Book World Live: A Personal Story of Assisted Suicide
Monday, February 9, 2009; 1:00 PM
In a new memoir, The Last Goodnights, John West writes about his decision to help both his terminally-ill parents end their lives, separately, by assisted suicide -- first his father, who suffered from cancer, and then his mother, who had Alzheimer's Disease. West was online Monday, February 2 to discuss his book, his decision to come forward and speak about his personal experiences with the the controversial topic of assisted suicide, and the reaction so far to his story.
A transcript follows.
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John West: Hello, everyone. I'm John West, author of "The Last Goodnights," and I'm looking forward to chatting with you today. This is my first on-line chat, so if I'm a bit slow at first, I hope you'll forgive me.
washingtonpost.com: John, since your book is so new, could you first take a moment to tell us a little bit about your story, just a brief outline of what this memoir covers?
John West: My book is a memoir of how I assisted both of my parents with their suicides. My father (a well-known psychiatrist) was dying of wide-spread cancer, that was literally eating him up by the day. He had only a few days left, maybe a week or so, and didn't want to spend any more time in physical pain, or the pain of feeling dependent and deteriorating.
My mother, on the other hand, was slowly falling prey to Alzheimer's ... but she was a psychologist, and losing her mind was the cruelest form of death imaginable to her. She had no interest in turning into a vegetable, and so she chose to end her life sooner rather than later.
And even though I'm a lawyer, and knew it was illegal, I helped both of them, because I believe in the freedom to choose in private medical matters, and -- perhaps most importantly -- I loved and respected my parents.
Chicago, Ill.: I read the excerpt, but not the whole book. I kind of need to keep my PCs clear in case something comes up.
There are some questions about my Mom's choices and actions in the last week of her life. Not taking medications could have been memory problems, or it could have been a choice. I respect her choice. It doesn't make my choice any easier.
Thank you for discussing your situation in the open. It helps me.
John West: The whole point of my book was to get these things out in the open. They're done covertly all the time, but that's unnecessary. The more we talk openly about important issues, the sooner we get the problems fixed. Good luck to you.
Silver Spring, Md.: I can't imagine a more cruel disease than Alzheimer's. It steals the soul and leaves a living shell behind. Some can't bear to see what is left of their loved ones. Should I be so afflicted I hope I have the presence of mind to exit with some grace and dignity, because what is left behind would not be me. With an aging boomer population that has a shattered family not to fall back on, an Oregon-like law is needed. Watch Medicare explode.
John West: Yes, the demographics are kind of scary. Washington State just passed a law like Oregon's, and Montana seems to be about to go that way too. Keep your eyes and ears open, folks, pay attention, and let's get the laws changed so that people don't have to suffer needlessly in their last days.
Anonymous: I believe that it is not our place to take someone's life even if we think it is for their good. Whether it is someone we love or someone we dislike, do we choose to "kill" them? I don't think so. It is God's place and timing for anyone's death.
John West: I respect your position, but consider: It is the choice of the person dying. Who are we to say that their decision isn't part of "God's plan" or something like that? And if I help someone in that situation, am I not aiding in God's plan? I don't know how anyone can know these imponderables, but I think it's OK to talk about them. Talk, yes. Yell and shoot, etc. No.
Savannah, Ga.: Are you at risk for prosecution in either of your parents' deaths?
John West: Yes. It's possible. Assisted Suicide is illegal, for a "civilian," everywhere in the world. But it's done all the time, not only by friends and family, but by doctors and nurses and other health workers. It's time to open up this dark room, though, and make it safe and legal. The loving, caring people who "assist" shouldn't be turned into "criminals" for doing loving and caring things. That's really wrong.
Los Angeles, Calif.: What legal problems might you have faced with what you did, and have you been threatened with any legal actions?
John West: No legal actions threatened yet. But it's only been a week. We shall see. But I wrote the book to take a stand. To "Stand And Be Counted" as David Crosby's song so aptly puts it. We all need to be willing to stand up for what we believe in, and I'm standing up for the privacy and dignity rights of a group that we are ALL going to be members of. Because EVERYONE dies. So we all need to think about how it's going to be: Painful or Peaceful. Don't you want that choice? I sure do.
Washington, D.C.: I understand that your parents were both medical/mental health professionals. Did that affect your decision to help them end their lives? If they were from different fields might you have decided differently?
John West: Great question. Yes, I'm sure it did. The fact that they were medical and mental health professionals made it easier for me to accept the rationality and insight of their decision-making. Even my mother, who admitted to depression, was able to convince me of her solidity of purpose. She said something like, "My husband of 50 years just died, and my brain is turning into cabbage ... of COURSE I'm depressed! I have a RIGHT to be depressed!" That kind of insight goes a long way toward proving seriousness of purpose.
Maryland: "It is God's place and timing for anyone's death."
In that case, we shouldn't work to extend the lives of those with terminal diseases or those incapacitated by injury, either. "God's plan" does not include ventilators and feeding tubes!
John West: Actually, perhaps it does! Now, I'm not religious by any means, but I look at it this way: Modern Medicine is great! I love the fact that my old soccer knees can get replaced with titanium someday, or my pizza-clogged heart arteries might get roto-rootered clean by a tiny robot. And I LOVE the modern anesthetics, especially when it comes to dentistry! But Modern Medicine, while it keeps us living longer, is also, by definition, keeping us DYING longer! So we need to take a closer look at what kind of quality of life we're talking about, and be realistic.
Anywhere, USA: My poor mother had to be off life support for 10 days before she passed, my dog had to endure a few moments before she was able to go to the big dog park in the sky. I believe I will go to my Vet if I get sick, my dog got better treatment and it was with dignity.
John West: Exactly. We seem to have more compassion and kindness towards our pets, and provide them with more dignity, than we do ourselves. It should actually be the other way around, if you think about it. A human can SAY "give me the pill" whereas we can't know what our dog might actually want us to do. So, in a way, it really is easier and more rational to give humans a choice.
Also -- THIS JUST IN -- I learned from a friend who's a police officer that the current laws against child abuse actually came from the cruelty to animals laws! Imagine that! There was a time that people could beat their kids, but not their dogs. So the laws were changed. Using the same pathway, we can end the suffering of our pets, but not ourselves? Insane. Let's get those laws changed!
Arlington, Va.: Thank you for sharing your story. I believe in everyone having the choice to live, and die, as they choose. There really is no greater freedom available to us.
But your story and movies like "The Life of David Gale" shed an interesting light on a difficult question -- how can we regulate what is truly assisted suicide when the dying individual WANTS/CHOOSES their own death, versus others choosing for that person? I wonder what kinds of legal hoops people will have to go through to "prove" their case.
Again, thanks for being so open and brave. I hope, if I'm ever in a situation similar to your parents, that I will have a child or loved one willing to risk so much to help me die with dignity.
John West: Thank YOU for your kind words. But I have to say that my hope for you is that if you're ever in the situation my folks were in, then I hope the laws have been changed and you don't need to jump through these "criminal" hoops, or make your family members or friends have to choose. I don't want anyone, ever, to have to go through what I went through. I'm a pretty tough bird, and it kicked my ass. Hard. So I don't want anyone else to go through it.
The laws in the states like Oregon, and just recently Washington State, are pretty good models. They aren't perfect, but what is? At least it's a good start, and we have to start somewhere.
Arlington, Va.: Has this experience caused you to make plans for yourself in case you should become ill and incapacitated (living will, etc.)? What could your parents have done to make this experience easier (which seems like the wrong word, I hope you know what I mean)?
John West: It's important for everyone to have a will and an advance directive to physicians and a durable power of attorney for health care. Any competent estate-planning attorney can get you set up with the necessary documents. And there are things like adding a "Do Not Resuscitate" sticker to your driver's license, and those sorts of things. Other than that, only in Oregon and Washington State (and perhaps Montana, soon) can you actually make arrangements to get life-ending drugs from a doctor ... in certain limited situations.
There's really nothing my parents could have done differently, because we were in CA.
Washington, D.C.: How advanced was your mother's Alzheimer's when she died? Seems like it would have to be pretty early on for her to be able to make the decision, but did she want to die then, or did you define some kind of criteria for when it was time?
John West: It's really hard to quantify things like Alzheimer's progress, but the neurologist seemed to think that she had a lot of brain left. Her speech was unusually bad (aphasia) while her mind was unusually good, by comparison.
It was, indeed, pretty early on for her to make the decision, which is why I felt so much conflict myself. She had a lot of "herself" left, and I selfishly wanted to share it with her and keep connected with that ... but we both knew that if we waited too long, it could be a disaster. And that's why I don't think I've ever met anyone so brave. Knowing she could have lived another year, perhaps, with some "awareness" and then perhaps another dozen years beyond that "in a fog" (or blank), she still said, "It's time to go." What a brave soul she was!
Springfield, Va.: Your point about medical science keeping us "dying longer" is interesting. My friends in the medical field often say that relatives keep dying people alive for much longer than they should because they don't want to have guilt over "killing" their loved one. I have also heard many times if there was a meter running showing the cost incurred leeping someone alive who is going to die anyway, people would make the decision to suspend medical care much faster. Do you think this is true?
John West: I think it might be true. A "meter" is an objective way to show people the truth of what's going on. In the absence of some device to remind people of what's outside their heads, people tend to stay in there and wrestle with guilt and other emotions ... which is fine, but it's important for everyone, especially in difficult situations, to wake up, act and think like a grown-up, and consider the bigger picture.
If Joe Blow wants to spend every last dime he and his family and his insurance company have, in order to grasp every last moment of pain-riddled, brain-addled, bed-ridden existence out of his body, then he's free to do it. I'm not saying he HAS to check out early. But if what he's doing sounds horrible to me, if I want to allocate those hundreds of thousands of dollars to inoculating or feeding kids or something like that, instead of spending an extra 2 weeks in a hospital, that should be my choice.
Washington, D.C.: Please address the quandary between loving and caring assistance to one who has made a decision to end their own life, versus I/we am/are tired of dealing with the individual's suffering -- because it does hurt and is difficult to watch another suffer. How does the assistant KNOW exactly what the sufferer really wants -- at the particular moment?
John West: Well, this is exactly why the laws HAVE to change. The existing laws mean well, and the idea is just what you've stated: to keep enemies and predators (disguised as friends and family) away from the decision-making process. It needs to be up to the individual alone, in concert with his or her doctor, and that's that. And if the doctor thinks the patient is being coerced, it's the doctor's responsibility to make further inquiry, perhaps call in for a psych evaluation or even investigation of the home. Of course, Modern Medicine has become too corporatized for this kind of humanity, which is another aspect of the conversation.
Baltimore, Md.: Why do you think it is states such as Oregon, Washington and now, possibly, Montana that have been at the forefront of the right to die movement?
John West: Political liberality seems to hover in the west. California and Hawaii recently failed (narrowly) to pass similar legislation. Maybe it's the old "Spirit of the West" that keeps the Left Coast as left as it is. We're all cowboys out here, right?
New York State: I am single and childless, so my greatest fear is of not being able to take care of myself someday. It is my plan never to be treated for an expensive disease like cancer, so as not to dissipate my already inadequate retirement savings (I'd rather leave it to charity and my nephews), but if I discovered I had a creeping disease like Alzheimer's, I'd have to rely on assisting myself while I still could. Since I am not suicidal, and am as subject to all the social taboos about it as anyone else, I expect it will require years of steeling myself up to be ready to do it, if I ever found myself in that situation. This strikes me as a somewhat dysfunctional thing to have to think about. Your thoughts?
John West: I don't think that any serious thought is dysfunctional. You're a human being. You have a big brain. Good for you for choosing to use it! When I was a kid, my dad often chastised me for dumb mistakes by saying, "Use your head for something besides a hat rack!" And I loved it! Because it's true. We need to use this great coconut and think about the harder issues, because that's the only way to learn and grow, and for society to advance.
You may find that the more you think about it, the less afraid you are. Knowledge is power. Maybe you'll visit a friend in the hospital or a hospice, and decide it's not so bad, and you'll give it a try. Or maybe you'll volunteer for a group that does some of this work, and you'll see it up close and learn how others think. There's a lot of good literature out there from the hospice movement, that might be something for you to read. (AFTER you read my book, though, OK?)
Seriously, good for you for thinking about these things. Talk with your friends about it. You may find you've got a group of like-minded friends, and can form the nucleus of a group that can get some political action going. It doesn't take much. Keep me posted.
Which reminds me, you can keep your eyes on what I'm doing by checking in at the website: www.TheLastGoodnights.net
Rockville, Md.: How did you actually help your mother and father commit suicide? What was the actual process?
John West: Short answer: Drugs. Morphine and barbiturates.
The longer answer, and the process, are what the book was written to discuss. You can read the foreword on the book's website (www.TheLastGoodnights.net) and actually, the ABC show "Good Morning America" had me on last week, and their website now has the foreword AND the first chapter, so you can at least get started there.
Anonymous: I found out recently that my beloved grandmother, at 95, asked my mother for help ending her life. My mother refused, saying that my grandmother didn't have a terminal illness and she didn't want to be arrested.
My grandmother had diminishing functions and was terrified of lingering. She was disappointed but took things into her own hands, stopping the heart medications she needed to take. Her death was slower and perhaps more painful than it would have been, and I wish she had had an option to get help ending her life.
John West: Well, here's another example of why the laws have to change. A dying person shouldn't be left to the mercy of differing opinions about their treatment.
Also ... we ALL have a terminal condition. Life is terminal.
And we're ALL going to face the end, sooner or later, so we need to pay attention and get things figured out for ourselves. We CAN change the laws, we just need to stand up on our hind legs and make a little noise. That's what I'm trying to do with my book, and I hope to get to every single state and multiple towns in every state, and talk about this so that people can see it's nothing to be afraid of.
Ellicott City, Md.: I'm a bereavement counselor for a hospice. I'm fascinated by this discussion and have a lot of respect for what you've had the courage to do. In your opinion, how does hospice fit into all of this?
John West: The hospice world is so important. Those workers are true angels. These people who care for the terminally ill all the time have to have the biggest hearts ever. It isn't easy to be around death all the time, even if you've got a thick skin and either tons of faith or none.
Where hospitals try to keep people alive as long as possible (for monetary and statistical and liability reasons) the hospice world is where people are "allowed" to die, with as much pain-relievers as possible. Sometimes people linger a long time in hospice care ... and even end up going home, after getting a bit better! But until we have a bit more control over our end-of-life decisions, the hospice world is doing great things.
Anon.: Is "unassisted suicide" okay? (We all get depressed...)
John West: I wouldn't say that suicide is "okay" because most people who want to commit suicide, who are depressed over something, really just want to be helped out of the depression. And they can be, in almost every case. Modern Psychiatry and pharmaceuticals can make a HUGE difference in people's lives. I would ALWAYS recommend that people talk with a psychologist or psychiatrist if they're feeling suicidal, or even just depressed, because there's no reason anyone needs to stay in that place. It can get fixed, it really can.
Actually, it used to be that suicide was illegal! Imagine that! You'd try to kill yourself, jump off the roof, just break a bunch of bones, and then get prosecuted for attempted murder of yourself!
That's not the case anymore. In all states (I believe) if someone attempts suicide they're offered counseling. So, suicide is legal, but if I help you do something legal, that's illegal?? Whaaaa?? Yeah, kind of Kafka-esque.
Blacksburg, Va.: Thank you so much for writing this book. Our society has too long avoided any discussion about death. I have seen too many family members suffer in their last few months -- and one family member who chose hospice, and had a beautiful death surrounded by family.
I admire your family for being so forthright and honest with each other when talking about these issues. I wish my family had done the same.
John West: Thank you for your comments. The more we talk about these things, the easier it becomes. Shine the light on the darkness, and all the monsters seem to disappear.
Knowledge is power!
And one of my favorites: "A mind is like a parachute. It functions best when open."
New Baltimore, Mich.: What sort of protections do you think should be in place to avoid coercion? I've heard that in countries that permit assisted suicide there is a higher rate of women choosing it than men, and one of the theories is that they "don't want to be any more trouble."
I support the right to refuse to extend your life but am ambivalent about assisted suicide, in part because of the possibility for its abuse.
John West: The laws in Oregon (and now Washington State) require 2 physician to agree that you're facing death from a terminal illness within 6 months, and you're in extreme pain, and that you're mentally competent to make the decision to take life-ending drugs. It's a good structure, but not perfect. For one thing, not all "terminal illnesses" are on the list. Things like Parkinson's and Alzheimer's and M.S. aren't on the list. And maybe they shouldn't be, not yet. But people with those conditions, and similar conditions, will sometimes tell you, "Put 'em on the list!"
I think it really boils down to: what does the patient want or need? Then it becomes a discussion between the patient and the doctor, the way it should be. This is a personal, private, medical matter. Not much different from making a decision about whether or not to have a cancerous tumor removed, or other serious surgery. You weigh the options, and you make a decision. Will your choice always be right? Of course not. But you make it based on the best information you have at the time, and you go with it. That's called LIFE. Reality. It isn't perfect. But it's always better if we approach it honestly.
London, U.K.: There was a situation recently in which a 23-year-old rugby player was badly paralysed - he lost the use of all four limbs (although he still had some feeling in his fingers, apparently). Following his wishes, his parents took him to a suicide clinic on the continent, where a volunteer helped him die.
What sort of counseling procedures would you like to see in place for assisted suicide? By all accounts, the young man was intelligent and although the paraplegia was the end of the life he had planned, it certainly didn't have to be the end of his life. If he had had someone counseling him, there's no reason to think he couldn't have had many more decades of a life to live and enjoy.
John West: Very good points, here. I've followed this case pretty closely, as you might imagine. In this young man's case, it might very well have been that once a sensitive psychiatrist had helped him get his ego to accept that he had more to offer to the world than rugby-playing, perhaps he'd have stayed alive, and become a useful member of his society.
Still, you have to wonder about the huge costs of rehabilitation, and the pain to the young man, and his family, and etc. It's a very difficult calculation. I never said any of this was easy, did I?!?!
But ultimately, truly, it's each person's choice. If a person wants to die, they can get it done: Guns, knives, closed garages, tall bridges, fast trucks, train tracks, insulting a gang on the corner .... death is available all around us. But for a DIGNIFIED or PEACEFUL death ... especially if a person is disabled in some way, that requires help. And in the case of someone like this young rugby player, well, ... these are always the hardest decisions to make. I'd guess that his family really trusted the young man's judgment, and honored his wishes. It's their call, at that point, and I think we send them our deepest condolences, and wish them well.
State Laws: I'm not really familiar with the laws dealing with assisted suicide, so I am wondering how the laws are supposed to deal with-for lack of a better term-the criteria for deciding when/if someone is sick enough to warrant the action. Who decides-the doctor, the patient, the family or the courts? Do they handle mental illnesses differently then physical ones? Does the age of the patient matter? It just seems like such a slippery slope with the ablity to become very unfair and discriminatory very easily. Is there a lot of legal oversight in the states where there are laws that allow it?
John West: There's a LOT of legal oversight in Oregon and now Washington State, as in The Netherlands, Belgium, and Switzerland, where it's currently allowed. I'm not on intimate terms with all those legal documents, but you could probably find them online. They'd have lists of "qualifying illnesses" and things like that. And I'm almost positive that mental illnesses are an automatic disqualification. You have to be competent to make the end-of-life decision, and many (not all, but many) mental illnesses would disqualify you from being considered competent to make such a serious -- and final!-- decision.
John West: Well, I'm a bit over my time, I see. It's been great chatting with you folks, and learning another way to communicate. Please do check out the book, and the website.
The Last Goodnights
Thank you very much for your interest. Let's change the laws and make things better for everyone. We're all going to face it someday, so let's start looking at it now!
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