Friday, June 21, 2013

A Meaningful Right to Die

There is a worldwide movement, with organizations in most developed countries, to foster the right of individuals to choose to die with dignity.  But those efforts are limited to when they are either terminally ill or suffer from irreversible physical illness, intractable physical pain, or a combination of progressive physical disabilities.  Even in the Netherlands, which is one of the few countries to have enacted voluntary euthanasia, it is limited to those suffering from “hopeless and unbearable suffering,” which has been interpreted as meaning serious medical conditions combined with considerable pain.  

The other catch is that one must be of sound mind when making this contemporaneous choice.  To my knowledge, there is no such thing as a directive for choosing voluntary death at some future time when one is no longer of sound mind, similar to the common living will, which is a directive to withhold life-prolonging efforts.

The mission of the organizations working towards the acceptance of a right to die with dignity are thus far too narrow in my view.  As a human being, one should have the right while still of sound mind to determine the timing of ones death if at some future point one is no longer left with anything resembling “quality of life,” and that should not be limited to the physical indicators typically espoused.  One should be allowed the right to choose to die with dignity regardless whether the problems are physical or mental.

Case in point ... my mother.  When she was younger, which is to say in her 60s and 70s, she used to notice people who were suffering from dementia, looking blankly at the world, and say, “If I ever get like that, give me the black pill.”  Meaning that she wanted to be helped to die.

My mother is now 103 years old.  For the past year she has resided in the nursing home of a life care facility where she has lived for the past 13 years, starting with an independent living apartment and “progressing” to assisted living and then the dementia unit before being transferred to the nursing home.  She lost her memory, both short term and long term, years ago.  She sleeps or dozes most of the time, has no energy, has little awareness of what’s happening around her, although she does recognize my brother and me, sometimes, and takes joy in our presence and when we take her out in the sun on a nice day.  I should note that my mother takes no medication and is definitely not alive due to any specific miracle of modern science.

At the facility where my mother lives, there are many people who look blankly into space, who are not “terminally ill” or suffer from an irreversible physical illness or progressive physical disability, unless the dementia of growing old would fall under that category, which is not the case.  Suffering the results of a stroke would probably also not qualify under these narrow definitions.  The very old are not considered “disabled” nor are they considered to be suffering from an irreversible illness.  Odd, because both is often definitely the case.  

From every perspective, not allowing such people, indeed all people, to have a directive to die when they reach such a state or one of the physical states noted above is wrong; it is inhumane.  From the person’s own perspective, there is no question that most of them had they been asked while they were still of sound mind whether they would want to live under such conditions would have said, “no,” just as my mother did.  Who in their right mind, no pun intended, would want to continue living in such a state?  And it is the wishes of the individual that should be controlling in a matter such as this.

From the perspective of the person’s loved ones ... spouse or children ... witnessing the mental and physical prison in which their loved one is living without any chance of change is brutal.  Even when there is still a spark of life, of who they used to be, left, as in the case of my mother, the overwhelming numbness of their existence is  the predominant fact of life.

Finally, from the perspective of society ... and many will howl loudest at this consideration ... the expenditure of vital resources to sustain life at this stage is not a viable use of those resources.  If the choice must be made, and unfortunately it must in a world of limited resources, between providing adequate schooling and other resources to children, for example, or spending huge sums of public money for end-of-life care, only one choice is rational.

Before going further, let me make absolutely clear again that what I am advocating is the ability of an individual, while still of sound mind, to make a directive that if or when at some point in the future he or she should reach a certain defined state of hopelessness and unbearableness ... be it mental or physical ... he or she directs that they be helped to die.

The first question to be asked is, why are living wills ...  the direction to withhold life-prolonging actions in certain situations ... broadly accepted whereas the right to be helped to die is broadly not accepted, except in very limited circumstances and in very few jurisdictions.  The usual explanation given is that it is one thing to ask that medical efforts be withheld, which fact will hasten death; it is another to ask that medical efforts be made proactively to hasten death.  

I would say that this is a distinction without a difference.  Are not both actions a decision to commit suicide?  Why is asking to withhold efforts morally or legally different from asking that efforts be taken?  The one answer is that the medical profession’s holy grail is to prolong life.  Withholding life-prolonging efforts, even at the very end, is scandalous enough for many physicians and physician ethicists.  Actively bringing on death would be unspeakable, besides raising lots of medical malpractice questions. 

Were I more cynical, I would have to raise the fact that the medical profession and health industry makes a huge amount of money from the cost of end-of-life care as it currently exists.  There was an article in The Atlantic recently about a doctor who is trying to change the profession’s end-of-life culture and practices so that the patient’s welfare is predominant.  But I fear that it isn’t just a matter of ethical or Hippocratic Oath culture, it is one of money.  It’s no secret that doctors order many unnecessary tests because of the billings they can then charge insurers.  I fear the same motive plays a definite role,  even if subconscious, in their decisions on prolonging life at all costs, no pun intended again.

The next answer is the religious one.  Most religions have found a way to parse living wills as not being suicide, but consider voluntary choice of death suicide and thus against God’s law.  It is only God who decides when one dies.  But this distinction is patently without rational merit.  Without a living will, there is no question that such people would live longer, whether a few days or many months.  Yes, it would be due to the miracles of modern medicine, but that is what is available today.  It is, if one is of such mind, what God has provided to modern man.  

For those religions that do not even support the concept of a directive to withhold life-prolonging care, all I can say is that I find that position shows no respect for the human being who is suffering.  If one truly believes that God chooses the time of our death ... and this naturally must include all deaths, whether car accidents, illness, or gun massacres or the holocaust ... then one is beyond rational thought on this subject.

The final answer is the fear of people being “murdered” against their will.  People posit all sorts of horror stories of the mentally infirm elderly being taken advantage of by unscrupulous relatives who want their money, etc.  But if someone is of sound mind and makes such a directive, then the only thing necessary to prevent such manipulation is that the event or state that brings the directive into play be clearly defined and that two medical doctors must stipulate that such event or state has indeed been arrived at.  

Indeed, in looking at the long and broad experience with living wills, there has been no evidence that I am aware of of manipulation by others.  On the contrary, what one does hear of frequently is loved ones not wanting the directive to be honored; they don’t want the individual to die, they cannot give up hope that by some miracle the medical situation will improve.

But the locus for the decision to continue life must reside with the individual.  It is their life.  To not allow a human being the right to die with dignity is just one more example of the man’s inhumanity to and lack of compassion for man.  The right to die movement needs to expand its scope to include directives and hopeless and unbearable states that are mental as well as non-progressive disabilities such as those that result from stroke.