Monday, June 21, 2010

A few guiding principles

Well, it may be the first day of summer, but it's still Monday--which means that it's ten p.m. and I finally have time to write something.

This is an interesting, but disturbing article at the New York Times. The author details her father's agonizing last years of life, made worse, not better, by the pacemaker that ironically was helping to keep him alive:

The system rewarded nobody for saying “no” or even “wait” — not even my frugal, intelligent, Consumer-Reports-reading mother. Medicare and supplemental insurance covered almost every penny of my father’s pacemaker. My mother was given more government-mandated consumer information when she bought a new Camry a year later.

And so my father’s electronically managed heart — now requiring frequent monitoring, paid by Medicare — became part of the $24 billion worldwide cardiac-device industry and an indirect subsidizer of the fiscal health of American hospitals. The profit margins that manufacturers earn on cardiac devices is close to 30 percent. Cardiac procedures and diagnostics generate about 20 percent of hospital revenues and 30 percent of profits.[...]

In 2005, the age-related degeneration that had slowed my father’s heart attacked his eyes, lungs, bladder and bowels. Clots as narrow as a single human hair lodged in tiny blood vessels in his brain, killing clusters of neurons by depriving them of oxygen. Long partly deaf, he began losing his sight to wet macular degeneration, requiring ocular injections that cost nearly $2,000 each. A few months later, he forgot his way home from the university pool. He grew incontinent. He was collapsing physically, like an ancient, shored-up house.

In the summer of 2006, he fell in the driveway and suffered a brain hemorrhage. Not long afterward, he spent a full weekend compulsively brushing and rebrushing his teeth. “The Jeff I married . . . is no longer the same person,” my mother wrote in the journal a social worker had suggested she keep. “My life is in ruins. This is horrible, and I have lasted for five years.” His pacemaker kept on ticking.

The article is several pages long, and contains many details which, as a Catholic, I can't approve of--the contact between the author's family and the pro-death/pro-suicide Hemlock society, for one major thing. But at the same time, there's a serious question raised: why was a pacemaker put into the chest of a man who only needed an operation for a hernia, whose slow heartbeat was only a risk factor for that surgery, not a dangerous condition for him generally, and who had already survived a stroke two years previously? Why, in a man already 81 or 82 years old, was a pacemaker a prerequisite for an operation to relieve him of a painful hernia?

The author suggests many answers: lawsuits, Medicare policies, profit to doctors and hospitals from pacemaker "sales and installations" (for want of a better phrase), and the like. But she also points to the frustration her mother had, in dealing with the doctors prior to her father's hernia operation, in that alternatives were not discussed, the pacemaker's powers and longevity and what that might do were not mentioned, and in general there seemed to be no choice: either let this elderly and ill man continue to suffer pain from a hernia, or permit the installation of a pacemaker.

In our increasingly technological age, many of us may find ourselves facing the same questions and dilemmas as we care for aging grandparents, parents, and someday, for ourselves or our own spouses. The Catechism of the Catholic Church spells out a few guiding principles:

2277 Whatever its motives and means, direct euthanasia consists in putting an end to the lives of handicapped, sick, or dying persons. It is morally unacceptable.

Thus an act or omission which, of itself or by intention, causes death in order to eliminate suffering constitutes a murder gravely contrary to the dignity of the human person and to the respect due to the living God, his Creator. The error of judgment into which one can fall in good faith does not change the nature of this murderous act, which must always be forbidden and excluded.

2278 Discontinuing medical procedures that are burdensome, dangerous, extraordinary, or disproportionate to the expected outcome can be legitimate; it is the refusal of "over-zealous" treatment. Here one does not will to cause death; one's inability to impede it is merely accepted. The decisions should be made by the patient if he is competent and able or, if not, by those legally entitled to act for the patient, whose reasonable will and legitimate interests must always be respected.

2279 Even if death is thought imminent, the ordinary care owed to a sick person cannot be legitimately interrupted. The use of painkillers to alleviate the sufferings of the dying, even at the risk of shortening their days, can be morally in conformity with human dignity if death is not willed as either an end or a means, but only foreseen and tolerated as inevitable. Palliative care is a special form of disinterested charity. As such it should be encouraged.

Where does the desire to "turn off" a pacemaker fall into these guidelines?

I think that a pacemaker can legitimately be considered to be extraordinary, burdensome, or disproportionate in some instances, especially in the very elderly patient who is not in especially good health to begin with. This is not an attempt to discount the lives of the elderly--not at all!--but to recognize that a device which might be only moderately burdensome to a much younger person may, indeed, be intolerable to an octogenarian.

In the article, the author quotes a doctor who is morally opposed to turning off her father's pacemaker, likening the act to a direct act of euthanasia. However, the author says that the expected result of turning off the pacemaker would only have been to return her father to his previously slow heartbeat, a symptom of his age which was not impacting him prior to the insertion of the pacemaker. Clearly, in a situation like this where a Catholic was trying to decide what to do, it would be important to determine whether the turning off of the pacemaker would be likely to be a direct cause of death, or whether, in fact, the patient could continue to live in relative happiness for a reasonable amount of time without the device--and it would be important to gather sound medical opinions from doctors involved in the patient's care.

One of the things I found disturbing about the author's discussion of the Hemlock Society and related matters was this: it was unclear if the goal really was the mere removal of the burden of the pacemaker, or if the goal was to end her father's life (and suffering). If the goal were the latter, then merely turning off the pacemaker might not have had any such effect--which just highlights the danger for Catholics navigating these new waters of high-technology end-of-life care options. It is one thing to order the cessation of some burdensome care or treatment when there is little hope for improvement, and the care is causing more suffering than it is alleviating; it is quite another to order the cessation of this type of care in the hopes that death will result.

Though this is outside of the scope of the article I'm commenting on, I do want to mention that any talk of ceasing extraordinary or burdensome care (or deciding not to accept such care in the first place) does not in any way relate to food or hydration, both of which are necessary to all but those people who are actively dying. Food and water are ordinary care, and can't be refused regardless of the means of delivery; a feeding tube does not have to be inserted into a patient who is actively dying and whose body no longer absorbs food, but for anyone else a feeding tube is no different from a spoon, in terms of how "extraordinary" it might be.

Our lives are in God's hands from the beginning to the bodily end; our souls do not die, and that is a hopeful thought when pondering the possible indignities of old age, suffering, and death. But for us as Catholics, treating the patient with dignity does not mean seeking the patient's death; nor does it mean prolonging life through burdensome and extraordinary means. What it does mean is recognizing in the elderly, ill, and dying the same humanity we all share, and that God chose to take upon Himself, and treating them with the love and compassion with which we hope ourselves to be treated. It is likely that it will not be at all easy, but nothing worth doing ever is, is it?


Anonymous said...

Interesting post, Erin!

My father had a pacemaker from his early seventies until his death at 96 in 2003. The pacemaker enabled him to enjoy a good quality of life up to the end. Drove, shopped, maintained a household until his death (my bro and I helped). No dementia, but finally succumbed to the consequences of a urinary tract infection.

My mother, on the other hand, spent her last years in a nursing home suffering from dementia and other severe medical problems. Finally the doctor told my father that she would die if she didn't have a feeding tube stuck in her stomach. Not wanting to say no, and be the cause of my mother's death, my father consented to the insertion of a feeding tube. So it's off to the hospital for the insertion. My mother died within a few hours after being returned to the nursing home. Your assertion that a feeding tube is just another spoon doesn't seem to be supported in this case, does it?

Another story: A close friend's aunt in her mid-eighties suffered a massive stroke from which she would never recover. So, off to the nursing home for her and, you guessed it, a feeding tube. She, a devout daily Mass attending Catholic, had a living will which specified no extraordinary means to keep her alive. No ventilators, feeding tubes, whatever, except no one found the living will until after she died. On two occasions she yanked out the feeding tube, thus necessitating trips to the hospital to have it reinstalled. She died a couple of months later.

I believe people are capable of making their own end-of-life decisions (and, no, not the Hemlock Society!!)

Siarlys Jenkins said...

I'm surprised by 2278. Whenever there is a controversy about "turning off the machine" the Catholic church is characterized as insisting on heroic measures and use of every possible technology so long as there is the slightest heartbeat.

I'm not a fan of the Hemlock Society either, nor of Socrates for that matter. I would say that if all the man's organs are falling apart, leaving him blind, disoriented, incontinent, and "not the Jeff I married," then without wishing him gone sooner, it is still all right to pull the pacemaker if that doesn't result in immediate death. Our technological capacity is getting close to where the heart beat could be kept going forever, or until the earth shall end. Turn off the machine, and then, let nature take its course, which may be years or days.