To re-imagine our end-of-life experiences, don't we need to start with an understanding of the different ends-of-life already being experienced by others? For instance, what are aging and dying like for people who never, ever visit a doctor or take a pill? So far every end-of-life discussion of which I have been a part has amounted to nothing more than a negotiation with treatment providers, which is skipping right past the most fundamental questions.
I have been through the end of life with people who chose medicine and people who did not engage with it at all. I have been able to see the difference because I was born into a control group of which I am not a part. Most of my relatives and many of my friends are Christian Scientists who never seek medical care no matter how dire the problem. With that control group to compare with everyone else I know, I have learned compelling reasons for having no one from the world of medicine present while making the initial decisions about end-of-life plans and plans for the years leading up to that. But I have yet to have anyone in a discussion like this do anything but start with the assumption that both aging and dying are medical events and planning must involve negotiating the terms of them with treatment providers.
Death does not have to be a medical event. Neither does life. For many people both can be better if they are not. For an example, I will tell about the end of life experiences of my parents, one of whom chose medicine and one of whom did not.
My father was 80 years old and playing golf three times a week when he was persuaded to get an invasive prostate exam. I tried to talk him out of it. "You're 80. What are you going to do if they find something?" Anything they wanted him to do it turns out. During the exam at the hospital they punctured something they should not have and sent him home where the resulting infection presented. He went to his doctor who told him he just had a flu and sent him home where he became septic which resulted in delirium and a general physical deterioration. I took him back to that doctor who, upon diagnosing the sepsis, told me about the wonders of modern medicine that now enabled him to cure this condition. He made no connection between previous care and the onset of this condition - one of the reasons health care providers are not good guides for understanding the risks of treatment.
The sepsis was cured, but my father was not. Now he not only could not play golf, he required round-the-clock care. I abandoned my career to help manage this for months until it became more than we could manage. He spent the last 2 years of his life hooked up to tubes and confused in a hospital asking why he couldn't go home while they gave him chemo therapy and I forget what else.
In contrast to this was my mother who would never let a doctor near her. For at least twenty years it had been clear something was wrong with her. Her legs and arms had gotten so thin while the middle of her body grew so large. Even at age 80 she thought she had feminine bleeding. My wife suspected fibroids. I suspected some kind of tumor, and one that might have weighed 40 pounds. Clearly something was wrong, but she was of clear mind, highly social, able to drive at night in the rain, and to study the religious texts in her library with the mind of a scholar - until she was 82. She did fall once in a while, but always got back up and carried on.
When she was 82 she was living in an independent living center when she became too weak to make the trek to the dining hall. It was a very long walk, but to her a mechanical device to increase her mobility was one step too many in the direction of the medical industry (so she is a very pure subject in my control group). Instead of going to the dining hall, she cooked for herself until that became too much. She needed someone with her 24/7 just to help her get around her apartment. This is not as dismal as it may sound.
I got there at 5:00 PM every day and stayed till my brother arrived to spend the night. He stayed until personnel we had hired arrived to spend the workday hours with her. So she was at home, most of the time with family, and with a clear mind, for her last six months. There were no tubes connected to her. No pills to take. Nothing clouding her thinking. She was not always comfortable, but I have witnessed and experienced how people who grow up without medicine can develop coping skills for that. My own childhood experience with that always left me wondering if people's bodies do not change in some physical way to help them cope with it. Eventually I learned that humans do manufacture their own opiates. But that stops when they take opiates. After a life without pain killers, perhaps my body was better at that than it would have been with prescriptions. For instance, I find post surgical discomfort and pain preferable to the mental changes I experience with pain killers. In any case, my experience with that enabled me to understand my mother's position and not assume she should seek treatment for comfort.
She had a clear mind to the end. There was none of the cloudy thinking so often caused by prescriptions, like with my dad. She was not confused. She was not asking why she could not go home. She was at home with family where she wanted to be. She laughed and smiled even on her last night. Her last morning was the only time she was in pain beyond what she could tolerate. She said it hurt so much she wanted to go. And then did - such a much better end than my father's in medicine.
All of my grandparents chose non-medical ends. So did various aunts and uncles. My youngest cousin, in her 50s, got sick, chose medicine, and her final year was a case study in why not to. All of my wife's family are of a different religion and never thought there was any choice other than medicine. I have seen the end both ways a number of times with people I'm close to. For me the choice is important and clear.
When I have been involved in discussions like this one about how to handle end-of-life planning, what dismays me is fundamental assumptions that go unquestioned. If the discussions are not run by health care professionals, they are run by patients talking about how to negotiate their ends with health care professionals. From birth they have been taught to have a faith in medicine that makes it so central to their thinking that they cannot have thoughts about their final years and about death that do not include it. The most fundamental question about the issue, if asked at all, is handled in a way that makes it so that it has been dismissed more than asked.
The older we get, the less likely it is that medicine will be able to help us and the more likely it is that it will hurt us. End of life planning should set some guidelines about how to recognize the point at which medicine is unlikely to do anything but make life worse. The doctor of a 90-year-old friend of mine sent her to get a mammogram. My 80-year-old father was sent for an invasive prostate exam. Can we agree that both of those were more likely make things worse than to make things better? How far prior to these do we need to start avoiding treatment in order to avoid sliding down the slope into letting them do more harm than good? Once something goes wrong in medicine, protocols kick in and other people and institutions take over our lives, often for the duration. Those people never will be good guides for figuring out how and when to disengage from them. To prevent their perspective from controlling us would require what?
It could require learning habits and routines that move away from medicalizing death much earlier than anyone in medicine would find thinkable. Perhaps health care professionals need either to be silent or away from the table during this first part of discussions like this one. We are getting old. We are breaking down. We are going to die. How much of that time do we want to have revolve around medicine rather than grandchildren, prayer, golf and whatever else might make life worth living? When you know you are dying, at what point would you want to start having life be about living till the end, in a way that is at least reminiscent of what you define as a life worth living, rather than having life be about medicine.
If with medicine you live an additional month or year with your last five not your own, is that better? In fact that is not the choice. The choice is not just whether to live longer with medicine or shorter without it. There isn't adequate appreciation of the odds of medicine not merely making life worse but also making life shorter.
My father might have played golf for several more years. Instead he didn't get to for one more day because of a diagnostic procedure. To avoid having life be made worse and/or shorter because of medicine, at what point do we have to start declining further medical care?
I once was reading an interview with an oncologist. It wasn't about cancer, but during it the interviewer said that he had been told that the oncologist had cancer himself. What was he doing about it? The oncologist said "Nothing."
"With colon cancer they cut you up and then you die."
He persuaded his patients to get the surgery, but for himself he chose not to.
I know a nurse who worked in a senior facility. She said that every day she would wait until the doctors made their rounds and then go around tearing up the prescriptions they wrote. She was trying to keep the seniors alert enough to manage their lives and walk without falling down and ending up in a hospital.
A hundred years from now it is likely that people will look back on this era as an era of chemicalizing every symptom and treating people to death. In order for it not to take longer than a hundred years to arrive at that awareness, we should start working on it now.
I am working on it in my own life. I am 65. I go to the doctor about once every two years. When I do I decline to take the prescriptions offered. I go to get information that I use to alter my life in accord with my doctor's wisdom. It might be that I am able to do that because that is how I always have handled problems, even stress and pain. Perhaps people who do not have a lifetime of experience with that need to start younger than 65 in order to have enough time to adjust their thinking and their skill set before they get too old for that. That is what I mean by the time to stop medicalizing death might be earlier than any health care professional would imagine.
The first time I went to a doctor I was in my 20s. He wanted to see my medical records. I said I didn't have any. He said he meant the records from where my parents took me as a child. I explained that they never had taken me to a doctor.
"What did they do when you got sick?"
"Nothing. Waited. Prayed."
He was shocked and said this was very, very interesting. Apparently it had never occurred to him that children can grow up healthy without medical care. Apparently doctors generally also don't understand that seniors can age gracefully without it. I know lots of examples of those who did.
I grew up watching one set of friends get tonsils out, and take salt pills to replace the salt they supposedly sweated out when they got construction jobs during summer vacation. I watched them take vitamins and put iodine on cuts and take aspirin for lots of things.
At the same time I watched my relatives and my religious friends who never medicalized anything. To me the non-medicalizing community appeared to be better off. For one thing, none of them died from an iatrogenic infection. My best medicalizing friend did when he was 20 during a surgery that didn't have to be performed. And none of my non-medicalizing friends took party drugs. They had not spent their lives being taught that every time you want to feel better, take something. It could take a while for senior citizens to unlearn that. They might need to start relatively young.
Imagining the best way to live through old age and the best way for it to end should include learning how that goes for people who do not cede control of old age and its end to the medical industry. I have seen the benefits of that enough times for it to be my primary choice. But I have yet to be part of an end-of-life planning discussion where anyone could imagine the thought. Invariably someone will point to someone who got knee replacements or a pacemaker and from that conclude that all people are better off exposing themselves to the risks of medicine. A lifetime of watching my control group suggests that is an invalid conclusion. It suggests that the average well being and life expectancy of my control group and the country in general rose because of sanitation, better nutrition, widespread vaccinations, and such. Not from engaging with medicine. It suggests that letting aging and dying become medical events makes life worse and shorter for the group as a whole, the individual examples of people who lived better with it notwithstanding.
Members of my control group seek care for broken limbs. They sometimes get knee replacements - things that are mechanical in an easily observable way. Where to draw the line on that constantly is discussed. Another cousin of mine went further over the line than many in the control group would and got a pacemaker. He wishes he had not, in part because of how it changes the rest of his life, how much his life now is dictated by others. Imagine being 25 years old and ceding control over everything in your life to government bureaucrats, parents, nutritionists, doctors, etc. Everything you ate, did, wore, read, and even the people you spent time with all chosen for you. Engaging with medicine when you are old is a lot like that. Life begins to revolve around what hospitals, insurance companies, drug companies, pharmacists, nutritionists, off spring, financial planners and such decide for you. My cousin got a pacemaker and along with it got a list of choices made for him by which he must abide. It is a loss of the freedom to live your own life. It is losing the ability to be at peace with who and what you are. My cousin lost all that for, as he puts it, "something that MIGHT happen."
When he was in his 70s my father was at his indoor tennis club when tornado sirens started going off. Someone suggested that perhaps they should seek shelter. A friend of his who related this to me told me that my father's response was, "If we are going to go, this is the way to go. Serve." And they played.
There is a lot to be said for that spirit. If he had not visited a doctor, my father might have kept playing sports for a long time. He wasn't sick. He only was getting a checkup.
I already don't get those. I visit my doctor to get answers to questions about whatever is happening to me. I appreciate and benefit from her knowledge and wisdom. She offers prescriptions. I research alternatives which often only are ways to cope with new realities. I have serious injuries and a couple of hard-to-live-with conditions around which my life is organized. Once in a while I go back to my doctor to make sure that her diagnoses find either improvement or at least a cessation of some decline in response to changes I make to address them.
I have long term care insurance in case I ever am unable to care for myself and have no one to help me. But I also am working on how to prevent being made worse by care - which is something I have experienced and live with every day, and of course have witnessed in others, so I am in tune with the problem and motivated to avoid circumstances in which it can happen again. I never see that brought up in discussions about end-of-life planning. And I've never met anyone in medicine who could advise patients with accurate information about the downside of medicine. Perhaps in part because they have no basis for comparison since they never see the people who never come for treatment. We need to discover the lessons learned from that group for ourselves. Although one thing we will not learn from them is the age at which it is necessary to disengage from medicine in order to have a better life and a better end. They haven't engaged with it from birth. It is too late for others to start that early, so determining the time at which will take some thought and imagination.
One of my grandmothers, after her husband had died, was taken by one of her daughters to a care center and moved into a room where she was to live for the rest of her life. After her daughter left, but before anyone at the center had time to take her pulse let alone make other judgments about what care they believed she needed, called a cab, went home and stayed there the rest of her life without ever seeing a doctor. Her husband had never seen one either. It is a choice. It is the first choice. But it is a choice that isn't recognized by almost anyone anymore.
Once upon a time if you gathered with chronically depressed people they spoke about what could make life worth living, even if only for one more day. Sometimes they were philosophical, other times both-feet-on-the-ground practical. They looked at everything and sought solutions, as people will when deciding whether to go on living.
That was decades ago. Now anytime a group of chronically depressed people gather the only thing they talk about is managing their meds. Previously they were the compasses for society, the way-showers, cutting through the clutter and getting thinking back to what really matters. Now they are high. They were told and believed that they were sick and needed treatment. They were not told that it is possible that there are depressed people among us by design or evolution, however you want to think about it, in order to be the brush fires in our human forest. They characteristically were the ones who saw brushed the nonsense aside and got thinking down to earth. Now their only thoughts are about how to manage their medicated moods.
The end-of-life discussions of which I have been a part have been like that. They are about negotiating with medicine - DNRs, living wills, etc. From my perspective that should be the last thing discussed. The first should be how to avoid circumstances in which any of that would be relevant. Not by substituting preventive medicine, but by preventing any medicine from being part of it - a perspective unlikely to be legitimately advocated in a discussion led by someone in medicine.
Maybe the very first discussion should be led by some Mennonite or Amish or Christian Scientist who can skip the religious imperatives long enough to articulate the practical advantages, something difficult to communicate to people who have spent their lives in a culture that assumes medicine almost always is good and life would be worse and shorter without it. And/or perhaps the first discussion could include patients who have been injured badly enough by treatment to be able to speak about the risks. And/or some elder care nurses who can describe what it is like for a 90-year-old to receive CPR and other medical routines the consequences of which the public doesn't understand and probably would not accept if they did.
To me, it seems, that re-imagining the end-of-life in ways that truly are imaginative begins with the decision to stop thinking about medicine and start thinking about what to do with life now that treatment it is neither a hindrance nor the focus. And now I realize that all I have done in these paragraphs is re-imagine discussions I've already had about the subject, in which everyone but me merely negotiated how treatment providers were going to take care of them. When I chose to write my story it didn't occur to me that my story was going to be so much about previous similar discussions. If there were two weeks left before this had to be published, I'd have time to change that. I've only just arrived at the beginning, but there is only one day left.
I guess I could add what my own plan used to be for aging and dying. It doesn't chart new ground. It simply was how I re-imagined my own end.
I wanted to retire, get a degree in the culinary arts, move into an old industrial building inhabited by artists, and spend every day cooking a meal that I would share with everyone in the building. Starving artists so often spend all of their money on art supplies and eat badly and live lonely as a result, but here, once every day, they would eat well with others. The only thing I would ask in return is that they tell me what they were working on. I pictured the walls covered with rotating samples of their latest art. I didn't have a solid plan for the very end of this scenario because of unknowable things. What I had was a notion of the direction in which to aim while discovering what might be possible in such an environment. The notion was of reaching the point at which I could not care for myself, but staying in that space and getting help from that artistic community until I passed. That was the direction in which I wanted to aim while discovering what might actually be possible there.
Iatrogenic injuries made that plan impossible to pursue. So instead I organized a group called the Creative Society that now has over 600 members. We are in line to get a space in an old industrial building full of artists, hundreds of them. We don't expect to be cooking there, but our walls will be covered with current work and we will be seeing and hearing what everyone is working on.
That is not especially imaginative. When being imaginative I find myself going toward things on which I could embark while still able bodied, and that could continue until they brought about the end. Not last minute things like overdosing on coffee cake. Longer term ends like doing a walking tour of Florida until collapsing. When I was younger ideas for the end were more ambitious like that, like trying to set a world record for sailing the smallest boat ever across the Atlantic Ocean knowing I would not make it. But solitary acts have become less interesting. And quiet ends more attractive. Like being at home. At peace. Untreated (the main feature of any of my re-imagined ends). Looking out my front window at the red maple as the sun sets behind it. Grateful still to be in that place looking at that light sparkling through those red leaves and not in an institution as I nod off.