The Right To Die

Photo: rjhuttondfw

The notion that dying is a right seems nonsensical to argue:  death is given to all of us equally without the need of anyone’s sanction.  The right to die well, on the other hand—well, that’s another matter entirely.  A good death is, in many cases, something our fellow human beings have great power to grant or deny, and is therefore, sadly, a right for which we must indeed fight.

The notion that we’d even need to fight for the right to die well has only come to make sense relatively recently, within the last forty years or so.  Prior to that, our ability to prolong dying—meaning, keep extremely ill people going in hopes that they might overcome whatever health problem threatens even when the likelihood is vanishingly small—was actually fairly limited.  But with the advent of modern intensive care units and all the amazing technology that’s emerged in the last four decades, we can now stretch the quantity of out our last days often to weeks or even months.  Unfortunately, a similar stretching of quality hasn’t yet occurred; if anything, we see the opposite (to be fair, the same technology also stretches some lives to years and even decades, meaning it’s enabled some people to recover from insults that in the past would have undoubtedly killed them).

Health providers don’t wield this technology to prolong suffering intentionally.  As I argued in a previous post, Knowing When To Stop, it’s quite difficult to predict the exact timing of  death, even in the terminally ill.  In one sense, then, the horrific deaths many patients experience at the hands of modern medicine reflects our species’ profound optimism bias.  Even when in our hearts we know it’s time to stop, we often don’t.

Yet as we learn more about our own biases, we begin to have more responsibility for mastering them and for making decisions from a place of realistic compassion, not naive hope.  If we set aside for purposes of this discussion those patients I discussed in that previous post who we genuinely think might have a chance to recover and focus instead on those who clearly don’t, the need to establish an approach about how to effect death humanely becomes readily apparent.  As a result of technological advances, we’re now at a point in our history where we must make active decisions to hasten death, in many instances, in order to prevent suffering that often results from our ability to prolong it.  Which makes it all the more tragic when we choose not to.

Only three states in the U.S. allow assisted suicide:  Oregon, Montana, and Washington.  The requirements are that a patient must be of sound mind as confirmed by a physician and other witnesses and must be diagnosed with a terminal illness.  But what’s fascinating to me about the way people think about this is the following:  though most of the people I’ve asked the question “Are you afraid to die?” have responded “I’m afraid to die in pain,” most of them also, while still in a state of good health, have a difficult time envisioning themselves choosing to swallow poison (admittedly, I’m referring to anecdotal responses of a small number of people).  And though intellectually we may feel we could certainly be brought to the point where we could swallow poison, I suspect few of us can really project how we’d feel about it at the moment we would do it.  But when you listen to people with terminal illnesses who actually do go on to end their lives, you find what is to me a surprising thing:  almost to a person (of those assisted suicides actually documented) they say they feel ready, willing, and able.  Apparently it is possible to reach a point in one’s dying where fear evaporates under the onslaught of discomfort.

It may be strange to say it, but I find this comforting.  Death may be inevitable, but fear of death need not be.  I’d like my death to be as painless as the next person, but if I see it coming (a possibility that increases each year with each technological advance), I’d also like to face it without fear.  I don’t know which, in general, causes more suffering in the end, extreme physical pain or the terror of imminent non-being.  But if extreme pain also has the power to extinguish extreme fear, all the more reason to think the ability to commit suicide at the time of our own choosing might represent the crucial difference between a good death and a bad one.

So my wife and I have discussed it.  “You’ll help me take myself out if it gets to that point, won’t you?” she asks me occasionally.  I tell her I will—and I really will, if it comes to that—but I wonder how.  Not just how I’ll be able to get myself to participate in the death of someone I love (even seeing her in agony, death is just so final), but even I, as a doctor, will make it happen in a state in which it’s illegal.

Though it could be argued the laws against assisted suicide in human beings are largely the product of misguided religious thinking, I suspect there’s also involved a secular reluctance to allow our fellow human beings to kill themselves.  Even though in many cases it’s hard to argue the prohibition against assisted suicide is actually humane, it’s also quite a difficult thing, emotionally, to allow a suicide to happen, much less to view it.  And yet, compassionate action is often hard in general.  Tough love typically doesn’t feel good to anyone involved, the giver or the receiver, for example, but it is usually, when done appropriately, compassionate and wise.

From the Nichiren Buddhist—and I think secular humanist—perspective the alleviation of pointless suffering must be considered the primary aim in terminal cases.  The key concept here, it cannot be overemphasized, however, is “pointless.”  Nichiren Buddhism, at least, is founded on the principle that suffering has a critical function in many instances as the catalyst for valuable inner change.  Pointless suffering, however, of which the preventable suffering of the terminally ill is but one example, remains, from the Buddhist perspective, the great enemy of us all.

Though I’m pledged to prolong life where I can, I’m also pledged to alleviate pointless suffering.  Thus, I very much believe in the right of people to freely choose the method and time of their own demise when they find themselves in circumstances where such a choice has become the only option to relieve their pointless suffering.  We remain profoundly uncomfortable as a society with this position, but our own technological advances will eventually force us to embrace it.  As more and more people die in needless pain and more and more people sit watching, eventually, I believe, we will accumulate enough collective experience to make peace with the notion that what we currently do with our pets is far more humane than what we mostly do with each other.

Next WeekRemoving A Splinter

 

16 comments to The Right To Die

  • So odd, I read this tonight after coming home from the supermarket, where a young man was standing at the door asking shoppers to sign a petition making assisted suicide for terminally ill patients legal in Massachusetts. Although in theory, whenever I consider this, I am in favor of it (certainly to have it an option for myself)—I found myself telling him, I have to think about this.

    I guess I mistrust the writing of laws, and the intentions behind them, and the execution of them, that there can be unintended consequences which might be awful (although I don’t know what they would be). But surely there is a middle ground here? Between the “save at all costs no matter what the suffering” approach, and the assisted suicide, namely, sufficient narcotics to relieve suffering until an inevitable end (without heroic intervention)? Are we once again forcing the simplistic either/or’s that are the devastating plague of our society in every field, from politics to ethics to morality?

    I’d really welcome some comments and perhaps enlightenment on this issue.

  • Dr.Marc gabel

    I think Judith has touched on an important concept in her comment. End-of-life care is way more broad than just relieving pain by narcotics. It is an holistic conceptual framework that includes palliative care, possibly the continuation of possible curative, but more likely ameliorative, therapies, pain relief, and comfort physically and spiritually. Any survey will show that people do not want to die in pain, and they do not want their closest folk to suffer, and they do not want financial disasters a consequence. It also includes, pre-planning, a concept that has even reduced politically into negative cliche. Too few die with proper full care including palliative care. Too many get needless surgery in the last week of life. I do not know the final role of suicide in the equation, but believe that it can be a question that no longer needs to be asked if we have proper respectful, compassionate end of life care available to all.

  • shellonwheels

    I find it so very ironic that we turn a blind eye to people living on the streets, to the mentally ill being tossed aside, people starving to death, dying from poverty, unnecessary illness but no medical insurance, etc., but let one person talk about assisted suicide and all of a sudden people come out of the woodwork to save their life. Why are we so interested in saving one life (of someone wanting to let go of it) but allowing thousands to die a slow, painful, often shame-filled death?

  • Judith,

    Yes, we should take the middle way here. The option for suicide in one of sound mind, but also the option for method, and a protocol for those who have already left their body, which is now being propped up via machinery. I believe today morphine overdoses are often the kindest back-door way, but why not allow this to be out in the open?

    I have seen people choose for prolongation of terrible existences for vegetative, elderly relatives (stomach feeding tubes, etc.), and the motivation seems to be financial (i.e., caregiver and retirement fund will keep flowing.) The individual will never awaken from the flatline, but a year or two more of benefits will continue.

    That sort of thing speaks to the need for a more consistent medical approach. Viable people are being denied healthcare while terminal people who wish to die eat up a hugely disproportionate amount of health dollars. We are going to need some rational debate if we are to be a compassionate society, and one of limited governmental dollars and resources.

  • miriam

    Shellonwheels hit it on the head. I live in Oregon. Recently the police in my town broke down the front door of a house in order to get entry because they had been informed that someone at that address had received a suicide kit in the mail. Meanwhile thousands of people in the town go without medical insurance, and probably many people have had their lives cut short or suffered needlessly because of lack of medical care.

    BTW, Oregon is one of two states, the other is Washington, that allows physician assisted suicide. The law has all sorts of safeguards to protect against misuse of the law, and all reports indicate that it has not been misused. I personally feel the law is too stringent in that a physician cannot prescribe medication for a suicide unless two physicians certify that the person has less than 6 months to live. And the person needs to be able to freely swallow the pills in order for it to be legal. However, there are people with terrible diseases like ALS who gladly want to die but who are unable to do so because they can no longer swallow a bunch of pills.

  • Steven Crisp

    Alex,

    Another an insightful post on a very emotionally confusing topic. Thanks.

    As someone whose parents each had less than idyllic end-of-life experiences, I can repeat what I have heard many claim, and that is Hospice care, and their workers, are certainly a blessing in our society.

    S—

  • Although their are religious groups who are against assisted suicide, I can’t help but suspect that the insurance industry has something to do with its illegality as well. Life insurance doesn’t pay for suicide, and if it was required to and if your policy expired in 6 months and you want to die this month—they would want you to stay alive just long enough to not pay a claim. If assisted suicide ever becomes the law of the land they’ll have to resolve these issues as well. What does Washington or Oregon say about life insurance on these issues? Do they pay out claims or not, when you take your own life?

  • Taryn

    This is a topic that is very near and dear to my heart. At the age of 11/just turned 12, I watched my mother die at home from ALS. This has to be one of the cruelest deaths. An alert mind held captive in a body that can no longer respond to the brain’s commands. For my mother, the first thing to go was her ability to speak/swallow. Her speech became so garbled she could only communicate via pen and paper. Her food came in the form of liquified foods poured in through a stomach tube. Soon enough, her hands could no longer hold a pen. The inability to communicate even basic needs was extremely frustrating for her. She would BEG us to overdose her on the pain killers. She would empty out the food that had just been put in, in an effort to starve herself to death. It took about 8 months of being bedridden for this horrible disease to finally take her. She weighed only 60 lbs and was completely immobilized at death, yet her mind was completely intact. She was aware of every indignity and pain this disease had to offer. And she wanted out of this life much sooner than she was granted it.

    No one should have to die like that.

    Having seen what my mother suffered through, I am a firm believer that assisted suicide, euthanasia, whatever you want to call it, should be a legal option in every state. When my time comes, if I need the push, I will, without a doubt, relocate to a state that allows it.

  • Ruth Kalter

    Thank you for writing so openly about this all-important issue.

    My 87-year-old father was recently placed on hospice care when we decided against a feeding tube because we were told it would not improve his quality of life. He is having trouble swallowing, so is aspirating some of his food, which will likely lead to pneumonia, which will almost certainly end his life. Pneumonia used to be called “the old man’s friend.” It used to kill us, before antibiotics, and I’m told it’s not a bad way to go, as long as comfort measures are given.

    In the few weeks since we did not go with the feeding tube option, my father has continued to feed himself and enjoy food. He does still choke and aspirate some of the time, but so far with suctioning he is maintaining pretty well. I am so glad we did not do a feeding tube. Not only would his quality of life NOT have improved, it’s now clear to me it would have been worse. I feel better accepting the inevitability of the end of his life, even while I don’t ever want to say goodbye to him.

    I appreciate very much your distinction between “realistic compassion and naive hope.” Helps me name where I come from on these kinds of decisions.

  • Tara

    I recently watched the video You Don’t Know Jack about Jack Kevorkian. I had no idea he had helped more than 150 people end their suffering. I admire his courage to help those in need and I long for the day when assisted suicide is legal throughout the USA and the world.

    I firmly believe that a month too early is far better than a week too late when it comes to end of life decisions for myself and my pets.

  • winterborn

    I’ve talked to my (very conservative Christian) family a lot about my rather ardent view that any human being suffering from a terminal illness most certainly has the right to take control of their fate in whatever way they see fit.

    From a common religious viewpoint, God is ultimately in control and has the “final say,” as it were—therefore we do not have the right to make such decisions. But taken to its logical extreme, that thinking would say no intervention should be attempted either to prolong life or to ease death. I ask: Once man has meddled in the affairs of life and death, how can we mark a finite point at which those same affairs become solely the province of God?

    Of course, many people can’t help but react to the idea of this kind of suicide with raw emotion. They picture their loved ones, and even though death is the ultimate outcome anyway, the thought of those lost days and hours seems unbearable.

    I hate to think that the objections and emotional burdens of family members very often prolong suffering, but that is so. I know that if the time came for me to make the decision to end my life, I would have a difficult time knowing my family would never understand that choice.

  • Jesse

    Thanks for writing this, Alex, and thanks especially for being honest and telling the plain truth about this topic, rather than trying to avoid controversy.

    It is a tragedy of human existence that we do not feel each other’s pain. The most oppressive consequence of this tragedy is the that we impose our preferences on others even as it causes them terrible suffering. It is transparent to us, and unless we make specific efforts to empathize with it, it gets lost in the shuffle.

  • Brian

    Excellent article, Alex. I’ve found your website to be a tremendous source of wisdom and insight.

    Thank you for being honest, and not trying to chart a phony “middle” course on this question. Of course assisted suicide should be a legal option for those who are terminally or incurably ill. Without the legacy of religion, there would not even be a discussion on the question.

    The problem is that as human beings we are inclined to use our own emotions as a guide for these kinds of questions, as we do with all other questions. But in this situation our own emotions are oblivious to the key ingredient that drives the issue: the pain itself, what the patient is feeling, and will have to continue to feel if he or she continues living. Without that information, it is sheer arrogance to think we know the answer. Extreme illness is a time to listen to and honor the wishes of the afflicted, not a time to impose or project our own personal feelings on the matter.

    http://sites.google.com/site/scientificdharma/compassion

  • nifto

    For many reasons, if someone were to attack me, I am prepared to fight to the death rather than be raped. Many people would not agree with this decision. I do not care.

    I feel the same way about end-of-life. My vote counts more than anyone else’s.

  • Tracey

    Straying from the subject slightly: I have a Do Not Resuscitate form (along with an additional request not to perform heroic measures to keep me alive) on file with the local hospital, with my primary care doctor, and with my husband, but it appears not to be enough. One of my biggest horrors is to be kept alive in a vegetative state indefinitely, locked in my body like a butterfly unable to break free of its cocoon. Imagine my frustration when I learned how easy it is for just about anyone to override my wishes.

  • nifto

    Oh great. I thought that with a DNR, that would be the final word. HOW is it possible for someone to circumvent that?

    nifto: No one should. Sometimes communication mistakes are made, but in general, DNR orders are respected in most medical contexts.

    Alex

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