Nothing in Uncle Morton’s (not his real name) life predicted that he, a retired professor of English literature who lived on the East Coast and was an avid devotee of New York City opera, theater and dance would die, at age 86, in a nondescript nursing home a continent away from the city and culture he held dear.
This story begins about two years after his retirement when, at age 67, he followed a newfound life partner to a small town on the West Coast. It was the first time he had lived with anyone other than his immigrant parents.
At first all was good, despite my great misgivings about how he would find life in a small working-class town, how such a town would accept a gay (although closeted) couple and how he was isolating himself from what was left of his small East Coast family. Within six months I was thrilled for the positive change in his personal life and ecstatic when he found kindred souls with whom to discuss culture and politics. He held his nose at the quality of the local orchestra, but attended every event. He was as happy as I ever remember seeing him.
The good times lasted about 12 years, but eroded slowly. First, his partner moved out, and in with someone else in town, refusing to speak to Morton beyond some acrimonious words upon his leave-taking. Then, those kindred spirits began to die off. Soon only a few remained.
A daughter of one of his now-deceased friends gradually took on the role of caretaker for Morton, at first unpaid. As his needs increased, Cathy’s role evolved into a paid one. She not only helped him maintain his apartment, but also drove him to lunch a few times a week and they became very close. He served as a replacement for her deceased father, and she, I think, stood in for me. Over the years, Cathy and I became friends and shared the challenges of supporting Morton. He held his own, albeit tenuously, for about six years.
Then the strange decisions began. He developed a cataract and refused—despite begging, cajoling, and arguing—to have it removed. “How about books on tape?” “No, I don’t like hearing other people reading to me.” “How about getting some pills so you are not depressed?” “Out of the question, and if they are ever prescribed, I won’t take them.”
I tried another idea. “Why not move back near me? I could visit you once or twice a week and get you to the theater and events.” “No my dear, I am going to stay here. I don’t want to move back East, not even to be with you.”
Over time, the sight in his good eye worsened, and he began to have trouble walking, plus bouts of vertigo. He told me with much black glee that he was hiding his weight loss from his doctor by putting rocks in his trouser pockets during a weigh-in. He laughed at my complaint about this, saying, “doctors have never done me any good.”
And then, as he really began to have trouble reading —reading for him was like breathing for most people—he started saying that he didn’t want to live. Again, I urged (unsuccessfully) cataract surgery. He knew what he was saying and was able to communicate his wishes clearly and forcefully. I continued to beg, cajole, and reason, but he would not budge from his decision and I was trained to respect autonomy. His decisions were awful, but they were his decisions. It was clear he would pass a competency hearing.
Each year, the statement “I want to die” was heard more frequently, and became part of a theme, along with, “every night I go to bed hoping that I will not wake up in the morning.” Arguing about this seemed the right thing to do, but resulted only in “My dear, this is my life and I am telling you I no longer want to live it.”
His living will, made out years before these decisions began, was clear that he did not want to be kept alive by any artificial means. I held his power of attorney and was his healthcare proxy.
Then, Cathy called. Uncle Morton had fallen, was in terrible pain, and she and a friend had managed to get him into bed. They suspected he had a broken hip.
“Oh my god. Take him to the hospital.” “He is refusing and saying he will cling to his bed and charge them with abuse if he was moved and that he had a right not to be moved.” “Keep trying,” I pleaded.
Somehow they managed to move Morton to the hospital the next day. The hospital found he had a broken hip (and, curiously, evidence of an earlier fracture I didn’t know about) and replaced it. He was now in a nursing home for rehab.
I made plans to visit and called the nursing home daily. It turned out he had refused physical therapy and the painkiller that would have made it bearable. I flew out.
I asked the nursing home staff why they were not insisting on physical therapy and painkillers, though I already knew the answer: “We cannot treat someone competent against their will.”
Upon my arrival, Morton’s greeting to me was, “My dear, tell them I don’t want to eat, I want to die and will starve myself to do it. I won’t do therapy. I won’t take pills. I can make myself die now.” There was an undertone of triumph in his voice as he said, “You can’t make me do anything. I will die in this bed and the sooner the better. You make sure that they understand my wishes.” He refused all food.
The social worker and I held a meeting with Morton to make sure we were clear on his wishes. We asked the director of nursing to talk to him and she explained that death by starvation would be painful. The nursing home staff made it clear that they would not force him to eat, but would encourage his eating. I was miserable advocating for his choice, but at the time I was sure I was doing the right thing.
Years later, I wonder whether a psychiatric evaluation would have proved him incompetent so he could be treated against his will. At the time I didn’t see the point, even if the nursing home had suggested it. Did I really want him force-fed? His hipbones had fused and he was destined for a bedbound life. Plus, I believed my role was to support those choices.
I talked to him alone. He never wavered. The three things he asked of me were to be sure his wishes were followed, to use his bank accounts to keep his caregiver coming and to get 24-hour care so he should be comfortable, and to come out as often as I could. I honored these requests.
During my several cross-country visits, the staff began to say, “Take him home to die.” The unsaid, underlying message, it seemed, was, “You put him here so we would be responsible for his death and not you. You want him dead—you take him home.”
But I didn't want him dead; I didn't want him not eating. But I just couldn’t make him do what I wanted. It got worse. He was showing signs of confusion and eating the desserts he was being offered by the aides.
This was extending a life he said didn’t want when he was fully competent, but I couldn’t figure out how to say, with any moral conviction, “Don’t offer food,” when he now, competent or not, was asking for it. The nursing home staff told me they had to offer food and they needed to encourage him to eat. And wasn’t the point of autonomy about choices anyway? Wasn’t he free to decide to eat again, whether or not it was inconsistent with his past choices?
During all this worry, he died. Now I ask: What is the role of love when someone makes terrible choices? Does autonomy always trump logic? Did I make the right choices for him? Did the healthcare system?
Author’s note: Uncle Morton is a pseudonym, but the remainder of this story is true to the best of my recollection. Though I have worked in aging for 30 years, I experienced the same wrenching dilemmas of autonomy versus healthy choices that many others face when caring for an aging loved one..
Carol Hegeman worked at the Foundation for Long Term Care for 30 years, and was, for most of those years, its Director of Research. She now runs Hegeman Consulting, which specializes in grant writing, grant writing training and curriculum development in elder care. She received the American Society on Aging’s Gloria Cavanaugh Education & Training Award in 2008.
The voices of individual elders are at the heart of these advocates’ daily work, and their records of accomplishment demonstrate clearly how... Read More
Demographic trends, the ACA, technological advances, and advocacy campaigns have pushed the reality of family caregiving to the forefront of policy... Read More