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The Price of Life
Rev. Brian J. Kiely, Unitarian Church of Edmonton,
September 24, 2006
In this age of allegedly astronomical health care costs, our governments
debate who should pay for what service and whether there is room
for private health. They worry out loud about escalating costs and
ponder who, if anyone, should get government paid drug plans, home
nursing care and other ‘frills’. And there is some debate,
though not too much, about what constitutes ‘medically necessary’
treatment. I believe botox injections are still off the list.
But in my research, I could not find anyone in this country seriously
debating the price of life itself… at least not publicly.
I believe from bits I have heard that some medical professionals
discuss what treatments should be given to the terminally ill. They
try to lay out the options in a responsible way for the patient
or the patient’s family. But usually the only ‘cost-benefit’
they look at is a complicated equation that factors in length of
life, quality of life and degree of suffering. Were I a doctor,
I would then pray with every fibre of my being that the patient
or the family would take the decision out of my hands. I wouldn’t
want to play God.
But isn’t that the exact nature of the problem? Medical science
and technology has given us the power to play God, at least to a
degree. And those working the science of the problem have only given
limited thought to what their discoveries might mean. Who shall
live and who shall die? Who will get access to these new technologies?
What will be the impact of this power on the lives and souls of
the doctors, nurses and family members who have to wield it? How
will they carry the burden of deciding between life and death? These
are – or should be - core questions in medicine today.
In recent decades the field of medical ethics has expanded greatly.
Philosophers and ethicists are now teaching courses at medical schools.
Hospital Chaplains of all faiths are commenting on medical questions
as we try to catch up to our technical abilities.
But there still seems to be one taboo question. In this age of
rising costs when governments are hungry for savings, it sits like
the giant elephant in the middle of the room, eating all the cashews
and breathing all the air.
Is there a limit on how much we should spend to save a human life?
Interesting question, don’t you think? Of course the answer,
“Whatever it takes!” springs to the lips. But it’s
not that simple.
As new technologies and drugs become available, all with ever-increasing
price tags, the possibility exists to spend hundreds of thousands,
even a million dollars on a single life. Is that the best way to
spend our public money?
We Unitarians affirm the worth and dignity of every person. What
does that mean? Does it mean life at any cost? Or does it mean quality
of life before quantity of life? Traditionally, we tend to choose
quality over quantity. In the 70’s and 80’s Unitarians
gave leadership to the drive to legalize abortions. Most felt the
woman should have the right to choose and wished that every child
would be a wanted child. In the 90’s Canadian Unitarians formalized
support for the right to die, insisting that patients or their families
could stop unwanted medical intervention for the terminally ill.
A majority even supported legalized assisted suicide. These views
are fraught with implications.
To be blunt, they imply that the majority of Unitarians are not
categorically opposed to killing when quality of life is the issue.
But the key to those nationally held views has always been the
right of the individual to choose. We who hold such views –
whether we admit or not – are saying that merely being alive
is not the sole determining factor in whether or not that life should
continue. Others who might oppose assisted suicide and abortion,
but who back capital punishment and military intervention similarly
abandon the absolute moral high ground. They also say there are
times when a lifespan can be ethically, morally and legally cut
short.
But, the financial cost of care is seldom, if ever factored into
those debates. When it comes to medicine, we work with a strict
assumption that life is beyond price. Maybe that’s the way
it should be, but like every assumption, it needs a good hard scrutinizing
now and then.
Now, the only discussions I could find on money and death were
British and American. If this is being discussed in Canada, it hasn’t
hit the internet yet. Because Canadian public discussion is primarily
political, and politicians are notorious for their avoidance of
topics that could lose them elections, I can’t say I am really
surprised.
Let me give you a couple of examples of the scope of the issue.
Consider this N.Y. Times commentary from a physician. He was discussing
a new generation of pace maker like devices that can relieve heart
symptoms, reduce the number of hospital visits and perhaps even
prolong life:
“But the devices cost about $20,000 each. Defibrillators,
like the one VP Dick Cheney has…can clearly reduce…deaths,
and it is estimated that millions of Americans could potentially
qualify for these $30,000 devices.
“If even a small fraction of these patients received (these)
implantable device(s), the costs could reach billions of dollars.
Cardiologists are beginning to ask, Is this a sensible way to spend
health care resources?”
We can add to this trauma procedures that save the mangled bodies
of accident victims only to confine a percentage of them to hospital
beds and care homes for the rest of their lives. I have worked with
such people in my college years. I know that a good share of them
wish they had been left to die.
Let me give a heart wrenching example from the other end of life.
It is now possible to sometimes save a 1 pound baby born as much
as 18 weeks early. There is an 80 per cent chance that the child
will have mild to severe disabilities, but the child can sometimes
be saved. Seven years ago the price of care for that child until
the day she or he left the hospital was $1 million (US) In Canada
in 2004, 682 babies were born prematurely with about 200 falling
into that extreme need category. If they all survived and required
complete care, that would conservatively cost some $200 million,
plus whatever costs would be associated with managing any disabilities
they might have for a lifetime.
The default position of the neonatology teams is that the child
should be saved by whatever means, because they never know for certain
what the outcome will be. They can’t judge in advance which
or how troublesome the disabilities might be. They can’t guess
at birth what the quality of the child’s life might become.
Said neonatologist Sheldon Korones in a PBS interview, “What
do I do? Let them die? That’s not why I decided to put my
life into this. I will pick who will live and who… I’ll
break my back to see to it, but I’m not going to pick who
will die…In comes technology that has preserved lives that
would not have been, and these lives are incapacitated. Well, what
do we do, turn it all off?”
Good question!
I sympathize with the good doctor. I accept that he is committed
to life and to his Hippocratic oath, the one that says, “First,
do no harm.” But should “Do no harm” not also
take quality of life concerns into account?
I know I have a Living Will that clearly spells out that I do not
wish to live in any kind of a vegetative state. I also urge my decision
makers to pull the plug even if they aren’t entirely sure,
for my wish to not be a burden on my wife or children is more important
to me than life itself. Let them remember me as I was. But the side
benefit, not spelled out, is that such a decision will save the
state and probably my family a great deal of money too.
Well and good. That takes care of me. But what about the millions
of Canadians who have not thought through the issue? Right now the
system says they will be kept alive until the family can agree that
aggressive care should be stopped. Is it appropriate that family
are the only arbiters? Is it completely crass to invite them to
consider the financial implications of their decisions as well?
Do we not have a moral obligation to ask if that is the best way
to spend our public money? Perhaps there would be enormous benefit
derived from redirecting funds from one heroic procedure into bettering
the public health of 10, 20 or even 50 people living out of shelters
and foodbanks. A million dollars for one probably white North American…
how far would that go to provide basic life sustaining and prolonging
care in Africa? But of course, we know that North American person.
They are real. That life and possible death touches us directly
and profoundly.
Besides, a reasonable challenge might be, “Is it right to
play God over an amount of money?” I would answer in two ways.
First, we’re already playing God when we hook up the critically
ill to the magic machines. In the days I was debating right to die
issues, I would ask my critics where it said in any holy book that
we had to go to extraordinary measures to preserve life. I would
argue that if God determined each person’s time to die, was
not the medical establishment interfering in God’s plan? Of
course the reply was that God would take them anyway if he really,
really wanted them and medicine would fail. That always struck me
as a self-serving and circular argument that gave the medical establishment
the power to try everything possible at whatever cost.
The fact is medicine does play God every day and insists that life
is better than death. The ability to defer and delay death is increasing
every week at greater and greater financial cost.
In that same PBS interview on premature babies, Brian Beulah, the
father of a premie who survived through extreme medical intervention
and is suffering extreme disabilities said, “Back when God
played God, children like Emmanuel would have passed away quietly,
mercifully, and quickly.” Mr. Beulah started to question the
medical procedures used to ‘save’ his son. Within a
few days Child Protective Services appeared at his door accusing
him of neglect of a child who was not yet home from the hospital.
It’s a terribly difficult question. I know that had one of
my children been born prematurely, I might have demanded that they
spend as much as it took to save her. I would have been distraught,
out of my mind with fear and grief. I’m not sure it would
have been the right choice. I might have condemned my child and,
to a lesser extent, myself to a lifetime of suffering. I know there
are many people who feel blessed by having challenged children.
I have been in enough sheltered workshops to have seen firsthand
that there is a good quality of life for many with even severe disabilities.
But I also know there are people who cannot manage those challenges
and whose lives are destroyed. I am grateful that I did not face
the terrible choice.
But here’s the thing. In the heat of the tragic moment, I’m
not sure would have made a good decision. Should my fractured emotional
state be the sole arbiter of whether or not the government spends
a million of our medical dollars?
If the choice of ‘life at all costs’ is made, is it
the best choice for society? The English philosopher Jeremy Bentham
once argued that the needs of the many outweigh the needs of the
few, or the one. (If that sounds familiar, it was attributed to
a Vulcan philosopher in the original Star Trek series and films.)
There is no easy or satisfactory answer. Whoever decides to limit
care in any way will be seen as money grubbing, heartless and evil.
Just look at the American insurance and HMO companies.
I am not advocating a policy that limits care, for I don’t
think it would work and I would not care to meet the people who
have to implement it. I can’t imagine they would be much fun
at parties.
What I am asking you and me to consider is how much our lives are
worth. I know many of the people in this church pretty well. I know
we are generous, compassionate people. I know we like to think beyond
our own personal needs and extend our empathy to the needs of strangers.
I know that none of us wish to be a burden to family or society
and that most of us will choose quality time over quantity of time.
Given that setting, how much are we willing to ask the medical system
spend on us or the people we love when the prospect of their quality
of life is poor or non-existent?
What I am asking the medical folks to do is to be as open and honest
as possible about the quality of life question when they are explaining
diagnoses and possible courses of treatments. Be realistic about
outcomes. I know the profession has made great strides in this area
in the last few decades, but that discussion of possible outcomes
must be as clear as possible. I would also ask them to back away
from the tradition of viewing death as an enemy to be vanquished.
Death is just another dimension of life.
If we are to continue to make patients and family members responsible
for care decisions, then we must give them as much balanced information
as we can. We must give them counselling and spiritual support if
the desire it, and as much time as possible to make thoughtful decisions…decisions
that are made with both head and heart.
Ours is a religion that puts its faith in people. When we affirm
the inherent worth and dignity of every person, we also invest them
with a responsibility to do what they believe is the right thing.
We all know how difficult it can be to discover the ‘right
thing’ especially when the issue is life and death. All we
can do is pose the questions in calmer times to help each other
prepare for the hard choices.
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