Decisions at the End of Life

Hear the sermon

November 4, 2002

“Assisting people to leave this life requires strong judgment and long experience to avoid its misuse.
It is always a clinical decision, not an ethical, legal, or religious decision,
despite the importance of those aspects in getting there.”
– Francis D. Moore, MD

 Next week there will be at least one ballot question, #2, of a challenging ethical nature: “Prescribing Medication to End Life.”  In my sermon this morning I will examine this question, about which I have given much thought over the years, and my ambivalence about it, with the understanding that to give it the full attention it deserves would take a lot more time than we have together in this brief period.

In summary, the proposed law 

would allow a physician licensed in Massachusetts to prescribe medication, at a terminally ill patient’s request, to end that patient’s life.  To qualify, a patient would have to be an adult resident who 1) is medically determined to be mentally capable of making and communicating health care decisions; 2) has been diagnosed by attending and consulting physicians as having an incurable, irreversible disease that will, within reasonable medical judgment, cause death within six months; and 3) voluntarily expresses a wish to die and has made an informed decision.  The proposed law states that the patient would ingest the medicine in order to cause death in a humane and dignified manner.

Whatever your leaning, consider for a moment all of the presuppositions in this statement and ask yourselves, whether they can ever be fully met?  I personally have my doubts.

As a minister, I have been privileged to be present at the moment of death of several parishioners.  I was also present at the moment of death of my father.  A few of those deaths were quiet and peaceful.  Some were not.  But all of them contained lessons for life and living.

I have listened without an adequate answer as elderly people have asked why they continue to live though all quality of life has been lost, and they now wish to die.  I am also convinced that several of my former parishioners willed themselves to die rather than continue to live what for them had become a meaningless life.

Julia was an eighty-seven year old parishioner of mine in Minnesota, who for many years had suffered from a painful and debilitating form of arthritis.  Along with the terrible pain usually associated with arthritis, Julia had lost her eyesight so as not to able to read, her favorite pastime.  In spite of this, she managed for a long time to live a meaningful and tolerable life.  However, after suffering a fall at her home, Julia was hospitalized and became steadily weaker.  On the morning of her death, Julia told me, “I’m old enough to die now—oh, I’m not morbid, but life isn’t too damned enjoyable when you can’t do anything.”  That night I was called back to the hospital, where Julia had fallen into a deep coma, and I was present at her bedside when she died a peaceful death.

What of those who wish to die, but can’t?  What of those suffering intolerable pain, either physical or mental?  These are not simple questions.  I don’t have the answers.

As long ago as 1988 the UUA General Assembly passed a resolution entitled “The Right to Die with Dignity,” which among other things affirmed “the right to self-determination in dying, and the release from civil or criminal penalties of those who, under proper safeguards, act to honor the right of terminally ill patients to select the time of their own deaths.”

The resolution recognized the potential for abuse by “advocate[ing] safeguards against abuse by those who would hasten death contrary to an individual’s desires. . . .”

Such resolutions are guidelines only; no one is required to accept them in order to be a good Unitarian Universalist.  This resolution does suggest, however, that for a majority of UUs in that time and place, the idea of assisted suicide, if carried out with appropriate safeguards, is acceptable.

My grandfather for whom I am named was a physician for over forty years in rural Maine.  I would be shocked if he did not help many patients out of life by the judicious and compassionate use of painkillers, as was suggested by the morning’s reading by Dr. Francis Moore.  Because of the long term, intimate relationships my grandfather developed with most of his patients, I am certain that he would have been in a good, if not the best, position to make an end-of-life decision regarding his patients’ prospects and desires.

Unfortunately, these kinds of relationships are increasingly rare, and in the meantime we have become much less trusting in general, and less trusting of the medical profession in particular.  We have also become more litigious, resulting in physicians being less willing to risk any appearance of wrong-doing.  Yes, there was an aspect of paternalism in the old doctor-patient relationship.  In my heart, though, I still believe that a physician’s judgment, in the context of a trusting doctor-patient relationship, is the best safeguard in making difficult end-of-life decisions.  As Dr. Moore writes, “Assisting people to leave this life requires strong judgment and long experience to avoid its misuse.”

When Dr. Moore wrote his article in Harvard Magazine 18 years ago [from which the morning’s reading was taken], I suspect he would have been surprised that Question 2 has taken so long to appear on the ballot.  I am pretty sure that he would approve of the spirit if not the letter of the ballot question, as do I.  But as he warned in 1995, the responsibility “to help patients safely and painlessly out of this life” is “tricky.  It is dangerous,” he said at the time.   As he concluded his article, “We need it and people are ready for it.  It will relieve more suffering than did the discovery of anesthesia . . .”  But he also warned, “It will probably not be as simple as assisted suicide.  Nor morphine by the clock.  Nor pulling the plug, because for most patients . . . there is nothing to pull.  It must involve legal safeguards.  It will involve the family, so long as they can be trusted.”

In the several countries and states which have adopted so-called “assisted suicide” initiatives, there has been no blatant evidence either of abuse or, perhaps more surprisingly, of many people actually taking advantage of the freedom to intentionally end their lives.  What people seem to appreciate is the control that they feel knowing that when things get to what they consider an intolerable point, they may have an out.  Interestingly, the option for assisted dying is considered by far more people than actually take it.

I can’t tell you how you should vote on this challenging ballot question.  As you may have gathered from the foregoing, I believe that ending life in this manner, either one’s own or assisting with another’s, is a matter for the individual conscience.  Let me be clear that I do not believe that suicide, at the end of life or at any other time, is a sin, though I do believe that it almost always and inevitably has unintended and sometimes awful consequences for those left behind, and that while those consequences may be less in the case of a terminally ill person suffering intolerable pain choosing to end her life, they should not be underestimated.

I confess to more than a little sympathy for those who argue that death can actually be a vehicle for spiritual awakening.  I have observed on many occasions dying persons coming to a new appreciation not only for their own lives and families and friends, but for Life itself.  People sometimes change for the better in the face of their own deaths.  The Zen Buddhist Ram Dass has written, 

We recognize that life is primarily a vehicle for spiritual awakening, and thus dying, being a part of living, must also fulfill that function.  We are exploring the ways in which dying serves the process of spiritual awakening for both the person dying and those in attendance.  Under optimum conditions, the experience of dying is potentially the most significant opportunity for awakening in a lifetime.

There was a hymn in one of our previous hymnbooks which spoke to this possibility:                  

Since I have felt the sense of death,
Since I have borne its dread and fear,
Oh how my life has grown more dear
Since I have felt the sense of death.
Sorrows are good and cares are small,
Since I have known the loss of all. 

Since I have felt the sense of death,
Since I have looked on blackest night,
My inmost brain is fierce with light
Since I have felt the sense of death.
Oh dark that made my eyes to see!
Oh death, that gave my life to me!

Not only is dying potentially an opportunity for our own spiritual awakening, it is also an opportunity for those around the dying to be spiritually transformed.  Even suffering and its endurance have lessons to teach to the rest of us, hard lessons which may help us to live out our lives with a greater appreciation for their giftedness and, more important, to grow in our capacity for compassion.  Should we deny our families and friends that opportunity?  Is it really our “right” to do so?  Dying can also sometimes provide a final opportunity for reconciliation and for saying the love we may have felt but not often enough expressed.

It was for these reasons, I think, that my recently deceased colleague Forrest Church, having been diagnosed with a terminal illness, spoke about the importance of passing “the death test,” because he understood that in dying well he would be passing on valuable lessons to those left behind.  He passed.

Ending our lives intentionally won’t necessarily change this, but it might.

When he was around seventy and I was around eight, my grandfather suffered a debilitating stroke.  He would live for another fifteen years—incapacitated years which must have been torture to that energetic and brilliant and successful physician, surgeon, and outdoorsman.  Perhaps it would have been better if he had died immediately—I suspect he must have felt that way–but had he, I would not have had the incredible gift of my grandfather’s love and example and fortitude in the face of adversity as a guide for my own young and later life.

So here’s part of my dilemma, and perhaps it is yours as well.  I hate seeing this issue politicized, as it must now inevitably be.  I hate to see it becoming the subject of a theological debate which I know from long experience will never be resolved in the public square.  I would prefer that it was left to the discretion of a physician and patient in the context of a trusting relationship and not made subject to a lot of legal strictures.  No more than in my bedroom do I want the government and the legal system intruding into what should be a personal and private decision.

And what if passage of this ballot initiative actually makes it harder for your physician to help you end your life?  What if those presuppositions I mentioned earlier can never be adequately met?

Another part of my dilemma, and this one is more complicated, is that I personally am uncomfortable taking on the role traditionally ascribed to God.  We in the modern West can control much (though as the recent storm should teach us, not nearly as much as we think).  We can control when and whether to have children, and how many, as just one example, something unthinkable just a few generations ago, and, I would argue, a mostly good thing.

But the reality is that such control can bring with it a terrible and crushing responsibility and sometimes terrible consequences.  We are left with the burden of our decisions.  And the illusion of control we don’t have makes it very difficult for some of us to let go when the time comes.  Do I really want to control the time of my own death?  It feels a bit arrogant to me, and I personally am not sure that I do.

No one, of course, can predict how one will feel in the extremity, but this is how I feel today.

With the advent of improved palliative care and with the increasing availability of hospice care, with increased sensitivity in the medical community to the negative consequences of maintaining life at any cost and beyond a reasonable expectation of quality, there should be no reason for anyone to suffer intolerable pain at the end of life.  Dying will inevitably be fraught with tremendous anguish, even if it comes as a relief.  For me, the questions surrounding assisted suicide will always be a source of ambivalence. As my British Unitarian colleague Celia Midgely wrote when confronted with a similar resolution among her co-religionists, most of whom wholeheartedly support the idea of assisted suicide, 

I am very concerned about the old and the sick and the disabled, who are vulnerable and may feel open to pressure and abuse and feel that they are in the way.  There’s a worrying slippery slope here and I am not persuaded about safeguards. 

I am also concerned more fundamentally about the insidious flavor of eugenics here and the slide into a Brave New World.  We are all, as Richard Gilbert puts it, ‘more human than otherwise and we are our brothers and sisters keepers.’ 

So, lastly, what we should be calling for is better funded and more compassionate treatment of the old, the sick and the dying and those who are severely incapacitated.

While I may affirm your right to terminate your life by voting yes on Question 2, I cannot do so without these reservations.  I am not sure that legalizing a process for assisted suicide will make much of a difference in the long run, may be a distraction from the real issues of funding for care at the end of life, and could potentially make it more difficult for caring physicians to do what I suspect they have always done by drawing increased attention from those for whom speeding the end of life will always be a crime and a sin.

The late Paul Carnes, former President of the Unitarian Universalist Association, on learning of his own terminal diagnosis, wrote, 

We are the beings who die, but who, in dying, can defy death with courage and, standing at the edge of the abyss, affirm those things which really give us life: friendship, honor, a desire for justice, indignation, love, dignity, family, friends, country, humankind.

May we, even in the presence of death, ever affirm the gifts of Life.  May we live our lives fully to the end, whenever and however that shall be.  Amen. 

– The Rev. Harold E. Babcock

Reading: from “Prolonging Life, Permitting Life to End,” by Francis D. Moore in Harvard Magazine, July-August 1995