The letter before us is a most searching, thoughtful, and open presentation of the dilemma facing all of us. It is particularly relevant in a day when our technological advances have run far ahead of our ability to deal with their moral and ethical implications. Decisions that seemed simple, or that we faced with prayer a few years ago, are now fraught with confusion, guilt, and controversy.
Advanced technology is not all that has brought about the present confusion. A number of new pressures have come to bear on the problem: attention by the public, courts, and legislatures; mass media interested in airing controversial cases; a marked emphasis on individual rights with increasing participation of patients in decisions regarding their own health care; and a general suspicion of technology and medicine mixed with an almost magical belief that medicine has the answers to almost everything.
Along with these directions come new slogans: “Right to Choose,” “Right to Die,” “Death with Dignity,” “Quality of Life.” They all seem so reasonable until we try to define them. The “right to die” may mean anything from allowing a patient to die in peace without extraordinary attempts to prolong life when death seems inevitable, to involving physicians in ending the patient’s life when pain seems uncontrollable or life itself has become unbearable.
“Death with dignity” is even harder to define. Dignity has something to do with the meaning of being human. It may be consciousness and rationality; it may be respect of the person. It has something to do with community and interaction, giving and receiving. Perhaps dignity is maintained when individuals can make their own choices about themselves and their destiny. Many of these things are lost in the ravages of age, disease, and pain.
Medical science has made vast strides in the past decades. Diseases that a few years ago were fatal are now handled with comparative ease. But this has come about at the cost of ever-more-powerful drugs with potent side effects, and more intricate procedures with their attendant discomfort. All of these complicate the decisions about how to manage the patient who seems to be in a terminal illness. The end must come sometime, but the difficulty lies in knowing when to quit trying.
Physicians are able to anticipate probable response to therapy and expected outcomes. Still, it is medical impossible to predict accurately when does will come. Even when the prognosis seems most grim, the unexpected may happen or the miracle occur.
Physicians are guided by their own value systems, their own fear of death, their compulsions never to give up, or their interest in finding new treatments. Even if they do try to do only what is best for the patient, how are they to define extraordinary treatment? What is unusual for one physician or hospital is routine for another. What was extraordinary a few years ago is ordinary today. And what if there were no experimental programs? We would not be where we are today. Always within the heart of patient and physician is the hope that “this new treatment will be the ‘magic bullet’ ” that, for instance, will cure cancer.
It is equally difficult for patients and their families. Instructions left by patients, or in Living Wills, are necessarily vague and subject to misinterpretation. They may be used in a way or at a time that the patient would not have agreed to. Indeed, many who have made such wills have repudiated them when the time came and they were still capable of doing so. None of us can really imagine what we “would do if …,” whether it be for ourselves or for another. What seems intolerable in anticipation may be endurable when actually faced.
Where are we, then, as Christians? We are not immune to the fear of death, especially its attendant pain and disability, both for ourselves and those we love. The Lord’s compassion for those who suffer shines through the pages of Scripture. His answer was to deal as only he could and thus remove the suffering. It is a challenge to the church today to find ways to relieve the loneliness, rejection, hopelessness, and fear for those approaching the end of life.
But what of endless treatments and prolonged agony? Like everything else that we face in life, there should be a balance. There have to be trials of therapy to see if added years to life are possible, and experimentation, too, in the hope of finding new cures. But there must be limits to how far we can go.
When the decision to stop is made it is time for loving support. This means attention, food, warmth, and bodily care in a tender, patient spirit.
We will and do make mistakes. Heroic measures will bring one back to vigorous life, while another will have permanent brain damage or prolonged suffering. We must learn to live with this inequality. We may find that our knowledge was limited, our predictions wrong, and that the Lord had other plans. This, too, we must accept as from his hand.
On the other side, compassion is not the only virtue to be considered. We cannot make our decisions in a moral vacuum. We must guard the principle of the sanctity of life based not on the intrinsic dignity of any individual life but on the fact that God created man in his own image and determines his destiny. If we do not, we risk sweeping away of all restraints in this permissive, liberal society. Once the psychological barriers against taking innocent life are down, application to broader and broader categories of persons will become acceptable. We must be careful as Christians not to allow ourselves to be drawn into accepting euthanasia on the supposed grounds of compassion. Every decision to draw the line on what seems to be further useless treatment should remain a difficult one.
Then how do we cope with suffering that continues despite all we try to do? Somehow we have come to believe that if we did things right, suffering could not occur. But life does not consist in freedom from stress or pain. The Bible does not teach that our greatest good lies in removing all difficulties from our path. Rather, it speaks of learning to comfort others through our suffering, and it talks of enduring. It says the Lord comforts and strengthens us to face with courage the sufferings we endure, and it reminds us that he learned obedience through the suffering of death.
Ultimately, the choice lies with him. When we have done what we could in a loving, responsible way, it is no longer ours to determine. It rests in the sovereignty of God. The stress will remain, along with the perplexities that force us to run to the Lord and learn to rest in him.
Dr. Blumhagen, a former medical missionary in Afghanistan, is an emergency physician practicing at Delnor Hospital in Saint Charles, Illinois.
I am responding to your letter, Mrs. Chapman, as one who has thought a lot about such matters. I have discussed them with a number of Christian physicians, and to a slight extent, was forced to make, along with Mrs. Bayly, a similar decision—though not so difficult or continuing as yours—at the time our four-year-old died of leukemia.
In my opinion, there is no simple, all-embracing answer to the problem. Nor is there any particular course of action that does not involve the risk of being judged wrong in retrospect.
The basic problem is that medical treatment and technology have developed in recent years to the point where life can be maintained for days and weeks, even for years, after it would have ended in all previous ages of human existence. That is also true and in most of today’s world outside the United States that does not share our medical sophistication or influence.
Physicians today must make the decision in a specific case as to whether to apply that treatment and technology or to withhold it. Sometimes the decision is relatively easy; most of the time it is not.
The difficulty is in determining whether living is being prolonged, or simply the act of dying. Decisions about surgery, various life-support systems, blood transfusions, and intravenous and other extraordinary types of feeding and maintaining fluid levels are all involved. The end result is weighed against the factors related to achieving it (pain, consciousness, relational, financial, age, length of potential survival time, etc.).
When our little boy awoke bleeding one morning, we called in the pediatrician. He said, “I can admit him to Children’s Hospital and give him a massive transfusion, or I can leave him to die here. If he has the massive transfusion he might live for two weeks more; he might not. It’s up to you to decide.”
We decided that if he was going to die, we’d rather have him die at home than go through another hospitalization that really couldn’t promise more than very slight prolongation of life at best.
Our boy died that same day. I don’t believe either Mrs. Bayly or I have ever had second thoughts about that decision.
Your decision was based on your father’s expressed desire that doctors not take extraordinary measures to keep him alive. (Sir William Osler, the great Canadian physician, made a similar statement in his last illness: “I am so far across the river; if anything happens, don’t try to bring me back.”) Is such a request appropriate—especially from one who loves the Lord and his Word, as you describe your father? I think it is, and your father’s doctor evidently felt that it was or he would not have permitted you and other members of the family to dictate his medical decisions. As a physician, he, not your father or the family, is primarily responsible.
Since your letter was written some months ago, I’m reasonably certain your father is now with the Lord, “which is far better.” But the question and some feelings of guilt may remain.
Perhaps your decision to withhold feeding by extraordinary means was wrong. Your comparison to one of your children losing his swallowing reflex is not appropriate, however, because in the one case you are speaking of a dying person 83 years of age; in the other, of a child or adolescent with life before him. But even so, perhaps your decision about your father was wrong.
At best our decisions are made without knowing all the factors or all the consequences. And in a medical question of this sort, no layman can make an informed decision, especially under the emotional pressures that are present. A brief conversation—or even an extended one—with the physician is no substitute for medical school, residency, and years of practice. (For this reason I feel that ordinarily the physician in charge should make the decision rather than force it on relatives.) At the same time, he or she will usually share the prognosis and plan of action (or inaction) with the patient and/or family.
This presupposes that the person involved in the desire that heroic measures not be taken and the family both trust the physician in charge. This is one strong reason for having a Christian physician who shares similar values as far as life, suffering, pain, and so on are concerned. One question that I have found somewhat effective, both because it causes the physician to enter into the real situation and also because it frees him or her from the fear of a malpractice suit to some extent is, “If this were your own mother [or father], what would you want?”
If you were wrong, I need not remind you that God forgives sin. He removes guilt, true and false. (I personally find it hard to distinguish between the two. I just pray to God, through Christ, to forgive me.)
As far as your father is concerned, what difference does it make now? Was it wrong to hasten his departure from this veil of tears—if you actually did? And can anyone be sure that you did?
I agree with your statement about not necessarily having perfect peace when you do what you perceive to be the will of God. So many of life’s decisions are not between right and wrong, but between alternative choices, both of which may be right or (more often) wrong. To admit our fallibility, our dependence on God, and then to make what seems the better (or less worse) choice is all that we can do.
And in making such a choice, we trust in the sovereign God, who can undo our choices, changing consequences if we are wrong, and forgive our sin of ignorance. Often, as you indicate, there is no peace—only assurance that God is in control, whatever we may do, and knows our intentions were good and designed to do his will.
I trust that God is comforting you and your mother in the temporary loss of your father. Thank God for eternal life with Him!
Mr. Bayly is vice-president of David C. Cook Publishing Company, Elgin, Illinois. His 1973 book, View from a Hearse, was recently republished by Cook as The Last Thing We Talk About.
The thoughtful questions raised by Mrs. Chapman are of the sort where there may be no absolute answers. Some guidelines can be suggested, however, which may be helpful for one who must participate in decisions for patients in similar circumstances.
First, the person involved does have the right to share in decisions about his or her care, assuming that the individual’s reasoning powers are intact and there is a method of communicating with him or her. This is a legal right. But deeper than the legal implications is the fact that God has endowed the individual with responsibility and reasoning powers. The ability to reason, along with the ability to discern right from wrong, distinguishes man as having the stamp of God’s image. The child under the care of parents or a guardian, and without the experience needed for mature decision, is totally different. Parents bear the responsibility to decide what is best and appropriate for a child when decisions are needed.
Then there is the question of what would be “ordinary” forms of care, and what could be termed “extraordinary.” Ordinary measures could be defined as those that would allow or assist body organs to function effectively. Surgical procedures would be “ordinary measures” when they do not in themselves carry inordinate risk to the individual, and when they restore normal function to the organ system. For instance, in Mrs. Chapman’s father, a “urinary blockage” was present, and a tube (catheter) had apparently been placed directly into the urinary bladder above the pubic bone. The placement of such a catheter is a minor surgical procedure allowing the kidneys to function normally. This I would term as “ordinary,” “reasonable,” “prudent.”
Extraordinary measures might be termed as those that would take over the function of an organ system, or would themselves carry such a risk as seriously to call in question the use of such a measure for the patient. An example in this instance would have been to use dialysis to solve the “urinary blockage” problem rather than a simple catheter surgically placed into the urinary bladder.
Another example of what might be termed “extraordinary” is the use of a respirator when brain function is destroyed. (This is totally different from the damage to the portion of the brain controlling respiration from polio, where the higher centers of the brain are left intact.)
For the patient who has been injured or suffered a complication from surgery, any means available or useful to return that person to his or her normal life is appropriate. These measures may include a respirator, dialysis, transfusions, surgery, and so on. An individual may be incredibly ill, and yet return to a totally functional life.
For the patient known to have a terminal illness, however, a different set of guidelines is needed. The question in such a person’s care is, What measures will be of help in providing comfort and usefulness for however many days of life remain? Usually the use of a respirator or dialysis for such a patient would be “extraordinary.”
The specific question raised about nutrition for such an unfortunate individual is not uncommon. It is my feeling that where the individual’s gastrointestinal tract is functional, using that means is superior to others. A nasogastric tube (a tube placed through the nasal opening and through the esophageal tract into the stomach) can be used for short-term feeding. This is usually not satisfactory for anything but a very temporary measure, and has several distinct hazards, including pneumonia.
A “feeding gastrostomy,” or a tube placed into the stomach through a small incision in the abdominal wall (most of the time placed using local anesthesia), may be a good solution, providing the means to give nutrition to the patient. A gastrostomy tube can be cared for at home, while an intravenous line needs institutional care. On this basis, the use of an IV might be called “extraordinary” since it is more disruptive of life, requiring continued hospitalization. Remembering the definitions suggested, a gastrostomy tube might be termed “ordinary,” allowing the use of the gastrointestinal tract and being capable of home care.
Underlying all of these technical considerations, however, is the fact that God is lovingly involved and sovereign in the lives of each of his children—in this instance both the patient and the family members attempting to make good decisions on behalf of their father.
While the judgment of individuals may vary with respect to what is appropriate, I believe that when God’s children ask for guidance, they can trust him to give that guidance. We can also trust him to lead us to change an initial decision that might not be best. This conviction about God’s active care for his children is a great comfort to me. As Christians, we ask for guidance, and do our best with information available in the light of principles of Scripture. Then we can trust God.
We must also remember that even in our technological age we never understand the total picture. Job’s friends, and even Job, drew some incorrect conclusions about his circumstances. Job maintained his integrity and brought glory to God through his trust. We must do the same.
GORDON L. ADDINGTON
Dr. Addington practices general surgery in Saint Paul, Minnesota. He was formerly a missionary doctor in Hong Kong.
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