From Baby Doe to gerontology, medical decision making the area of the withholding, refusing or withdrawing life support has become increasingly difficult.
New technology has had the most obvious impact as patients, families and physicians are offered more and ever new diagnostic and life-prolonging equipment.
CAT scanners are being supplanted by Magnetic Resonance Imagery using no radiation. Lasers are treating everything from eyes to arteries.
Twenty week fetuses that were considered untreatable are now kept alive with new respiratory equipment.
But even though technology has increased our treatment options for trauma and long-term illnesses, it is usually not the determining factor in making decisions. Rather, there exist a set of subtle, extremely powerful myths about death which inform and direct our choices regarding life support. These myths are indicative of the collective beliefs about life and death in U.S. culture.
They are frequently used as impediments to decision making. Whether based on medical tradition, social obligation or religious teaching, the death myths influencing our decisions are indelibly embedded within the collective psyche.
They flash through our minds when the doctor tells us the patient’s condition is poor. They are the screens through which we hear the diagnosis of serious illness. They are standards against which we weigh our response to a terminal prognosis. The death myths most prominent in our culture are:
Further, it is ageism at its worst to think an old person has “lived his/her life” and is more accepting or more deserving of death than a younger counterpart. In fact, it is entirely possible for the situation to be quite the reverse; the aged person may be more vital and have more to live for than the youth.
This myth can result in young person’s being subjected to extraordinary efforts from intubation to chemotherapy just because they are young or old persons prematurely being denied further treatment because they are old. The myth also serves to reinforce our own wish for a long life, and to defend against our fear of our own death coming “prematurely.” Whether we like it or not, people of all ages die.
Each death is sad, tragic, and acceptable or a relief based on the quality of the person’s life and the kinds of relationships s/he had. Each situation, therefore, needs to be evaluated on those criteria, not on myth that presumes it is “okay” for old persons to die, perhaps intimidating that the elderly want to die or even ought to die.
2. Medicine can cure everything.
Even in the face of long-term illness when the patient is finally about to die, panicked family members frequently ask, “Can’t you do something?” This reflects a strong expectation that medicine can find and cure all illness and physicians are or should be omniscient. Most physicians do not act to reinforce this image.
The myth persists because we want to believe that drugs, medical technology, and their physician purveyors can prevent or cure the effects of disease, aging and self-inflicted injury (smoking, diet, lifestyle). In addition, the medical community has frequently oversold the efficacy or advisability of a particular technical or therapeutic “breakthrough.”
Thus, particularly Western culture have acquired unrealistically high expectations of what technology can do. The current promotion of the artificial heart is the latest example of such a media event. Heedless of the availability, advisability and ruinous financial cost of such a devise, the heart is proffered as another example of medical technology’s ability to cheat death-and so this myth is reinforced. It is more honest to be realistic with patients and ourselves about the limits of tests, treatments, medications, and prognoses.
3. Life is always the highest value.
The initial presumption in nearly any accident or illness is always in favor of preserving life. But once the patient is stabilized and the prognosis is clear, other considerations take effect. It is at this point that the meaning and quality of life as the patient experiences them are of the highest value in making the hard decisions of treatment and life support. However, most family members or friends do not know what the patient values because they’ve never talked about what the patient wants done in terms of life support, organ donations, or experimental treatments. It is almost as though people hear this myth as a religious command-an injunction from God to keep breathing. In fact, in nearly every religious system, while longevity is highly value supports our own refusal to see death as an acceptable outcome for the patient-and for ourselves.
4. Money should not be consideration.
Many people believe it is crass and insensitive to give the cost of treatment any weight in medical decision making. In our “bottom line” society they emotionally recoil at the prospect of finances determining treatment, preferring to spend “whatever is necessary” to save the life of a loved one. But what of the young couple whose baby is dying, yet can be kept alive a few more hours or days in our high tech Intensive Care Nurseries?
Or the elderly woman maintained by a respirator in ICU whose husband is barely subsisting on Social Security? And what of the use of medical resources devoted to these dying patients (not just for comfort but for continuing active treatment that is much more than palliative) that could be used for taking care of other, curable patients, for research, or for reducing hospital costs for everyone? The honest, if uncomfortable, truth is that money is already a consideration. It will continue to play an even greater role as healthcare rationing becomes a reality given a limited amount of resources and a virtually unlimited demand.
Yet, sensitively done, consideration of the family’s or patient’s financial situation is a very caring gesture, as is weighing the effect of treatment on the cost of healthcare to the entire community, indeed to the nation.
5. Death is evil.
Death means failure.
While the church is responsible for promoting the former myth, the medical/healthcare profession is responsible for the persistence of the latter. Many people, desperately attempting to make some kind of logical sense out of their illness, have been told by the religious community that good is always rewarded and evil is always punished. They then extrapolate that since they are sick or dying, they must have done something bad to incur the punishment of a wrathful God. In fact, the sickness and death are amoral occurrences. They have nothing to do with good/bad, right/wrong, punishment/reward.
We get sick.
Welcome to Earth.
The death rate here is 100%.
One out of one dies.
The only thing “good” or “bad” about death is the manner in which one responds to it. Death, like about death is the manner in which one responds to it. Death, like any other amoral occurrence is merely an occasion for good or evil to become manifest. That manifestation is shown in our response to the event, not in the event itself. Likewise death has nothing to do with failure. Assuming one has done everything necessary (not possible, but compatible with life,” it is understandable that the person dies.”
We get sick. We die. Welcome to Earth. The death rate is 100%. One out of one dies. The only thing “good” or “bad” about death is the manner in which one responds to it.
Death, like any other amoral occurrence is merely an occasion for good or evil to become manifest. That manifestation is shown in our response to the event, not in the event itself. Likewise death has nothing to do with failure.
Assuming one has done everything necessary (not possible, but necessary) and the patient’s condition is said to be “incompatible with life, “it is understandable that the person dies. The death has nothing to do with the ability of the physician or nursing staff. In fact, it seems the height of arrogance to assume that we (patient, family or physician) have “failed” when death, a natural process, has followed its normal route.
This does not imply that death is not often sad, angering, relieving, unfair, or crushing. It is all this and more in emotional terms. The problem arises in treating death as though it should not happen, denying it as a logical, even acceptable outcome of the patient’s illness.
Death might more easily be tolerated if we saw it as a form a healing. Death as healing transposes its symbolic meaning from that of evil enemy to that of an acceptable, and at times even welcomed, friend.
6. Where there’s life there’s hope.
The myth is patently untrue.
Where there’s life there is quite often the opposite of hope-agony, fear, excruciating pain, anger, frustration, loneliness and despair. The sentiment really expressed here is that where there is biological activity there is reason for optimism that the person may recover, even against all odds.
The questions to be asked are: “What is life?” and “What is hope?”
Is life merely the exchange of air being forced into stiffening lungs, or blood being pumped inside a human cavity? Is it biological activity mechanically produced or substantially supported? Again, the quality of life standard (as judged by the patient if competent or by the patient’s significant others if incompetent) applies.
Increasing numbers of people believe that life is not life if there is no quality of relating, of experiencing and enjoying, of being. “Hope,” also, is quite often confused with “optimism.” Optimism demands the patients get well (not just better) and return to the former state of health. The meaning of hope, on the other hand, was expressed by a cancer patient who commented: “It’s okay with me if I live and it’s okay with me if I die.
Because either place I’m loved.” Hope implies that death is as acceptable an outcome to one’s condition as life. Hope embraces and affirms both life and death as parts of a greater whole of existence.
Hope sees life not as parts of a greater whole of existence.
Hope sees life not a problem to be solved but as a mystery to be lived, and death as a part of that mystery.
7. Suffering is redemptive.
Some people will refuse pain medication, withholding the palliative measures needed to they see the suffering as cleansing, deserved, or redemptive.
Usually based on a conservative theological or philosophical tradition, followers of this myth conquer their own helplessness in the face of illness and death by assuming discomfort and pain are spiritually or psychologically helpful to the patient.
It is sometimes true that suffering can be an occasion for redemption, for the healing of memories, relationships, hurts, fears, or guilts. Pain and illness often are the precipitators of change in behavior or perspective on the person’s lifestyle. But suffering is also quite often the occasion for unquenchable bitterness, debilitating despair, collapse of faith and disintegration of personhood.
Once again, in an attempt to make sense of an illness, people want to believe there is some purpose, some plan, some reason for the horrible suffering they or their loved ones are enduring, But suffering as related to illness in the hospital is as amoral as the virus, bacteria or bodily condition that is the cause.
8. You don't lie until your number comes up.
This myth reduces God to the clerk in the deli section of the local supermarket. The implication, of course, is that God personally decides the time of death for each individual based on some unknown formula having something vaguely to do with guilt, suffering, retribution and, only occasionally, with mercy. Thus it is thought to be inappropriate to make life support decisions because the person will die when God is ready. The truth is that people largely choose their time of death. People die around anniversaries, birthdays, holidays, and meaningful days for them: and they often wait to die until their loved ones leave the room. To believe this myth is to posit an all-controlling, capricious God, and to avoid responsibility for life support decisions.
9. It is God's will.
This myth covers everything from birth defects to hemorrhoids. It assumes powerlessness and futility on the part of patients and families to decide life support issues. Yet people would rather believe it than to accept personal responsibility for illness or the capriciousness of disease. This myth is not only a convenient method of avoiding the life support issues, but also reinforces a system of healthcare that leaves all decisions in the hands of the medical practitioners. In fact, it is theologically inconsistent to believe that a loving compassionate God wants people sick or dead. Probably the best discussion of this myth is found in Leslie Weatherhead's book entitled, appropriately enough, "The Will of God."
10. Pulling the plug is suicide/murder.
Many people refuse to make a decision to withdraw hydration, nutrition or respiratory maintenance because they believe such an act constitutes murder. Likewise, to designate a personal directive such as a Living Will may seem tantamount to suicide. The underlying presupposition is that it is improper to take any control one's own death. To do so is to usurp the power and prerogative of all-controlling God.
Not to make a Living Will or withdraw artificial support mechanisms is to decide to abdicate responsibility. It is to relegate the burden of decision making to someone (physician, hospital, committee, court) less qualified to make it, and refuse to accept our ability and responsibility as "co-creators with God" to share in the rational determination of our destiny.
One could just as easily argue that not to "pull the plug" or make a Living Will designation is to stand in the way of Nature, God or the normal procession of life to death.
11. To die of hydration or starvation in a hospital is inhumane, cruel and immortal.
When many people think of food and drink they imagine sitting down at a table with barbecue and beer (at least in Texas we do.) But that image is vastly different from the reality of the dying patient, or even the vegetative non-dying patient, who is maintained by artificial nutrition and artificial hydration. Instead, picture blue humming boxes sucking high calorie pastel liquid from bags and bottles and forcing it through clear plastic tubing into patient's nose or directly into the stomach or intestine. This artificial support is parallel to the use of a respirator that artificially pumps air in and out of failing lungs.
For increasing numbers of people, to dehydration or starvation while being kept comfortable with the large array of palliative drugs is far preferable and much more humane than the prolonged dying by incessant medical intervention that is demanded of patients by misinformed relatives and practitioners. It is clear that these death myths at one time served a proper and meaningful role in medical decision making.
As a part of our previous presuppositions about life, death and medicine, these myths stood to call all the available resources to the service of life at any cost.
At a time when the technological armamentarium was minimal and the major courses of treatment were palliative, the myth prescribed and underscored the medical/legal/theological ethical system of their day. But current technology has changed the perspective about and meaning of the concepts of life, death and medicine.
At these concepts are revised in light of even newer treatment options, we will need to develop a different, more flexible set of "death myths" to guide our decisions. Different from the old, the following guidelines facilitate, rather than impede, decision making in the area of withdrawing, withholding, or refusing life support.
Aggressively seek information.
Good decisions begin good facts.
Patients and families need to talk to the physician, and listen actively, critically when s/he answers. Many families complain that their physician did not tell them everything, when in fact they themselves did not want to hear and did not listen.
It is important that no unilateral decision be made. Both the desires of the patient and the desires of the family/significant other needs to be considered and a consensus carefully reached. Sometimes it is appropriate to consider the needs of the larger community as well:e.g.
Will this expenditure of healthcare (respirator, neonatal or ICU bed space, dialysis, heart surgery) limit the available resources for less catastrophically ill patients? Consider the ethnic of love and the ethnic of need. Jesus suggestion that we love our neighbor as we love ourselves implies putting ourselves in the position of the person whom life support is about to be withdrawn.
What is the most loving thing to do (for the patient, family, community) this situation? Another major ethical premise of the Old and New Testaments is always to come down on the side of the needy, dispossessed and helpless.
It may, of course, be difficult to determine who is the most needy in the particular situation. (Is it the dying infant, the grieving family, the respirator-bound adult, the anguishing spouse?) But, combined with the ethnic of love, the ethnic of need can be a helpful tool for clarifying decisions. Can does not imply ought. This clearly revolutionary maxim is nearly anti-Western. The West was built on "can implies ought." If we could build a railroad across the country, we ought to do so. If we can put a person on the moon, in a space station, on another planet, we ought to do it. Our new medical technology, however, is permitting us to do things that in some cases we ought not to do. Boundaries will have to be carefully drawn using this statement as a guide, particularly in the realm of life support decision making.
When faced at the bedside with a decision about withdrawing, withholding or refusing machines, I.V's or CPR, this maxim may assist many persons in allowing death to take its natural course. Be there. Continuity and support are viral. Whether you are the caregiver or the significant other, don't just make the decision and leave. Often families decide to withdraw treatment and then quickly absent themselves from the scene.
Such decisions are frequently relegated by default to medical and legal personnel on the assumption that these persons have some expertise in determining the appropriateness of a particular action. Patients and families, especially in a crisis, may turn first to external guidelines from physicians or attorneys hoping to find some solid ground on which to base their opinion of what is "right."
Often it is only after some confusing, disappointing or conflicting medico-legal advice that they begin to ask what is "right" for this person, given who s/he is and what s/he wanted. It seems clear that the basis for moral decision making must be primarily other than legal and medical, though those disciplines may offer helpful information. The place to start is with the desire of the patient. Death is a form of healing.
As stated earlier, rather than the evil enemy to be battled at any cost, death can be seen as a form of healing: a logical, even welcome alternative to a debilitating life. To view death in this manner requires a broader perspective on life, and assumes an attitude of acceptance of both life and death as a part of a larger existence. The more we will treat our terminally ill patients with the respect and dignity that their dying demands. The Bible is not a model for morality. It is a mirror for identity.
There is not much information about respirators in Genesis, Leviticus, or Revelation. It is clearly inappropriate to look to the Bible to tell us specifically what to do. It is, however, important to look into the Bible to tell us specifically what to do. It is, however, important to look into the Bible as a mirror to see who we are, to determine what kind of covenant people we are with our peculiar God, to watch how we interact with God and one another, and to use that information to make our ethical decisions more in line with the historical tradition and reality. Examine your own death.
How many people reading this article have: a legal, binding will? A durable power of attorney? A Living Will? Made their funeral arrangements and paid for them? Made a decision regarding organ donation? Are registered with an organ bank or procurement agency so that donation is likely to happen? Often those persons who claim to be on the forefront of assisting others in ethical decision making have done little regarding their own death. Studies have shown that if people have not faced these issues in their own lives, they are much less likely to even hear persons who are in crisis or dying allude to them.
If we are to be truly helpful to others in exploring the ethical implications of life support decision making, it would be well for each of us to make our own decisions first. The issues discussed here are not theoretical or rhetorical.
The question is not "if" we will have to make decisions, especially about life support, but "when?"
Some 70% of American deaths now occur in healthcare institutions. That means that death is frequently medically assisted and decisional, rather than spontaneous or "natural."
As this medicalization of death continues to grow, we will be forced to make life support decisions more often, either at the time of the dying, or in an advanced directive such as a Living Will. Preparation, especially at the parish level, through education, dialogue, and decision making now will facilitate our decision. If we do not make our choices and preferences known now, then others will make the decisions for us, and we will deserve the kind of technocratic terminal healthcare we will get.
The Rev.Charles Meyer is Assistant Vice President, Patient Services, St. David’s Community Hospital in Austin,Tex.