In Britain a difficult ethical case is unfolding, involving a profoundly disabled 17-month old child, Baby MB.  It seems the child was born prematurely with a terribly debilitating condition:

The boy, who can be named only as MB, suffers from spinal muscular atrophy –
an incurable and progressively worsening condition that leads to complete
paralysis.

The court heard that he cannot breathe for himself, cannot chew or swallow,
is fed through a tube and, though he is not impaired mentally, can move only his
eyebrows, feet and fingers, and these very slightly.

 His parents want to keep him alive, while doctors have gone to court to discontinue his care, turning off his respirator which will likely lead to his death very quickly.  The doctors contend that he is living an "intolerable life," and the parents argue that his life is "reasonable" and care should be continued.   They are due to give testimony in the case soon.

    The arguments seem to be focusing on how to define the "quality of life," and who should define it.  It is a question that a combination of Taoism and Confucianism can speak to, perhaps in ways that have not yet come up in this case.

   From Taoism we can take the notion that no one life is any more or any less valuable than any other.  Each thing, each person, whether disabled or abled, has a certain integrity (Te) in and of itself, and the integrities of all things together are equally a part of Tao: "all things move as one and the same."  If that is true, then there is no exogenous standard of "quality of life" that can be used as a universal measure in such cases.  Baby MB’s quality of life will be the quality of the unfolding of his particular integrity.  That will be different than mine, but no worse or better than mine.

    Some might argue that physical pain might render the unfolding of some individual lives "intolerable."  That may be true, even for a philosophic Taoist – who would be quite willing to let go when a life is at an end – but it is not demonstrated in this case.  The doctor’s agree that they cannot know what Baby MB is experiencing:

The doctor said it was impossible to say whether or not there were
occasions when the boy was getting some enjoyment out of his life
because there was no means of properly assessing it.

    If we add in here Taoism’s general disdain for human-created "knowledge" that moves us away from an open-minded apprehension of Tao, then we should reject the expert assessment that the baby’s life is somehow "intolerable."  It simply cannot be known.

    What is to be done, then?  Enter Confucianism, which would understand the value of the child’s life within its social context.  A Confucian (and by this I mean a modern day Confucian embedded in an already-existing moral-legal universe of liberalism where individual rights are assumed and protected) would point out that if the parents are willing to do the loving daily work of care for the child, then that work invests both the child’s life and the parents lives with a potential for Humanity that ought to be allowed.  "Quality of life," from this point of view is not a static state, it is something to be realized in the routine performance of our social duties.  By caring for their child, the parents are creating a loving and supportive and beautiful quality of life for him and themselves.  Why not let that happen?

    Confucians would reject cost as a criteria for making a decision, something that may be lurking in the margins of this case.  But it may be that allowing the parents to care for the child could also be cost effective.  If, as the parents want, a tracheotomy is done (a hole in the throat where a tube is inserted into the wind pipe to facilitate breathing) the respirator may be more manageable and the child may be able to be cared for in a home setting.  A trach is not that big a deal actually (my son, Aidan has one; I clean it twice a day).  Why not make that the goal?

    I will say, however, that I see a difference between continuing certain kinds of care, especially if the parents are committed to participating in it, and launching "heroic measures" should the child’s heart stop.  Baby MB is obviously in a life-threatening condition, he is flirting with death.  If this is a degenerative condition, it is close to certain that he will die very young.  That is hard to take for the parents, but a line will need to be drawn.  A "do not resuscitate" (DNR) order would seem to be reasonable to me.  Such orders can be targeted very specifically such that cardiac arrest should not be treated but, perhaps, pneumonia should. 

    In short, the parents should decide, and be a part of, Baby MB’s "quality of life," the medical establishment should facilitate his care, but a line should be drawn that recognizes death when it occurs with a DNR order.