My father had a full life, but a mediocre death. Not a bad death by any stretch, but not a good death.
He was taken in an ambulance to hospital suffering from complications from his recurred cancer.
He was somewhat scared but partially comforted by his family. The hospital was about as hospitable as you’d expect. After not too many days, he lapsed into a coma and shortly afterwards I witnessed his last heartbeats.
It was the second set of final heart beats I had witnessed. One of my best friends had died at university 2 years earlier.
Up until that stay in hospital he had spent most of that time at home and we had a Macmillan nurse regularly visit to help.
In that he was at home for most of his final years, and that surgery/radiation defeated his cancer long enough to see me finish high school and university, made for a good death but that he spent some of his last days scared, and not easily at comfort, made the very final reckoning mediocre by my count.
When he lapsed into a coma, a harried doctor handed me a Do Not Resuscitate form and awkwardly suggested we consider it. I had limited-to-no discussion of this with any doctor before but had recalled conversations with my father from several years before (at initial diagnosis). This lack of preparation on how to die well is common as I found in reading Atul Gawande’s book Mortality.
“As recently as 1945, most deaths occurred in the home. By the 1980s, just 17 percent did. Those who somehow did die at home likely died too suddenly to make it to the hospital—say, from a massive heart attack, stroke, or violent injury—or were too isolated to get somewhere that could provide help.
People live longer and better than at any other time in history. But scientific advances have turned the processes of aging and dying into medical experiences, matters to be managed by health care professionals. And we in the medical world have proved alarmingly unprepared for it. This reality has been largely hidden, as the final phases of life become less familiar to people.
Across the entire industrialized world, the experience of advanced aging and death has shifted to hospitals and nursing homes.”
“Death, of course, is not a failure. Death is normal. Death may be the enemy, but it is also the natural order of things. I knew these truths abstractly, but I didn’t know them concretely—that they could be truths not just for everyone but also for this person right in front of me, for this person I was responsible for.
The late surgeon Sherwin Nuland, in his classic book How We Die, lamented, “The necessity of nature’s final victory was expected and accepted in generations before our own. Doctors were far more willing to recognize the signs of defeat and far less arrogant about denying them.” But as I ride down the runway of the twenty-first century, trained in the deployment of our awesome arsenal of technology, I wonder exactly what being less arrogant really means. You become a doctor for what you imagine to be the satisfaction of the work, and that turns out to be the satisfaction of competence. It is a deep satisfaction very much like the one that a carpenter experiences in restoring a fragile antique chest or that a science teacher experiences in bringing a fifth grader to that sudden, mind-shifting recognition of what atoms are. It comes partly from being helpful to others. But it also comes from being technically skilled and able to solve difficult, intricate problems. Your competence gives you a secure sense of identity.
For a clinician, therefore, nothing is more threatening to who you think you are than a patient with a problem you cannot solve. There’s no escaping the tragedy of life, which is that we are all aging from the day we are born. One may even come to understand and accept this fact. My dead and dying patients don’t haunt my dreams anymore. But that’s not the same as saying one knows how to cope with what cannot be mended. I am in a profession that has succeeded because of its ability to fix. If your problem is fixable, we know just what to do. But if it’s not? The fact that we have had no adequate answers to this question is troubling and has caused callousness, inhumanity, and extraordinary suffering. This experiment of making mortality a medical experience is just decades old. It is young. And the evidence is it is failing.
This is a book about the modern experience of mortality—about what it’s like to be creatures who age and die, how medicine has changed the experience and how it hasn’t, where our ideas about how to deal with our finitude have got the reality wrong. As I pass a decade in surgical practice and become middle-aged myself, I find that neither I nor my patients find our current state tolerable. But I have also found it unclear what the answers should be, or even whether any adequate ones are possible. I have the writer’s and scientist’s faith, however, that by pulling back the veil and peering in close, a person can make sense of what is most confusing or strange or disturbing. You don’t have to spend much time with the elderly or those with terminal illness to see how often medicine fails the people it is supposed to help. The waning days of our lives are given over to treatments that addle our brains and sap our bodies for a sliver’s chance of benefit. They are spent in institutions—nursing homes and intensive care units—where regimented, anonymous routines cut us off from all the things that matter to us in life.
Our reluctance to honestly examine the experience of aging and dying has increased the harm we inflict on people and denied them the basic comforts they most need. Lacking a coherent view of how people might live successfully all the way to their very end, we have allowed our fates to be controlled by the imperatives of medicine, technology, and strangers. I wrote this book in the hope of understanding what has happened. Mortality can be a treacherous subject. Some will be alarmed by the prospect of a doctor’s writing about the inevitability of decline and death. For many, such talk, however carefully framed, raises the specter of a society readying itself to sacrifice its sick and aged. But what if the sick and aged are already being sacrificed—victims of our refusal to accept the inexorability of our life cycle? And what if there are better approaches, right in front of our eyes, waiting to be recognized?”
Gawande has written with insight on check lists (amazon link here) and on his time as a surgeon (amazon link here). In his book, Mortality, (Amazon link here) he tackles the medicalisation of our deaths.
There is a parallel in how some doctors medicalise the “treatment” of autism.
Reading Atul, I can see how the principles of hospice, palliative and gerontology can be applied more fully across the whole medical chain.
Atul - a high performing surgeon - was himself surprised at what a hospice worker does:
“Outside, I confessed that I was confused by what Creed (the hospice worker) was doing. A lot of it seemed to be about extending Cox’s life. Wasn’t the goal of hospice to let nature take its course? “That’s not the goal,” Creed said. The difference between standard medical care and hospice is not the difference between treating and doing nothing, she explained. The difference was in the priorities. In ordinary medicine, the goal is to extend life. We’ll sacrifice the quality of your existence now—by performing surgery, providing chemotherapy, putting you in intensive care—for the chance of gaining time later. Hospice deploys nurses, doctors, chaplains, and social workers to help people with a fatal illness have the fullest possible lives right now—much as nursing home reformers deploy staff to help people with severe disabilities. In terminal illness that means focusing on objectives like freedom from pain and discomfort, or maintaining mental awareness for as long as feasible, or getting out with family once in a while—not on whether Cox’s life would be longer or shorter.”
The parallel with autism is that you want to help autistic people have as a full a life possible, not by doing nothing but not by over medicalising them.
The voice of the terminally ill, their wishes are important - this is recognised and increasingly so. Similarly, we are increasingly aware of the autistic voice itself. (This is complicated when that voice is a child’s - there is the parent-child dynamic conflict known the world over typical or atypical) and that autistic voice is increasingly being heard.
At some point most families come to understand that autism is a life long condition and that a “cure” in a traditional medicalised sense is not possible. That understanding has some parallels to a family that comes to understand that an old age illness is also not curable.
However, whereas most people would accept that it would be desirable to cure cancer, and that some cancers can be cured. Autism is not in that bucket. The autistic experience can be made into a full life.
One other aspect to note is the idea of purpose and being in enough control to shape your own life - no matter how long or short time might be.
Those with a terminal illness, as described in the book, who could adopt a purposeful mindset and feel in control of their decisions seemed to do better on many measures - happiness but also living longer. The irony being only living longer, when no longer concerned with living longer.
The ingredients of a full life can be found at any time in life. Its beginning. Its end.
I recommend this book as a thoughtful meditation on it. There’s a secondary effect as well. The system spends a large portion of your lifetime healthcare spend on the last few months of your life. This spend often not extending your life, and not making your life better. If this money can be re-channelled into “ways of dying well” everyone would benefit.
"As Montaigne wrote, observing late-sixteenth-century life, “To die of age is a rare, singular, and extraordinary death, and so much less natural than others: it is the last and extremest kind of dying.” So today, with our average life...
...As people become aware of the finitude of their life, they do not ask for much. They do not seek more riches. They do not seek more power. They ask only to be permitted, insofar as possible, to keep shaping the story of their life in the world—to make choices and sustain connections to others according to their own priorities.”
Atul's book - amazon link here.
