John West’s father had advanced cancer. He asked for his son’s help in ending his life. Shortly after, his mother, diagnosed with Alzheimers, would make a similar request. He helped them both. Now, years later, he has come forward with his story. In this week’s podcast, West tells WhoWhatWhy’s Jeff Schechtman what the experience was like and why he waited so long to reveal what happened.
His story might make some feel uncomfortable. But with California about to become the fifth state to permit physician-assisted suicide, and an aging population of Boomers, it is a debate we should not be afraid to have.
Unfortunately, because it’s gotten caught up in the debate about health care and so called “death panels,” it’s not getting the public attention it deserves.
John West wrote a poignant book detailing this experience: The Last Goodnights: Assisting My Parents with Their Suicides (Published by Counterpoint, 2010)
Full Text Transcript:
Jeff Schechtman: Welcome to radio Whowhatwhy, I’m Jeff Schechtman.
Every once in awhile, we’re asked to do something that takes a special kind of courage. Such is the case with my guest John West. His father had been recently diagnosed with cancer and asked him an extraordinary favor: Help him commit suicide.
After the tremendous weight of those words settled squarely on West’s shoulders, he looked at his father and said the only thing that he knew how to say “you got it”. John helped his father take the cocktail of pills and by morning his father was dead. Months later, his mother asked him the same devastating favor, and again he agreed. More than a decade later, West kept the secret to himself, not even telling his sisters of the role that he had played. Now he is coming out with his side of the story. John West, welcome to radio Whowhatwhy.
John West: Thank you very much. It’s a pleasure to be here.
Jeff: Why now? What is it that led you to tell the story now?
John: Well, I actually wanted to tell it much sooner. It’s unfortunate because I would’ve gotten it off my chest and out into the public domain sooner. But here we are now, so we can talk about it, and move people’s minds forward a little bit.
Jeff: What about the sense that the public attitude may have changed in this intervening period of time? And the story that you tell today might have been received differently five years ago, seven years ago?
John: Well, I think that is very true. Our nation seems to be changing in many ways. I remember John Ashcroft tried to shut down the state of Oregon’s existing physician-assisted with dignity law when he was Attorney General. And that kind of antithetical stance towards medical progress is certainly no longer the norm, I think, in the current administration.
This is one of the issues that seems to transcend politics because I know a number of Republicans, or people who would consider themselves conservatives, believe that this is appropriate for people to have the right to do this. It’s their own private body and their own private life, and it should be their own private medical choice.
Jeff: What do you see from having talked about this now, written about it, and lived with it for so many years? What do you see is the core issue here? Is it about religious belief? Is it about the law? What do you see is the underlying issue that divides people on this?
John: I think it is the kinds of things you’re saying — religious beliefs. It’s really more of a personal indoctrination, if you will. If you grow up in a small community where everybody wears triangular hats, then you’re going to feel funny if you don’t wear a triangular hat. But if you don’t care for triangular hats, move somewhere else you might feel more comfortable. That’s why people move away from their small communities or even their larger communities to places that fit them emotionally and stylistically.
This really boils down to a sense of…in some ways, I call it common sense, which of course is no longer all that common, which is to say that, if you see, for example, an animal writhing in agony on the side of the road, a deer that’s been hit by a truck or something like that, your instinct is to put it out of its misery if it’s obviously dying. And we have the same feeling with pets.
Many of us, of a certain age, have already lost their grandparents, or have seen parents, or siblings even, and maybe work colleagues, or friends, or neighbors who’ve gone through long disabling illnesses, and we find ourselves saying: “Surely there’s a better way”. And there is. Give those people the freedom of choice that we’ve given to people in other medical private matters in recent decades to do this one last favor for themselves, if they wish to.
Jeff: What about the people that would say that in your case, because it wasn’t just the person doing it to themselves, you assisted in this? What about the people that would see this as homicide?
John: Legally it’s not and I say that as a lawyer. But if someone wanted to make the argument, then I would say “Well, any time a person does, or makes some motion that leads to some other action doesn’t necessarily make them culpable. It’s work in the laws called Mens Rea, the sort of the mindset that what you’re thinking at the time.
It isn’t always necessarily [inaudible] the legal case, but you could make that same claim towards the doctors who do that sort of thing legally in Oregon and Washington. If you are philosophically opposed to death by any other means than just natural final decrepitude or accidental whatever, then you’re probably not going to be able to open your mind to this.
But if you’re willing to sort of think like grown-ups for a few minutes, sit down, and clear eyed-ly look at the issue, you can see where if someone has no quality of life, or is looking at a future with no quality of life and doesn’t want to go through that, then what is the point?
Who is benefiting if the person themselves feel that they aren’t benefiting, then who are you to write in and say “well I’ll feel better,”? Well it’s not your life. It’s the other person’s life. So if they need help from a doctor in Oregon and Washington, they can get it there or in the Netherlands, Switzerland, Belgium, and coming soon, California. Montana has a strong possibility of going that way. But I think that people get it.
People are starting to open up about this and they’re not afraid as much as they used to be. I think that’s a good thing. People should be a little bit more clear-eyed about some of these issues and not so afraid.
Jeff: Talk a little about the difference between your father’s death and your mother’s. Your father was in the final throes of cancer, and certainly, the end would be near regardless. But your mother was a very different situation. Tell us about that.
John: Oh, very much so. I like to say that my father was in midair, he was falling off the cliff, and he was going to hit bottom in a couple of days, maybe a couple of weeks, maximum. And so when you imagine yourself in that position, saying “I know what’s coming. Let’s just take care of this right now so that I don’t have to go through these weeks of pain.” For him, it wasn’t just falling through air, it was great pain because his body was riddled with cancer everywhere in his body– skeleton, everywhere.
My mother was very different because she had a couple of physical ailments, but her primary concern was her Alzheimer’s, her growing a lack of ability to remember things and to control her emotions and that sort of thing. She was a psychologist and she had built a life and a career out of strong-mindedness, and her personality and her sense of self were entirely wrapped up around that way of being.
So for her, the cruelest torture imaginable was to be slowly losing her mind. This finely honed machine of hers was turning into mush and she, again, saw only one way out. She was falling off the cliff. She was slowly rolling down the gentle incline. There was only one direction it was going to go. She did not want to be spoon-fed by strangers and have herself bathed by people she didn’t know and not remember who was who from one moment to another.
It was just an assault to her sense of dignity and her sense of self. And she said, “no, I’m not going to get there.” It was a very brave, very courageous thing for her to do.
I think it’s certainly the Alpha and the Omega of examples, my father’s case and my mother’s case in one minute ago, and that a couple of hours ago metaphorically speaking to take that active step and say “You know, this is a life I am not interested in living because it is so horrible to me”. I talk in the book about the difference between physical pain and emotional pain and who’s to say which is worse. I think the answer is clear. It’s the person who’s experiencing it and nobody else.
Jeff: What about in your mother’s case though, in terms of the sense of timing and when might have been the right time?
John: Well, the right time was the time that we ultimately decided and the reason for that is it was the time, that she decided, was right for her. I went so far as to tell her directly that I would rather she stay alive and I would take care of her and arrange for her to have the very best of care. Heck, she could still be alive today physically, but she wouldn’t be herself. She would be this body, maybe ambulatory, maybe not.
But she wanted to go, as she put it, soon, but not too soon. We would monitor the situation. She was after all a scientist, so she and I regularly talked about how she was feeling, what she thought, and what she felt. We sort of slowly stepped up towards the edge and when she was well and truly ready and had no reservations, we set the time and we moved forward.
I was really amazed when the actual event occurred… I was amazed at how strong she was. Here was someone who could’ve stuck around for another couple of months or years, having some ability to enjoy certain small pieces of life perhaps, although lots of unhappiness.
She was just saying, “Nope, I’m not going to do that, and give me some more pills. Let’s go. Here we go. Keep going”. It was very impressive to me. I hope that when and if my time comes to make that decision, I can do it with as much grace and strength of character.
Jeff: Is there a different set of responsibilities that someone has, that you have in these cases, that is emotionally connected to the person and that is assisting them in this suicide as opposed to a clinician that might be doing it from an objective perspective?
John: Absolutely and that is part of the reason that my underlying thesis is that this is not something for family and friends to do. It impacts the emotional relationship between the dying person and the living person, the assister if you will, or an assistant provider. And of course backing up a step, if I’m going to my doctor and saying “Doc, I’m ready for the pills” and he or she asks me the necessary questions, gives me the hairy eyeball, and says, “I think it’s appropriate”. They’re making an objective decision.
But if I have to go to my sibling, my child, or my parent, they may have reservations personally and that’s not really their call to make and they may change their mind. It’s really only up to me, the decision-maker, to change my mind or not.
I can always get the pills from my doctor, go home and change my mind. That happens all the time in Oregon where it’s legal for people to get the pills. They’re happy to have them in case they need them and they end up never using them and dying without them.
But it is much more difficult for loved ones to make this decision. I don’t think they should have to. I would like to think we’ll propel the laws and the change in the laws forward, so that nobody else will ever have to do what I did ever again because it’s not for civilians. It should be for the professionals.
Jeff: How much was your willingness in your understanding and willingness to talk to your mother about this? To what extent, did that impact on her thinking and her decision-making process?
John: Well, I think it was exactly what she wanted and needed. She was a psychologist, she was a big believer in talking through problems and exploring the ramifications. She in fact turned the tables on me a couple of times, and I would be talking to her about how she was feeling, how she was handling all this… Was she still sure? Was she still wanting to move forward? And she would say “Yes, yes, yes.”
Then, she would say “How are you doing”? “How are you doing with all this”? “How are you coping”?, “How are you holding up”? and “Are you okay with this”. If anything, my involvement might’ve slowed down her decision-making process to go forward because she wanted to be sure that I was okay.
Although I think the initial thrust of your question was my being so willing, did that help her along? I think it helped ease her mind that I was capable, and competent, and willing to help her. And also willing to stop and wait because, at one point, there was a hitch in the plans, which affected me a great dea. But I couldn’t let on that it was affecting me, because it wasn’t my choice. It was my mother’s choice, and I had to roll with whatever punches she was throwing. That was very difficult. But I loved her and I told her that I was going to help her get what she needed. So I just had to go along with the program and tough it out.
Jeff: What about bringing other family members in this decision and this process, for your sister for example?
John: Neither of my sisters were very involved in family decision-making for many years. So they weren’t really “in the loop” if you will. I am, or was, the lawyer, and the competent, sort of easygoing one, and much more following in my parents footsteps in terms of professionalism and social style. So I was their much more stylistically, if you will, their representative. They also knew they could rely on me and there wouldn’t be any excess stuff going on. It would just be cool-headed and clear-eyed.
Jeff: Was there a sense that if either of your sisters were involved or knew about this, that somehow it would’ve stopped the process?
John: Yes, that is part of it as well. In most families, not everybody is on exactly the same page. In our family, people were on very different pages in some respects. But you can imagine that, if it’s open to a family vote and someone doesn’t care for it, that could throw a wrench into the whole works. And in a situation like ours, the way things are currently when it’s illegal, if someone knows about it and wants to put a stop to it, they can alert the authorities and/or cause trouble in other ways.
If and when it becomes legal, then all that person can do is exert their own emotional venting needs and cause disruption within the family. And that’s why I think, ultimately, this has to be a completely personal decision. If you want to notify your family that you are doing this, and enjoy whatever emotional conversation they wish to have with you, you’re free to do so.
But if you want to just take care of things on your own and let people find out about it later so that you don’t have to put up with the yelling and screaming or whatever it might be… then that’s why it should be between the patient and the doctor alone.
I think from a psychological standpoint, it would be a good idea for people to share this with friends and family. But that has to be their own choice, and people have to live their own lives in their own way stylistically and ethically.
Jeff: And what about the reaction of other members of your family now that this is out in the public?
John: Well, the most important person in my life as a relative is my aunt Nancy, my father’s sister. She is a hundred percent behind what I did, and making progress. A couple of cousins are okay with what happened. They’re not necessarily okay with the publicity around it. My sisters are not all that thrilled with the publicity around it, although I think they’re relatively sanguine about the actual aspect of having the choice of making decisions about ending one’s life on one’s own terms. But I have to say what really astounds me is the public response.
What someone asked me the other day was “What’s the most surprising thing that happened with all this?” And for me, it’s the surprising overwhelming positive response. I was sort of hoping for 60:40 which was the approximate percentage of passage of the bill in Washington state, making it like Oregon, having physician-assisted death with dignity taking me there. But 90%+ of the responses — to the Good Morning America website after I did their show, to my own website, and to other places and phone calls coming in — were overwhelmingly positive even from people who identify themselves as conservative and otherwise not terribly liberal.
Jeff: How do you respond to the broader slippery-slope argument that I’m sure you hear?
John: Well, everything is slippery in life. There really is no black-and-white, and people who think there is… I think they would like to believe there is. But there really isn’t. Some people count it in terms of… well this could open the door to abuses of one kind or another and I say to them “So you think there aren’t abuses now, for some reason?” I mean there are abuses of every system. As long as there’s a system, there will be abuses. I think of it this way: if you take something that is currently illegal — let’s look back a couple of decades, consider abortion — is it better to have abortion as a legal medically regulated and controlled, and antiseptic kind of a process? Or is it really better to have it in the back alleys with coat hangers? I think we all know the answer to that. And the same thing applies to this.
If there is some kind of legal structure, and oversight, and accepted legal process for this, that makes it a clean medical known process, then a whole bunch of trouble, and manipulation, and slippery slope kinds of arguments disappear, because a lot more is being eyeballed and looked at.
So there has to be at least something in place to give people this freedom so they can do it legally and safely, because, as I write in the book, I’m not a doctor. Maybe the drugs I was giving my parents weren’t enough. Maybe I would’ve botched the job and they would’ve ended up in comas which they would’ve both hated and It would’ve been a worse situation. Not to mention how did all this stuff get in there? Let’s eyeball people and throw somebody in jail, which I would not have enjoyed either.
Jeff: One of the other things that enters into the slippery slope argument is the economic consideration, unfortunately. We know that the vast majority of healthcare costs come in these final throes of people’s lives, and it’s impossible to have this conversation without looking at it in the broader context, I suppose.
John: Well, there are two sides to that sword and I’m glad you brought that up. There are tremendous medical costs at the end-of-life. Some people were positing to me the idea that all doctors and hospitals are making a lot of money on keeping people alive. I know that’s actually not true because I have a number of doctor friends and there are disincentives to hospitals and doctors for keeping people in the hospital longer.
The insurance companies are going to pay you to keep someone there for a day and a half for procedure X, and a day and a quarter for procedure Y. They’re not going to pay you a penny more. But what is implicated, I think, is the warehousing of people in some of these retirement communities.
Studies have shown that not only are the number of people in retirement homes, nursing homes, convalescent homes, and these sorts of places… Not only are there more and more people going into those places, but the studies and exposés have shown that there’s an awful lot of abuse of those elderly people and vulnerable people in there. That’s not what everybody wants at the end of life.
These people are just there keeping people alive so that they can get that monthly check from the family or from Medicare, whatever. I’m not saying that they all do bad works by any means, and in fact some of those places are just fantastic. And certainly, the hospice people who are trying to help those who want to naturally go, and not be kept alive. They do just amazing angel type work.
But the other aspect of this coin is the sort of larger philosophical financial picture, if you don’t mind such a long sentence. I think about this in terms of my own situation. Let’s say I find myself with six months to live. I know I’ve got this incurable cancer and I can take all this chemo, I can do radiation, I can do this, do that. I can travel to Timbuktu to get some new treatment, try this and try that. But in my heart of hearts, I know, you know, at the light of the end of the tunnel was a train. So I can spend all this money. Let’s say I’ve got lots of money myself or I have a great insurance policy. I can say “Okay let’s do everything we can”.
Or I have an option and I personally feel that I would take the option of look, I’m not going to stick around and go through all of this. I’m not going to be a medical kewpie doll, pincushion, or whatever you want to call it. I’ll have a nice party. Let’s have plenty of guacamole and margaritas. All my friends come over, we’ll shoot the breeze, and talk about old times. Then they’ll scoot and I’ll check out.
And all of those resources I would direct, if they were my own private funds, I would say “Have those go to inoculate about 100,000 kids against the polio or feed an entire community in Alabama, Zimbabwe, or Montana or something like that. And/or free up those medical resources, so that instead of this hospital having to spend a couple hundred thousand dollars on me, they can spend it on some emergency care of some kids with broken legs, or some traumatic victims with head injuries who don’t have insurance.
Because they have a future and I don’t.
So you know I’m fine with that. Some people aren’t. Some people want to cling to every last moment of brain-addled and pain-riddled bed ridden existence they can get. And under our current system, they’re entitled to do so. But those of us, who would rather not go through all that pain and agony at the end, would like to have the choice. I think most people would like to have the choice. Whether they use it or not, it’s nice to have it available.
Jeff: What about the conflict in the medical community? The reaction in the medical community and the doctors’ first responsibility to do no harm?
John: Well, the medical community is enlightened, is growing more enlightened about this. The old “first, do no harm” imprecation of it comes, I believe, from Hippocrates, or whoever it comes from. At that time, I’ve have been informed that the definition of harm included cutting into the body. So once we developed surgery, we were already violating that original ancient tenet.
So time changes perceptions and definitions and awareness of what is helping. I think that a lot of people in the medical community are moving towards the sense of people’s quality of life, the patient’s quality of life, as having a place in the discussion. It used to be that the doctors would say “I’m going to fix you. I don’t care what you want to do. I’ll make that gallbladder behave and I’ll go in there, cut-and-paste, and do whatever.” To them, look at what I’ve done. It’s all about the doctor, but not so much anymore.
Historically, surgeons still are cowboys and good for them sometimes, but you do have to take the patient’s needs into consideration. I think that’s being done more and more.
Jeff: At what point, though, do we determine that patients are able, especially terminal patients, are able to make these decisions on their own? And at what point does that responsibility fall on the family and what changes, once that responsibility shifts?
John: It is always and forever the patient’s choice. How how that choice gets expressed can shift. For example, there exists today and in almost all major medical decisions, you know, patients have to sign a waiver or they have to sign a document because “I know that there are risks to the procedure” or whatever. There are certain medical oversights [inaudible] with major procedures, and you’ll never have one brain surgeon alone doing something. There is always someone there to assist, take over, or eyeball something else. There are structures in place to protect people.
The situation that you’re probably thinking about is what happens when someone is already in a deadly circumstance and wants to make a decision. That’s where part of the problem comes from. People don’t talk about this and think about this ahead of time, and fill out the necessary forms on their advance directive to physicians, or durable power of attorney for health care, that sort of thing.
Then, they may get to a point where they have a brain injury and they can’t speak or they can’t express themselves with some kind of neurological condition, like Alzheimer’s, is affecting them. Or some other communication problem happens. That’s why this sort of thing should be thought about ahead of time. So let’s say at my age now I make this decision and there is this wonderful new checkbox or two on the directive to physicians where I can write in my desires. And I say, “Okay if I’m not responsive for more than a couple hours, then I designate my friend Joe Blow or my relative, Jane Doe, to make the decision, to tell the caring people, the hospital, whoever, to not only stop treatments, but also inject me with the fatal cocktail, because I do not want to live like Terry Schiavo, or Nancy Cruzan, or any of these other people that we’ve famously heard about, who lived in comas as vegetables for years and years and years.
Now If I change my mind, I can always say so. Well, unless of course I have a communication problem, in which case there is a gap. But people who consciously make this choice, I think, are on record as knowing that this is something that they want. They may not always want it. They may change their mind. If they can change their mind, or if they do change their mind and are able to communicate it, then everything stops. You get to stay on as much life support as we got until, or unless they change their mind again. If they change their mind again, we do have to assess their mental state.
There’s a thing in the law, where if you’re going to make a plea bargain, for instance, you have to make what they call a “knowing intelligent and voluntary waiver of your rights”. And it all boils down to the same thing. It’s competence. Who makes that decision, I think again, there has to be a professional making that decision. It has to be a doctor, probably someone trained in psychiatry, and perhaps also with extra special training in death issues, and understands more of the social, familial, and emotional aspects of end-of-life, as well as the medical aspect.
Jeff: What’s been the most aggressive criticism that you received to this?
John: I think the most aggressive criticism I received has been along the lines of “How dare you think that you can play God?” And “No one has the right to do such a thing,” and etc. And I scratch my head and say, “Okay…well, doctors play God all the time when they save someone. And in this case, what the patient wanted saving from was the pain and agony of a future that was horrific to her. So wasn’t I doing a good thing? I understand people who have a point of view like that. It comes from their cultural training, religious, social whatever-it-might-be and they’re entitled to their opinion. They’re entitled to live their life and die their death the way they wish to.
But I would ask them not to force their beliefs upon me, since what I would be doing isn’t hurting them in the least.
Jeff: John West. John, I thank you so much for spending time with us.
John: My pleasure.
Jeff: Thank you. And thank you for listening and joining us here on radio Whowhatwhy. I hope you’ll join us next week for another radio Whowhatwhy podcast. I’m Jeff Schechtman.
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