A good death is a right we must fight for

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 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.  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.

Alex Lickerman is an internal medicine physician at the University of Chicago who blogs at Happiness in this World.  He is the author of The Undefeated Mind: On the Science of Constructing an Indestructible Self.

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  • http://www.facebook.com/rob.lindeman1 Rob Lindeman

    The author assumes that the right to die well necessarily entails “assisted suicide”. Does the author rule suicide (auto-homicide) out of bounds?  As it is our duty to treat and to heal, and not to kill, we ought not to practice assisted suicide (hetero-homicide).  Neither should we interfere with the process of dying if the autonomous person wishes us to desist from treating him.

    • Alex Lickerman

      My thinking is that assisted suicide is often, though not always, required to enable a person to die well.  I’m thinking of situations in which terminally ill patients are pushed past the point where they can commit suicide without help due to the progression of their disease (e.g., ALS), but often aren’t ready to contemplate suicide until that happens.  Puts some people in an untenable position.

      • http://www.facebook.com/rob.lindeman1 Rob Lindeman

        And my thinking is that the term “assisted suicide” is a mis-nomer.  We ought to call it by its proper name, homicide. You may choose to call it “justifiable homicide”.  That’s fine. I insist that physicians are not in the business of killing people.  We may allow them to die, if that is what they wish, but we shouldn’t kill them, even if they ask us to.

        The State claims unchallenged authority to kill its citizens (guilty of capital crimes) or non-citizens (enemy combatants); when physicians claim the right to participate in killing, we are petitioning to act as agents of the State.  Count me out.

      • Anonymous

        Assisted suicide may enable some to die nicely and easily, but not WELL. We have lost the art of dying well.

  • http://www.facebook.com/people/Terence-Ivfmd-Lee/1523282856 Terence Ivfmd Lee

    Would it be fair to 100% respect somebody’s wish to terminate his own suffering, but also respect my personal wish not to participate? If the counterargument is that we, as physicians, have a monopoly on being able to assist suicide, rather than pressure us to participate, why not work on ways to relinquish that monopoly and allow soldiers or police, both of whom are much more experienced and adept at it to do the deed?

  • Payne Hertz

    In a free society, it would seem perfectly logical and reasonable that people would be able to make this choice for themselves, and the cruelest tyranny imaginable for someone else to force a horrible death on someone against their will, or deny them the means of an easy and painful death. Denying someone the means to a peaceful death is tantamount to causing them to suffer a painful one.

    But we are not a free society,  and thus we accept as a given that religious leaders and those who profit from the prolonged agony of the dying or chronically ill should be able to make this choice for us. Those of us who consider this a brutal and barbaric affront to our liberty have no say in the matter. This has to change.

    As a society we need to get the point where individuals can make choices about how and when they wish to die without anybody having veto power over that decision. Everything else is tyranny.

    • http://www.facebook.com/people/Terence-Ivfmd-Lee/1523282856 Terence Ivfmd Lee

      It’s reassuring to know that there are others who seek to work towards a truly free society. There is hope.

  • Payne Hertz

    You should certainly have the right to opt out of participating in an assisted suicide, but should have zero right to decide whether a particular person can avail himself of the means to kill themselves alone or with the assistance of another. No one should have that monopoly.

  • barcabela

    Palliative care is expensive, death is cheap: that´s the question. We have the knowing and the resources to keep our patient´s confort until their natural death, but that means investing in people, know-how, teams, some simple technology and, of course organization and good mangement. Is it worth? It depends on how we value other people´s lifes.

    • Anonymous

      What I infer from the good doctor is that death – in the US – can be far from cheap. You can suffer a lot, while consuming hundreds of thousands of dollars in medical care, and still die a bad death. Palliative care does cost money – so does spending the past few weeks of your life in ICU or chemo.

      Even before we get to weighing costs, however, we as a society have our work cut out trying to get patients and families to know there are choices like palliative care, not only for the dying but for people who live years with a disease that will kill them someday.

      If we value quality of life – not just quantity however miserable – let’s promote palliative care options.

  • Anonymous

    I have euthanized several much-beloved cats, and there is no doubt that it is an emotionally gut-wrenching experience. But when there was NO possibility of any reasonable quality of life for the animal, I could see no other moral or ethical choice. Why can’t we extend the same compassion to human beings?

  • Anonymous

    I’m sorry, I don’t follow the logic: “…and focus instead on those who clearly don’t, the need to establish an approach about how to effect death humanely becomes readily apparent.” The inevitability of death in certain cases does not necessitate the hastening of death. There is never a need “to effect death,” although it could be argued that it would be desirable (but that’s not beyond dispute).  “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.” Hastening death as an intentional act (as opposed to a foreseen but unintended consequence of, say, pain relief) is not the only way to prevent suffering, and if it is, then I think physicians have thrown in the towel.

    A few distinctions.

    In the phrase “a good death,” the word “death” can refer to either the biological process of the cessation of life, or it could refer to the manner in which that process is faced by the one dying. One could say that sacrificing oneself to a horrible, violent death to save innocent people (as for instance the police or firefighters might do) is “a good death” even though the process is horrible. In contrast, a comfortable, painless dying process because of (just an example) cowardice to face suffering could be called “a bad death” even though the process is in some sense good. It would seem that the former is always a good death, whereas the latter is not always.

    I am also not sure that treating people like animals is compassionate. It’s treating them like animals, after all. Animals cannot face suffering with courage. They do not seek meaning in it. They cannot benefit from it in any way. While I do not say by this that all human suffering is therefore good and people ought to suffer, human beings can “face suffering” in a way that animals cannot. For them it is only pain. For humans it can be so much more. Outsiders cannot give meaning to a suffering person’s pain, nor demand the sufferer to find some value or benefit in it and buck up. It is an individual thing. 

    But I think we do them a major disservice also by agreeing with them that “Your life has no value anymore. You’re better off dead, and we’re better off, too. I’d kill my dog if it were suffering like you, so I’ll do you the same favor.” I know that sounds a little crass, and that’s by intention to a degree, but if Granny says, “Oh, I wish to end it all,” and we agree with her, then that’s what it boils down to.

    And, one last thing: If the experience of Belgium and the Netherlands is any example, what begins with narrowly defined compassion for narrowly defined patient types soon becomes a broad and lax.

    • Alex Lickerman

      The point I was trying to make was that in circumstances in which there
      is no hope for cure and the patient himself declares his suffering
      pointless rather than meaningful (a judgment only the patient himself
      can make) then in my view our responsibility is no longer to prolong his
      life but to ease his suffering and that if we can’t do that to his
      satisfaction by attempting to relieve his pain (or by relieving whatever
      symptom lies at the root of his suffering) that assisted suicide (if so
      requested by the patient), becomes the most humane option.  Whether or
      not, as commenters below have argued, this should be done by doctors or
      others is a separate and debatable issue.

      • Anonymous

        Death does not alleviate suffering. It does not target or address the suffering, the way amputation targets a diseased or mangled limb, or antibiotics bacteria. It alleviates the suffering by terminating the sufferer. Think about that for a minute. It’s like amputating a limb to treat arthritis — I would think that some people with arthritic hands would be glad to be rid of the hand altogether rather than feel the pain.

        Honestly, I hope I never have a doctor who’s willing to kill me or anyone else who asks him to. Why should I trust my life to someone who would just as soon kill me if I convinced him forcefully enough that I wanted to die? Who would abdicate professional guidance in the name of “just following orders”? A “physician” would agree my life is worthless only because I say it is, and fails to see any intrinsic value in it even if I don’t, or who lacks the wisdom to convince me of it in my darkest hour? I am working up my resolve now to fight, fight, fight for my life when I near death, because I have an ugly feeling that I will have to resist all manner of pressure on me to die before my time.

        Because assisted suicide does not remain there for those who want it. It becomes an option that only a fool would not choose. It then becomes a duty that only the most selfish and unthinking would not choose. It pressures the weak and dying to die already and get it over with. It impels society toward involuntary euthanasia for those inconsiderate enough to want to live when everyone else judges that it would be more humane some other way.

        So, there is no separate argument about who should do it. 

        But, for what it’s worth, I think it should be veterinarians.

    • http://profiles.google.com/molly.ciliberti Molly Ciliberti

      I have had many many patients ask me if we can give them a peaceful death like the vet can for animals. I had to tell them we were not humane enough to see that their suffering has no meaning, doesn’t benefit them in any way and instead feel compassion for them. After you have cared for the dying and have seen their suffering, then you might sing a different tune. 

      • Anonymous

        You may be right. I have had little first-hand experience at what you say.

        On the other hand, a person’s suffering and pain — not to mention the person — will never have “no meaning” to me, even if they cease to have meaning to the patient.

        You didn’t “have to tell” them that. You could have said a lot things. Like, “I don’t want to treat you like an animal, but a person. Animals become worthless, people don’t. Animals can’t be courageous, you can.” Just off the top of my head.

        No offense, but I do hope you are not at my beside when I face the end.

  • Anonymous

    This article really isn’t about the right of patients to die as they choose. It’s about the right of physicians to help them do it. A suicidal person does not care about laws against suicide. The one who cares is the accomplice who helps. This is really about the accomplice’s rights.

  • http://www.facebook.com/drjoe.kosterich DrJoe Kosterich

    The question always arises. Whose interests are we serving by seeking to extend life when death is imminent?

  • http://profiles.google.com/molly.ciliberti Molly Ciliberti

    As
    a former ICU/CCU nurse, I want the right to choose to die at home using
    euthanasia if I am terminally ill as allowed in my state of Washington. The
    last place I want to die is in a hospital; I can’t imagine anything worse. I am
    an atheist and it angers me that other peoples religious ideas can keep me from
    having control over my own body. We already play god by keeping people alive on ventilators, IV’s, etc. I won’t choose for you so don’t you demand that my death be on your terms.

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