Kairos designates "a special moment of time when God visits his people to offer them a unique opportunity for repentance and conversion, for change and decisive action."¹ We have come to such a moment in care for the dying. End-of-life care has emerged from the margins as ripe for change. Studies show the need.² Theologian Paul Tillich encouraged Christians to realize that, although the ministry, death, and resurrection of Jesus Christ is the central kairos of history, there are also other times of challenge and opportunity to which we are called to respond.³ We are now facing such a time in end-of-life care.

Improving our care of the dying will, however, require deep changes in medical culture and organization—and conversion at the personal and interpersonal levels as well. Turning again to the New Testament, we may use the term metanoia to describe this fundamental level of change.⁴ If this propitious time for decisive action is passed over without much more than superficial adjustments, then care of the dying in our society will likely become further subject to scientific and financial interests that override humanistic and religious concerns. A graced time will be spurned and instead of a metanoia that leads more deeply into our humanness and the mystery of life/death, we will follow the current path into greater alienation.

The ethical agenda about death must not be narrowed down to the issues of assisted suicide and euthanasia, but must reflect on the meaning of good care and good death and the goal of making these accessible to all. This essay will show evidence of the seriousness of the problem, describe some organizational innovations to meet it, and consider some of the conflicts between the underlying assumptions of the biomedical model and those of the hospice/palliative care model. This kairos moment is also a time of great upheaval in health care more generally, which is increasingly dominated by a commercial-managerial mentality and by demands from government and private payers to reduce costs. On one hand, issues about end-of-life care are deeply personal and spiritual, and they link closely with our relations to family, loved ones, and God. On the other hand, the same issues have powerful social, cultural, political, and economic roots and branches. Because of this twofold nature, I suggest a Christian feminist perspective—one that takes into account both an ethics of care and an ethics of justice—can assist our moral reflection.

Because care of the dying is a public policy issue in many ways, discussion within religious communities alone is insufficient. Yet care for those who are dying raises ultimate matters of human dignity, social solidarity, and justice, which are theological issues as well. Theologian Gustavo Gutierrez notes that theology, linked to praxis, "fulfills a prophetic function insofar as it interprets historical events with the intention of revealing and proclaiming their profound meaning."⁵ What follows is intended to assist readers to begin to interpret the current kairos and the struggles over care at the end of life. The questions are not just technical and organizational. They are questions about how we are going to support and stand in love and communion with those who are dying and their families. We can begin by acknowledging the Christian basis for care of the dying, which can be appreciated by other religious traditions as well: the person is valued just as he or she is, not because of merit or worthiness or ability to pay, but because of her/his dignity as a human person, as the imago dei, which no disease or injury can erase.

EMERGENCE OF THE ISSUE
The first modern hospice, St. Christopher's in England, was founded in 1967 by Cicely Saunders, a nurse-social worker who became a physician. The goal of hospice was and is to enable dying persons to live until death as fully as possible, recognized as unique persons and having valuable relationships to be treasured. Early hospices were inpatient units that put their emphasis on comfort care and quality of life for patients. A home-like atmosphere was sought, family and children were welcomed, and physical design emphasized light, community, and peace. Teamwork among staff was encouraged, and the usual medical hierarchy was transcended as each brought insight and skills to this new project.⁶

Hospice services in the United States began in 1974 to provide care for people with terminal illnesses. At present, only about 17 percent of deaths occur with hospice care, mostly as care in the home. The majority of deaths take place in hospitals.⁷ Hospice care focuses on relief of pain and discomfort and the meeting of social, emotional, and spiritual needs. To survive financially, hospice organizations worked to achieve reimbursement by Medicare and other insurers. Medicare regulations have standardized hospice care but have also reduced its flexibility.

Palliative care refers to "the comprehensive management of the physical, psychological, social, spiritual and existential needs of patients. It is especially suited to the care of people with incurable, progressive illnesses."⁸ For both hospice and palliative care, the goal is to maintain a good quality of life, even when cure is not possible. Hospice care is palliative care, but because hospice care has been limited by Medicare regulation, palliative care is a broader term. Unfortunately, some people use the term palliative care simply to mean pain management, but this is too narrow a view since improving the quality of life requires attention to other needs as well. Under Medicare regulations, hospice care is open only to those who have a prognosis of six months or less to live, a prognosis hard to determine for those with chronic heart, lung, and neurologic diseases. Even cancer patients, with more predictable illness trajectories, are slow to enter hospice. Palliative care may be needed before the person is able to make the hospice decision.

For the individual patient and loved ones, facing death can be a time of profound suffering, growth, and reconciliation. Relationships, values, life goals, and faith are all tested. The deepest struggles of our humanness rise to the surface at this time. They begin to emerge whenever serious illness is encountered. The presence of these stresses is why palliative care—including symptom control, psychosocial and spiritual support—is now being advocated as part of a continuum of care that begins when life-threatening illness is recognized. In this view, the focus of care should shift progressively as disease advances from life prolongation to comfort care. Because this vision breaks down the old dichotomy of curative treatment and palliative care, significant organizational changes will be needed to implement it.⁹

Research indicates that good quality care at the end of life is not easily achieved within the U.S. health system, long dominated by acute care. A discussion of some of that research follows, as well as description of two institutional innovations aimed at providing better care. Afterwards, I will consider the tensions that arise when a biomedical model of care and an atmosphere of intense competition among health care organizations surround palliative care, with its philosophy rooted in notions of community and spirituality.

RECENT RESEARCH: THE CRITICAL CONDITION OF CARE OF THE DYING
Public interest in favor of physician-assisted suicide is evidence of the fear in the United States of painful and undignified death at the hands of medical science.¹⁰ Such fears are not unfounded. A five-year research study published in 1995 was a milestone in bringing end-of-life issues to the attention of health care professionals. Called the SUPPORT study (Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments), the project looked at over nine thousand adult patients in five U.S. teaching hospitals. Its objective was "to improve end-of-life decision making and reduce the frequency of a mechanically supported, painful, and prolonged process of dying."¹¹ Phase one results showed lack of communication between physicians and patients, failure by physicians to attend to pain, fairly high use of intensive care units for dying patients, lack of awareness or misunderstanding on the part of physicians of patient or family preferences regarding cardiopulmonary resuscitation (CPR), and failure to write necessary Do Not Resuscitate orders.

Phase two of the study introduced interventions designed to inform and facilitate collaborative decision making. Physicians were provided with frequent and reliable prognostic information, and with assistance from specially trained nurses to elicit and document patient and family preferences for treatment. Nurses led discussions with families and patients so that they were well informed and prepared for collaborative decision making with the physician. But even with these interventions, patient-physician communication did not improve. Neither did results in five targeted outcomes—including physician knowledge of patient preferences regarding resuscitation, number of days spent in the Intensive Care Unit, and level of reported pain. The results of the study negated the claim that putting more resources into skilled professional time, such as the nurses' intervention, would bring about improvement.¹²

Though the investigators commended the nurses as "committed, energetic, and highly trained" and as prompt in their reports, they speculated that perhaps using physician leaders, rather than nurses, as implementers of the interventions might have been more effective.¹³ The implications of physician bias against information coming "from below" in the medical hierarchy were not made explicit or explored further. In an editorial commenting on the SUPPORT research, Bernard Lo related the findings to other studies that demonstrate providing information does not change physician behavior. Lo called for changes in the organization and culture of hospitals, and initiative from hospital leaders and respected senior physicians.¹⁴

The conclusion of the SUPPORT investigators was not hopeful:

Providing prognostic information and using nurses to facilitate communication did not succeed. The researchers imply that more demanding carrot-and-stick measures will be needed to prod physicians to change. If effective communication is the basis of good care of the dying,¹⁶ the evidence of the SUPPORT study raises serious doubt about the possibility of such good care without significant change in physician attitudes and practices.

Meanwhile the stakes have been raised by the legalization of physician-assisted suicide (PAS) in Oregon. Good palliative care of the dying is proposed by some, especially those working in hospice, as an alternative to PAS.¹⁷ Even for those who favor the legalization of PAS, quality care of the dying must be in place before physician-assisted suicide is seriously discussed.¹⁸

In 1997 the Institute of Medicine¹⁹ published the results of its own research project on dying, decision-making, and appropriate care. Their committee of twelve experts was asked to assess the state of knowledge about care for those with life-threatening illnesses, to evaluate methods of measuring and assessing aspects of care, to identify factors that obstruct or foster good quality care for the dying, and to propose recommendations.²⁰

The book produced by the committee, entitled Approaching Death: Improving Care at the End of Life, highlighted serious deficiencies in care. Their findings noted these difficulties: (1) too many people suffer needlessly from lack of available pain relief or from the imposition of harmful or ineffective treatments; (2) legal, organizational, and economic obstacles combine to prevent good care; (3) education and training fail to prepare health care professionals to care for the dying; and (4) current knowledge and understanding are insufficient to support evidence-based medicine in end-of-life care, i.e., development of research methods and more research are necessary.²¹

This study, like Bernard Lo's editorial on the SUPPORT research, treaded lightly on the issue of physician responsibility for these deficiencies and called instead for institutional and organizational change. The chair of the committee expressed optimism about biomedical science's better understanding of the pathophysiology of physical and emotional symptoms and the development of new approaches to prevent and ameliorate them.²² While symptom control is an integral part of good care, I suggest below that improved care of the dying requires something broader and deeper than the biomedical model.

INSTITUTIONAL INNOVATIONS
Two recent innovations respond to the call for organizational changes to facilitate better care at the end of life: one deals with reimbursement and the other with hospital policies. Both illustrate ways in which care of the dying has been overlooked.

First the Health Care Financing Administration (HCFA) in 1996 approved a new diagnosis code for palliative care for the dying. But a report in early 1998 indicated that the code is infrequently used because it is not yet reimbursable.²³ HCFA also considered the feasibility of a new Diagnosis Related Grouping (DRG) that would provide reimbursement of such care from Medicare. HCFA's present intention is that the code be used as a secondary diagnosis only. The patient's medical problem is to be listed first and the DRG assignment—and reimbursement—flows from that. Grouping all palliative care cases into a new DRG does not seem appropriate to them since the charges of the cases are so varied. Response from the public has so far confirmed this direction. HCFA will continue to study the data, and they note that it will take some time for use of the code to spread within the medical community.²⁴

Hospice physician, and former president of the American Academy of Hospice and Palliative Care Physicians, Ira Byock believes that the experimental code was misconceived because it fails to define palliative care.²⁵ The code is generally assigned when the person is not expected to survive and has a DNR order, "regardless of the services provided, the stated goals of care, or whether a clear plan of care even exists."²⁶ On one hand the problem is that palliative care may be wrongly understood as almost no care; on the other hand overly aggressive care may also be inappropriate. Paul Rousseau, chair of the ethics committee of the same Academy, points to the latter misconception: "Some physicians think aggressive radiation to the esophagus is palliative even though the patient can't swallow, can't eat, and is violently ill."²⁷

The establishment of a palliative care code for hospitals without reimbursement does not change much. Even if the reimbursement question could be worked out, the code would not be a panacea. Not all persons die or should die in hospitals. Many people wish to die at home. Home hospice care facilitates this, but requires a supportive family member or friend's full-time presence in the home. Many frail elderly are in long term care institutions precisely because there is no one who can provide home care and no financial ability to pay for it. These patients would best be served by good palliative care in the nursing home, a goal achievable through staff training and cooperation with hospice programs.²⁸

A second institutional innovation is the placement of a standard for "end-of-life care" in acute care hospitals by the Joint Commission on Accreditation of Healthcare Organizations (JCAHO), which is now included within its accrediting process. Accreditors look for evidence of policies and procedures regarding matters such as advance directives, pain management, withholding CPR, and responding to the social, emotional, spiritual, and cultural concerns of the patient and family. Interviews, policies and procedures, and patient medical records are evidence of fulfillment of the standards.²⁹ The measure is an advance, bringing care of the dying to the attention of accreditors and hence to administrators. But it must be acknowledged that in the culture of health care today, characterized by competition for "customers," pressure to prove the value of services, and anxiety about protecting the organization from litigation, "documentation" can become an end in itself.³⁰

In summary, the issue of care at the end of life has long been marginalized. Important studies and organizational innovations have brought the issue to the attention of health care professionals and organizations. Hospice professionals have stressed the need for attention to end-of-life care for two decades but have often gone unheeded in the wider medical world. Will the issue be taken up now with a seriousness that will impact the whole of our health care system? Will quality care of the dying be included in the continuum of care? To grasp the depth of the difficulties of institutional change, an examination of the assumptions of each model (the hospice/palliative care model and the biomedical model) is required.

CONTRASTING ASSUMPTIONS
The founding leader of hospice, Cicely Saunders, was a deeply religious woman who inspired followers with her view of the work as "a spiritual calling."³¹ The founding spirit of St. Christopher's hospice was Christian, but Saunders encouraged a broadly ecumenical approach. Saunders had an inclusive view of spirituality that was integrated with her concern for each patient's physical well being. Her view allowed a difference between religion and spirituality:

The goal of hospice was not proselytizing or evangelism. One of the principles of St. Christopher's was "that dying people must find peace and be found by God, quietly, in their own way, without being in any way subjected to pressure from others, however well-meant."³³ Staff were welcome who did not share Christian faith. They were expected to join in making hospice a place of healing for patients, families, and staff.³⁴

Saunders' interest in the emotional and spiritual dimensions of dying did not prejudice her against biomedical science. Yet her vision went beyond science. She saw the innovations of St. Christopher's "as the introduction of the academic model of research and teaching linked with care. The aim to look to scientific foundations of such care was matched to a Christian calling and commission that were complementary, not contradictory—and complementary too to the general medical services with which it had to be integrated."³⁵

Cicely Saunders believed that what was learned in hospice had to be spread to the whole medical world. The staff at St. Christopher's was not simply introducing new techniques. They were presenting an alternative model for care of the terminally ill. The hospice/palliative care model affirms life and accepts death as a normal process within the human condition. Death is not a failure but a life passage. The biomedical model, in contrast, focuses on cure—the eradication of disease. In this perspective, which still dominates medical education in the United States, disease and death are the enemies to be overcome. The biomedical model is a scientific model that is rationalistic and analytical and which discounts whatever is subjective or immeasurable. As a result it trusts laboratory tests and other verifiable evidence more than it does patient descriptions, and it disparages what cannot be explained scientifically.³⁶ The palliative care model trusts the wisdom of the person and her/his experience of the body. It wants to hear the perspective of the patient and the family caregiver. It is open to alternative therapies, such as massage, therapeutic touch, and music therapy. Mind-body-spirit connections are respected, even if not yet completely understood. The biomedical model treats the body as an object of investigation, as a mechanism whose workings are more and more intensively subdivided and studied. Conceptualizing the body as mechanism, which began with Descartes, makes continual narrowing of investigation the logical choice. This model leads to patients being treated as the sites of diseases and perceived as systems and organs, and the latter broken down even more finely into molecules to be studied.³⁷ This may partially explain why pain has received so little attention. From a narrow physiological perspective, pain is only a symptom, and not the concern of the clinician whose expertise is to diagnose and treat the underlying disease.³⁸

Envisioning the body as a mechanism distorts clinical relationships, making them less than human: "Patients often complain that they have been dealt with by their health care providers or institutions in a dehumanized fashion: as if they were but a disease entity, or a piece of meat to be prodded, punctured, and otherwise ignored. This practice is rooted not simply in personal insensitivities but, again, in a metaphysical model." The model of a machine does not encourage human sensitivity and care for the person. It requires a kind of schizophrenic attention that moves back and forth from the machine-body to its owner.³⁹

There is no real need in this model to know patients as persons with diverse values and complex social relationships. The science of medicine has let the person slip from view, let alone the person's context. This is not the result of a single physician's insensitivity; rather, it springs from "a model that has shaped our understanding of disease, our modes of professional training, diagnosis, and treatment, even the offices and hospitals in which medicine is practiced."⁴⁰

The drive to understand chemical and physical processes has led to amazingly effective advances in diagnosis and therapy, and the next generation of these is under development as a result of new genetic knowledge. Unfortunately, however, this drive has narrowed attention from the suffering person to the "diseased biological system."⁴¹ In the hospice/palliative care model the body is not a mechanism but a self-in-relation. The self is embodied and exists within a web of relationships. This can be seen in the attunement of hospice personnel to patients' assessment of pain and discomfort and unresolved tensions in relationships. It is also evident in the care given to loved ones as they struggle with the emotional weight of the coming loss. Patients are not encountered as medical conditions but as human beings embedded in social relationships and struggling with their aspirations, values, and fears.

Feminist ethicists are particularly sensitive to the view of the body as mechanism, as object of manipulation. In medical ethics, feminists have studied medicine's takeover of pregnancy and birth, which began in the nineteenth century.⁴² General practitioners and the new obstetricians argued that they possessed scientific knowledge not accessible to others. Still today, medical practitioners see biomedical knowledge as the basis of their authority.⁴³ But are those with biomedical knowledge really the only authorities when it comes to birth or death or even health?

If one sees medicine as being "in charge" of health, then one might be reluctant to define health too broadly lest medicine become too intrusive.⁴⁴ But the view changes if one thinks of health as the responsibility of many actors, beginning with each person and the communities to which they belong, not only medical doctors and health care professionals. In this framework the person is subject, not just object. So too with death: it spreads its responsibility more broadly, not just to doctors and nurses, but also to the patient as the center, and to family, friends, spiritual advisors, worship communities, social workers, neighbors, volunteers. The difficulty is that medicine, because of its authoritative position in Western society, too readily gains the upper hand and becomes the purveyor of meaning. As H. Tristram Engelhardt Jr. points out, "Medicine medicalizes reality. It creates a world. It translates sets of problems into its own terms. Medicine molds the ways in which the world of experience takes shape; it conditions reality for us."⁴⁵ This can have a debilitating effect by professionalizing responses to human problems. Medicine's professionalization can lead to the de-skilling of the population as experts are called in to manage human experiences.⁴⁶ Churches, synagogues, and mosques can counter this de-skilling by educating and supporting families, friends, and neighbors to minister to the terminally and chronically ill and to their loved ones in the time of bereavement.

When it comes to death, not only particular physicians, but also medical science is itself unskilled. Medical science does not have an integrated understanding of the place of death within the goals of medicine.⁴⁷ If every biological deficiency is conceptualized as correctable, death represents ultimate failure, a mistake, an error. In those cases in which death is foreseen as inevitable—such patients deemed "hopelessly ill"—care for these persons is no longer viewed as the task of the science of medicine because these patients are beyond its help.⁴⁸ Daniel Callahan illustrates:

Such a request sounds simple and obvious. Yet a recent study of fifty of the best-selling medical textbooks showed that attention to end-of-life care is still lacking.⁵⁰

CONTINUING TENSION
What direction will palliative care take now that death is being brought to the attention of biomedical science and health care executives? The technological imperative of medical care has fought death until now—often to the extreme detriment of the dying person. If the dying process itself becomes the target for scientific perfection, palliative care may risk becoming more and more intensive, seeking ever new opportunities for scientific control, now in the name of a good death. For palliative care to become technology driven would destroy its real meaning. Yet for some time it has been clear that the usual distinctions between "aggressive" and "palliative" care do not always hold:

The quality care that is needed in a particular case may not fit the rigid rules for reimbursement that have been devised for hospice care. The financial questions must be addressed and room made for flexibility and innovation. For example, the Medicare Hospice Benefit pays on a capitated, per diem payment structure, one that does not allow for case mix adjustments.⁵² For some hospices this means more expensive but sometimes necessary pain relief may not be affordable, and the goals of hospice care are undermined.

A challenging area is the creation of hospital palliative care teams.⁵³ In the present climate, government and business payers demand savings on services and length of time receiving care. Productivity pressures on doctors, nurses, and therapists make it difficult or impossible for professionals to make emotional connection with patients and families. Organizational cultures are likely to clash as palliative care is exposed to hospital culture "where palliative care units and programmes are assimilated in the organization and habits of acute health care, or where the existing system sponsors such programmes itself, there is a risk that conventional ideas and ways of organizing services will blunt the innovating spirit and constrict the flexibility which is essential to effective work. All the evidence suggests that this problem of accommodation between traditional and fresh approaches will become a major issue of policy and practice in the next decade, and that it will require a variety of new organizational arrangements to resolve it."⁵⁴

Educational efforts are essential, since hospital cultures usually reflect the biomedical model—death as enemy and the body as mechanism. The hospice/palliative care model, which sees death as life passage with potential for new growth, needs champions from administration, medicine, and nursing, who will advocate for it in hospital settings and help establish new standards to change practice patterns.

Significant improvement will require a change of vision on the part of health care providers and, for some, a change of heart. A terminally ill person is not a pathological condition that is "failing to respond" to the health care professional's expertise. He or she is an embodied spiritual self with a complex history of relationships, values, and aspirations. The ill person's need for reconciliation and companionship in the face of the unknown can touch the humanity of the caregivers (both family and professionals) at a deep level, awakening them to the exquisite value of the human person and reminding them that this final life passage is part of the human condition each of us bears.

Health care organizations, perhaps especially religiously based ones, have to find ways to reverence the dying experience. Making sure that people get appropriate care is the base line of this reverencing; setting up a palliative care program, including psychosocial and pastoral care, is a means to do this.

Reimbursement issues are difficult, but some, like Joanne Lynn and others, are attempting to find ways to overcome them.⁵⁵

A CHRISTIAN FEMINIST PERSPECTIVE
The religious community is a natural place to raise the issue of care of the dying and to link it to community, spirituality, and justice. Western secular culture too often presents a mature human being (depicted normatively as male) as essentially a monad, who may make connections with others, but who also may toss off those connections in the name of self-interest, since relatedness with others is optional. In contrast to this individualistic view, Christian theology fosters community and covenant. Christian feminists see relationality as central to human well-being. That does not mean, however, that any relationships will do. Relationships must be just: respectful and non-exploitative. Indeed, justice itself may be depicted as right relations.⁵⁶ Hence, abusive, patronizing, or condescending relationships that deny the full humanity of the other fail the test. Relationships will not always be reciprocal because of the inequalities that age, illness, and disabilities bring with them, but they still can demonstrate respect and compassion. The actual work of giving care may be asymmetrical, but in the context of relatedness "the asymmetry counts differently."⁵⁷

Just relationships are central in life, and also in death. The end of life is a time for enhancing these relationships, deepening the bonds, forgiving one another, and giving thanks for all the gifts shared.⁵⁸ To make time and space available so that relationships are attended to is an integral part of care at the end of life. While family and friend relationships will take priority, the relationship of outside caregivers to the patient and to family caregivers can be supportive and life-giving, especially when it is marked by compassion, faithfulness, and practical wisdom.

The patient and family should remain subjects, rather than objects, of care. The one who is terminally ill has much to share with those who remain behind. Arthur Frank uses the term the "pedagogy of suffering" to describe the capacity of the ill to teach others.⁵⁹ Both patients and loved ones have knowledge and wisdom to bring to the challenges of changing relationships. They have "situated knowledge"—knowledge flowing from familiarity with the particulars of the context, history, circumstances, and personalities involved. Their knowledge is not universalizable, but real nonetheless and of unique value.⁶⁰

The approach described thus far is reliant to some extent on a feminist "ethics of care," an ethics that assumes human connectedness, is contextual rather than abstract, and gives room for the affective realm in the reasoning process.⁶¹ Barbara Andolsen rightly objects when some oppose an "ethics of care" to the so-called "ethics of justice," a more abstract style of moral reasoning in which an impartial moral agent assesses the moral weight of conflicting claims.⁶² She objects because such a version of justice ethics is procedural at most and too thin to connote substantive justice.

The philosophy of hospice care is rooted in an ethics of care. The feminist ethics I am suggesting wants to add a strong sense of justice that will produce a more critical and socially engaged ethics of care. In an ethics for end-of-life care, attention needs to be given to the concrete social realities of the ill and their families: more research is needed regarding availability and access to good care and the burdens placed on family caregivers by the current system. An ethics of care and an ethics of substantive justice must be joined. Thus the encouragement of virtue and character among professional caregivers has to be complemented by serious attention to the social inequities of care and caregiving for women, minority groups, and the uninsured.⁶³ Other social ethical issues that need attention include power relations in health care organizations and their effects on care, organizational accountability for peaceful death, appropriate reimbursement, and our culture's fear of death, which so marginalizes the dying and their families.

Feminist ethicists think that care, especially in health care, should be cherished and fostered. However, they note that an ethics of care (especially in the care v. justice paradigm) runs the risk of being so identified with women that it is perilous in a patriarchal society,⁶⁴ where care can be reduced to an innate female character trait that lets males escape its burdens.⁶⁵ "Realizing how difficult it is to be a truly caring person, all too many men will be willing to confess, as they did during Mill's time and later, that women are more virtuous than men; and therefore that it is up to women to create and maintain human community, to weave personal relationships, to do all of society's emotional work."⁶⁶ Both women and men must object to this division of labor because it denies men's full humanity and responsibility. The burdens placed on women as caregivers need examination—too many women are under great stress and at risk of developing serious health problems themselves. The Christian churches have fostered this imbalance by their idealization of mothers as the nurturers of the world.⁶⁷ Creative imagination from faith communities, workplaces, and other groups will be required to invent new social means for sharing this care equitably among men and women in ways that make the burden more bearable.

A critical feminist ethic will encourage a "hermeneutic of suspicion" about medicine's approach to end-of-life care. Such an ethic would be critical of the role of financial interests in care of the dying—the production of revenue through unnecessary treatments or the savings gained by skimping on appropriate services or by avoiding financial responsibility for complex cases.

Taking such an ethical stance will enable us to name as sinful the inadequate care of the dying—care in which patients' pain is not attended to, they are subjected to treatments without regard for their wishes or denied appropriate treatment, they and their families are left confused, or supportive services are not made available. Such unjust situations do not come about by chance. There is human responsibility behind them: individual, organizational, and institutional. Such inadequate care is a failure to respect persons, but from a theological point of view, the failure goes even deeper. We meet God in one another, but especially in those who suffer. There we meet the "silent, inexpressible mystery of God." We love God through loving our neighbor; because God abides in us there is a unity of love of neighbor and love of God.⁶⁸ When we (individually, corporately, or as a society) do not provide compassionate care and support to the dying, we fail our neighbor and God.

STRATEGIES
In closing, I want to suggest a few strategies for meeting this kairos moment in the health care setting, the community, and the political arena. The strategies address needs for education and problems of financing and reimbursement.

EDUCATION
Health care providers need the facts about treatment options and pain control, as well as about the psychosocial and spiritual needs of patients and family caregivers. The SUPPORT study showed, however, that information alone is not sufficient. Affective knowledge is just as important. It is achieved through reflection and discussion of participants' attitudes about death, the attitudes and traits needed by caregivers to play a supportive role at the end of life, and of ways to achieve these in the health care setting. Providing caregivers opportunities to work with experienced mentors would be ideal. Follow up must be built into performance evaluations to assure that continuing education units are translated into practice. Conditions of participation for physicians in Medicare fee-for-service should include standards for pain management and end of life care.⁶⁹ Health care organizations and physician practices must have people committed to improving care of the dying and effectively helping their organizations change.⁷⁰

In the community we should educate future patients and caregivers, as well as enlist and educate congregations. Community education needs to prepare people to take part in life passage, both as dying person and as companion. The hurried explanation about advance directives at hospital admission is worse than inadequate and comes at the wrong time. The education must be broader and come before a crisis. The end of life must be prepared for in a way that evokes reflection on life passage as a natural event and a time of appreciation, growth, and reconciliation. To see this passage not just as an individual or family event, but also as a community experience, would move us forward. The process of dying is not just a personal path. It is a communal road, down which all of us will travel.

Are neighbors, friends, and associates from faith communities and work places willing to help? Fear of death is a powerful force that prevents people from becoming involved with patients with fatal illnesses and their families. Here, faith communities can take an active role in preparing people for the first steps of visiting the sick and being present for the ill and the family. Work places might also be centers for mobilizing friends and associates to help. They can link up with pastoral personnel from religious communities who can teach the necessary skills and lead sensitive discussions. In these discussions about death, people's deepest convictions, beliefs, and doubts emerge and participants begin to think about how they are living their lives now, what has the most meaning for them, and how acknowledgment of the contingency of life can lead to living more deeply in the present. Special effort should be made to draw men into service to the ill because, at present, the joys and sorrows of caregiving are primarily borne by women. Faith communities can draw together men with hospice experience, male chaplains, and men who have served as caregivers, to lead the way for others.⁷¹

FINANCING
In the public arena, we should develop new financing and reimbursement mechanisms. These structures lag behind current knowledge about good care at the end of life and the need for continuity of care. Financing mechanisms need revision, for example, to deal with the case mix a hospice has and to provide care for those whose trajectory of illness does not fit current reimbursement regulations. Reimbursement issues are complex and can quickly become political. But organizations will not be able to provide palliative care for the long haul or meet the demographic challenge of aging baby boomers unless appropriate financing is available. The National Hospice and Palliative Care Organization (formerly NHO), the American Hospital Association, the Catholic Health Association, and newer organizations like Last Acts and the Center to Improve Care of the Dying provide forums in which experience can be shared and communicated to the Health Care Financing Administration. Their activities will be greatly enhanced if community education prepares the political will for change.

CONCLUSION
Care of the dying is in urgent need of change. It has been shown that the scientific and technological advances of medicine can prolong miserable deaths and increase suffering of patients and families. The Health Care Financing Administration and the Joint Commission on Accreditation of Healthcare Organizations have begun to attend to end-of-life care. Palliative care approaches rest on different assumptions than those that ground the biomedical model, making clinical change difficult. A Christian feminist perspective advances the discussion by calling attention to relationality as central to human well-being. Relationships in care of the dying must be both caring and just. This will require institutional and community support, concern for the vulnerable, and more equitable sharing of responsibility. There is much work to be done: educating providers, managers, communities, and congregations; changing institutions; enacting financial reforms. Each reader can play a positive role during this kairos moment. It is a time for repentance, conversion, and decisive action that will build community in life as well as in death.

NOTES
1. In 1985 Christian leaders, midst the escalating brutality of the apartheid system in South Africa, issued the "Kairos Document," from which this definition is taken. See The Kairos Document: Challenge to the Church, 2nd rev. ed. (Grand Rapids: Eerdmans, 1986), 33.

2. See the report by the Committee on Care at the End of Life of the Institute of Medicine: Marilyn J. Field and Christine K. Cassel, eds., Approaching Death: Improving Care at the End of Life (Washington, D.C.: National Academy Press, 1997).

3. James Luther Adams, "Introduction: The Storms of Our Times and Starry Night," in The Thought of Paul Tillich, ed. James Luther Adams, Wilhelm Pauck, Roger Lincoln Shinn (New York: Harper and Row, 1985), 13. See also Roger L. Shinn, "Tillich as Interpreter and Disturber of Contemporary Civilization," in The Thought of Paul Tillich, 52-53. Tillich defined kairos as "this fulfilled moment, the moment of time approaching us as fate and decision." Paul Tillich, The Interpretation of History (New York: Charles Scribner's Sons, 1936), 129. In the New Testament letters of Paul, the Greek term kairos often refers to "eschatologically filled time, time for decision." J. Baumgarten, "Kairos," Exegetical Dictionary of the New Testament, vol. 2, ed. Horst Balz and Gerhard Schneider (Grand Rapids: Eerdmans, 1991), 232-233. In Mark's gospel, the need for response is even more explicit. Jesus' opening proclamation highlights not only the idea of fulfillment but the sense of crisis, opportunity, and decision: "The kairos is fulfilled, and the kingdom of God is at hand; repent, and believe in the gospel" (Mk 1:15). See "Kairos in the NT" in Theological Dictionary of the New Testament, vol. 3, ed. Gerhard Kittel (Grand Rapids: Eerdmans, 1985): 459-462.

4. A publication of Last Acts, a professional group of end-of-life caregivers, uses the term in The Challenge of End-of-Life Care: Moving Toward Metanoia? with a reference not to the New Testament, but to the organizational change theorist Peter Senge. The publication was a result of a Financing Task Force Retreat and was published in October 1998. The group's web site is at www.lastacts.org.

5. Gutierrez, A Theology of Liberation, 2nd ed. (Maryknoll, New York: Orbis Books, 1988), 10.

6. Parker Rossman, Hospice: Creating New Models of Care for the Terminally Ill (New York: Association Press, 1977), 101.

7. The National Hospice Organization (NHO) reported this figure of 17 percent for deaths in 1995. NHO, Hospice Fact Sheet, Arlington, Virginia: NHO, July 1, 1996. The chapter "A Profile of Death and Dying in America" in the Institute of Medicine's study Approaching Death: Improving Care at the End of Life (see note 2 above) reports that in 1992 57 percent of deaths occurred in hospitals. The authors note that data on the site of death are incomplete and not readily available, 39.

8. Task Force on Palliative Care, Last Acts: Care and Caring at the End of Life, December 1997. Members of the Task Force represent groups such as the Institute of Medicine, Hospice and Palliative Care Nurses Association, American Pain Society, American Academy of Hospice and Palliative Medicine, Oncology Nursing Society, Society of Critical Care Medicine, Association of Oncology Social Work, and the American Cancer Society.

9. Ira R. Byock, "Completing the Continuum of Cancer Care: Integrating Life-Prolongation and Palliation," CA - A Cancer Journal for Clinicians 50:2 (March/April 2000): 123-132.

10. Nicholas A. Christakis, "Managing Death: The Growing Acceptance of Euthanasia in Contemporary American Society," in Must We Suffer Our Way to Death? Cultural and Theological Perspectives on Death by Choice, ed. Ronald P. Hamel and Edwin R. DuBose (Dallas, Texas: Southern Methodist University, 1996), 22-27.

11. The SUPPORT Principal Investigators, "A Controlled Trial to Improve Care for Seriously Ill Hospitalized Patients: The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT)," Journal of the American Medical Association 274 (November 22/29, 1995): 1591-1598.

12. ibid., 1596.

13. ibid.

14. Bernard Lo, "Improving Care Near the End of Life: Why is It So Hard?" Journal of the American Medical Association 274 (November 22/29, 1995): 1634-1636. Lo adds his own comment about the intervention of nurses: "Respected physicians may have more impact on physician-patient communication than skilled nurses because some physicians may have difficulty accepting suggestions from nurses regarding life-sustaining interventions."

15. The SUPPORT Principal Investigators, "A Controlled Trial," 1597.

16. Derek Doyle, Geoffrey Hanks, and Neil MacDonald, "Introduction," in Oxford Textbook of Palliative Medicine, ed. Derek Doyle, Geoffrey Hanks, and Neil MacDonald (New York: Oxford University Press, 1993), 5.

17. Daniel P. Sulmasy and Joanne Lynn, "End-of-Life Care," Journal of the American Medical Association 277 (June 18, 1997): 1854-55.

18. Timothy E. Quill, Christine K. Cassel, and Diane E. Meier, "Care of the Hopelessly Ill: Proposed Clinical Criteria for Physician-Assisted Suicide," in Health Care Ethics: Critical Issues, ed. John F. Monagle and David C. Thomasma (Gaithersburg, Md.: Aspen, 1994), 257.

19. The Institute of Medicine was chartered by the National Academy of Sciences in 1970 to bring distinguished professionals together to advise the federal government on matters pertaining to health and health policy.

20. Christine K. Cassel, "Preface," in Approaching Death, vi-vii.

21. Field and Cassel, eds., Approaching Death, 5-7.

22. Cassel, "Preface," in Approaching Death, vii.

23. Christine K. Cassel and Bruce C. Vladeck, "ICD-9 Code for Palliative or Terminal Care," The New England Journal of Medicine 335 (October 17, 1996): 1232-1233. Previously hospitals did not have a code to account for palliative care to Medicare. "Plan B for Pain Code," Hospitals and Health Networks (February 20, 1998): 84. The title of this article indicates the problem of palliative care being narrowed to pain control.

24. Federal Register 63, no. 147 (July 31, 1998) Rules and Regulations, 40962-40963 and conversations with Health Care Financing Administration personnel in 1999 and May 2000.

25. Comments while on a panel at a conference on "Ethical Pathways to Palliative Care" held by the Center for Healthcare Ethics, Cincinnati, Ohio, on October 15, 1998.

26. Ira Byock, "Hospice and Palliative Care: A Parting of the Ways or a Path to the Future?" Journal of Palliative Medicine 1, no. 2 (1998): 165-176. Available at www.dyingwell.com.

27. "New ICD-9-CM Code Often Signals DRG is on the Way," Medical Ethics Advisor 12:9 (September 1996): 105.

28. Cassel and Vladeck, 1233. Some hospice programs have begun to provide hospice services for dying residents of nursing homes. Here, also, there are issues about organizational cultures and reimbursement. Hospice services have been a Medicare benefit since 1983. See Thomas Hoyer, "A History of the Medicare Hospice Benefit," in A Good Dying: Shaping Health Care for the Last Months of Life, ed. Joan K. Harrold and Joanne Lynn (New York: Haworth, 1998), 61-69. However, the reimbursement only pays for home hospice services themselves and not room and board charges because the benefit is designed to be used in the home (except for brief respite and symptom control care in in-patient settings). On financing questions, see the chapter on "Financial and Economic Issues in End-of -Life Care" in Approaching Death, 154-187.

29. Joint Commission (JCAHO), CAMH update 1, February 1998, "Patient Rights and Organizational Ethics," pp. RI-1 through RI-13. The Standard is RI.1.2.7: "The hospital addresses care at the end of life."

30. For a British view of this problem, see Sam Ahmedzai, "The Medicalization of Dying: A Doctor's View," in The Future of Palliative Care: Issues of Policy and Practice, ed. David Clark (Philadelphia: Open University, 1993), 140-147.

31. Ann Bradshaw, "The Spiritual Dimension of Hospice: The Secularization of an Ideal," Social Science and Medicine 43 (1996): 411; Cicely Saunders, "The Modern Hospice" in In Quest of the Spiritual Component of Care for the Terminally Ill, ed. Florence S. Wald (New Haven, Conn.: Yale University School of Nursing, 1986), 42.

32. Saunders, "The Modern Hospice," 43.

33. ibid., 45.

34. ibid., 47.

35. ibid., 42.

36. Ellen Fox, "Predominance of the Curative Model of Medical Care: A Residual Problem," Journal of the American Medical Association 278 (September 3, 1997): 761-762.

37. Eric J. Cassell, "The Body of the Future," in The Body in Medical Thought And Practice, ed. Drew Leder (Boston: Kluwer Academic, 1992), 237.

38. Ben A. Rich, "A Legacy of Silence: Bioethics and the Culture of Pain," Journal of Medical Humanities 18:4 (1997): 239.

39. Drew Leder, "A Tale of Two Bodies: The Cartesian Corpse and the Lived Body," in The Body in Medical Thought and Practice, 24.

40. ibid., 33.

41. Cassell, "The Body of the Future," 239.

42. Catherine Kohler Riessman, "Women and Medicalization: A New Perspective," in The Politics of Women's Bodies: Sexuality, Appearance, and Behavior, ed. Rose Weitz (New York: Oxford University Press, 1998), 51.

43. Fox, "Predominance of the Curative Model," 761-762.

44. Daniel Callahan takes this approach in What Kind of Life? (New York: Simon and Schuster, 1990): 34-40.

45. H. Tristam Engelhardt Jr., The Foundations of Bioethics, 2nd ed. (New York: Oxford University, 1996), 189.

46. Riessman, "Women and Medicalization," 48-49; see also Fiona Randal and R. S. Downie, Palliative Care Ethics: A Good Companion (New York: Oxford University, 1996), especially chapter 9.

47. Daniel Callahan, The Troubled Dream of Life: Living with Mortality (New York: Simon and Schuster, 1993), 58. See also the Special Supplement "The Goals of Medicine: Setting New Priorities," Hastings Center Report 26, no. 6 (November-December 1996), especially S12-S14.

48. Ellen Fox, "Predominance of the Curative Model," 761-762.

49. Callahan, The Troubled Dream, 190.

50. M.W. Rabowet al., "End of Life Care Content in 50 Textbooks from Multiple Specialities," Journal of the American Medical Association 283 (February 9, 2000): 771-778.

51. Eduardo Bruera and Peter Lawlor, "Forum: Defining Palliative Care Interventions," Journal of Palliative Care 14, no. 2 (1998): 23-24.

52. Case mix refers to the variation of patients (and their need for greater or leser resources) at any given time. Byock, "Completing the Continuum of Cancer Care."

53. See R. J. Dunlop and J. M. Hockley, Hospital-Based Palliative Care Teams: The Hospital-Hospice Interface, 2nd ed. (New York: Oxford University, 1998). Although this book is based on the British experience, it raises many relevant issues in the formation of palliative care teams in hospitals.

54. Gillian Ford, "The Development of Palliative Care Services," Oxford Textbook of Palliative Medicine (1993), 43.

55. Nicole Makosky Fowler and Joanne Lynn, "Potential Medicare Reimbursement for Services to Patients with Chronic Fatal Illnesses" (July 1999), which appeared on the website of Americans for Better Care of the Dying (www.abcd-caring.org). See also this site or www.medicaring.org for Joanne Lynn's testimony before the Senate Special Committee on Aging, July 17, 2000.

56. Suzanne Holland and Karen Peterson, "The Health Care Titanic: Women and Children First?," Second Opinion 18, no. 3 (January 1993): 22-23.

57. Arthur W. Frank, The Wounded Storyteller: Body, Illness, and Ethics (Chicago: University of Chicago, 1995), 150.

58. Ira Byock notes hospice's "five things of relationship completion": saying "I forgive you," "Forgive me," "Thank you," "I love you," and "Goodbye." Byock, Dying Well: The Prospect of Growth at the End of Life (New York: Riverhead Books, 1997), 140.

59. Frank, The Wounded Storyteller, 145-150.

60. Mary B. Mahowald, "On Treatment of Myopia: Feminist Standpoint Theory and Bioethics," in Feminism and Bioethics: Beyond Reproduction, ed. Susan M. Wolf (New York: Oxford University Press, 1996), 95-115. Marie J. Giblin, "The Prophetic Role of Feminist Bioethics," Horizons 24 (1997): 37-49.

61. Rosemarie Tong, "The Ethics of Care: A Feminist Virtue Ethics of Care for Healthcare Practitioners," Journal of Medicine and Philosophy 23 (1998):131-132. Among earlier writings about an ethics of care were Carol Gilligan, In a Different Voice: Psychological Theology and Women's Development (Cambridge: Harvard University, 1982) and Nel Noddings, Caring: A Feminine Approach to Ethics and Moral Education (Berkeley: University of California, 1984).

62. Barbara Andolsen, "Elements of a Feminist Approach to Bioethics," in Feminist Ethics and Catholic Moral Tradition, ed. Charles E. Curran, Margaret A. Farley, and Richard A. McCormick (New York: Paulist Press, 1996), 351.

63. Ezekiel J. Emanuel et al., "Assistance from Family Members, Friends, Paid Care Givers, and Volunteers in the Care of Terminally Ill Patients," The New England Journal of Medicine 341 (September 23, 1999): 962; see also Barbara A. Koenig and Jan Gates-Williams, "Understanding Cultural Differences in Caring for Dying Patients," The Western Journal of Medicine 163 (1995): 244-249, and David Haber, "Minority Access to Hospice," The American Journal of Hospice and Palliative Care 16 (January/February 1999): 386-389.

64. Tong, "The Ethics of Care," 150.

65. Andolsen, "Elements of a Feminist Approach," 355.

66. Tong, "The Ethics of Care," 150.

67. In a recent study of nearly one thousand terminally ill persons, almost three quarters of all care was given by women. When women are dying, they must rely to a greater extent than men on paid help. See Emanuel et al. in note 62 above; Richard Schulz and Scott R. Beach, "Caregiving as a Risk Factor for Mortality," Journal of the American Medical Association 282 (December 15, 1999): 2215-2219; John Paul II's meditation, On the Dignity and Vocation of Women (Mulieris dignitatem) (Washington, D.C.: Office of Publications, U.S. Catholic Conference, 1988).

68. Karl Rahner, "The Unity of Love of God and Neighbor," in The Content of Faith: The Best of Karl Rahner's Theological Writings, ed. Karl Lehmann and Albert Raffelt (New York: Crossroad, 1992), 579-582.

69. See the Americans for Better Care of the Dying electronic publication, "Get Involved: Suggested Ideas for Legislative Reform in End-of-Life Care" at www.abcd-caring.org/action.htm.

70. There are many resources: the EPEC program (Education for Physicians on End of Life Care) sponsored nationally by a grant from the Robert Wood Johnson Foundation; Diane E. Meier, "Critical Success Factors for Hospital-based Palliative Care Programs," Technical Assistance Series published in June 2000 by the Center to Advance Palliative Care, which is also an initiative of the Robert Wood Johnson Foundation; visit www.edc.org/lastacts for the online journal called "Innovations in End-of-Life Care: an international journal and online forum of leaders in end-of-life care"; Joanne Lynn, Janice Lynch Schuster, and Andrea Kabcenell, Improving Care for the End of Life: A Sourcebook for Health Care Managers and Clinicians (New York: Oxford University Press, 2000).