Wednesday, 25 June 2014

Cogito, Ergo Sum (or, Dum Vivimus, Vivamus)

Human Beings Can Take Give Life and Take it.
How Do We Define it?

With all the excitement here in France of the World Cup (Les Bleus have already secured a spot beyond the opening Group Table round) and the advent of summer, there is a story drawing a lot of attention and coverage.  A sad story.

And a terrible one.

And it's one that - I think - gets to one of the most fundamental questions concerning mankind, and one that has I think been front and centre since the first humans evolved the power of self-awareness and reason.

What is it to be alive; to be human?

The saga is probably one that would be immediately familiar to most Americans, if at the same time one they could not identify by name.  In 2008, a young man named Vincent Lambert at that time living in Reims in the north of France, was involved in a catastrophic motorcycle accident.  The injuries he sustained left him in a deep coma, a state that has largely been constant since.  Lambert was in his early 30s then, with a wife.  He also had two parents, and eight siblings.

Lambert has been kept alive for six years via medical intervention - a machine helps him to breath, and a feeding tube provides nourishment.

For nearly six of those years, half of his family - his wife and six of his brothers and sisters - have been fighting to have support withrdrawn.  The other half - his parents, one brother, and one sister - have fought to ensure that medical support is not withdrawn.

It's eerily similar to the infamous case of Terri Schaivo from 10 years ago.

France re-wrote its laws on euthanasia in 2005, allowing for 'passive euthanasia."  The question in this case is to determine the real wishes of the patients (Lambert did not leave explicit instructions for such a case).  The situation took a truly bizarre turn over the past 24 hours, as the High Court of France ruled that, indeed, Lambert was in a state where he could not recover, and that the hospital could withdraw life support.  The parents appealed to the European Court of Human Rights, which mere hours later moved to intervene and require the hospital to continue treatment and restore feeding tubes.  It went a step further to order that Lambert was not to be moved - ostensibly to Belgium, where the wife now lives, and also a nation with much more activist laws on euthanasia (including, most recently, supporting the rights of children to assisted suicide if they wish).

It's truly an awful situation. Lambert's elderly mother was on the television last night, following the French court decision saying, "My son is still with us.  I cannot conceive how the judges could possibly follow [this] recommendation."

Items like "quality of life," "death with dignity," and other visceral topics abound here, and it raised, for me at least, a more profound question.

What is humanity?

I work in medical research, and a significant part of my job is to measure and model patient outcomes to convince payers - insurance companies, public health agencies, hospital sick funds - of the value of new medicines and new treatments.  "Quality of life" and "quality-adjusted life years" are as familiar to me as P/E rations and Earnings Per Share are to those in finance.

But they only carry so far, and are necessary evils in a world where precision and quantity matter.  They exist to answer specific questions that arise in a world of economics where resources are limited but demand is not.  Sure, this medication will extend life by two years, but what is the value of that time?  To the patient who will live it?  To society, who will be asked to pay.

For the past four years, I worked primarily on treatments for Alzheimer's disease, a terrible affliction that gradually robs people of their memories, of their ability to act and interact with others, their functional abilities, and ultimately, their lives.  We were developing a treatment that did not offer a cure for the disease, but one that could bend the curve of the disease.  This offered patients the gift of time.

Ultimately the clinical trials did not succeed (as of this writing, there have been no successful treatments launched for Alzheimer's disease that offer more than temporary alleviation of some of the symptoms), but one of the things we struggled with was how to measure the quality of life afforded the patients and their families.  One paradox of Alzheimer's disease is that, as the pathology progresses and patients remember less, recognise less, and are less able to function and care for themselves, they actually report higher quality of life.  This is largely due to the erosion of the awareness of what is happening as mental and physical capacities gradually disappear into the spreading darkness.

Our development team had as a motivating factor - it ultimately became something of a mantra for us - that what we were offering patients was a preservation of self.

What did that mean? What is 'self?'

It's another reformation of what it is to be human, I think.

Are we human because of our physical presence?  Do our physical bodies and ability to function define us? People look at us and recognise us by our faces before anything else, after all.

Obviously not - a look at, e.g., Stephen Hawking I think is dispositive that we are far more than the physical shells that we inhabit.  Here, no one would argue that Vincent Lambert is not physically in a hospital room.

Are we then defined by our memories?  Our memories are shaped, of course, by our experiences, and in a sense are a sort of record book of the lives we have led.  But if we somehow could transfer those memories to, say, a computer medium, would that computer then be "us?"  I am sure that someone at Google is working on just such a project, and these sorts of stories are the bread and butter of whole genres of science fiction.

Are we made up of our personalities?  Our mental faculties?

During our research - one of the great things being involved in a world-class organisation is the chance to interact with key thinkers - I had some time with Professor Harald Hampel, a German medical doctor who is one of the leading experts in the world on Alzheimer's disease.  During the scientific session at which he was one of the chairs, we were discussing how to diagnose AD early, potential measures of treatment outcomes, and what these might mean to patients.  I had long thought about what "self" means, and I asked Dr Hampal casually what he thought about the topic.

I think he was somewhat surprised by the question, and paused for what seemed a very long time as he considered it.  No, he finally replied.  Our 'selves' are not 'memories,' and they are not 'personalities.'  He could not define 'self,' or qualify it, but (oddly for a scientist, I think) took a more meta-physical approach.  Our memories are plainly reflections, he said, of our lives, and are uniquely ours.  But, like the shadows on the wall of Plato's cave, they are personal images of what has happened empirically.  Memories help to make us, but they are not us.

When I was young, I used to joke with my older brother Charles, trading insults that often began with "you need a face transplant," but ended with "you need a brain transplant."

The silliness of such an insult was lost on a six and seven year old (my brother is about 11 months older than I am).  Even so, humanity strikes me now as more than a collection of memories (events), and of intellect.  We are not a collection of arbitrary parts.

Surely, as Mrs. Lambert says, her son is, in a way "still here."  But in a large way, he isn't.  I don't know what Vincent Lambert's quality of life is, or what ultimately his wishes would be.  But plainly, the ethics of life have been outpaced - by a wide margin - by the science of medicine.

This gap is one that the law must fill, and it is doing so in an imperfect way.

I don't know how I would vote if I were a judge, and with any luck at all, I will never, ever be in such a position.  Like Terri Schaivo, this situation belies easy answers, and those who rush in with self-righteous "I would do" comments, I think, have given insufficient thought to the meta question of what is life.

I suppose that, in the same position, I would want my family to make peace and to do what they felt was best for them.  I have no idea what life in a deep coma is like, or what - or even how to measure - the quality of such life.  If my wife, son, or mother took comfort that I was "here with them" in a way that was comforting, then I am not at all upset with the prospect of medical life support.  On the other hand, I do not fear death, and if letting me go in such a situation is what would bring comfort, then I am not at all upset that they would seek to remove medical interventions.

In the end - and as the saying goes, the only ship in life guaranteed to come in is a black one, and it comes for us all - death with dignity is not all that different from life with dignity, and part of that is being "there" for those you care about and care for.  It's not always easy.

Which, I guess, is ultimately a pretty solid definiton of being human.  Ironically, formed not entirely on self, but on how we care for others.

And it's one that works for me.

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