p simmonsIntroduction

By now it is virtually a truism to say that hope is a vital part of the healing process. Patients who are depressed or have lost hope in the future do not make good candidates for surgery. Their chances for surviving life-threatening illness or debilitating injury is also lowered. They are also far less likely to survive extremely stressful events or what seem to be unrelievable and devastating circumstances.[1] An optimistic outlook is crucial to good outcomes in all these areas.

Even so, optimistic outlooks often mask a false hope, which manifests itself in a variety of ways. False hope often goes unacknowledged by those most involved in clinical settings. And it receives scant attention in religious and secular literature. The emphasis usually falls on the positive effects that piety might have on healing. But the persistent effects of false hopes in the clinical setting merit attention.

The purpose of this paper is to explore the meanings of false hope, its origins and manifestations in the clinical setting, and to suggest theological and ethical responses to such phenomena. The aim is to sort out the biblical-theological grounds for Christian hope and attempt to discern the difference between hope that is sustaining and genuine and that which is futile and false. Two stories help to focus the issue:

 

  • Sharon was 46 when she died of cancer. It had all started with a melanoma on her left arm. The surgeon who removed it was relatively confident all tumorous material had been removed. If not, he said, it will be back in two years. And it was, but it was also metastatic. She had lymphoma. Every procedure was tried; she was fighting back. Her hope for a cure remained strong. She even applied to the NIH for a new experimental therapy. As her sister put it, "that was our last hope." She died just before she was enrolled in the trials.

     

  • Hugh was severely injured in a head-on collision in 1995. He was maintained in a nursing home for three and a half years in spite of a very dim prognosis. He was recently declared to be in a persistent vegetative state--the condition made famous by Nancy Cruzan. Now his wife wants to terminate the nutrition-hydration that supports his minimalist life, because, she said, "that is what Hugh wanted. He did not want to be maintained in a way that has little if any possibility for the restoration of consciousness." She believes that any hope for recovery is based on denial and false expectations of the future.

     

Strong feelings and heated debates have been generated over just who entertains true or false hopes in situations like these. Disagreements often turn to acrimony with accusations ranging from bad religious faith to malice toward the dying on the part of those who believe treatment should be terminated.

 

The Paradox: Hopes True And False

That Christians are to live by hope is a given of the faith. Hope is a thoroughgoing motif of Scripture. J├╝rgen Moltmann has observed that even the major sections of the canon end with a view of what is to come. The very structure of the Bible is anticipatory.[1] Paul captured the inner dynamics of Christianity with a trinity of grace: "So now abides faith, hope and love," (I Cor. 13:13) he declared. And the writer of Hebrews treated hope as the dynamic of history. Hope is the expectation of the unpredictable and the fulfillment of anticipations rooted in faith. "Faith is the assurance of things hoped for, the conviction of things not seen," the writer says (Heb. 11:1).

People also live by false hopes. These seem to be the "other side" of both good faith and solid hope. The phenomenon of hope is basic to living; the phenomenon of false hope seems its perpetual twin. Or, to put it another way, people live by hope whether it is true or false; whether it is grounded in reality or based on fanciful thinking. False hope is wishful thinking or daydreaming in a way that denies reality. It is a way of construing the alternatives open to a person in a way that denies or refuses to assess entirely predictable but unpleasant outcomes.

Every teacher has seen the youngster who is confident about how he or she will perform on an upcoming exam. To hear the student tell it, all is well, the exam will be relatively simple and the test grade will show superior if not excellent marks! The teacher smiles with a knowing insight. This student has not kept up with homework, does not have good study habits, shows no other indicators of having mastered the material and, on a daily basis, does not show even a passing performance level. The student's "hope" is stated emphatically and even enthusiastically. He has an air of confidence that would otherwise be convincing. But the teacher knows otherwise. It may even be that the student is religious and expresses confidence in the future in religious terms: a miracle will take place and God will give the student superior insights and knowledge so as to do really well on the exam. The teacher's skepticism is neither a faulty religious piety nor a lack of belief in miracles. Nevertheless, skepticism wins out. The teacher knows that the student is denying reality and expressing hopes as a kind of fingers-crossed approach to the coming examination. Flunking the exam, not getting superior marks is entirely predictable.

The parallel between the classroom and the clinical setting is not difficult to make. Physicians and other health professionals have seen optimistic patients with an unmeasured confidence in positive outcomes even when the prognosis is terribly bleak. Retreating into a false hope and optimistic view of the future is one way of coping with traumatic news, of course. Without the safety valve of such a coping mechanism, one's physiological and psychological systems might fail.

 

False Hopes as Looking for a Miracle.

Beyond expressing such hopes as a coping mechanism, however, patients often "expect a miracle" as a matter of religious faith. For them, persistence in treatment is a way of being faithful to God.[3] The parent of a dying child might believe that the child's only hope is their unwavering faith that God will heal the child. They fear that God will not heal their child if they fail the test of faithful waiting. Presenting themselves as hopeful and faithful believers becomes necessary to prove their faith to those around them. The child will get well; this illness will be defeated; God will give them a miracle; of these they are sure.

Alexander Pope once observed that "hope springs eternal in the human breast." [4] He noticed that hope pervaded various dimensions of the human condition: the struggle with illness, efforts to restore life after natural disasters, and the enduring effort to escape poverty. Pope was critical of hope as a way to material prosperity. "Man never is, but always to be blessed," he added. "The soul, uneasy, and confined from home, /Rests and expatiates in a life to come." Life seems to have been more tolerable if not more blessed by the capacity for hope, even if it were false.

Further, false hopes and genuine hope have a way of becoming confused in the human psyche. The paradox belongs to being human. People are mortals and are incapable of perfectly envisioning either future outcomes or the actions of God. They are motivated by hope, even when, as so often happens, those hopes are groundless. Exaggerated expectations that take the form of hope may set one up for disappointments which may, in turn, be devastating. Bitterness may result whether directed at God or at the absence of justice in the universe.

 

Scripture, Story and False Hope.

The paradox is also found in the literature that helps to shape the Christian view of the future and the beneficent actions of God. Scripture is replete with stories that engender hope; others make it obvious that hopes are unrealistic. The stories of Daniel in the lion's den, the resuscitation of Lazarus, and numerous others, have rightly pointed to the beneficent action of God on behalf of those who received divine favor. Such stories have also tended to engender expectations that combine rather bizarre notions of how God will deliver people from early death or devastating injury. People who engage in high-risk adventures often believe God will deliver them from harm, no matter how dangerous the venture.

The stories of miraculous healings in the Scriptures are another source of hope. They enliven Christian believers' expectations for positive outcomes in the clinical setting. A "miracle" is thought to contradict scientific laws or go beyond human explanations or technological capacities. Medical literature also contains stories about "remarkable recoveries" that defied all clinical explanations.[5] Knowing the inexplicable can and has happened encourages the hope for a miracle against enormous odds.

 

False Hopes and Technical Uncertainty.

Another encouragement to hope is in the uncertainty of the medical data. Probable outcomes are by no means certain. The book One in a Million[6] recounts the author's experience with his wife, Jackie. She had a severe stroke that left her in a coma. Physicians said her chances for recovery were "one in a million." Six weeks after her medical trauma, her husband, Harry, filed papers for Court permission to disconnect her ventilatory support system. The Judge took the petition under advisement. During the delay to decide the issue, Jackie recovered consciousness. A friend from high-school days visited her in the hospital, took her by the hand and called her by a nickname. She opened her eyes and spoke.

Stories like that of Jackie tend to enforce exaggerated expectations in the Intensive Care Unit (ICU). But should it? Likely, six weeks was not long enough a trial period to discern the long-term consequences to her from the stroke she experienced. Thus the petition to stop treatment was likely both premature and ill-advised. But the positive outcome will encourage any number of people to expect such outcomes even years after the bad news is rather settled. In the case of Hugh Finn, for instance, family still hoped for his recovery well into the fourth year of his extensive brain damage.

 

False Hopes and High Technology.

Another factor in false hope is the extraordinarily high level of expectations on the part of the American public regarding medical science. There is a secular equivalent of religious hope. Hybris gets mixed with physical pain resulting in a grand complaint to the universe or anger against God that some cosmic injustice in the form of disease or disability has invaded one's life. Americans do not take defeat easily or as a matter of course--it is always someone else's fault and physicians are responsible to fix or correct it. A failure to correct the problem simply exacerbates the anger which may well be directed at the physician or health care team. Or, the family; or one's self; or God, the ultimate fixer.

 

Christian Hope In Three Modes

Christian hope has importance in discussions about clinical ethics at three important levels. First is the pursuit of a near-term goal of healing; second, the pursuit of long-term goals of new medical breakthroughs; and, third, the transcendent vision of life beyond mortal existence. All three dimensions need to be borne in mind and brought into focus when dealing with hope and healing in extremis, that is, when there seems no reasonable or medical reason to expect the patient to recover health.

Life-threatening illness has its own way of generating false hope, of course. The threat or fear of death has a way of concentrating the mind. The short-term goal becomes the hope for restoration of function or other goals of medicine.[7] In this framework, the hope may be based on a realistic assessment of prospects for positive medical outcomes. Or, it may be based on denials of the progress of the disease, the impact on the physiological functions of the human body, and the poor outcomes that are almost certainly, that is, are probably,[8] going to take place. The combination of religious hopes for miraculous intervention plus the tendency to deny bad news often creates the mindset for hoping in spite of all evidence to the contrary.

One reality check for Christian believers is to recognize that God has never promised that all diseases would be cured in this life. Jesus often refused to perform miraculous healings. And when Paul spoke of the absence of disease or a body of perfection, he was speaking of the afterlife (cf. I Cor. 15). The end or goal of human life is not perfection of the mortal body, but perfection in God. People are mortal and thus destined to die. The body is to return to the dust from which it came (Gen. 3:16).

Even so, there are two senses in which God has promised the curing of disease. One is in the progress made possible in a divine-human covenant that discovers and makes available cures for many of the maladies that afflict the human family. The second is in the eschatological future in which God makes all things new. A Christian perspective holds these two in tension as partners in our vision of the possible and the future promised by God.

The prospect for cure is consistent with Jesus' promise that we would do "greater works than these" (John 14:12). His comment was apparently an allusion to his miracles of healing which so inspired and enlivened the hopes of the disciples. Jesus seems to anticipate the far more awe-inspiring things that would be accomplished by those who come after him.

A great deal of that promise has been realized through medical science. Amazing breakthroughs in the treatment of disease have taken place that simply stagger the imagination. Polio, smallpox, the Plague, tuberculosis--the list could go on and on with the impressive victories of science over the diseases that maim our bodies and claim our lives for premature death.[9] It is not impious to say that these are "greater" miracles than Jesus ever did. He cured many people, but modern science has cured its millions. Jesus pointed the way toward what could be achieved when people of faith apply their creative energies to problems once thought overwhelming and unconquerable. Such breakthroughs in medical science seem ample evidence of the relation of hope to human healing. First, we can affirm the relation of science and religion as a covenant of faith and hope. Second, medical science in general can be seen as a human enterprise in the pursuit of the future of God.

But nowhere does the Scripture promise that all diseases or limitations will be cured. There is an element of nature that is both unfathomable and unconquerable for the human mind. No matter how clever the human manipulations of nature or how incredible the new insights that might be discovered, nature will not entirely bow to human know-how. There are things that people will never know or be able to do and that includes how to conquer certain diseases. The occasional outbreak of Ebola and Marburg viruses reminds us of what is apparently an extensive variety in the expression and forms of disease-inducing viruses. They also remind us of death by means or sources that are not yet obvious. There are challenges awaiting every new generation of medical scientists.

Furthermore, not everyone will be cured of disease. Some will die even from diseases over which science typically has mastery. People still die when medical specialists are baffled as to why. At times, there is simply no apparent medical or physiological reason to explain why a person dies, just as some people get well under circumstances that defy explanation.

 

Futile Treatment and Hoping for a Miracle.

From a Christian faith perspective we can say two things about the hope for miracle. First, it is entirely understandable that such hopes surround our dying loved ones. Second, the hope for miracle may be terribly misguided and groundless. There is a point at which the hope for miracle becomes a false hope, a hope against hope without any grounding in reasonable expectation.

The stories are all too numerous in the clinical context. People require sustaining interventions that are terribly costly in financial, personal and human terms, but of little if any benefit to the patient in medical terms. The social, personal and economic "costs" associated with stories like those of Karen Quinlan, Nancy Cruzan, Sue DeGrella and Hugh Finn (and thousands of others in similar circumstances in U.S. health facilities) are simply incalculable. The problem is that such interventions yield no benefits beyond whatever emotional values there may be to people who insist on their way for reasons that seem entirely eccentric to health care professionals.

Physicians speak of such cases as futile treatment, or medical intervention that either offers no physiological benefit or creates more burdens than benefits for the patient.[10] Regardless of what is done, the patient is not going to recover. Physiologial or neurological function will not be restored. [11] Family members may insist on treatment, however, based on false hopes for patient recovery. Paul Ramsey called it "hoping on in 'faith' when all hope is gone."[12] Such false hopes take a variety of forms.

One type of false hope is for a medical breakthrough in the near future that will benefit the patient. "What if they find a cure in the next few days?" is often heard in such contexts, as it was in deliberations about Hugh Finn. In cases where the patient is already moribund (about to die) or terminal (likely will die in six months), however, even a breakthrough announced tomorrow will likely be of no benefit to this patient. Some patients who are ill are beyond the prospects of healing. Multiple organ failure or the devastating impact on the brain may make all such expressions of hope or "faith in God for a miracle" a matter of hoping in nothing but hope.

Such "rescue religion" fosters a hope that feeds upon itself.[13] Those who are dying of AIDS may have no hope of healing in their mortal bodies. The disease may be so advanced that even a breakthrough that promises miracle cures or the discovery of a vaccine that promises to prevent this dread disease may come too late to do the dying any good.

Religious piety may also generate another type of false hope. Some people of faith believe it an absolute duty to sustain "life" without regard to cost or other considerations. They may hope for a miracle. Or, they may see the suffering as a test from God. Another form of hope is that the patient must be sustained until God brings death. Anything short of "doing everything we can" to prevent death is viewed as "playing God." Regardless of the particular expression, hope is seen as integral to one's fidelity to God or vital to being a person of faith.

Helga Wanglie, for instance, was an 87 year-old retired school teacher in Minnesota who was diagnosed as being in a persistent vegetative state. Her husband insisted on full code for Helga, however, and for maintaining her with every means possible. Physicians were unanimous in their assessment of the futility of such care. Even so, Mr. Wanglie insisted that his desire for sustaining her was a matter of religious faith. He embraced the notion of the sanctity of life as an article of faith and thus wanted her maintained as long as technologically possible. He believed strongly that only God should determine the time of death.

Two problems are noticeable from a Christian perspective. One is whether the Christian hope can be so reduced to a biological minimum; the other is whether there is not a serious error at stake in confusing hopes for healing with a transcendent hope. The ultimate hope for people of faith is rooted in transcendence. Their life in God is not to come to an end, but their life on earth may be limited to a short future. The hope for the afterlife is an important reason people of faith do not lapse into the false hope that absolutizes mortal existence. As the Apostle Paul put it, "if for this life only we have hope, we are of all people most to be pitied" (I Cor. 15:19). The Christian hope is not for the cure of all diseases or that every person will be restored to health, but that we will be brought to completion in God's own eternity.

A strong faith in the afterlife is one of the primary reasons certain patients refuse medical treatments when the prognosis is so bleak. They do not see the issue as one of lacking either hope or faith. They see it as a matter of a hope that sustains them during the dying process. The goal of living in faith cannot be reduced to a long life or even "just a few more days of life," while we sustain the impulses of faith and hope. If that were the case, Jesus' life fell far short of what God promises. Jesus died when he was thirty-three. He would have chosen to live a safer way than confronting and challenging the authorities had a long life been his goal. The reason for living is more important for Christians than how long we live.

 

Hope and the Future of Healing.

Perhaps the most important dimension to the Christian hope is related to the quest for new cures and new medical breakthroughs. Christian eschatology is a way of intending and pursuing the future based on the promises of God. Christians have experienced the downpayment on what is yet to come. They do not simply wait for the future of God's blessing, but actively work toward its realization. The future is open and not closed; it is malleable, not static. Thus planning and hard work are basic to hoping and intending the future. Christians are builders of the very kingdom for which they wait.[14]

Hope energizes the human search for cures. Centuries of medical science have brought about an extensive array of therapeutic interventions. Hope is the ground and reason for any medical science at all. Such projects are not pursued in vain, but with the promise that many good results will come from the process of trial and error.

We can thus say with reasonable assurance that many people will be cured of AIDS. Such confidence is based on the promised future of God. AIDS will someday be looked upon as the disease that wasted and killed millions but does so no more. It will occupy a place in memory and history much like that of smallpox and polio. All these killed their millions but no more. Now there are no tears, no death from such dread diseases of the past.

Thus, the "miracle" of a "cure" is a matter of perspective. Those who have never had polio can thank God for the vaccine that "cured" them from that paralyzing condition before they were afflicted. Prevention is a proleptic cure; a cure before the disease is contracted.

 

Clarifying The Nature And Focus Of Hope

Theologians and ethicists thus may play a vital role in clarifying the nature of Christian hope and its relation to the clinical context. The place to begin may be to note that hope has a variety of expressions. Just which hope becomes realistic or promised of God is important as the relation of hope to healing is considered.

For those who are already moribund, or well-advanced in the dying process, there is only the hope of eternity, not the hope for bodily cure, regardless of the medical breakthroughs in the very near future. The body has already begun its irreversible dying. Seldom is dying a matter of there being only one source of illness that is the problem. The body and mind are overwhelmed, and medical science is and will remain powerless to intervene except to make the dying comfortable. That comfort takes the form of the relief of pain and the presence of persons who are important to the dying. That significant others are present fulfills the hope that we shall not be abandoned in our dying--that our importance to the living transcends our infirmity and uselessness. The loss of the ability to reciprocate should not presage the loss of our value to others. The dying person's hope is also that others shall not have to waste away in similar manner. Their prayer is not only for themselves but for the well-being of the other. The hope is that the cures that do not benefit this one will nonetheless benefit others who are yet to come this way. Every grandparent wants their grandchildren not to have to face the relentless assault of disease that has claimed so many. One woman, dying an ugly death from the ravages of cancer said to her pastor that she wished she could take all the pain of the world with her so that no one else would ever have to know what she had experienced.

 

Specialist Knowledge and Medical Indications.

The role of the medical specialist is crucial in assisting families to avoid false hope in the ICU. Solid medical data are basic to knowing that hoping for a cure is little more than wishful thinking. Families are understandably anxious about loved ones who are near death or who have experienced severe medical trauma. They cling to every word of the physician listening for some hint that recovery may be possible. The problem for the physician is a tension between providing comfort and the ethics of truth-telling. The need to confront the family openly and honestly about the bad news is underscored at this point. The temptation may be to offer consolation by holding out some hope in the face of the bad news. The family needs to be informed with solid medical data that leaves no room for wondering how the physician assesses the patient's condition.

Further, the medical staff needs to be consistent in communications with family. If any staff person, whether resident, student, or consultant, wavers or adopts a "comfort" posture refusing to deal with the bad news, division and/or confusion will be generated in the family group. False hopes will thus be generated by someone on the medical team itself.

Family members of patients in persistent vegetative state, for instance, may strongly deny the tragic state of the brain. If they happen also to embrace notions of the sanctity of life and death as an absolute evil they may be convinced that everything possible should be done. The very appearance of open eyes and eye movement convinces the one who wants to believe that the patient has some degree of consciousness. The hope that recovery is still possible becomes virtually unshakable. Certain members of Hugh Finn's family, for instance, were just certain that Hugh recognized them during a visit to his room. Denial often takes the form of wishful thinking which, in turn, requires very little evidence to be sustained.

Getting unanimity among professionals can also be a problem. Disagreements may be provoked by different readings of the medical indicators. Physicians are also subject to the beliefs and values commitments that object to the very notion of futility. Their "optimism" contributes to false hopes or the illusion of good prospects for recovery.

An 82 year-old nun admitted to hospital with myocardial infarction. A long-time friend and Sister brought along a lengthy statement of the nun's wishes not to have aggressive treatment. She had lived a long and full life. She was now eager and ready to go to be with the Lord. She wanted a peaceful death unhindered by aggressive interventions. The Attending indicated on her chart that there was to be no renal dialysis. She was to be allowed to die without aggressive treatment.

But a specialist called to review the case disagreed. He felt the issue was not entirely clear and that the nun's written statement did not settle the matter. He strongly insisted that renal dialysis would give a totally different picture! In a fashion nurses called intimidating, he proceeded to order the placement of the shunt to proceed with dialysis. The nun died before the procedure could be initiated. Her heart simply could not take the additional trauma.

 

Futility and the Faithful Family.

A second major source of conflict arises from within the Faithful Family. Certain members of the patient's family may be the ones pushing the type "faith" that is adamantly opposed to discontinuing treatment for a patient in spite of the nearness of death. A seventy-seven year-old female nursing home resident was presented to a local hospital. Her diagnosis included urinary tract infection and left lower lobe pneumonia. Her symptoms included cough, congestion, low-grade fever, and wheezing. She had a history of severe dementia, Alzheimer's, hypertension, cerebrovascular accident, pulmonary embolus, multiple hospitalizations for urinary tract infections, pneumonia, and chronic renal failure.

At the family's insistence, the patient was placed on full code. She was treated aggressively for fourteen days which included tube feedings, renal interventions, and pleural effusion for respiratory distress. Even after she went into multisystem organ failure (brain, heart, lungs), the family still insisted on full code.

A consult with the Ethics Committee was requested by the medical staff. The physicians were attempting to convince the family of the futility of continued aggressive treatment. The husband finally decided for a DNR (Do Not Resuscitate) order, which the daughters reluctantly accepted.

Two weeks later, difficult interactions erupted between the physicians and family. Physicians felt strongly that continued high-tech care in the Intensive Care Unit was medically and morally unjustifiable. The family agreed to Hospice Care. Medications, gastric tube feedings and comfort measures were continued until the patient expired.

The crisis in medical care for this patient was a spiritual and ethical matter. But the problem arose more from the family than the patient. The physicians were unanimous in believing the case involved futile care. Nothing could be done medically that would have any reasonable assurance of providing medical benefits for the patient.

Jonsen, Siegler & Winslade[15] speak of this dynamic as a "contextual factor." The crisis comes not from disagreement about the clinical data, nor from an assessment of quality of life factors, nor even from patient preferences. Analyzing the case from these three areas is quite clean ethically. The conflict emerged with the demands of the family for Full Code. Their demand was to "do everything possible," whether or not it seemed to clinicians as either medically or ethically mandated. Ethically, there is no obligation to provide aggressive treatment for a moribund patient. The "family" in this case, of course, was the immediate family of husband and daughters, a relatively small group of people. The larger the "family," the more complicated and difficult decision making may become. The simple reason is that the larger the group, the more likely a considerable difference of opinion regarding appropriate or necessary care will be found. Many of the most controversial cases in medical ethics have been prompted by political action groups that attempt to become surrogate decision makers for patients, especially when they disagree with decisions.

In the case of Hugh Finn, for instance, Hugh's family of origin was the first to oppose Michelle's plan to disconnect feeding tubes; then the Governor of Virginia took up the issue as did a Virginia legislator. Their interventions profoundly deepened the tragedy in this case and complicated the severe burden carried by his wife and children. Such actions were ethically problematic in the extreme. The courts rightly rejected their petitions to reverse Michelle's decision. True hope won out in the end over the false hopes that were prolonging a tragedy few wanted to accept.

 

 

Complicating the relation of hope to health care decisions is a multi-layered complex of interrelated mythologies. A myth is a powerful assumption that affects behavior and attitudes. The myth may contribute to misguided actions based on false premises. But a myth also captures a truth about common human experience and religious insights. The false hopes and actions happen when a nugget of truth becomes an absolute norm. Absolutizing a partial truth is a fantasy or heresy that contradicts Christian theological commitments. At least five myths can be isolated that contribute to the creation of false hopes in the clinical context and thus greatly complicate the task of providing appropriate medical care while safeguarding important faith convictions.

 

Myth of death as an ultimate evil.

This powerful notion finds expression in religion as well as popular folklore and medicine. Physicians often interpret the commitment to do no harm as requiring the prevention of death which is an evil. A further and more far reaching corollary is that medical science has a moral mandate to eradicate death. The latter is seldom expressed but everywhere practiced. The ultimate medical breakthrough would be the elimination of death. And the technology to do so is being sought through research in the laboratories of chemists and genetic engineers.

There is no Christian mandate for science to eliminate death. Nor is there much reason to believe that it will. But if death were to be eliminated, humanity would be most miserable. The success of science would be the undoing of quality human life and earthly existence as we know it, and a denial of our created being in God. If the grief of death is difficult to bear, think of the burden the world would bear if there were no death. What if earth were now populated with all the people that were ever born?

The impact upon resources would be a horror too great to bear. Death has its rightful place in God's scheme of things as every religion attests. Painful as it may be, death is a created good. God has built death into the cycle of life. Medical science and religion will do well to team their resources to dispel the myth of death as an ultimate evil, which is a totally secular perspective. There are solid biblical grounds for accepting the fact of the necessary and rightful place of death in the cycle and symbiotic relationship of an ecological existence.

 

Myth of the sanctity of life.

The second myth is that of the sanctity of life, most often associated with the right-to-life movement but found strongly in the justifications given for aggressive but futile treatment. If it is not death that is feared, it is "life" that is revered. The Missouri Courts framed their refusal to allow the disconnect of Nancy Cruzan in terms of the "duty to preserve life." There was a horrifying prospect that Nancy would be kept "alive" for the next three decades simply by administering nutrition and hydration. The Court showed no awareness of the multiple ways in which "life" was being denied by the singular and simplistic focus on vital signs.

This reductionistic notion of life is an abstraction from meaningful or humanized living. We settle for so little in seeking so much. We reduce the person to the vital signs and worship at the altar of a biological idolatry. One's life does not consist in the tenacity or presence of biological functions, to paraphrase Jesus, but in the capacity and will to enter relationships responsibly and rightly to serve and enjoy God, our Creator and Redeemer. The Apostle Paul spoke of meaningful life in terms of his ability to serve the living Christ (Phil 1:21). Life is a gift with which to live the abundant life . The Greek in which Jesus spoke distinguished bios from zoe--biology from the fulfilling, abundant life. That distinction is in sad need of rediscovery and implementation. To reaffirm the biblical grounds of Christian perspectives on human life would help to dispel the false hopes that permeate the ICU.

 

Myth of technological wizardry.

Jacques Ellul has decried our reliance on technique and technology to the diminishment of our own humanity.[16] The world of high-tech medicine is a case in point. When the fear of death is wed to the sanctity of life, technology presents itself as the savior of humanity. Every human ill can be resolved at the altar of technological wizardry and humanity is fulfilled by the mastery of technique. So we die attached to machines waiting for the god of technological mastery to show its omnipotence and work another miracle.

Technology has its place and has been rightly and strongly affirmed by Christian theologians as one way of dealing with preventable tragedies and premature death.[17] But that valuable service has been absolutized and distorted to the level of idolatry. Technology has come to master the mind that made it, and demand loyalties to an extent usually reserved only for God. The Christian ethical task for all the medical enterprises is to maintain mastery over the technology employed for the human good.

 

Myth of capitalism and the financial imperative.

Few things motivate Americans quite so much as the fear of socialism or the desire for wealth. It is cloaked in the rhetoric of the great American dream or the hope for the accumulation of wealth far beyond our personal needs. The free market system is touted as the vehicle and tool for our entrepreneurial skills and economic salvation. The goal of riches provides justification for most any legal or quasi-legal method for obtaining wealth. Even medicine has become afflicted with the malady of materialism.

Medicine was once thought of as the noble profession based on a calling to a merciful and beneficent service. But it is now often perceived as the quickest route to riches. Medical students are now motivated more by the thought of wealth and prestige than of serving people in medical need. The entire medical system seems infected with the virus of the professional entrepreneur--medicine has become big business dominated by people motivated by profits rather than committed to patient care. To the degree that capitalism wins the affections of the system, medicine will lose its soul to the Faustian bargain.

The resistance of physicians to accommodate the dying process may be traceable to economic interests. Technologies imposed interminably on the dying are sources of revenue and there are numerous technologies that may be applied. Disconnecting the machine or employing less exotic technologies reduces the revenue. One wit decried the advent of DRGs (diagnostic related groupings) as meaning "Da Revenues Gone!" What clever insight into one of the dynamics of medicine become the marketplace. Our metaphors and myths are powerful determinants of human action.

 

Myth of miracles.

The mythology of miracle is a final powerful dynamic leading to false hopes in the ICU. There is a widespread fascination about angels and miracles on the current scene. I share that religious tradition to a certain degree, but I have seen it so perverted that critical questions about the place and function of miracle seem appropriate and necessary. There is a lot of bad religion that peddles perversity instead of truth and distorts faith and fidelity as belief in the incredible and unreasonable. The medieval jingle was "the more preposterous the belief, the more pious to believe." That notion seems in full vogue in contemporary America. A bogus and incredible hope often pervades the atmosphere of the ICU. It provides strength and resilience to those who wait on the dying as well as those who minister to their ailments. The downside is that the maximalist care it insists upon escalates costs and denies the inevitable. Even for people like William Bartling, a man dying of five different lethal diseases, such hope insisted on aggressive treatment. And the parents of 13 year-old Teresa Hamilton succeeded in forcing the hospital to allow them to take her home convinced that she is only resting and would enjoy a full recovery.[18] She had been pronounced brain dead. She was a severe diabetic who showed no neural activity nor any blood flow to the brain from successive brain scans. Such hope would require that we use all medical technology at our disposal to treat those overwhelmed by AIDS or anencephalics with severe respiratory distress. [19] False hopes are wed to the technological mandate in a desperate, but futile "hope" for a miracle. As Stanley Hauerwas puts it, such an expectation is neither realistic nor helpful.[20]

Theological and ethical reflection is needed to provide a more solid grounding for Christian hope and its correlative desires and aspirations. Christians do not hope just for a few more days on terra firma but for a life in the eternity of God the Creator-Redeemer. As the Apostle Paul put it strongly: "if for this life only we have hoped in Christ, we are of all people most to be pitied" (I Cor. 15:19). Our hope is for eternal life, not just a bit more temporal life. Miracles of curing and resuscitation are important but they do not displace the greatest miracle of all, that of living in God's eternity. That faith has great importance in the ICU. We do not strive or die as those who have no faith. We know that death is not only inevitable but finally necessary and desirable.

There is a point in the dying process that even aggressive interventions cannot succeed in restoring strength and health. The brain dead are dead. We can say confidently that there will be no miracle cure no matter how fervent our prayers or wonderful the technology. Christians should not legitimate turning the ICU into a place in which we hope against hope, or engage in a fingers-crossed fantasy of wishful thinking. That journey into "never-never land" where there is no death and loved ones go on forever is neither biblical nor Christian. Denial has succeeded when hope springs unrealistically eternal and sophisticated technology is employed in the name of hope, or rationalized as being "medically indicated" or "medically appropriate."[21]

To be sure, hope has its place and is a necessary ingredient in patient recovery. Stories of wonderful recoveries should be given opportunity by providing an ample window for testing the possibilities. But beginning a treatment does not require a resolve never to quit. False hopes get refracted through the lens of denial and become the central model by which all desperate cases are treated.

This interpretation of the mythology of hope and its relation to "miracle medicine" is supported by a survey of physicians as to their attitudes toward futile treatment. Fully 20 percent of all physicians in three major medical centers in Texas indicated that the threshold of futility is 0 percent. In other words, futility would obtain only if truly a 0 chance of success for intervention exists--not one in a thousand or one in a million, but only 0 percent. They argue that the belief in medical futility contradicts the principle of beneficence and/or non-maleficence. That attitude is hardly "scientific" but is a combination of questionable religious beliefs, defensive medicine, a denial of death, submission to the technological mandate, and personal styles in medical care.[22]

No neonate would be born damaged enough, no brain would be sufficiently dead, no body would be sufficiently overwhelmed by disease or multiple organ failure to call it quits, to declare further treatment futile and needless. Physicians would labor on, hoping against hope and selling hope to those who wait. Death has its place, but is often feared and fought to the last ounce of energy in the ICU. The role of the shaman and magician blends at times imperceptibly with that of the physician.

To be sure, the concept of futility like that of interpreting the medical data is problematic. Medical indicators may overlap with social values.[23] But futility is also based on careful assessments of particular medical conditions vis a vis the possibility for recovery of function and health. Certain metabolic or physical reactions might be restored even if health cannot be, of course. Such a "thin" definition of therapy leaves the patient in a state of limbo between life and death, heaven and hell where medicine cannot cure but will not let go.

A Kentuckian is now caught in that limbo. He is a victim of the futility vs. "wait for a miracle" debate. A 54 year-old man went into cardiac arrest during an asthma attack. He suffered severe irreversible and extensive brain damage. The attending physician recommended that the ventilator be withdrawn and that a DNR order be placed on the man's chart. Nutrition-hydration would be continued. The Hospital Ethics Committee supported the decision. The patient was then transferred to another attending physician who also supported removing the life support. The state Cabinet for Families and Children, Woods' legal guardian since 1991, then sought permission from the court to withdraw life support based on the recommendation of two attending physicians.

But the decision has been challenged by the guardian ad litem, an attorney appointed by the court to represent the patient's interests. He argues that the state has no authority to substitute its judgment for the patient since there was no statement of his wishes. The attorney fears that withdrawal of treatment would "create the presumption under the law that everyone has to die and you eliminate any kind of miracle recovery in the future."[24]

One would have thought that the fact that "everyone must die" is by now a foregone conclusion. Death has a very high batting average and, in Christian theology, every person is destined to die. The human problem is to decide when it is morally and medically appropriate to battle for an extension of vitality so as to return the patient to optimal function and when such actions manifest both bad faith and false hope. The interjection of "hope for a miracle" when the best medical diagnosis says the brain has deteriorated to the point of no return, is hardly either good medicine, good morals or good public policy.

 

Conclusions

The phenomenon of false hopes surrounding patients who are dying or whose illness cannot be reversed is a disturbing but inevitable part of the clinical setting. Hoping for a miracle when medical science has done its best and the patient is overwhelmed by disease, deepens the economic and personal stresses on the health care system. Such hopes are a combination of many factors ranging from denial to sincere but problematic religious ideation. Medical experts disagreeing among themselves exacerbates the problem.

Medicine thrives on the very hopes it sometimes finds so troubling, however. Hope may provide energy and vision for productive enterprises or it may consume precious resources. While hope steels us from the devastating effects of despair, it also makes us vulnerable to the wasteful and unnecessary. The paradox of living with hope that is both true and false is unavoidable. It belongs to life as homo sapiens.

Both science and religion are challenged to confront and correct bad faith and false hopes. The task is daunting and will never finally be completed. But the problem can be addressed and attempted. Ministers and physicians, through their contacts with families in times of grief and decision-making will discover "teachable moments" when the difference between hopes that help and those that hinder can be discerned. In those moments the demands of faith and the rigors of reason become vital partners. Facing death requires a response of faithful obedience to the God in whose image we have been created. A Christian approach to clinical ethics will require that we not lapse into an idolatry of mortality or the false hopes of wishful thinking.

 


END NOTES:

See V. Frankl, Man's Search for Meaning, rev. ed., trans. Ilse Lasch (New York: Simon and Schuster, 1962).
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J. Moltmann, Theology of Hope, trans. J.W. Leitch (New York: Harper & Row, 1962).
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Cindy H. Rushton, Kathleen Russell, "The Language of Miracles: Ethical Challenges," Pediatric Nursing, Jan-Feb, 1996, 22:1, 65.
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Alexander Pope, An Essay on Criticism, 1.430.
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See, for instance, C. Hirshberg & M.I. Barasch, Remarkable Recovery (New York: Riverhead Books, 1995); H. Benson, Timeless Healing (New York: Simon & Schuster, 1996); and Larry Dossey, Healing Words (San Francisco: Harper, 1993).
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Harry Cole, One in a Million (Boston: Little, Brown & Co., 1990).
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A. Jonsen, M. Siegler, W. Winslade, Clinical Ethics, 4th ed. (New York: McGraw-Hill, 1998), 16 list 7 goals of medicine.
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Probability theory is a type of calculation for making prognoses for outcomes given a particular disease and modalities of intervention. Based on statistical averages, a particular disease can be calculated as having a certain probable outcome.
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Daniel Callahan, "Limiting Health Care for the Old?" The Nation, Aug 15, 1987, suggests a "premature death" is one in which a person has not lived long enough to experience life's prime benefits and opportunities--children, satisfying work and pursuit of intellectual goods, and valued friends. See also his Setting Limits: Medical Goals in an Aging Society (New York: Simon and Schuster, 1987).
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See Joanne Lynn and James Childress, "Must Patients always be Given Food and water?" Hastings Center Report, 13:5 (Oct. 1983).
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See Clinical Ethics, 23; and L. Schneiderman, N. Jecker & A. Jonsen, "Medical Futility:Its Meaning and Ethical Implications," Annals of Internal Medicine, 112:949-54 (1990), who speak of two types of futility: quantitative, which refers to probability that medical intervention will have benefit is extremely small--less than 1 in 100 chance; and qualitative when there is extremely poor quality of life associated with medical intervention. The burdens imposed by intervention may outweigh any possible benefits.
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Paul Ramsey, Fabricated Man: The Ethics of Genetic Control (New Haven: Yale University, 1970), 29.
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R.B. Conners and M.J. Smith, "Religious Insistence on Medical Treatment," HCR, 26:4 (1996), 28.
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See Moltmann, Theology of Hope, 337; and The Church in the Power of the Spirit, trans. Margaret Kohl (Harper & Row, 1977), 376f.
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Clinical Ethics, ch. 4. [ Return to text ]

Jacques Ellul, To Will and To Do, trans. C. Edward Hopkin (Philadelphia: Pilgrim Press, 1969), esp. ch. 11.
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Cf. Callahan. [ Return to text ]

Hospital Ethics, May/June, 1994, 3. [ Return to text ]

Hospital Ethics, May/June, 1994, 2. [ Return to text ]

Stanley Hauerwas, Naming the Silences: God, Medicine, and the Problem of Suffering (Grand Rapids: Eerdmans, 1990).
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Jeffrey Swanson & S. Van McCrary, "Doing all they Can: Physicians Who Deny Medical Futility," The Journal of Law, Medicine & Ethics, 22:4 (Winter, 1994), 318ff.
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Swanson, 318-326. [ Return to text ]

Ron Cranford & Lawrence Gostin, Law, Medicine & Health Care, 20:4 (Winter, 1992).
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Quoted in The Courier-Journal (Louisville, KY), Mon. April 1, 1996, B-3.
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