Ethical Lessons From Locked-In Syndrome: What Is a Living Hell?

A recent important study by Stephen Laureys and colleagueson what it is like to be to experience severe brain damage has been widely reported. (eg, http://abcnews.go.com/Health/Wellness/locked-patients-life/story?id=12984627). Laureys and colleagues surveyed the views of people with “locked-in” syndrome. This syndrome, which typically occurs after certain kinds of stroke, results in the person unable to move his arms or legs and unable to speak. In some cases, they can move their eyes and communicate through eye movements but in other cases, the eyes are paralysed. They are awake and aware.

Many people would think this is a living hell, imprisoned in one’s own body, with limited if any means of communication. But Laureys et al found differently when they actually asked patients who were in this condition. According to the ABC,

“More than half of patients coping with a form of nearly complete paralysis called locked-in syndrome indicated — through eye blinks in some cases — that they were getting some satisfaction in life, though 8 percent had often thought of suicide.

“Among 65 patients who had developed the syndrome a median of eight years previously, only 18 characterized their lives as “somewhat on the bad side” or worse… Seventeen patients indicated that they felt as well, or almost as well, as in their happiest times before becoming locked-in. Another 21 gave their overall quality of life lesser but still positive marks.”

So what can we learn from this study?

New Scientist and others ran with headings like “Most patients with “locked-in” syndrome are happy, survey finds”. This is of course false. Laureys and colleagues sent the survey to caregivers for 168 patients registered with the French Locked-In Syndrome Association. Responses were received from 91 patients, of which 65 were complete enough for analysis. That is, just under 40% of those approached. And this kind of survey can only refer to those patients who can communicate in some way, not the worst affected who cannot communicate at all. We have little idea what it is like to be locked-in permanently and unable to communicate.

This sort of research is often used by anti-euthanasia lobbyists to argue that assisted suicide and euthanasia should not be offered to such people because they come to value their life. They find meaning. However, that conclusion is not warranted. Some do want to die and should be allowed to die. The lesson that should be learnt is the one Laureys and colleagues draw: you should wait to see how you adapt. But, if after waiting a suitable time, you want to die, you should be allowed or helped to die. And if a competent person does not want to wait, and has been advised of this kind of research and the possibility of adaptation, but still wants to die, he should be allowed to die. It is hard paternalism to keep people alive when they competently and informedly want to die.

The results will surprise many people. Joseph Fins, an LIS specialist at Weill Cornell Medical College in New York, makes a good point. “The results show that contrary to opinion, people adapt and adjust, and with help from their carers they can find meaning even in this state,” he says. “They have the potential to move beyond the usual caricature, showing they’re real people.” (http://www.newscientist.com/article/dn20162-most-lockedin-people-are-happy-survey-finds.html)

One implication of this is that we will underestimate the value we would find in life, if we are attempting to predict now, in a well state, how we would feel is some calamity befell us. This is often used to call into question the validity of living wills or advance directives. So I might say now don’t keep me alive if I ever have a massive stroke and will be left in a locked in syndrome. But this kind of research can be used to say: “Wait. You don’t realise that you will adapt and be happy.”

Is this a reason to call into question the validity of living wills? No. It is a reason to make sure people are aware of the phenomenon of adaptation before completing a living will. Imagine I know I will be happy some years after having developed locked-in syndrome. Can I now validly ask doctors to allow me to die at the time I have a massive stroke that will leave me locked-in? Yes. I can refuse any medical treatment, even if I am having a perfectly good life. Jehovah’s Witnesses do this when they refuse life-saving blood transfusion.
Adrian Owen of the Center for Brain and Mind at the University of Western Ontario in London, Canada, said that the study challenges preconceptions about life in a lifeless body. “We cannot and should not presume to know what it must be like to be in one of these conditions, because many patients can find happiness in ways we simply cannot imagine.” (http://www.newscientist.com/article/dn20162-most-lockedin-people-are-happy-survey-finds.html)
This kind of research is important. What makes each person’s own living hell is a matter for that person. It is subjective. And we can adapt to hell. That is important for all of us to know. But it does not change the rights of individuals to make what they will of their lives, including choosing the conditions under which and the time to end them.

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8 Responses to Ethical Lessons From Locked-In Syndrome: What Is a Living Hell?

  • Peter Wicks says:

    I think I agree with all of this, but it also leaves me wondering where we should put the cut-off between cases where we should assist suicide and cases where we should prevent it. In many (most?) cases of suicide it is justifiably seen as a tragedy, which we would have prevented "if only we'd known". At what point should we move from prevention to assistance? Also, to what extent does society have a responsibility to prevent or assist suicide, as opposed to passively tolerating it? I'd be interested to know whether anyone has come up with convincing criteria in this context.

  • Ben Shore says:

    Ah. Thanks for the interesting and thought provoking post.

    I do, of course, understand that I cannot possibly put myself in the shoes of these people. Still, I can't help but wonder what kind of meaning/fulfillment they can possibly find in a life locked in stasis. If you've found information like that anywhere, please share it.

    I imagine I would be among those requesting suicide.

    Ben

  • "…Still, I can’t help but wonder what kind of meaning/fulfillment they can possibly find in a life locked in stasis. If you’ve found information like that anywhere, please share it…"

    I imagine information about Stephen W. Hawking and his life could be a good place to start. (I recall some of Martha Nussbaum's early lists regarding her capabilities approach allegedly/apparently seemed to exclude Hawking from having a good life well worth living, and maybe not even a human one – though to be fair Nussbaum has arguably continually and appropriately modified her lists in part from diverse input from all over the world.)

    Some other information that comes to mind includes personal stories about individuals who loved listening to music so much, for instance, that they did virtually nothing else but take joy in musical sounds literally to the exclusion of eating and drinking (as well as saving/spending/securing money necessary for eating and drinking so that they can divert such funds to the purchase of more music).

    I imagine other relevant information could include individuals who derive tremendous value from hearing/learning about their children, families, and friends, for instance, grow, develop, and live their own lives.

  • Julian Savulescu says:

    Principles of assisted suicide are, in one way and in these circumstances, quite straight forward. Depression is itself not directly relevant. What matters is whether the person is competent. If the person in LIS is competent, she can refuse medical treatment. She could also refuse food and fluids. Doctors are obliged by law to respect such refusals. If the person is depressed and competent, her refusals should be respected. If the person is depressed and incompetent, she should be treated in her best interests. This raises whether it is good for people to be kept alive in that state. This research sheds some light on to that question. But the study found that those who were anxious and depressed had lowest subjective quality of life, so whether such a life is in a person's interests at least partly turns on whether the depression and anxiety are correctable.

    The principle of the right of competent people to refuse interference in their life deals with some of the issues. But it does not address what their positive rights to assistance in dying are. As I think David alludes, when a person requests assistance, we should form a view of whether that person should be assisted to die, whether there is a reason. The desire of a competent person is not in itself a reason. People desire all sorts of things which are bad for them or for where there are no good reasons to have.

    Here the value of a purely subjective account of the worth of life falls down. If value of life were purely subjective, then people who are unhappy and find their lives not worth living do have lives not worth living. So we would have reason to assist them to die. However, I don't believe that the value of life is purely subjective, though it may be in part subjective. On an objective account of the value of life, what makes life worth living is being able to engage in deep human relationships, achieving worthwhile things, developing talents, experience beautiful things, engaging with world, doing new things, etc. On a mixed objective/subjective account, a person who is unhappy and wants to die, and whose lives is sufficiently deficient in objective goods has a good reason to die. We should help such people to die with assisted suicide or euthanasia.

    The problem with subjective accounts is that people adapt to terrible circumstances. Adaptation is both a good and bad thing. It can cause people to lead very bad lives.

    One easy solution to end of life decision making is to restrict assist suicide and euthanasia to people who are competent to request it voluntarily. In such people, we should assist suicide and requests for euthanasia in those people who are unhappy and have objectively bad lives. For those whose lives are objectively bad, but we who want to keep living, we should assist them to live.

    But the problem is that those who have the worst lives, objectively, will be incompetent. For example, patients with Minimally Conscious State have severe brain damage and are nearly permanently unconscious but have limited conscious experiences with some chance of improvement. Laureys and others are now trying to communicate with such patients and it is unclear whether they are competent. If some of these patients were found to be incompetent with little chance of recovery, we would be faced with the question: is such a life worth living. It is quite possible that it is not and that we harm such people by keeping them alive.

  • Matt Sharp says:

    "However, I don’t believe that the value of life is purely subjective, though it may be in part subjective. On an objective account of the value of life, what makes life worth living is being able to engage in deep human relationships, achieving worthwhile things, developing talents, experience beautiful things, engaging with world, doing new things, etc"

    Why should those things be considered the things that make life worth living? Presumably, it's because they bring pleasure to most people, i.e they are instrumentally valuable. But if they don't bring pleasure to everyone, how can they be *objectively* valuable? If something is objectively valuable, this implies it has intrinsic value/goodness independently of anyone's experience. I do not see how this is possible. Essentially, as Judith Jarvis Thomson (and others before her) has argued, something can only be good, if it is good *for* someone.

    Furthermore, if things that make life worth living *can* include objective things, then how do we know we've got the 'correct' objective things to make such a judgement? What if the 'correct' objective list of things included being able to move one's limbs and being able to speak?

    "The problem with subjective accounts is that people adapt to terrible circumstances. Adaptation is both a good and bad thing. It can cause people to lead very bad lives."

    This is circular reasoning. You're assuming a life can be 'very bad', even if it's not subjectively experienced as bad, then claiming that because it is bad subjective accounts must be wrong.

  • Peter Wicks says:

    I tend to share Matt's view that Julian's reasoning is circular. It seems to me that the qualities that Julian describes as "what makes life worth living" – let's call them "flourishing" for short – are indeed qualities that tend to make life pleasurable over the long run, particularly to the extent that this is possible. My impression from literature (such as Haidt's "The Happiness Hypothesis") is that what really makes you unhappy is being able to experience such things but not doing so because of self-imposed psychological barriers. If it possible to avoid suffering in patients with "minimally conscious state", then it is unclear to me why we would be harming them by keeping them alive.

    But of course this does depend on our values, and how we choose to define the word "harm". We might choose to value "flourishing" or some such experience for its own sake, rather than because of the role it plays in creating pleasure. I'm just not sure why we should want to make such a choice. As I said to someone recently, I would have no interest in "flourishing" if I didn't think it was going to make me happy.

  • Simon Rippon says:

    Fascinating post. A couple of questions:
    1) Should there be a "cooling off" period for euthanasia requests to allow for adaptation? If so, how long should it be?
    2) Suppose that researchers find out many competent people who made living wills <i>even in full knowledge of the phenomenon of adaptation</i> decide that they would prefer to end their lives under conditions x, y, z. Suppose also that researchers find that when in conditions x, y, z, a large majority of these people in fact change their minds about their earlier living wills and prefer to continue living (if conditions x, y, z preclude communication, perhaps the researchers learn this from a few patients who enjoyed an unexpected recovery and were very relieved to be able to communicate their revised wishes. Or perhaps conditions x, y, z are merely simulated for healthy patients to experience.) Would this call into question the validity of living wills?

  • Peter Wicks says:

    These are indeed interesting questions.

    On the first my intuition is pretty clear: there should be a "cooling off" period for euthanasia requests when they are made in response to a development, not so much in order to "allow for adaptation" as because they are likely to be primarily the result of ignorance combined with a short-lived emotional response to the development, rather than necessarily reflecting that person's values combined with sound understanding of the relevant information. That information would of course include relevant research on adaptation.

    I'm much less clear about the second. Assuming the living wills have themselves been the result of serious, informed prior reflection, then there is surely an argument that the person's wishes should be granted, even if research suggests they would be likely to change their minds later, and even have a good (subjective) quality of life, if kept alive. The principle at stake here is of course the individual's right to control his/her own destiny, irrespective of other people's opinions as to what is good for him/her. At the same time I don't intuitively object to the idea that a society – provided its decisions are arrived at democratically of course – might decide that it doesn't want to allow euthanasia in cases where a good (subjective) quality of life is not only achievable but even likely.

    We might also add a third question: is it at all legitimate to factor in the costs to society of keeping such a person alive, possibly over a long period of time? Or the effect on relatives / loved-ones, who might plausibly find it harder to adapt than the person with the actual condition?

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