Friday Reflection 32: The Trauma of Not Dying Alone
When I look back on these reflections, it is surprising to me how much I’ve written about death. I am not a palliative care physician or even a geriatrician. Even though my practice is made up of about 750, overwhelmingly older people, mostly with chronic medical conditions, I only attend to the death of a patient a few times a month. Let’s contrast that to the thirty or so cases of hypertension I manage each week. I also don’t think much about death outside of when I need to at work.
But maybe it is not so surprising that death is the subject of so many “Friday Reflections”. We all know that our death is a future certainty and is as incomprehensible as our existence and consciousness. It is both a privilege and a responsibility to be involved in the end of people’s lives. Writers, poets, playwrights, philosophers, and physicians have darkened many pages with meditations about death.i Limiting myself to only those written by doctors for medical journals, two of my favorites are Dying of Cancer is the Best Death by Richard Smith and Letter to My Future Doctor by Faith Fitzgerald.
All that said, one more reflection on death before I commit to a few months avoiding the topic.
LT is an 87-year-old-man with presumed Alzheimer’s dementia. He is otherwise well, with only hypertension, well-controlled on one medication. At his most recent visit, he sits quietly while I speak to his wife, PT. PT’s own appointments with me are mostly consumed by discussion about LT.
They say that there is nothing worse than dying alone.ii Whoever “they” are also say that we all die alone. Whatever the truth is, I have seen the difference between people who die with companions and those who do not.
I usually see people who die alone in the hospital. They often come to us without a stable home and have no next of kin listed in the medical record. When we ask if there is anyone we can -- or should -- call, they shrug or give us the number of an estranged cousin in another state. The number is never a working one.
Those who die alone usually have chronic conditions that have been poorly managed. There have been previous admissions after which the patient did not make it to follow-up appointments. Substance abuse and mental illness fill these people’s problem lists. Other entries on the problem list include things we should not see in the 21st century. Gunshot wounds, tuberculosis, amputations, protein-calorie malnutrition.
Some of these patients die alone in the hospital, with nobody at their bedside. Others are transferred to inpatient hospice centers. Home hospice is never an option for someone with no family, no friends, and, often, no home.
I don’t actually know if the experience of death is different for those who die alone compared to those who die with family and friends nearby. Press Ganey hasn’t yet started surveying the recently departed for feedback on their experience.iii I do have plenty of information on the people who spend time with the dying.
LT’s wife was practically a case study. PT and LT had just celebrated their 55th anniversary when LT first complained to me about his memory: some word-finding difficulty, more frequent mistakes with bookkeeping, a bit more “scatter-brained.” A Montreal Cognitive Assessment test at that visit was 25/30, probably an underestimate of his cognitive decline given his level of education and baseline intellect.
The next five years were familiar to me. Our visits evolved from he and I talking; to he and his wife sharing the stage at the visit, collaborating to provide the history; to visits where his wife did most of the talking except when they would argue in the room. During the most recent visits, his wife and I spoke while LT sat quietly, a ghost-like presence in the room, seemingly aware but disengaged. When I address him directly, he answers reflexively, politely. When it is time to leave, he is gladly directed out.
As LT’s cognitive abilities waned, his wife’s experience, and reactions to those experiences, were also familiar to me. Reducing them to Kubler Ross stages of grief seems trivializing, but those have all been present. Denial preceded that first visit in which we addressed his cognitive state. She had tried to convince herself that his slips were just senior moments of an already eccentric academic. Eventually, she pressured him to tell me about his memory lapses. I did witness anger, which she was careful to always direct at his disease rather than him. Acceptance followed and waxed and waned. The bargaining mostly took the form of asking me for good news: “Because I have told you about some abilities he maintains, or the absence of other symptoms, don’t you think he might progress more slowly than expected?”
PT’s experiences were familiar to me. They are the ones I have heard about from the spouse who remains healthy during a partner’s cognitive or physical deterioration. She deeply loved her husband but recognized that love being less requited each day. Her home became a place of stress and sadness, but, as much as she wanted to be away, she missed him when she left and felt guilty for leaving. She treasured visits to her grandchildren but was devastated that he could not join her for the trips. She would call him during these visits, not knowing if involving him was welcome or painful. Calling him made the visits themselves less enjoyable – the calls took her away from activities and reminded her of the pain at home – yet she could not imagine skipping the calls.
The decision to begin hospice brought guilt, grief, and relief.
PT’s pain has been psychological. Other caregivers experienced actual physical harm.
MV was a patient of mine who cared for her husband for a decade before his death. This was a decade of ill-health before he was diagnosed with metastatic cancer and died at home, 6 months later. In the weeks after his death, she developed takotsubo cardiomyopathy. When I gave her an article about the disease -- one that included a description of the “textbook patient” -- she recognized herself. Although her ejection fraction recovered, she was left with paroxysmal atrial fibrillation. The arrhythmia was largely asymptomatic and we managed it with anticoagulation alone. Ten years after her husband’s death, MV fell and hit her head. She suffered a CNS hemorrhage, certainly related to anticoagulation. The head injury eventually took her life. When I filled out the death certificate, I was tempted to write that the cause of death was a late complication of grief.
I do not know if we all die alone. If we can be accompanied at the end, I don’t know if it is better to die alone or surrounded by loved ones. I do know that people who care for the dying suffer in ways beyond simple grief. I am tempted to suggest ways to prepare ourselves and to prevent the complications of this grief but I wonder if this is possible. This experience may be core to our humanity.
i Please feel free to fill comments with recommendations of your favorites.
ii A wonderful Hunter S. Thompson quotation. “We are all alone, born alone, die alone, and — in spite of True Romance magazines — we shall all someday look back on our lives and see that, in spite of our company, we were alone the whole way. I do not say lonely — at least, not all the time — but essentially, and finally, alone. This is what makes your self-respect so important, and I don't see how you can respect yourself if you must look in the hearts and minds of others for your happiness.”
iii Sorry, it was a competition between good taste and anti-Press Ganey bitterness. Bitterness won out.
Working in long term care, death is common in my world. But I have not experienced lonelier deaths than during the pandemic when the elderly dying were denied family comfort at the bedside. That must never happen again.
A year ago my father died after a two year decline in health ( cardiac amyloidosis.) My mother provided most of the in home care, an exhausting task which she would not relinquish although substantial resources were available. She was devastated by his passing, but also ( guiltily) relieved, and eventually angers that he left her alone.
He died at home, with my sisters and mother in attendance. This was clearly his wish, and his last words to my oldest sister were “ it’s beautiful.” I suspect that it was better for him, and know with certainty that it was better for my mom, that loved ones were present. I a willing to take the leap ( despite the lack of validated survey data) that these results are generalizable and reproducible.
Thanks as always for your humanity.