Introduction Chapter 1: In Praise of Maria: a memoir

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Denial can thus be a good attitude at the beginning of the process. Persisted in completely to the end, denial is not a good. Kübler-Ross is somewhat ambivalent on this point. She describes one case in which the woman seemed to be in denial until the end. Kübler-Ross later wonders “if I was not a bit too ready to support her denial.”xlii But elsewhere she thinks that the proper approach to a particular patient is “to allow him to stay in the stage of denial.”xliii

If she believes that acceptance is ultimately better than denial, I think she must also argue that a counselor should try to help the person beyond denial. The caveat is that denial and acceptance become ambiguous when interpreting another person’s life. Denial can have many forms and degrees. Frontal attacks on denial almost always fail. Therefore, a counselor should be trying to help a person beyond denial while being aware that the counselor’s perception of what constitutes denial may be skewed.

Kübler-Ross named the second stage of dying anger. It is an appropriate name for the moment when the dying person cannot sustain complete denial. “Yes, I am dying and I’m mad as hell about it.” Anger is generally thought to be a vice or a failure of temperament, especially in Eastern spirituality. Christianity, while listing anger among the capital sins, also recognized “holy anger,” a proper response to some evil. East and West may have a profound difference here or perhaps the difference is more at the level of applications and connotations.xliv Anger seems to be an understandable reaction when it becomes clear that one is fatally sick.

Some of Kübler-Ross’ most helpful comments in On Death and Dying are in the chapter on anger. For the dying patient, it is important to know that feeling anger and letting the anger out in nonviolent ways is a healthy reaction.xlv Just as important, it is indispensable for the care giver to be prepared for anger and to know that the anger is not personally directed. The dying patient is not angry with the nurse, counselor, family member, friend, or whoever is in the general vicinity. The patient is angry at the disease, at the situation, at God. When asked what to do about a patient angry at God, Kübler-Ross replied: “I would help him to express his anger toward God because God is certainly great enough to be able to accept it.”xlvi

Although the care giver has to be understanding about anger, that stance is not equivalent to being passive in the face of anger. One can tell the patient that some behavior is unacceptable. There may be a need to talk out the anger; some of the anger may have a reasonable basis and the cause of the anger can be corrected. In any case, a vigorous human response is called for. In the play, Whose Life Is It Anyway, the patient is angry that the social worker does not criticize him for his outbursts. Treating a dying patient as a human being includes conversation, criticism of bad behavior, and even sharing a joke.

The third and fourth of Kübler-Ross’ stages repeat the pattern of no to death, yes to life, followed by yes to death, no to life. She calls these two stages bargaining and depression. The pattern of no/yes to death is repeated but now at a deeper level. The chapter on bargaining is the shortest in the book, the one chapter on the stages of dying without a transcript of a conversation. That is unfortunate because there would be no shortage of data. Bargaining might start in the first stage and continue in the third, fifth, and seventh stages. The dying person will try to bargain with everyone and everything.

The religious person has God to bargain with. Logically, God would be the only one who could commute the death sentence. But even people who say they do not believe in God try to strike a deal with the forces of the universe. Anyone in the immediate environment, anyone imagined to have power, becomes a fit candidate for negotiating a deal to put off death. So long as one bargains, one can keep denying that death is approaching.

When the fourth stage reverses the third, the no to life now takes the form of depression. This stage parallels anger but now the emotions are more deeply set and are indicative of the person being further along on the journey. The term depression is almost totally negative in its connotations. But as is the case with each stage, Kübler-Ross finds a positive aspect along with the negative. For this stage, she distinguishes the good and bad into two kinds of depression; reactive and preparatory.xlvii The bad depression is directed to the past, the good form of depression is concerned with the future.

Reactive depression is a guilty feeling about what the person has or has not done during his or her lifetime. Unresolved personal problems weigh heavily upon the person, something that the dying should not have to carry. Being depressed about the past is no help to anyone. Kübler-Ross recommends vigorous counseling to help the person get beyond this reactive depression.

As for preparatory depression, she recommends a nearly opposite strategy. This depression results from a realistic assessment of what lies in the near future. The patient’s whole system is beginning to shut down. Trying to cheer up the patient will not work and may be burdensome. That fact does not mean the person should be abandoned to his or her depression. The best that one can do is to be physically present and provide whatever verbal and physical contact that the dying patient wants.

Finally, there is “acceptance” which is not a stage but a resolution of the two, four, six or more stages that have preceded it. Do most people reach this state? Kübler-Ross begins the chapter on acceptance by asserting that “if a patient has enough time (that is, does not suffer a sudden unexpected death) and has been given some help in working through the previously described stages, he will reach a stage during which he is neither depressed nor angry about his fate.”xlviii Since her patients in the study had both of these conditions fulfilled, she found that “the majority of our patients die in the stage of acceptance.”xlix That conclusion is the most that she can claim about the universality of acceptance. Clearly she thinks acceptance is the way to go but neither she nor anyone else can know in what state most people die.

Kübler-Ross insists on a distinction between acceptance and resignation. The latter term she describes as simply giving up. In contrast, acceptance, while not connoting an embrace of death or a pleasant experience, does suggest that one is actively open to receive death when the time has come. Unlike the four stages that preceded acceptance, here the positive and negative aspects have been separated into two different terms: acceptance and resignation. Only the positive one, acceptance, is deemed acceptable.

Acceptance is characterized as peaceful and calm. Kübler-Ross sometimes speaks of acceptance as directed toward one’s mortality, at other times toward the fact of one’s imminent death. This double meaning might seem equivocal unless one grasps how the two are related. Acceptance is not primarily about the fact of dying. It is about accepting one’s life that is soon to include dying. The person has concluded, “This is who I am, this is a whole life, this is the meaning of my life.” If it were a question of the fact of death, one would simply recognize or acknowledge that fact.

Persons, situations and the universe have to be “accepted” rather than just acknowledged. William James defended Margaret Fuller against the ridicule of Thomas Carlyle for her saying, “I accept the universe.” James commented that “at bottom the whole concern of both morality and religion is with the manner of our acceptance of the universe. Do we accept it only in part and grudgingly, or heartily and altogether? Shall our protests against certain things in it be radical and unforgiving, or shall we think that, even with evil, there are ways of living that must lead to good?”l

Kübler-Ross chose the right term, acceptance, with its profound philosophical and religious significance. She did not do such a good job in describing acceptance. At least, she did not leave enough room for interpreting what acceptance might mean in particular cases. Part of the problem, I suspect, is that she assumed a context which is not fully described in the chapter on acceptance. What she describes there is the dying person withdrawing into a state of solitude, detached from outside concerns.

While she is right that the living have to “let go” so that the dying person can accept death, that does not mean the absence of a community. There are many documented cases in which the patient waits until family members leave before dying. In such cases, a caring community is not the problem; it is the possessive attitude of some people who are attending the dying. The dying person wishes to finish life surrounded by those who love and care, but the circle of community can vary greatly in its shape; the community should not be too narrowly confining. The dying person needs solitude not loneliness, a solitude that includes not feeling abandoned.

Kübler-Ross opening statement on acceptance is: “He wishes to be left alone...” She goes on to say “or at least not stirred by news and problems of the outside world.” This second comment is more to the point. She describes someone sitting with the dying, holding their hand, listening to the song of a bird, simply being present in silence. The whole point of stages of dying is the realization that the dying person needs the help, understanding, and presence of a community. Final acceptance should be a confirmation not a rejection of that attitude. Kübler-Ross seems here to be concentrating on death as a biological event, whereas human death is a personal and communal event.li

A second way that Kübler-Ross may too narrowly circumscribe the meaning of acceptance is by describing it as “almost void of feelings.” That may be accurate but if acceptance is the culmination of stages of emotions, it might also be called the integration of all those emotions. The fullness of feeling could appear to be the same as the absence of feeling. If final acceptance can be said to include all the emotions, it would not be surprising that at times elements of anger or resistance are still evident. Admittedly, it is difficult to reconcile acceptance with “rage, rage against the dying of the light.” But someone who is a fighter to the last might still have reached acceptance.lii

The claim that the dying person is void of feelings is tied to Kübler-Ross’ description of the dying person as going back to early infancy, “to the stage that we started out with and the circle of life is closed.”liii That image, the one which she used in entitling her autobiography “The Wheel of Life,” seems to me unfortunate and misleading. It is related to the dangerous tendency to confuse childlike attitudes in the old with childishness. Eighty-year-olds are not children and should not be treated like children. Death experienced as the completion to life should not be interpreted as a denial that a life has occurred.

The image of a closed circle or wheel is to be distinguished from the cyclical movement that I described earlier. One should not declare the circle closed even in death. A cyclical movement always leaves open possibilities that we may not be aware of. I think that Kübler-Ross’ description of acceptance as a closed circle is part of the reason for her turn in the road after On Death and Dying. She not only turned to the spiritual but to a spirituality opposed to the body. She then repeatedly made such statements as: “Death, as we understand it in scientific language, does not really exist....My real job...is to tell people that death does not exist....One way to not be so afraid is to know that death does not exist.”liv

These statements would be puzzling from anyone; but from someone famous for investigating the dying process, the statements seem bizarre. Kübler-Ross, like everyone else, has a right to her beliefs and a right to change them. But what she repeatedly said in speeches and essays does not seem to make sense

In her memoir, she says on page one that “death is one of our greatest experiences,” while later in the book she says that “death does not exist.” She also says that death is “a transition to a higher state of consciousness where you continue to perceive, to understand, to laugh and to be able to grow.”lv The metaphor of growth survived in her speculation, even apart from bodiliness. If one views death as a “transition” it seems unintelligible to say “death does not exist.” Many religions see death as a transition but they do not deny that dying is real, that it is often painful, and that it is the dissolution of the life we have known.

In On Death and Dying, the chapter that immediately follows the chapters on stages is entitled “hope.” Perhaps there is a neglected theme there that Kübler-Ross might have pursued further. She begins the chapter by saying “the one thing that usually persists through all these stages is hope.”lvi That suggests an attitude of crucial importance, one which comprehends stages of dying and goes beyond acceptance.

Unfortunately, her description of hope is unclear. She says “it gives the terminally ill a sense of special mission in life” but then adds “in a sense it is a rationalization for their suffering at times; for others it remains a form of temporary but needed denial.”lvii That description of hope is reductive. She goes on to equate hope by the dying to counting on a cure or to being able to talk about their dying.

Christian theology developed hope as a “theological virtue,” the one that links faith and love. Although somewhat neglected in Christian writing, hope could turn out be a virtue that is especially appropriate for today’s skeptical world. Hope does not claim to know the future nor does it promise a reward. Thomas Aquinas notes simply that “the difference between hope and despair is the difference between possibility and impossibility.”lviii

The individual today wants to be in control of his or her life. Death is a shocking reminder of the power and forces which are far beyond the individual. The only choice left is hope or despair, and as Gabriel Marcel writes, “hope is the will when it is made to bear on what does not depend on itself.”lix It is difficult to see how acceptance of one’s own dying is possible without the accompanying feeling of hope – that, “at the bottom of the heart of every human being, from earliest infancy to the tomb, there is something that goes on indomitably expecting, in the teeth of all experience of crimes committed, suffered and witnessed, that good and not evil will be done to him.”lx

CHAPTER FIVE: THE NEW EUTHANASIA

This chapter is about the changing meaning of “euthanasia,” how and why the word has been changing, and whether that change is helpful. The cases that are discussed in this chapter include people who end their own lives with the aid of someone else, people who are put to death without their consent, and cases where people are allowed to die either because a treatment was originally withheld or because it is subsequently terminated. The term euthanasia has spread out so as to cover all of these disparate situations but unfortunately that can produce inconsistency and confusion in the term’s usage.

The movement to a positive meaning for “euthanasia” has been a somewhat surprising development in recent decades. The term’s etymology is positive, that is, it means a happy or good death. But the word was coined as a euphemism for a practice that was widely and severely condemned. As happens with many social movements, a small group of believers doggedly insisted in the face of widespread disapproval that euthanasia – mercy killing – should not only be allowed but should be seen as an important good. In recent years, the movement seems to have achieved considerable success.

One extension of the term euthanasia has been to include physician-assisted suicide. The logic here is understandable; a happy or good death might include the patient asking for an end to life. Thus, it is said that euthanasia can be voluntary as well as involuntary. Voluntary euthanasia certainly draws more support and approval than does involuntary euthanasia. Euthanasia as a term has managed to gain a more positive meaning by the introduction of this distinction. Voluntary euthanasia is intended to be less harsh in meaning than the connotations usually associated with the term suicide.

A more questionable change in the movement to make euthanasia a positive term has been its extension to cases of allowing a person to die. The practice of allowing death to occur has a long history of being morally acceptable. Euthanasia automatically acquired a more positive meaning by this wider inclusion. One can argue that there is nothing illogical in this extension of the meaning of a “good death.” Nevertheless, one can be suspicious of this move which has more to do with political acceptance than logical consistency. Discussion henceforth was not to be about the contrast between allowing someone to die and killing someone; it was about two kinds of euthanasia.

Whether or not the intention was to mislead, these two kinds were inaccurately named “active” and “passive,” terms that obscure the heart of the issue. Once the language of two kinds of euthanasia was in place, there was a claim that no significant difference exists between killing and letting die. The latter, “passive euthanasia,” it was said, actually involves activity. The result is that “euthanasia” and “active euthanasia” can then be used interchangeably. The implication is that “passive euthanasia” should disappear. “Euthanasia” was rehabilitated by the creation of “passive euthanasia,” which began disappearing immediately after its birth.lxi

I do not think that this change of language was the result of a plot or a conspiracy. Language is not so easily controllable and probably no one had charted the course of this change. The shift in “euthanasia” happened among a public that may have been open to persuasion. But a change of language can either help to clarify points of debate or it can cloud an issue that is in need of further inquiry. How we use the term euthanasia is in some ways a minor question but it is tied up with important changes that need debate.

Until recent decades, the meaning of “euthanasia” was clear. The Oxford English Dictionary gives a summary of its meaning as “the action of inducing a gentle and easy death. Used especially with reference to a proposal that the law should sanction the putting painlessly to death of those suffering from incurable and extremely painful diseases.”lxii Up to the middle of the twentieth century, both friend and foe would have concurred on that meaning of euthanasia. The attitude of the medical profession was succinctly stated in 1973 by the American Medical Association: “The intentional termination of the life of one human being by another – mercy killing – is contrary to that for which the medical profession stands and is contrary to the policy of the American Medical Association.”lxiii This brief document then allows that there can be a cessation of “extraordinary means” to keep a patient alive.

One of the first and most famous mercy-killing trials was held in Manchester, New Hampshire in 1950. The entire city had been shocked at the announcement that Dr. Herman Sanders, a highly respected physician, had been indicted on a charge of first degree murder. He had four times injected 10 cc. of air into the vein of a dying patient. According to Sanders, the patient had asked him to do so. He duly noted on the patient’s chart what he had done. The trial attracted national and international attention. The jury acquitted Sanders, apparently on the basis that there was no proof that his actions were the cause of death. Juries in subsequent mercy-killing cases also refused to convict any physician of murder.

Physician-Assisted Suicide

The phrase “physician-assisted suicide” brings up issues of the law and ethics. There is a question about the right to be assisted in the committing of suicide, a right that implies a duty for someone else. There are also questions about whether a physician is the person who should assist, whether all physicians should be required to assist, and in what ways a physician should assist.

By referring to “physician-assisted suicide,” one avoids the simple, blunt question: Is it all right to kill oneself? By bringing in the physician, a kind of approval is given or implied. “The current assumption about physicians’ role in assisted suicide demonstrates that we remain in the grip of the norm that first took hold in the mid-nineteenth century, when physicians displaced clergy as the principal and even exclusive custodian of death and dying.”lxiv

By including the physician, we seem merely to be discussing various medical treatments. But the question of suicide raises the issue of the physician’s proper professional role. There are some cases where people are physically incapable of ending their own lives, but there are many others in which a person is fully capable of the act. If the principle on which suicide is judged to be acceptable is the patient’s “autonomy,“ then always referring to the physician’s assistance fails to be forthright about what is being discussed.

Many physicians would object to being required to help kill the patient. The two roles of healer and killer are not easily combined. If not the physician, then who would do the assisting? It is difficult to imagine a new professional specialty of suicide assistant. In some cases, a close friend might be able to assist. One famous case involved the television reporter, Betty Rollin, who recounted in detail how she helped her mother to die.lxv Rollin prepared the lethal dose of the drug and then left before her mother took it. Although there were legal grounds for Rollin’s arrest, the state’s attorney general refused to indict her.

Rollin had made a distinction between helping her mother to secure the means of death and actually administering the drug. Some people might find the distinction trivial but, especially for physicians, it might be important. If a friend or a physician administers the lethal drug there might well be a question about the patient’s consent. Even people who thought that Dr. Jack Kevorkian was raising the right issue disagreed with his “suicide machine.” He claimed that he was only helping to die those who had asked for his help. But most of his clients were aged; many of them were depressed.

There are degrees of coercion by powerful people, even when they do not intend to coerce. The physician – part father, part guru, part scientist – always has to be careful about dominating the patient who is frightened, in pain, and feeling helpless. The person’s mood may change from day to day, hour to hour. When a person says “I just want to die,” he or she may really mean it or the person may be going through a bad patch. People can change their minds about most things and they can act differently in the future. The obvious exception is if they ask someone to end their life and the decision is carried through.




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