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End of Life Planning

by Joel

The First Decision

Imagine not medicalizing our ends, or even the years leading to them.

So far every end-of-life discussion of which I have been a part has amounted to nothing more than negotiating preservation with providers. That is skipping over the most fundamental decisions, ones that health care professionals are not in a position to understand. What are aging and dying like for people who never visit a doctor or take a pill? What plans do they make? How does that work out for the people doctors never see?

To begin by negotiating the end with treatment providers assumes treatment providers have knowledge and wisdom that they don't have and limits the parameters of the discussion to the prejudices that they do.

The First Choice

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 about the subject do anything but start with the assumption that both aging and dying are medical events and the assumption that planning for them must involve negotiating the terms with treatment providers.

Death does not have to be a medical event. Neither does life. For many people both life and death 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 to do to him it turns out. During the exam at the hospital they punctured something they should not have and sent him home (so it is not on their record) 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 downsides of treatment, or even just diagnosis.

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 confused and hooked up to tubes in a hospital asking why he couldn't go home while they gave him chemo therapy and I forget what else. They had wrecked his mind and his health. He was going to die. So they gave him chemo therapy?

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 in her apartment until that became too much. After that 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 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. 

So 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 with my brother right there with her - 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 about how to handle end-of-life planning, what dismays me is fundamental assumptions that go unquestioned. From birth people 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.

Consider the fact that many of the people in hospice, where curative treatments are not given, outlive those who continue with curative treatments. The lesson in that is brushed aside by most people in the face of the lifetime of indoctrination giving them an unfounded faith in medicine. But it is the fact that 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 got an invasive prostate exam. Can we agree that both of those were more likely to make things worse than to make things better? How far prior to these do we need to start avoiding treatment, and even diagnosis, in order to avoid sliding into a world of treatment that does 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 their care. They are prejudiced toward care. It is what they are trained to do. It is how they earn their livings. 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 the 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 during which you are not your self, 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 making life not merely worse but also shorter.

We don't know for how many years my father might have continued to play golf if he hadn't chosen to enter the world of medicine. But he did so he didn't get to play golf for one more day because of a diagnostic procedure I could not persuade him to decline.

I once was reading an interview with an oncologist. The article 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."

"Nothing?"

"With colon cancer they cut you up and then you die."

He had 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 finished making 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. Falling is the most likely thing to send a senior to the hospital. And once they go there after a fall, half of them never come back out. To keep her patients alive she had to keep her patients out of the hospital.

One study concluded that only 15% of medical treatments have a scientific basis. If what is wrong with that is not obvious, consider that whenever someone is having a heart attack the first thing done is to put a mask on the patient and administer oxygen. There never was any scientific basis for doing that and it is what everyone does to anyone having a heart attack. Now according to Robert Harrington, MD, of Stanford University, that finally is being questioned around the globe. A modest-sized clinical trial comparing administering oxygen to administering only the surrounding air suggests oxygen is bad for patients. Things as universally accepted and practiced and taught as that never had a scientific basis in the first place. In Sweden they are instituting a large trial of that test to find out about that one. But what about the other 85% of routine practices?

A Mayo Clinic Proceeding called "How Many Contemporary Medical Practices Are Worse Than Doing Nothing or Doing Less?" says, " ineffective, harmful, expensive medical practices are being introduced more frequently now than at any other time in the history of medicine." It's growing. It's getting worse.

This is especially problematic when you consider that most diagnoses are incorrect (see Misdiagnosis on this site). So not only is it likely that the wrong problem is being addressed, it probably is being addressed with a treatment that would have been worse than doing nothing even if the correct diagnosis had been made.

Like how many of those prescriptions have side effects that make falls more likely for senior citizens? Especially when taken in combination. According to Ray D. Strand, MD, adverse reactions to prescriptions alone is the number 3 killer in the USA. That nurse had seen enough and tore up prescriptions.

According to Arnold Seymour Relman, Harvard Professor of Medicine and Former Editor-in-Chief of the New England Medical Journal, "The medical profession is being bought by the pharmaceutical industry, not only in terms of the practice of medicine, but also in terms of teaching and research."  Even the research is corrupted. Yet people have unquestioning faith that they should be on a cocktail of pills when they get old.

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 figure that out, we need to start being wary 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 may 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 to change 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 when 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 never had occurred to him that children can grow up to be healthy without medical care. Like treatment providers generally appear not to understand that seniors can age gracefully without it too. I know many 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 my non-medicalizing friends were much less likely to try 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 before becoming senior.

To imagine the best way to live through old age and the best way for it to end requires understanding of how that goes for people who do not cede control of it to the medical industry in the first place. Otherwise your imagination is confined to the box in which treatment providers think. I have seen the benefits of thinking outside of that box enough times for staying out of 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 everything treatment providers are in the habit of providing.

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 medicalizing group as a whole. The individual examples of people who lived better with it are not the rule.

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, who is a senior citizen, went further over the line than many in the control group and got a pacemaker. He wishes he had not, in part because of how it changes the rest of his life. Much of how he lives 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. I check to make sure that the changes I make to address them are working.

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. I have experienced that and live with the consequences every day, and of course have witnessed similar harm to others, so I am in tune with the problem and motivated to avoid circumstances in which it can happen again. I have never seen 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 that. Perhaps in part because they have no basis for comparison since they never see the people who never come for treatment. Perhaps also in part because of how deeply in denial the medical community is about the downside of medicine. When patients get injured in medicine usually no record is made of it. It doesn't matter how many peer reviewed studies verify that and how many injured patients try to get someone to listen to them, you would be hard pressed to find anyone in medicine who believes it. I know. I've helped hundreds of injured patients try.

Since people in medicine will not learn from injured patients and will not compare their patients to people who never seek treatment, we need to learned from that for ourselves. Although one thing we will not learn is the age at which it is necessary to disengage from medicine in order to have a better life and a better end. My control group hasn't engaged with it from birth. It is too late for others to disengage that early, so estimating the time at which it is necessary will take thought and imagination. My observation is that once people engage, they cannot stop and that decision has been made for life.

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 prescribe any care they might believe 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 isn't recognized as a choice by almost anyone anymore.

Once upon a time if you gathered with chronically depressed people there were discussions about what could make life worth living, even if only for one more day. Even if only for another ten minutes. 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 they believe that they are sick and need treatment. They are 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 brushed the nonsense aside and brought thinking down to earth. Now their only thoughts are about how to manage medicating their moods.

The end-of-life discussions of which I have been a part have been the same. They are about negotiating with medicine - DNRs, living wills, etc. From my perspective that should be the last thing to discuss. The first should be how to avoid circumstances in which any of that would be relevant - a perspective unlikely to be understood, let alone advocated, in a discussion led by anyone 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. 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, for a 90-year-old, the public doesn't understand and probably would not accept if they did.

Preservation or Life?

One time a guest in my house accidentally marred an antique church pew in my living room. She was upset and would not believe that I was not. Finally I said, "I bought this house to live in it, not preserve it." I feel the same way about my body. I exercise. I eat right. I take care of it, but there is a point after which all we are doing is preserving it and not living in it.

To me, it seems that re-imagining the end-of-life in ways that truly are imaginative would begin with imagining what it could be if treatment were not on the table. What could be the equivalent of saying, "Serve."

My imagined equivalent was going to be 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 there. 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 actually might be possible.

Injuries caused by health care (as my three worst injuries were) made that plan impossible to pursue. So instead I organize a group called the Creative Society that now has over 700 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 about what everyone is working on.

While that is not especially imaginative, it is especially doable. When I was younger ideas for the end were more ambitious, like trying to set a world record for sailing the smallest boat in history 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. And 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, as clear-minded and drug-free as my mother was, and not in an institution as I nod off.