1. Re:Ethics of Assisted Dying in LIS

    The fact that a high percentage of patients with locked-in syndrome (LIS) shows an unexpected well-being does not surprise us, but we are very interested in this. The first part of the work carried out by Bruno and colleagues provides a basis for researchers to formulate new working hypotheses in patients who have a lesion that is so localised and yet leads to such a complex mosaic of consequences on a functional level. In the conclusions authors raise some additional ethical questions about this challenging group of patients. We have identified a series of 'syndromes within the syndrome' in patients with LIS due to ventral pontine damage (pathological laughter and crying, motor imagery impairment and a selective impairment in the recognition of facial expressions).1-3 At the same time we found, albeit in a much smaller group of subjects, values almost comparable to those of the general population in self-reported Quality of Life.4 This is neurology; this is science and science must stop here. Prof. Savulescu attacks the work of Bruno et al., saying that this is the classic research approach of those opposing euthanasia. In other words the 'ethical' conclusions would invalidate empirical data on the grounds that these tendentially favour a certain ethical or political vision of the world (and therefore are prejudiced). In our opinion, an alternative approach, based not on scientific findings but rather on moral and/or political motivations, would be prejudiced too. We find ourselves asking "Who is invading whom?" Is politics invading science, or is science invading politics? This would be a rhetorical question had we not arrived at this point of convergence. Either Prof. Savulescu denies that the data presented by Bruno et al. have scientific value on the basis that they go against common sense (and asks Bruno and colleagues to 'abjure') or he claims that the data are false. Yet in our opinion there is a third way to proceed: separating science from politics and ethics. A disconnection that must be clean and definitive.

    1. Pistoia F, Conson M, Trojano L, Grossi D, Ponari M, Colonnese C, Pistoia ML, Carducci F, Sara' M. Impaired conscious recognition of negative facial expressions in patients with locked-in syndrome. J Neurosci 2010;30:7838-7844.

    2. Conson M, Sacco S, Sara' M, Pistoia F, Grossi D, Trojano L. Selective motor imagery defect in patients with locked-in syndrome. Neuropsychologia 2008;46:2622-2628.

    3. Sacco S, Sara' M, Pistoia F, Conson M, Albertini G, Carolei A. Management of pathologic laughter and crying in patients with locked-in syndrome: a report of 4 cases. Arch Phys Med Rehabil 2008;89:775-778.

    4. Pistoia F, Conson M, Sara' M. Opsoclonus-myoclonus syndrome in patients with locked-in syndrome: a therapeutic porthole with gabapentin. Mayo Clin Proc 2010;85:527-531.

    Conflict of Interest:

    None declared

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  2. Ethics of Assisted Dying in LIS

    This sort of research demonstrating remarkable adaptation 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 authors 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. The authors adopt a similar moderate view. " In our view, shortening-of-life requests by LIS patients are valid only when the patients have been given a chance to attain a steady state of SWB."

    But this is too paternalistic. 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.

    This kind of research is also used to call into question the validity of living wills or advance directives. However it provides no grounds for questioning the validity of living wills. It provides reasons to make sure people are aware of the phenomenon of adaptation before completing a living will. Imagine that 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.

    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.

    Conflict of Interest:

    Stephen Laureys is a collaborator with our Oxford Centre for Neuroethics which I direct

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  3. Response to: "A survey on self-assessed well-being in a cohort of chronic locked-in syndrome patients: happy majority, miserable minority."


    I just wanted to add a few other dimensions to the topic on the happiness of persons who are living with a disability in which they have a limited ability to communicate: resources.

    I work with participants at a cerebral palsy center. The persons I find to be more content are those who are given access to equipment that allows them to communicate with others and equipment in which their mobility is less restricted.

    The people who use our program either have the luxury of private insurance in which they can have excellent augmentative communication devices, have state insurance that allows lower-end devices that take over two years to replace or fix when they break down, or no insurance and either use crappy equipment we have left over or none at all.

    The same is true for the types of mobility equipment that participants have. Those with resources have better autonomy due to their wheelchairs' capabilities. Unfortunately for some, the use of any type of wheelchair only happens at our center.

    Our computer lab is stocked with mid-range devices and substandard computers for this day in age. We do our best, but continued budget cuts have left this area wanting as well. There are a few participants whose augmentative devices access the internet, thus serving as their own computer as well, but this is rare.

    I just thought I'd tell you that the study should include the subject of resources that allow people with severe disability to still be included in society would surely make a difference in how content their lives are.

    It is a terrible shock to most who become disabled later in life to see how little value society puts on their inclusion when it comes down to it! I know because I have had two children born with disability, one in the state that your article is written about. Also, I majored in Disability Studies at UC Berkeley after raising my children. I now am a special educator working with adults who are living with a variety of disabilities.

    Thank you for time

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