The Miracle Of Life — And “Quality” Of Life

Most of the times I am involved in “should-we-pull-the-plug” type decisions, it is at the end of life and not the beginning.

A “DNR” or “DO NOT RESUSCITATE” order simply means that if someone has a heart or lungs that cannot work on their own, the decision is made NOT to use artificial heart or lung type machines to prolong life.  I have seen people sign their own documents to this effect.

As a matter of fact, I saw a DNR order signed by my father when he was in a nursing home, basically bed-bound, and it was a correct decision.

I have seen people designated as health “proxies” — someone with authorization to take action on behalf of another — sign a DNR for people who cannot think clearly enough to make their own decisions.

I have also seen what happens when there is no such order.  When personnel work furiously to save someone who goes on to spend “life,” if you call it that, without sentience and without being able to communicate, often without material to communicate, it is very sad stuff, indeed.  But people who are in nursing homes have already seen the descent in the quality of life that comes with aging.

We all know that parents usually die before their children, so there is a sense of the flow of life in the universe being appropriate when parents and grandparents move to some other spiritual worlds and the rest of us, down here, carry on.

I have been involved with this kind of decision only rarely in my life.  The DNR order issued for a young baby is emotionally difficult for all concerned.  There are always multiple consultations, multiple opinions, and a lot of crying.  There are few things in life more emblematic of hope than the birth of a young child, and few despairs greater than the loss of a child, which always seems contrary to the flow of life in the universe.

I remember an anencephalic baby in an incubator in a rural place that was not in this country.

“Anencephaly” literally means the condition of being without a brain.

No support groups here, just a fact-sheet from our government.  This is a severe illness in which the piece of the embryo that is supposed to close up and form the brain and spinal cord does not close up and there is plenty missing.  At the very least, a piece of brain and a piece of skull are missing.

The mother could not even look at the child.  The place where the brain and skull should have been were covered by a variety of damp bandages.  We knew the child would not live long, and I had told this to a host of weepy relatives.

I did what would later become a hallmark of what I do.  I tried to understand their belief system and meet them at what they believed in.  Unfortunately, I had trouble relating to their ideas of devils and demons. They were honest and decent hardworking farming folk.  They had little beliefs to go on.

My work (which probably foreshadowed my later work in psychiatry) consisted mainly in convincing them that this was not meant to be a punishment for their sins.   I needed reinforcement here.  I did speak with the family priest, and that helped some.  The baby died before we even had a chance to stop the respirator.

One reason we don’t much see cases like this anymore is the inclusion of folic acid in prenatal vitamins.  Dear ladies, however you feel about vitamins, 0.4mg. of B9 daily significantly reduces this sort of thing, so please do take those vitamins, those who are “with child.”

Now again, out of the country, a similar but less clear question.  I can only assume in the United Kingdom as here, the judicial system has somehow taken over medical ethics as two parents fight about the viability of a child with congenital myasthenic syndrome.  This is a progressive disease, which means it can only get worse.  Severity is so variable nobody can say anything about an individual prognosis, which did not stop the Mayo Clinic from saying something.

We have data.  We have three attempts to remove a child from a respirator, each resulting in a shorter period of time away from the respirator.  This means that the disease has already progressed quickly in this short life.

Symptoms and progression are so variable, that general information about the illness is little help.

Professionals in neonatal medicine still seem to be struggling with this sort of question

Much to his credit, the neonatal professional running this website realizes that guidelines are more consensual than scientific.

We are unlikely to be transplanting brains and spinal cords in the near future.

Maybe some of children with congenital myasthenia who are far less severe fall in the group which, thanks to Jerry Lewis, is known as “Jerry’s Kids,” surely the best funded group of patients in child neurology if not almost anywhere.

(Once I was actually told by a child neurologist to change the diagnosis on a child with muscular problems to “rule out muscular dystrophy” to get some of what he then called “Jerry’s millions.”)

But for a tiny baby who hasn’t the strength to do a good job of expanding his or her own lungs, where do compassion and empathy lie?

Surely not with the judicial system.

Perhaps with the parents, although here their desires differ.

One does have to ask why the decision whether to terminate life support took one full year.  My guess is that this delay had something to do with the judicial system, too.

The question is if quality of life is sufficient to prolong life.

People argue from rhetoric, from beliefs that may be easily voiced but less easily understood.

I remember an institution, again in another country although I am sure that similar exist in these United States.  I remember hydrocephalics with very large heads, tiny cartoon-like entities that were condemned to life in giant incubators.  I remember it with much pain and suppressed tears.

They claim that the baby can “play, recognize his parents, and respond to the world.”  I do not want to sound crass, but that is the set of responses most commonlly used to describe a household pet.

Decisions have to be made on a case-by-case basis.  Like everything else, a one-size-fits-all law is not going to do it here.

I propose a new criterion for “viability.”  The question ought to be not what makes a being in an incubator alive, but what makes it human.

I would submit that the answer to this is the capacity for growth, as present in the brain.  Where there is a limitation in respiration, there is a limitation in oxygen.  Where there is a limitation in oxygen, there is a limitation in the progression of brain cells to achieve more and more memory, learning, tasks that can be generalized into living life.

By the time a child is one year old, there are certain developmental milestones.  The average one year old can take the first steps.  The average one year old can speak a two word sentence spontaneously.

Even if a body is in poor disrepair, it is the brain that makes the quality of life.  My very favorite example is Stephen Hawking, a brilliant mind trapped in a minimally motile body that has given civilization many precious gifts of knowledge.

I doubt this British baby in the news can have a life that is anything we would consider “normal,” as his first year of brain development is already known.

Everyone has stem cells in their brains.  This child may be able to have wonderful and extrordinary learning.  But nobody thinks about the brain, even though it is the main determinant of quality of life.

Flashback to my course in pediatrics in medical school in Amiens, France, and a professor whose wisdom I was not yet mature enough to appreciate.  He said, if a child had some sort of a physical handicap that we could not do very much about, the best thing to do was to convince the parents to push him or her as far as possible educationally.  This would determine his or her quality of life.

Nobody in America has every expressed that sentiment to me.

So while we physicians have absconded our decision making to the judicial, to decide who lives and who dies, who will make the real decisions and on what basis?  Who will look at a sad, imperfect child and see the adult he could be –  an adult determined primarily by the brain?  And who, if the decision is made to let this sad and struggling child live, will pay to teach his brain stem cells all that they can become?  I hope we ask the right questions, at least.

I think the parent who wishes to keep this child alive should see the kind of institution where such children live as they grow and cannot be cared for at home.  I think that parent should be provided with the information about how to teach a child whose brain cells are not yet differentiated.  Because the parent might do it, but no medical care system, socialized or private, has figured it out yet.

They have learned how to deny payment before we can teach people how to create miracles.