Sally: Henry said you could have a year.
Betty: And what would that year be like?
Sally: I’d be with you. I won’t let you give up.
Betty: I know that. But I watched my mother die. I won’t do that to you. And I don’t want you to think I’m a quitter. I fought for plenty in my life. And that’s how I know when it’s over. It’s not a weakness. It’s been a gift to me. To know when to move on.
Betty (handing Sally an envelope): These are instructions. Open it the minute you know I’m gone.
Sally: No!
Betty: Listen to me, things happen very quickly when people die. Henry’s not going to be able to handle things.
You can rely on me to watch epic television about a decade late. In the last five years, after the kids left home, I have watched The Wire, Breaking Bad, and Better Call Saul.
Mad Men was my most recent way-to-late watch, so this scene with Betty and Sally is fresh in my mind. It comes from the penultimate episode of the series, The Milk and Honey Route. (At this point, I feel I don’t need to alert readers to this spoiler.) How Betty Draper Frances faced her prognosis reminded me of one way I’ve seen people face their ends.
The average age of patients in my practice is about the same as the average American life expectancy. This means that I spend a lot of time dealing with death: diagnosing life-threatening conditions, collaborating with colleagues to manage those illnesses, and discussing people’s end-of-life care.
Although the processes of dying might be enumerable — Sherwin B. Nuland mastered that in How We Die: Reflections of Life’s Final Chapter — we humans are too varied to reduce how we approach death to a dozen or so types. To paraphrase Osler, there might be a finite number of ways to die, but there are an infinite number of ways to react to our mortality.
Betty is an archetype of the patient who accepts what is to come. I realize that I don’t really know my patients’ reality. What looks to me like acceptance is a patient sharing something that looks like acceptance with me. That said, some people do react to certain death without anger or sorrow or resignation, but with acceptance. I hear from these patients that they have appreciated their lives, understand that there is little left for them, and that more time only means suffering for them and their loved ones.
Even within acceptance, there is diversity. An oath of confidentiality, and a whole lot more, keeps me from sharing case histories, but three composites summarize the experiences, wishes, and challenges of people memorable for their acceptance of the coming end.
FP was a 90-year-old woman who lived with the same cancer for 12 years. While the first recurrence was devastating, each subsequent recurrence was met with a shrug. Through her late 70s and 80s, we — and by we, I mean her oncologist — managed her cancer as a chronic disease. During these years, she lost her husband of over 60 years, dozens of friends, and one child.
When an X-ray, ordered for a lingering cough, revealed lung nodules “too numerous to count”, she was clear that her years of treatment were over.
I saw her with her surviving daughter, I’ll call her Theresa, whom I had occasionally seen at her mom’s appointments. Theresa clearly loved and respected her mother and was grieving the coming loss. While FP was certain that she wanted no more treatment and requested that I commit to making her end as painless as possible, Theresa nudged her mother to accept more treatment. FP wanted to spare her daughter watching her mother die a prolonged death; Theresa could not face the loss of the mother she had always relied on.
LS was 80 when he came to the office after a hospitalization. It had been 18 months since I had last seen him, and the history, presented by LS and his son, made it clear that in the months prior to the hospitalization he had experienced cognitive decline.
He was hospitalized with an acute delirium, caused by urinary sepsis. Even by 21st-century standards, the hospitalization had been miserable. For the first two days, even as his infection came under control, he became progressively more delirious. He spent two days in restraints and two more with “a sitter” before he was well enough to be discharged to subacute rehab.
I saw him about a month after discharge. He was living at home and had a home health aide who spent 4 hours with him each day. The delirium was past, but the dementia was obvious. His short-term memory was poor, and word-finding difficulty affected the rhythm of our conversation. His insight was, maybe tragically, intact. As a man who had lived a “life of the mind,” he mourned his loss.
We discussed prognosis. He told me that he saw no reason to live any longer. His best days were past, and coming days would be without the things he loved — reading and conversation. Any time left would only leave his children with memories of him in a compromised state.
He asked how he could hasten his exit.
BT was 95 and debilitated by rheumatoid arthritis when she was hospitalized with community-acquired pneumonia, complicated by iatrogenic immunosuppression. After two weeks in the hospital, the infection had been cured, but she faced a new oxygen requirement, the need for 24-hour nursing care, and a scheduled gastric tube placement because her new but unexplained dysphagia left her unable to eat enough “to meet her caloric needs.” (I despise that phrase.)
She and her children decided that home hospice made sense.
I saw her 6 months later when the hospice agency asked me to determine if she still qualified for hospice. She came to the visit in a wheelchair but looked better than she had in years. She was off oxygen, had gained ten pounds, and had no difficulty swallowing. She was taking no medication. Besides talking to her, all I did at the visit was delete the eight medications listed in her chart that she had been on prior to the last admission.
Her son asked if she could come off hospice, if we could draw blood to see how she was doing, and determine if there was anything we should do to prolong her life.
BT told me she would rather continue as she had been. She was sure that her life expectancy was under 6 months, and thus I’d be able to attest to the fact that she qualified for hospice.
I wonder how these experiences affect you personally as I read…where and when will you draw your own line, and how have these experiences will have shaped that?
I remember the first kid who “gave up” in a group of “us” chronically ill kids who all knew each other on the ward on 7U at the Cleveland Clinic.
He had severe Crohn’s and was green and accepted his nickname “Yoda” with a laugh. He was the first of us to die. We were 12.
I’m in my 60’s now and have outlived many “death sentences” imposed by medicine, more correctly than not.
Last year was my first last straw; I was done and nearly ready to go. I don’t fear death at all, it’s coming for us all. If I fear anything, it’s losing my sobriety if I’m honest. I know how to treat that, and do it daily.
My own experiences, reading your patients’ experiences, and watching others has led me to the easiest prayer I have now, said when I finally gave up absolutely…
Thy will be done.
No negotiations; I’ll focus on the effort and let God take care of the results. I’ve never been more at peace. I always wish that for you, too, Adam! You remain a gift to us all who navigate our patients’ as well as our own journeys.
Just because we can doesn’t mean we should or have to. There’s a pharmaceutical agent for every complaint but that doesn’t mean that it’s appropriate for the clinical picture. We should be learning from de-prescribing at end of life …. And, remain humble and respectful as we are consulted on the options available for the patient’s affliction. The final word is not ours.