What Shall We Do with Norman? (An Experiment in Communal Discernment)
By Curtis W. Freeman
Curtis Freeman is an Associate Professor of Christianity and Philosophy at Houston Baptist University. Since 1991 he has been the Interim Pastor of West End Baptist Church, a congregation in the inner city of Houston, Texas. He also serves on the Bioethics Committee of Memorial Hospital Southwest in Houston. This article was originally published in Christian Bioethics and appears with permission.
Norman was seventy-nine years old and lived alone. He normally kept to himself, but for most of his life he had been actively involved in his church. Norman never married, and he was not close to any of his family. His church family (as he liked to call them) was the only family Norman knew for many years. Norman was always eccentric and usually a little on the cranky side, but it was the faithfulness to his friends that was perhaps Norman`s most enduring and endearing quality.
Norman always enjoyed an active life. He tried to play golf, walk, or jog everyday. One Saturday afternoon while jogging he collapsed in cardiac arrest. By the time the paramedics arrived and stabilized him, he had suffered ischemia from the prolonged CPR. He was taken to the emergency room at a large public hospital where it was determined that he did not meet the criteria of total brain death, and therefore he was not "really dead." Although the neurological damage of his cerebral hemisphere had been sufficient to cause the cessation of its function, his brain stem was still intact. According to hospital policy Norman was placed in CCU where a ventilator was attached to assist his breathing, a nasogastric tube was inserted to provide nutrition, and an intravenous drip was connected to maintain hydration. He was subsequently placed in a geriatric care unit of the hospital.
Norman left no advance directives, and because no immediate family member could be located to act on his behalf the hospital continued to assist his breathing with the ventilator and to provide him with nutrition and hydration. Norman subsequently began to breathe on his without assistance, but his condition remained unchanged. He was in a state of permanent unconsciousness, and his prognosis was grim. Later diagnosis determined that he was in a persistent vegetative state (PVS). He was unable to accept optimal feeding, and he had several persistent infections, although none of them was life-threatening. A long-time friend, an attorney and member of Norman`s church family, applied for and was named as his court appointed guardian. The attorney-friend possessed the legal authority but felt that he lacked the moral authority to make a substituted judgment. He thus turned to the collective wisdom of the church. Among his community of friends he hoped to find discernment and support. In the meantime Norman hovered precariously somewhere near the boundary between life and death.
In one sense there is nothing really unique or unusual about this story. Accounts about people who remain permanently unconscious are common in textbooks, journals, magazines, and newspapers. The issues and arguments have become familiar. But in another sense this story is quite unique and unusual because of who was left to make a decision on Norman`s behalf and how that decision would be made. It was difficult to know just what sort of response to make to Norman, for to me, Norman was not merely a case or a scenario. We were friends, and I was his pastor. I added my voice to others in Norman`s church family as we collectively tried to make sense of his life and his death.
Our relationship to one another and to Norman made a difference in the perspective from which we considered the issues of withdrawing and/or withholding treatment. We were not a group of physicians trying to determine what was the best treatment for this patient; nor were we a hospital ethics committee seeking an impartial viewpoint; nor were we a group of policy-wonks attempting to construct a fair set of guidelines to govern other cases like Norman`s. We were a group of Christian friends searching for affirmations that lay at the heart of our faith and reached to the limits of our existence.
As we have reflected on our role in deciding whether and/or to what extent we could assist in allowing Norman to die, we were deeply troubled by the moral ambiguity of our involvement. We wanted to resist the morally questionable practice of directly causing the death of anyone–especially a friend (and a helpless, noncompetent one at that). This led us as a Christian community to explore the sanctity of life in hopes that it might clear our vision to see the issues at stake and to discern a course to follow. Perhaps our initial expectations were too optimistic, but we found the discussion to be helpful.
One thing we discovered is that our understanding of the sanctity of life has changed. It is no longer an abstract principle that floats timelessly in a world of ideas. As an ethical norm it has come to make sense only within the narrative of a Creator who imbues life with sacredness. The sanctity of life is also a way of seeing things that is rooted in the common stories and the concrete practices which have shaped our shared life in Christ–a shared life that still included Norman. We further realized that the sanctity of life is not finally about life in general. It is ultimately about the sanctity of a particular life; it is about the sanctity of Norman`s life.
Life and Sanctity in Creation
The collective wisdom of our fellowship was that Norman, incompetent though he may have been, was still a member of the human community. Our faith has taught us that human life is sacred and that we are to regard it with respect. It was, then important to consider more closely how the sanctity of Norman`s life was to shape our moral judgments about how to care for him in his dying. As Christians our understanding of the sanctity of life is situated in the story of creation. This story is paradigmatic because it informs our moral judgments, but more importantly because it forms our moral sense of selfhood.1 The story provides the fundamental clues for "learning how to construe life and the world in light of such beliefs and with the images in which they are set forth."2 The first moral task was then to become skilled in the narrative-dependent language so as to interpret and experience our world in terms of that story.3 It was therefore important for us to attend to the narrative practice of construing Norman`s life as appropriate to God. Were we respecting the sanctity of his life that had been entrusted to us?
Life as Donation
The creation narrative of Genesis tells of how the LORD God formed the man from the dust and breathed into his nostrils the breath of life (Gen. 2:7). The Creator also planted a garden in Eden and put the man there (Gen. 2:8). This illuminating story enables us to see that human life and the world we inhabit are not of our own making.4 The Creator is "the Lord and giver of life," and creation is a gift of the life-giving Lord. The gracious creator of Inexhaustible donation is also the eternal Spirit of creative animation. As Nicholas Lash says, "God is given-ness,…and the givenness of God gives life,"5 It is this givenness which lies at the center of our understanding of the sanctity of life.
The appeal to the sanctity of life, however, can easily be distorted by idolatry. The sanctity of life does not mean that we Christians regard life (even human life) to be sacred in itself, and therefore, to be sustained to the bitter end. Such claims to the inherent sacredness of life arise from an idolatrous impulse to worship (or reverence) the creation rather than the Creator (Rom. 1:25). Locating the sanctity of life within the story of creation is a safeguard which guides us to learn that the sacredness of human life depends on the Creator`s act of blessing the goodness of life by simply giving it. Each life is thus sacred because it is a gift bestowed by a gracious Creator. That the gift of life is, as Karl Barth says, a loan suggests our moral responsibility is to learn what it means to hold our existence in trust.6 We wondered what sort of gestures would signify our acknowledgment of God as Creator.
Of course, it is one thing to affirm the sanctity of life as long as the lives we and our loved ones are entrusted with enjoy minimal suffering and require little sacrifice. It is quite another matter to be faithful to the trust of existence when we become chronically ill or (like Norman) helplessly overmastered. It is then not without reason that we should ask whether this obligation to receive life sometimes stretches our moral resources beyond the limit. But even then–perhaps especially then–we "hope against hope" (Rom. 4:18) that we will discover a graciousness at the bottom of life that enables us to receive this life as a gift of the life-giving Lord.
Life as Embodied
When the creator breathed the breath of life into the man "he became a soul" (Gen. 2:7). It does not say that he had a soul. Having a soul is Greek; being a soul is Hebrew. We humans do not have souls; we are souls.7 The corollary is also true. We humans do not have bodies; we are bodies. Although we are not only our bodies, it is only through our bodies that we exist. Thus, we are to understand that the sacredness of life is embodied and that there is no existence apart from the body.8 As Paul Ramsey put the matter, to be a human means to be "an embodied soul or an ensouled body."9
Being "an embodied soul" is displayed in the restless longing for the qualitative difference of a spiritual life that cannot be found in the quantitative sameness of mere biological existence, even in a long and healthy life. The qualitative-quantitative tension in human existence is finally resolved by and fulfilled in the Christian hope of the resurrection of the body (1 Cor. 15:35-37). Being "an ensouled body" is marked by the fact that our existence has a destiny that is inextricably linked to the body. God made us to be embodied historical creatures. Unless our biological history is interrupted by accident or distorted by disease this nature shape moves progressively from birth to death.10 And because the gift of life comes to us only in the course of embodied existence, the sacredness of human life applies in times of sickness as well as health–in our dying as well as our living. Death stands as the final enemy which robs us of that which God declares to be and to be good. Our most basic moral convictions then are to cherish life and to resist death. Thus, we are not to seek the death of ourselves or anyone else.
The embodiedness of existence can be distorted by the opposite extremes of dualism and vitalism. In dualism the body is regarded as something which is alien or foreign to the self from which the true self must be freed. It is precisely this dualistic "Flight from the particular" that was the error of gnosticism.11 The church fathers resisted the gnostic solution of salvation in abstract knowledge. They maintained instead that the message of redemption is located in historical existence. Thus, they developed a theological tradition in which the sacred is known and experienced biologically, i.e., in a body.
Unfortunately, the endless mutations of dualism continue to exert their influence on our understanding of human existence. For example, Daniel Wikler suggests that the definition of death should be changed from total brain death to the "permanent loss of sentience."12 He argues that this revised definition would remove the moral ambiguity of withdrawing and withholding treatments which maintain PVS patients like Norman. Wikler argues that we should be prepared to declare the body to be alive but the patient not to be alive. This proposed criterion, however, separates the death of the self from the body and thus denies the embodiedness of human existence.
Baruch Brody is rightly suspicious of such efforts to pronounce the permanently unconscious patient to be "dead." Before we do so, he suggests it is important to ask whether we are prepared to bury or cremate a body that is still breathing.13 Our moral discomfort at such a thought is exactly what is wrong with the dualistic accounts of human existence which abstract life and death from embodiedness. The Christian account of death remains inextricably linked to the body.
The sacredness of life can also be pushed in the other extreme direction of vitalism which maintains that "the mere presence of a heartbeat, respiration, or brain activity is compelling reason to sustain all efforts to save the [patient`s] life."14 Thus, by vitalistic standards all withholding and withdrawing of treatment is regarded to be morally wrong. The sanctity of the entire natural history of our lives, however, does not necessarily demand that all human life must be preserved at any cost. Indeed, even Karl Barth, who vigorously resisted any form of euthanasia (active or passive) as a violation of the divine command, questioned whether the "artificial prolongation of life does not amount to human arrogance in the opposite direction" of medical fanaticism or human torture.15 There is an important distinction to be maintained between preserving life and prolonging death. Vitalism does not permit this distinction. The difficult matter of moral judgment is the determination of how far we must go in resisting death without becoming vitalists.
Daniel Callahan has argued that medical technology as an ideology has seduced the sanctity of life to the vitalistic extreme so that we must "follow technology wherever it goes so long as it preserves life."16 This seduction supplies the moral force for using technology to keep alive PVS patients like Norman. Callahan contends that PVS patients are dying and that extending their dying by artificial nutrition and hydration is "extraordinary" treatment. Allowing such a death should, therefore, be regarded as an act of omission rather than commission.17 Gilbert Meilaender counters Callahan by arguing that even if feeding a permanently unconscious patient is considered a medical treatment it should be regarded as "ordinary" care, but Meilaender suggests that the more appropriate distinction to be maintained is between acknowledging death (which religious faith allows) and choosing or aiming for it (which Jews and Christians in particular reject). He further asserts that someone in a PVS is not a dying patient but is a severely disabled person.18
Meilaender rightly observes that the distinction in moral parlance between killing and letting die is not always clear.19 Thus, his focus on the agent rather than simply the action (or inaction) is helpful. Moreover, Meilaender may be correct that the distinction between omission and commission as a public policy would eventually collapse and thus prepare the way for the kind of direct killing advocated by the euthanasia movement. It is not clear, however, that society would lack the moral and political will to resist that temptation. Two of Meilaender`s further judgments seem far less clear: (1) that PVS patients like Norman should be regarded as disabled and thus are entitled to continued treatment and (2) that those who withdraw nutrition and hydration are thereby choosing death. Does not Meilaender`s description of PVS as a severe disability stretch the limit of the term? Indeed, we wanted to resist the temptation to regard Norman as a nonperson who could be abandoned, but it did not seem correct to regard him as a disabled patient who was entitled to aggressive medical treatment. For us Norman remained a member of the human community, but it seemed better to describe him as a dying member. Clearly, we did foresee that the withdrawal of nutrition and hydration would (in the absence of a miracle) hasten Norman`s death, but we did not intend to hasten his death. Our intention was to see that Norman was given proper care. Artificial nutrition and hydration no longer seemed to be appropriate ways to care for him.
That we attempted to maintain this distinction between foresight and intention can be clarified in the expectation of our response to the outcome of withdrawing treatment. In the event that the withdrawal of Norman`s treatment hastened his death, it would not be an occasion for rejoicing that our aims were successful. Moreover, were Norman to survive "miraculously" after the removal of his nutrition and hydration we would neither regard our intentions to have been frustrated nor seek another method to secure his death.
Our conclusion (supported by medical judgment) was that Norman was dying. We did not believe that respecting the embodiedness of his life necessarily obligated us to ensure that every measure be taken to sustain his biological existence, nor were we convinced that such a course of treatment was required by the responsibility to care for the life which had been entrusted to us. In fact, we began to suspect that our most stringent duty was to assist Norman to live a different kind of life from the one that we were forcing him to live, but we wondered how Norman would live well while dying.
Life as Vocation
The creation narrative also makes explicit that the giveness of life carries with it the weight of moral responsibility. The creator placed the man in the garden to till and keep it (Gen. 2:15). We are reminded of our creaturehood inasmuch as we respond to the creator`s invitation to become stewards of and participants in the creative process, and we understand that the divine call is to service not to survival. We wondered if it were possible to think of Norman (or anyone else in a PVS) as fulfilling a creaturely vocation in any meaningful sense. We clearly wanted to reject the reduction of vocation to productivity, for we believe that the weak and vulnerable maintain their creaturehood and can fulfill a vocation even when the labor of their lives is not "productive." We thus attempted to resist the temptation to shift the standard from the sanctity of life to the quality of life. To some it might appear that the overriding moral question was "Should we let Norman die?" or "Can we help Norman die well?", but for us the troublesome question became "How can we enable Norman to live well while dying?" We could not immediately discern how (or if) we could assist Norman to answer the Creator`s call to live well.
Moreover, the story makes the divine command even more present in the permission to eat freely in the garden and the prohibition to not eat of one tree, i.e., the tree of the knowledge of good and evil (Gen. 2:16-17). We may wistfully long for a world where there are no dangerous trees, only safe ones.20 That option, however, is not open to us. We inhabit a world where the fabric of our existence is woven together by the choices we make. To be responsible selves is to come to terms with both the freedoms and the limits of our existence.21
The choices we make and the destinies we choose will be filled with promise and fraught with tragedy. Reinhold Niebuhr observed that
Christianity`s view of history is tragic insofar as it recognizes evil as an inevitable concomitant of even the highest spiritual enterprises. It is beyond tragedy inasfar as it does not regard evil as inherent in existence itself but as finally under the dominion of a good God.22
Life and the choices which shape it are necessarily but not ultimately tragic. The sacredness of life presupposes that we are agents entrusted with freedom to answer the Creator`s call. Our destinies are thus shaped by learning to be responsive to and responsible under the divine command. The sanctity of human life demands the exercise of our freedom to follow a vocation that is full of both terrible dangers and wonderful possibilities.
We should be careful, however, not to take the exercise of human freedom to be an intrinsic good. The goodness of moral agency like the goodness of life itself is derivative. It, too, is part of the given. Moreover, this freedom cannot be abstracted from the natural history of our biological existence. Human freedom does not exist for itself. It serves the end of moral responsibility in history under the divine command.
Consequently, the decision whether to withdraw (e.g., nutrition and hydration) and/or withhold (e.g., antibiotics) treatment from Norman was not without moral ambiguity. Some among the community voiced concerns that "We should not keep Norman alive this way" and that "We should let him go because he has suffered long enough." But by so acting to eliminate the suffering we recognized it would also eliminate the sufferer.23 No matter how charitable the intention, it did not go unnoticed that the termination of Norman`s treatment would nonetheless be a morally unhappy act.
Life as Communal
Even after the gracious Creator bestowed the gift of life to the man, there is the declaration, "It is not good that a man should be alone" (Gen. 2:18). So, the Creator determined to make a partner for him. First, he tried the animals, but none was found to be a suitable companion for the man. Then God took a rib from the man and made the woman. We are reminded of the other creation account in which both male and female are made in the image of the Creator (Gen. 1:27), which also suggests that we are not fully human in isolation. It is finally only in community that we find the sacredness in life which God the Creator wills and blesses.
Just as sacredness is not inherent to human life but only as human life is viewed as appropriate to God, it is also not an ontic category within the self but a dialogic notion between the self and others. In relationship with others (and the Other) we encounter the goodness of trust, fidelity, and love which sustain our existence. Even in his present state we were conscious of the uniqueness and sacredness of Norman`s life as we confronted the thought that this life now ending would never come again (Job 14:12-14), but we were still puzzled about our obligations to Norman as a member of the human community.
This communal dimension of the sanctity of life serves as a check against the proclivity toward individualism in decision-making that has created a society of moral strangers. In the absence of advance directives, the current practice suggests that (1) surrogates should make a substituted judgment for an incompetent based on speculation about what the incompetent would choose were he or she competent. Lacking any direct knowledge of either performative or preferential wishes (2) the choice should be made on the basis of what is in the best interest of the incompetent.24 A strict application of the substituted judgment standard fails to appreciate the importance of a communal casuistry that attempts to discern what one should will rather than simply what one would will. As Karl Barth rightly reminded us, because human life belongs to God it was not theologically sufficient to say "Such and such is what Norman would have wanted." We needed to ask whether an action would be consistent with the life of service to God.25
The best interest standard is morally unhelpful in most cases of the permanently unconscious because it is difficult to weigh benefits and burdens.26 How can the beneficial or burdensome aspects of the treatment of PVS patients be meaningfully assessed if they cannot feel pain? If indeed those who permanently lack the capacity for consciousness have no experiential interests, can they be considered to have any interests other than those they had prior to unconsciousness? Those prior future-oriented interests might include what one would want should he or she become permanently unconscious.27
More importantly, the best interest standard privatizes the moral process. As Ezekiel Emanuel has argued, the decision whether to maintain an incompetent patient also depends on the kind of life that members of the community think is good and valuable. He proposes a community-based alternative that is grounded in the notion of "informed community consent" which would grant local communities the ethical and political authority to enact their own concept of the good.28 If adopted, this communal proposal would further fragment the modern vision of health care that is committed to the liberal values of modernity and with it the practice and institutions of medicine. But perhaps it would not be a bad thing to ask what it might mean to practice medicine so as to fit better with the convictions of Orthodox Jews, Catholic Christians, or Seventh Day Adventists in addition to the beliefs of pluralists and secularists. From such a communal perspective the question is not whether it is ever permissible to sacrifice the life of a noncompetent human. Rather, it is a matter of asking how we might do so without yielding to the utilitarian temptation.29
Were we respecting the sanctity of Norman`s life with which we had been entrusted? It was the consensus of Norman`s church family that if indeed he was a dying member of the human community the NG tube and IV were merely prolonging his dying. It was our judgment that respecting the sanctity of Norman`s life thus permitted the withdrawal of these life sustaining measures. The sanctity of life helped us to understand the general direction of our moral judgment, and it suggested that such extraordinary measures were not necessarily an appropriate way to care for a member of the human community. However, it was still unclear how we were best to care for our friend and brother Norman.
The sanctity of life alone was thus unhelpful in a decisive sense because it was not a matter of whether Norman`s life was sacred but rather how the sanctity of this life was best to be honored.30 Moreover, the narrative exposition of the donational, biological, vocational, and communal dimensions of human existence clarified our identification of Norman as a member of the community of God`s creation. However, our most determinative relationship with Norman remained unillumined by the sanctity of life. Specifically, it did not account for his identity as a member of the community of God`s new creation which we witnesses in his Christian baptism on 9 May 1926. We decided to pursue the question of Norman`s claims on us and our duties toward him as a baptized Christian and fellow church member.
Living and Dying as Christians
In view of the neopaganism of mid-twentieth-century western culture, Emil Brunner asked,
What does the fact of having been baptized mean for the large number of contemporary people who do not know and do not even care to know whether they have been baptized?31
By reminding the baptized that they were no longer to serve the interests of self, tribe, or nation Brunner called the pagan commitments of Christians into question and urged them to consider what it might mean to live faithfully under the Lordship of Christ. Brunner`s question is worth repeating to Christians who are being asked to serve the ends of modern medicine and a pluralistic public policy. It was worth repeating to Norman`s church family for it was in baptism that he became a member of the community. What did the fact of having been baptized mean for Norman who did not know whether or not he had been baptized, and what did the fact of his baptism mean for us as a community that must remember it.? The moral question at issue may be stated even more directly. How could we as a community of discernment assist Norman to live with integrity the life which he owned in baptism? Could we enable our Christian brother to live well as he was dying?
Assisting By Discernment
As we struggled to decide what to do about Norman our baptized brother and to understand our role as a community of discernment several questions required further clarification: (1) What is discernment?, (2) Who possesses the gift of discernment?, and (3) When is discernment rightly exercised?
Discernment is a gift of the Holy Spirit (1 Cor. 12:10) which enables Christians to seek "the mind of the Lord" (1 Cor. 2:14-16). Discernment is the skill of knowing the direction of the gospel when one is faced with conflictual choices. It thus enables those who live under the Lordship of Christ and are guided by the leadership of the Spirit to determine the moral trajectory of one`s baptismal pledge in a given instance. A recent commentator defines discernment as a "process of sorting out some matter of controversy, seeking a solution to some problem, resolving some conflict, or finding an answer to some question."32 The gift of discernment is related to the virtue of prudence, namely, that the end of human action and the means of achieving it are in keeping with reasons.33 Discernment, however, seeks to maintain the end and means of moral action in keeping with the gospel. As such, discernment is more than practical rationality. It is a matter of evangelical casuistry. Discernment is not a naturally endowed trait, nor is it a habitually acquired skill. It is a spiritually formed gift. But who possesses it?
Discernment is formed and found in the church as a confessional community. Discernment is not a matter of individual intuition; it is a process of social reflection.34 The confessional community becomes a discerning community by virtue of the loosing and binding keys which they have received from Christ the Lord (Mt. 16:18-19). Those who stand together under the Lordship of Christ are authorized to discern through a social process that from which they are liberated and that to which they are obligated. The power of the keys to loose and bind is the proclamation of the gospel which the confession church is authorized to preach.35 thus, the process of discernment is limited to evangelical casuistry, that is, to judgments that follow the ethical direction of the gospel. But when is moral discernment rightly exercised?
The Reformers of the sixteenth century (Calvin, Zwingli, and the Baptists) regarded divinely authorized discernment to be correctly practiced when it followed what they called the "rule of Christ" (Mt. 18:15-18). The rule delineates a series of practical steps that facilitate the social process of discernment.36 Balthasar Hubmaier, an early Baptist, wrote that "the one who is baptized testifies publicly that he has pledged himself to live according to the rule of Christ."37 Hubmaier contended that it is by virtue of this pledge that the baptized submit themselves to the loosing and binding authority of the baptizing community. The process of discernment is also aided by the help of the Holy Spirit (Jn. 20:22-23) who guides the community into truth (Jn. 16:13). Thus, moral discernment which adheres to the pattern of the rule is performed by the community that lives together under the Lordship of Christ and the leadership of the Spirit.
The authorization of a discerning process does not, however, imply divine ratification of every church decision. Discernment can, unfortunately, be wrongly exercised in such a way that is consistent with neither the Lordship of Christ nor the leadership of the Spirit.38 Because moral decision-making within a community can be abused, the rule of Christ is often complemented by what Zwingli called the rule of Paul (1 Cor. 14:26-33). This rule is guided by the conviction that the Spirit`s work is apparent in the free exercise of gifts and in the open process by which all voices of the congregation are heard.39 Congregational consensus is both the goal and the evidence of the rule, and majority vote prevails only as a last resort.40 The "democratic" and "egalitarian" assumptions underlying the spiritual process of discernment attempt to protect the community`s moral judgments from rigid legalism and arbitrary authoritarianism.
In baptism Norman affirmed his solidarity with Christ and his people. He recently reaffirmed that commitment by entrusting his spiritual well-being again to the community. The summer before his heart attack Norman reunited with his church family (after a brief separation) and announced that he had "come back home to die." Perhaps he suspected something might happen to him. We thus regarded it to be our duty as a community of discernment to seek care for our brother which would be consistent, not with a set of universal rules or specific consequences, but with the direction of the gospel in the shared life of discipleship.
Our understanding thus far could be summarized as follows. One, Norman`s condition was irreversible and untreatable. The artificial nutrition and hydration were not therapeutic (since there is no cure for PVS) or palliative (given that he displayed no response to pleasure or pain), nor were the antibiotics effective in the elimination or amelioration of his smoldering infections. We questioned the assumption that aggressive medical treatment was the kind of care Norman needed. Two, the best medical judgment suggested that Norman`s condition was terminal. Perhaps it was not imminently so since his autonomic reflexes were still functioning, but the fact that he stopped eating and could not receive optimal nutrition (even by forced-feeding) was an indication of his dying. By maintaining nutrition and hydration we were only prolonging his dying. Three, our aim was to celebrate life as a great (but not the greatest) good and to resist death as a great (but not the greatest) evil. Nevertheless, when someone is irreversibly in the process of dying (as we believed Norman was) there comes a time when death should no longer be resisted and when it may even by wrong to resist death. We did not wish to violate the responsibility entrusted to us either by deliberately causing or by arrogantly resisting Norman`s death. We came to agree with Paul Ramsey`s policy of always (but only) caring for the dying,41 but we were still puzzled about how best to care for Norman. Four, our motive was not one of humanitarian concern to do the most loving thing or to relieve suffering. Rather, we were motivated out of a covenantal responsibility to assist Norman in living with integrity the life that he owned on 9 May 1926 and which, up until his incompetency, he continued to affirm.42
Living With Integrity
The prevailing wisdom in decisions about the treatment of mentally incapable patients is guided by respect for patient autonomy. Beauchamp and Childress define this principle as the conviction that independent and intentional "actions should not be subjected to controlling constraints by others."43 Although respect for patient self-determination is the first and foremost bioethical principle, they concede that its status is only prima facie and can be overridden by competing moral considerations. In practice, however, the goodness of human existence is too often reduced to the capacity of individuals to act independently and intentionally. Within the ethics of autonomy, noncompetents like Norman retain their moral agency through advance directives or in substituted judgments of surrogates which enact the patient`s stated (or implied) wishes to refuse or to permit specific treatments. These legal instruments enshrine a previous autonomous state that is abstracted from the noncompetent`s biological history and disconnected from a discerning community. The upshot is that by elevating an abstracted account of autonomy other goods are trumped and competing moral voices are effectively silenced.44
In one of the most definitive and influential statements of the Baptist religion, E.Y. Mullins suggested that the historical significance of Baptists is an emphasis on the competency of the soul. By defining this notion as soul competency under God, not as human self-sufficiency, he attempted to nuance the doctrine. Mullins believed the benefits of soul competency were evident both exclusively and inclusively. Soul competency "excludes all human interference…and every form of religion by proxy." It also includes a constellation of correlative Baptist distinctives (axioms), e.g., the priesthood of the believer and the separation of church and state. For Mullins, "religion is a personal matter between the soul and God."45 It is at this point that the Baptist heritage seems to connect with medical ethics. In an attempt to encourage the practice of advance directives, one chaplain writes that "because Baptists have long honored the principles of soul competency and the priesthood of the believer, we can deeply appreciate the principle of self-determination."46
This apparent connection between the Baptist heritage and medical ethics is, however, a weak one. Harold Bloom argues convincingly that Mullins invented the notion of soul competency by drawing from the language of economic self-sufficiency and Emersonian self-reliance which was then superimposed on the Baptist theme of Christian liberty.47 This distorted Baptist account of human agency is akin to the familiar principle of patient autonomy in part because both draw from the secular well of the Enlightenment, but soul competency was too limited to guide our decision about Norman.
Soul competency as a motto for Baptists was meant to ensure the capacity for an unmediated and unassailable experience with God. It was not successful, however, in establishing an ecclesiological account of corporate experience, as is attested by the curious absence of a chapter on the church in Mullins` magisterial work, The Christian Religion In Its Doctrinal Expression.48 Soul competency simply was not robust enough to sustain the link between individual freedom and communal discernment which were mutually necessary for our deliberation about what to do with Norman. The final word of both soul competency and autonomy is that my life and my decision are my own, for the moral trajectory runs from the competent soul (or autonomous self) to God rather than the other direction, while the witness of the gospel is that our lives are not our own (1 Cor. 6:19-20). As James McClendon rightly observes, the doctrine of soul competency was framed too much in terms of the rugged individualism of pre-New Deal America to do justice to the shared discipleship earlier Baptists had embraced."49
Even in a PVS Norman remained a part of the community he joined in baptism, and he was still responsible for living his life in keeping with that baptismal pledge. Our role was to support and sustain him in those decisions which we understood to be consistent with faithful discipleship. Even though the community possessed the authority to take measures of corrective discipline against one of its members, such action was not to be pursued without hearing the voice of the member in question. Thus, an attempt was made to listen to Norman in the matter. What would he have to say to us about what we should do? Several members of the church knew that Norman had expressed a wish not to have his life artificially maintained by "machines." This declaration was decidedly ambiguous, but even a recently drafted living will which included references to such artificial devices as feeding tubes and respirators would have been an insufficient basis for a decision. A single statement could not be abstracted from the life of the friend that we had grown to know well in the sixty-seven years since his baptism.50
The issue for us was neither the absolute end of arbitrary patient autonomy (i.e., to do what Norman wanted) nor the unjust means of coercive communal authority (i.e., to disregard his expressed wishes). Rather, we were struggling with how to assist Norman to live with integrity. Our decision would consider the character of Norman`s whole life and the convictions that shaped him. Was his present condition consistent with the integrity of the life in Christ as Norman had lived it?51 The consensus of the community was that extending Norman`s existence in a PVS by means of artificial nutrition and hydration was not in keeping with his life as we had known him. However, our decision would depend, not only on the integrity of Norman`s character, but on our understanding of fidelity to the Christian narrative enacted in baptism to which Norman pledged himself.
Dying and Rising In Baptism
If we were to discern the moral commitments implied in Norman`s baptism we first needed to consider the meaning of our practice of baptism. James McClendon presents the Baptist practice with great clarity:
Baptists first seek to proclaim the Gospel. When (and only when) hearers, whether our own children or outsiders, respond by confessing faith in Christ as Lord and savior, they are accepted as candidates, immersed in the triune name in the presence of the congregation by the minister, and (in most churches) thereby admitted to membership in the congregation as brothers [or sisters] in Christ.52
Because "baptism is reserved for those who commit themselves to Christ in active faith,"53 the Baptist heritage seeks to give witness to a believers` church constituted by voluntary membership.54 What did the fact of Norman`s baptism signify for us as a community that must remember it in light of the gospel?
It was a sign of his solidarity with the crucified one. In baptism the believer is buried with Christ into his death (Rom. 6:3). The seventeenth-century Baptist Leonard Busher wrote that to be baptized is to be "dipped for dead in water."55 Norman`s baptism was the declaration of his death. The significance of his baptism was neither as an imitative reenactment of a death like Christ nor as a mediated union with him. The watery grave of baptism signified that Norman died with Christ.56 It was the enactment of a solemn promise to trust God even in the darkness of death. From that point forward Norman`s destiny was inescapably linked to the crucified one, who experienced and opened up the transcendence and transformation of a God that was hidden in the midst of suffering. Although we were still troubled by questions about the biological nature of death, we were reassured by our theological construal of it. A decision to withdraw life sustaining measures from Norman would not indicate our abandonment of him to the hopelessness of the grave. Rather, it would manifest the conviction enacted in baptism, that is, the hope of finding God, as Jesus did, in the contradictions of suffering and death.57
Norman`s baptism was also a sign of his union with the risen one. Just as the baptized are united with the Lord in his death, so are they raised with him through faith in the power of God (Rom. 6:4-5; Col. 2:12). Death has been swallowed up in the victory of Christ`s resurrection as the old order with its powers passed away (1 Cor. 8:54; Col. 2:15), and the believer is risen with Christ to participate in the new creation which was inaugurated with the resurrection (2 Cor. 5:17). Therefore, it anyone is "in Christ" qualitative and comparative standards no longer count in the estimate of persons as together believers participate in the new people of God (2 Cor. 5:16-17; Eph. 2:15; Gal. 3:28).58 Baptism, so understood, is a political act. It was with a conviction grounded in the social reality of Christ`s resurrection that we still recognized Norman as our brother, and it was with a faith rooted in this shared hope that we remained confident of God`s power to raise up our brother Norman.
In baptism Norman owned God`s act in Christ, and in baptism his life was claimed by God.59 The sacrament of baptism signified the fact that God returned Norman`s life, not to him, but to the community of the new creation in which we were participants and of which we were stewards. Thus, it was through baptism that we began to understand what it meant to receive the giftedness of Norman`s life. Just as the story of creation required us to recognize that creaturely existence is itself a gift to the human community, so the narrative of the new creation obligated us to acknowledge Norman`s life as a gift to the community of the baptized. He was buried with Christ in death, but he was raised to walk in new life (Rom. 6:4). Unless (and until) God gives a new life through the Holy Spirit there is nothing to receive, but because in the sacrament of baptism we acknowledged God`s gift we were thereby entrusted with the responsibility to nurture and care for this life. And just as the goodness of human existence is enriched by answering the Creator`s call, so Christian existence is fulfilled by following the Master`s invitation (Mt. 4:19). The sanctity of life so construed was not finally about receiving life in general. It was about receiving a particular life. It was about receiving Norman`s life into the community of the new creation.
Our responsibility for Norman was to assist him in living the life he embraced in baptism–a life which included a destiny that was conformed to the crucified and the risen one. That was not the destiny we chose for Norman; it was the destiny he owned. We recognized with Norman that our lives are not our own to be guided by autonomy and liberty. Our existence as Christians serves the good ends of a more determinative community–God`s new creation of which baptism is a sign.
We would not unjustly override Norman`s freedom, nor would we directly intend his death. But it was clear to us that prolonging his dying existence in a PVS served no end that would not finally be realized in his biological death. We thus reached the consensus as a community that continuing nutrition and hydration were not appropriate ways of assisting our dying friend and brother to live the life he owned in baptism. We therefore reached the conclusion that all life sustaining (death prolonging) care should be withdrawn. In taking such action we were not abandoning Norman, rather were assisting him to claim the destiny he had already chosen–to die and rise with Christ. Moreover, we were confident that if death were to result (foreseen though unintended) even that tragedy was gain in light of the gospel (Phil. 1:21).
Patience and Hope in Community
In the dedication of The Rule and Exercise of Holy Dying Jeremy Taylor addressed the Earl of Carbery, "My Lord, it is a great art to dye well."60 Taylor wrote his book for Lady Carbery, but she died, as did Taylor`s own wife, before it was completed. The title, however, is somewhat misleading because the rules and exercises are not addressed to the dying but to the living. One cannot learn to die well on the death-bed; one must understand holy dying as a continuation of holy living. The sick and dying person can only exercise the virtues, practice the skills, and exhibit the graces that already have been acquired. Taylor proposes three precepts that guide those who seek to cultivate the virtues necessary for dying well: (1) always expect death, (2) every day prepare for death, and above all else (3) live under the discipline of the cross.61 The rules and exercises contained in Holy Dying share the aim of habituating the virtues of patience, faith, repentance, charity, and justice that enable one to die well.
Taylor`s rules for a holy death presuppose an imminent and protracted dying, and thus they seem to preclude a sudden and unexpected event like the case of Norman. More troubling still is his assertion that the moral strength of the virtues is unavailable to "fools, children, distracted persons, lethargical, apoplectical, or any ways senseless and incapable of humane and reasonable acts." The deaths of incompetently unvirtuous persons may be assisted "only by prayers."62
Thinking collectively about Norman has challenged our assumptions about what it means to live and die well. We concurred with Taylor`s judgment that a good death is to be a holy death and that one learns to die well as one acquires the virtues to live well. Indeed, it is quite possible that the rancorous public debate on questions related to the definition of death, the criteria of personhood, and the right to die has obscured what may be the most important moral issue at stake.
Specifically, we believe the definition of a good death does not depend merely on maintaining the dignity of honoring autonomous decisions but rather on possessing the strength of acting from virtuous character. We contend against Taylor, however, that a good death is not reserved for virtuous individuals but rather for those who share life together in communities of virtue that can remember life and construe death (even the dying of noncompetents) with meaning and purpose. We were thus led to ask the question, what kind of people must we be to give witness to the fact that we welcome life as the good gift and accept death as the mysterious work of the gracious Creator?63 Our answer, quite obviously, was that we must be a community of virtue, but further questions still required our attention. Which virtues would enable us to assist Norman in dying well? How should the moral shape of our character be enacted?
Patience To Wait
Above all we remained committed not to abandon Norman in his dying, but the process of waiting has tested the limits of our patience. We waited daily by seeing that his affairs were in order and by simply being present with him in the hospital. To watch and pray seemed simple but appropriate gestures to convey the character of our faith. As a consequence we learned something about the uniquely Christian shape to the virtue of patience. Whereas the moral history of courage can be traced to success in soldiering, the Christian account of patience arises out of the witness of martyrdom. A noble death for the Greeks and Romans followed the pattern of a courageous death in battle. A good death for the Christian imitated the example of the martyr`s constancy. Courage maintains moral strength when one must be prepared to face danger, especially the danger of death in warfare; patience provides sustaining grace when one must be ready to suffer for the gospel. The end of Christian patience is endurance, whereas the end of civil courage is aggression. We thus understood patience as tied to the baptismal pledge, that is, the readiness to die for Christ and one another (Rom. 6:3-4; Jn. 15:13; 1 Jn. 3:16). Christian patience is about suffering and enduring hardship for others.64
We found this virtue wonderfully illustrated in a story. Henri Nouwen tells of resigning his teaching position at Harvard Divinity School to become the priest of Daybreak, "a community where mentally handicapped people and their assistants try to live together in the spirit of the Beatitudes." There his understanding of life was transformed by his friendship with a young man named Adam. Each morning Nouwen spent an hour and a half medicating, bathing, shaving, dressing, and feeding Adam. What Nouwen has learned from Adam is "that what makes us human is our heart, the center of our being, where God has hidden trust, hope, and love."
On one occasion, when Adam`s parents came to visit, Nouwen asked what Adam brought to their home. His father answered, "He brought us peace." Nouwen reflects:
I know that he is right. After months of being with Adam, I am discovering in myself an inner quiet that I did not know before. Adam is one of the most broken persons among us, but without any doubt our strongest bond. Because of Adam there is always someone home; because of Adam there is a quiet rhythm in the house; because of Adam there are moments of silence; because of Adam there are always words of affection and tenderness; because of Adam there is patience and endurance; because of Adam there are smiles and tears visible to all; because of Adam there is always time and space for forgiveness and healing. Yes, because of Adam there is peace among us.65
Nouwen`s insight provides a hint of how to receive the stranger, and in so doing to discover a friendship that the ethics of autonomy cannot provide or understand. It is not a society of moral strangers based on the equality of personhood, for those like Adam and Norman are not persons by such standards. It is rather a community rooted in grace, where the givenness of others enriches us with the life-giving Spirit. Because of Norman there is peace among us.
Hope Against Hope
For Norman to die well he needed a community that possessed the patience to wait, but a good death also required a people whose witness remained hopeful in the face of what medical judgment regarded as futility. We found such a hope displayed in Bunyan`s classic story The Pilgrim`s Progress. After a long and arduous journey Christian and Hopeful see the Celestial City at a distance. Yet, between them and the City, there is one last obstacle–the River of Death. It is deep and wide. Its current is swift, and its waters are dark. As Christian and Hopeful stand at the river`s edge, two men with shining garments and glowing faces approach them. The two strangers explain to the travelers that there is no bridge across the river and that all who enter the City must pass through these waters. Christian becomes afraid, and he asks how deep the waters are. The strangers reply, "You shall find it deeper or shallower as you believe in the king of the place." So Christian and Hopeful enter the river. Upon entering, Christian begins to sink. He cries out to his friend Hopeful, "I sink in deep waters; the billows go over my head, all [its] waves go over me." But Hopeful answers back, "Be of good cheer, my brother, I feel the bottom, and it is good."66 As Norman crossed over the dark waters of death it was our duty to give voice to the hopeful witness that we too feel the bedrock on which we stand, namely, the gospel of the crucified and risen Lord.
It seemed clear enough that Norman`s treatment was not of therapeutic benefit to him and that his condition was indeed medically futile, but our concern for Norman was to be a hopeful community to a dying friend. Although no treatment could cure Norman it was still morally relevant to ask about our obligation to care for him and about his claim to a community of friends that would not abandon him in his dying. Our regard for the sanctity of life and our baptismal covenant to live and die as Christians did not obligate us to continue sustaining Norman`s life artificially. There is, after all, "a time to die" (Eccl. 3:2), and we did not want to prolong his dying unnecessarily. Our commitment to Norman and his claim on us was to be a community of care in his dying.
As we tried to understand what it would mean for us to help Norman die well, we searched in the following ways. First, we attempted to be faithful in telling the story which reminded us that our lives and Norman`s were part of a larger pattern that gives a purpose to our lives and our deaths.67 Moreover, we sought insight and illumination from saints and martyrs who display how to live and die well. Finally, and perhaps most important, we pledged to one another (and to Norman) our presence which we have come to believe is God`s way of sustaining us in the face of the tragic. As we followed this path, we hoped to discover what it meant to affirm, not just the sanctity of life generically, but the sanctity of the particular life of someone whom we knew named Norman.
A Concluding and Morally Unhappy Postscript
On 15 December 1993, after Norman`s IV and feeding tube were removed, he was finally placed in a hospice. He died one week later. Norman`s friends and church family were there for the funeral and graveside service. We will miss him very much.
[Author`s Note: I am indebted to Stanley Hauerwas, Allen Verhey, Therese Lysaught, and David Solomon for their careful reading and helpful criticism of an earlier version of this essay.]
1Michael Goldberg, Theology and Narrative: A Critical Introduction (Nashville: Abingdon Press, 1981), 37-38, 176-78; and Goldberg, Jews and Christians: Getting Our Stories Straight (Nashville: Abingdon Press, 1985), 13-19.
2Julian Hartt, Theological Method and Imagination (New York: Seabury Press, 1977), 241.
3George Lindbeck, The Nature of Doctrine (Philadelphia: Westminster Press, 1984), 34.
4Walter Brueggemann, Genesis (Atlanta: John Knox Press, 1982), 40.
5Nicholas Lash, Believing Three Ways in One God (Notre Dame: Notre Dame University Press, 1993), 92.
6Karl Barth, Church Dogmatics III/4, trans. A.T. Mackay, and others (Edinburgh: T. & T. Clark, 1961), 328.
7Hans Walter Wolff, Anthropology of the Old Testament, trans. Margret Kohl (Philadelphia: Fortress Press, 1974), 10.
8H. Wheeler Robinson, "Hebrew Psychology," in The People of the Book, ed. Arthur S. Peake (Oxford: Clarendon Press, 1925), 366.
9Paul Ramsey, The Patient as Person (New Haven: Yale University Press, 1970), xiii.
10Gilbert Meilaender, "Terra es animata, On Having a Life," Hastings Center Report (July-August 1993): 29.
11Rowan Williams, The Wound of Knowledge (Cambridge: Cowley Publications, 1979/1990), 25. Williams` emphasis.
12Daniel Wikler, "Not Dead, Not Dying? Ethical Categories and Persistent Vegetative State," Hastings Center Report (February-March 1988): 44-45.
13Baruch Brody, "Ethical Questions Raised by the Persistent Vegetative Patient," Hastings Center Report (February-March 1988): 34.
14"Standards of Judgment for Treatment of Imperiled Newborns," Hastings Center Report (December 1987): 13. Reprinted in Thomas A. Mappes and Jane S. Zembaty, eds., Biomedical Ethics, 3rd ed. (New York: McGraw-Hill, 1991), 421.
15Karl Barth, Church Dogmatics, III/4,427.
16Daniel Callahan, "The Sanctity of Life Seduced," First Things (April 1994), 14.
17Ibid., 14-15. Callahan supports this contention by pointing out that artificial nutrition and hydration were first developed as a means of helping people overcome the temporary inability to eat or swallow. Moreover, he says that the inability to eat is one of the classical symptoms of a dying body. Callahan`s position seems to be supported by a recent study of endstage cancer patients who were palliated without forced feeding or hydration. See Robert M. McCann and others, "Comfort Care for Terminally Ill Patients," Journal of the American Medical Association 272 (26 October 1994): 1263-66. A recent report on late improvement in consciousness after post-traumatic vegetative state, however, seems to suggest that the diagnosis of PVS is not alone sufficient to describe one as dying. See Nancy L. Childs and Walt N. Mercer, "Brief Report: Late Improvement in Consciousness After Post-Traumatic Vegetative State," The New England Journal of Medicine (4 January 1996: 24-25).
18Gilbert Meilaender, "Response to Daniel Callahan," First Things" (April 1994), 15-17. For a fuller account of Meilaender`s views see his essay "Withdrawing Food and Water," in The Limits of Love (University Park: The Pennsylvania State University Press, 1987), 102-11.
19For a robust discussion of the legal, medical, religious, and philosophical problems associated with the distinction see Bonnie Steinbock and Alasdair Norcross eds., Killing and Letting Die, 2nd ed. (New York: Fordham University Press, 1994).
20Brueggemann, Genesis, 45.
21H. Richard Niebuhr, The Responsible Self (New York: Harper and Row, 1963).
22Reinhold Niebuhr, Beyond Tragedy: Essays on the Christian Interpretation of History, (New York: Charles Scribner`s Sons), x-xi.
23Hauerwas, Suffering Presence (Notre Dame: University of Notre Dame Press, 1986), 24. It may be questioned whether it is appropriate to speak of the "pain" or "suffering" of patients like Norman who exhibit only the autonomic functions of brain stem activity. I am open to the suggestion by Jan Van Eys that suffering is something we impute to others. If he is correct, the statement "Norman has suffered long enough" is not meaningful as a physiological or phenomenological explanation of his condition. What it requires for coherence is a sociological and, finally, theological account which displays what it means to construe Norman`s life and death appropriate to God and the church. This need for a theological account seems to suggest that Christian suffering is not (or should not be) a private experience but rather represents the communal description given by friends who share a common life.
24"Identifying the Key Decisionmaker and Making the Decision," Hastings Center Project Group on the Termination of Treatment, reprinted in Mappes and Zembaty, Biomedical Ethics, 349-50; and Allen E. Buchanan and Dan W. Brock, Deciding For Others: The Ethics of Surrogate Decision Making (New York: Cambridge University Press, 1989), 93-96.
25Karl Barth, Church Dogmatics, III/4, 397ff.
26John D. Arras, "The Severely Demented, Minimally Functional Patient: An Ethical Analysis," in Journal of the American Geriatrics Society 36 (1988): 939-944; reprinted in Mappes and Zembaty, Biomedical Ethics, 351-59.
27Buchanan and Brock, Decided For Others, 126-32.
28Ezekiel J. Emanuel, "A Communal Vision of Care for Incompetent Patients," Hastings Center Report (October-November 1987): 15-20.
29I am quite aware that by suggesting a move away from a uniform model and a move toward a truly pluralistic approach to medicine there will be some communities who will put people to death by virtue of such standards as social worth and quality of life. In the name of community as a principle some lives ironically will be judged as "not worth living." It should go without saying that this type of utilitarianism is precisely what I want to resist, both by argument and embodiment. I simply see no way given my communal premise to rule out the possibility of such a medicine grown cruel. However, in a pluralistic communitarian approach the truth of an alternative community`s medical vision turns on the persuasiveness of their moral display.
30Ronald Dworkin argues that both sides of the current moral debate about euthanasia "agree that life is sacred, [but]…disagree about the source and character of that sacred value and therefore about which decisions respect and which dishonor," in "Life is Sacred. That`s the Easy Part," The New York Times Magazine, 16 May 1993, 36. Dworkin offers an account of the sanctity of life which is rooted, not in the instrumental or subjective (personal) value of human existence, but rather in the intrinsic value of all human life, in Life`s Dominion (New York: Alfred
