intense meeting with Jane’s children. Members of the nursing staff, social services, and the administration heard how, when her mother was dying of cancer, Jane had honored her pleas to stop feeding her. This experience led Jane to think deeply about her own end-of-life wishes. She decided if she were to end up with a terminal illness and became incapable of caring for herself, she wanted her children to honor the wish that she shared with her mother: that she would not be fed. Because of the nature of her work, Jane had seen many patients suffer through the inexorable stages of progressive dementia.
During the meeting, I was reminded about my father’s end-of-life wishes. A very physically active man, he eventually became bedridden and started to suffer some memory loss. Eventually, he decided that he no longer wanted to live and told my siblings and me that he was going to stop eating. We responded that we understood his decision, and he died comfortably a few days later.
The initial meeting about Jane’s situation established a general plan for how we would proceed. We would start by having each of Jane’s children write a letter recalling their memory of their mother’s end-of-life wishes. We would also ask her former employer to write a similar letter, since she had also expressed her wishes to him. Although we knew the road ahead would be challenging, we were guided by what Jane often told her children—“do the right thing” no matter what barriers might appear. Since we knew what Jane would have done if she were able, our job was to find a way to accomplish her goal.
At our second meeting, we invited an additional independent physician, a palliative care specialist, to join us. We reviewed the beautiful and evocative letters written by Jane’s children and the letter from her former employer. All of these supported the position that Jane did not want to be fed if she developed progressive dementia. We also reviewed her advance directive, which said she did not want medically administered fluids or nutrition; however, the directive failed to address ordinary eating and drinking. Because failure to provide such ordinary nutrition could be construed as neglect, we reluctantly decided to seek guardianship through the courts. Such an adversarial process would specifically establish Jane’s wishes and test them more rigorously. Taking these measures would also protect us all against journalistic sensationalism. “None of us,” my colleague observed, “want to end up on the front page of the Manchester Union Leader.”
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.