The Journal of Pastoral Care, 43:4 (Winter 1989): 311-323.

Caring For People Living And Dying With Aids

Ronald H. Sunderland. Ph.D.
Executive Director,
Equipping Laypeople for Ministry
PO Box 20392, Houston, TX 77225


Proposes that the religious congregation ought to be the locus of pastoral ministry to AIDS clients and patients. Outlines the structure of interfaith AIDS care teams and how they can provide social, emotional, physical. and spiritual support to persons living and dying with AIDS. Sketches ways in which clinical pastoral educators can use their knowledge and skills in working with the many issues generated by the problems of AIDS, and suggests the need for additional and imaginative approaches in order to meet the challenges of this new and difficult pandemic.


Hospital and medical personnel who care for people with human immunodeficiency virus (HIV) progressive disease, or acquired immunodeficiency syndrome (AIDS), contend that AIDS is not just one more disease entity in a long progression of terminal diseases to strike the human community. It is argued that AIDS differs from other diseases, and places a new set of demands upon those involved in the care of AIDS patients. If this is so, it may be assumed that pastoral care with people living with AIDS also differs from care of other patient populations, a contention that must be examined before it is too lightly accepted. For it is all too evident that there are other terminal diseases, other sexually transmitted diseases, and other highly stigmatized diseases (three characteristics which AIDS possesses in common with other diseases but which also set it apart from them).

First, the debate continues as to whether it is valid to identify AIDS as invariably terminal. Walter Reed Army Hospital researchers cited evidence in 1987 which indicated that AIDS is a terminal disease. While many argue that this conclusion is premature, Walter Reed staff note that the longer they follow patients, the greater is the percentage of people who progress to a higher (more advanced) level of AIDS. When they examined progression to frank (or full-blown AIDS, after three years 10 percent of patients in stage 2 (T4 cell counts of 400 or higher), 29 percent of those in stage 3, 71 percent of those in stage 4, and 100 percent in stage 5 had moved into stage 6 (end-stage) or had died: "These findings underscore the grim reality that, in the absence of a scientific solution to HIV, most (and perhaps all) people who are infected with HIV will eventually develop end-stage disease and will die prematurely."

The Centers for Disease Control (CDC) in Atlanta reported in May, 1989 that "56 percent of all AIDS patients and 85 percent of those diagnosed before 1986 are reported to have died. The actual case-fatality rate is higher due to incomplete reporting of deaths."

Second, HIV causes an infection characterized by low transmissibility, and limited modes: intimate sexual behavior, invasive exposure to blood, or perinatal exposure. Scxual transmission remains the most common mode, and can occur between homosexual or heterosexual partners. The rate of transmission between drug users using common paraphernalia is surging ahead of other transmission modes in major population areas along the east coast of the United States, and it is transmission by drug users to their sexual partners that gives rise to the fear of higher incidence of HIV disease among heterosexuals in the future.

The association of sexual transmission with a disease known to have a high (probably 100 percent) mortality rate inevitably has focussed public discussion on differing perceptions of moral behaviors, and, particularly, given renewed force to recriminations against homosexual males and gay life styles, Two factors indicate the extent of the significance of these issues for pastoral caregivers. At the very moment when a person learns he or she has acquired HIV disease, and needs all the personal resources which can be mustered, his or her energies are sapped by the struggle to cope with family and societal taboos and stigmatism. Further, many parents still learn in the same conversation that their son is gay or is an IV drug user, and is HIV antibody positive or has AIDS. Other parents may learn their daughter is married to a bi-sexual male or IV drug user, from whom she has contracted HIV disease. The usual consequence is a significant level of grief, open accompanied by guilt and anger in both parents and son or daughter. In either case, the need for pastoral support is intense and continuous, and constitutes a phenomenon unequalled in the history of the pastoral care movement.

Third, it is the intensity of the stigma and ostracism which accompany AIDS, perhaps more than any other factor, which differentiates HIV disease from other medical crises in our contemporary history. Medical personnel, workers in the social sciences, and pastoral carers all have their stories of acts of discrimination both against the people living with AIDS for whom they care, and against themselves. While, as Susan Sontag points out, diseases such as leprosy, TB, and cancer have each been associated with intense stigma, this social threat has reached new levels of intensity with the appearance of AIDS. People in the pastoral care field need to be familiar with the growing literature addressing the role of stigma in human disease, as well as with its particular impact upon people living with AIDS, and its implications for pastoral ministry.

Fourth, as Elizabeth Goss points out in her article in this issue, the awareness of the proximity of dying and death on the part of people with AIDS and their readiness to discuss frankly their comprehension, feelings, and plans concerning dying and death, including funeral planning, have created a situation unique in the annals of the pastoral care movement.

The implications of these factors for the doing and teaching of pastoral care bear close examination. Are people living and dying with AIDS teaching us something new about how to live and die? Does pastoral ministry to people living with AIDS differ from the content and direction of "general" pastoral care? Is Clinical Pastoral Education for ministry to people with AIDS so different from other modes of CPE that specialized training is required? People engaged in this specific ministry do not, I believe, pretend to have the answers. We are presently at the stage of describing what we are doing, as a basis for reflection by and with our peers. My purpose here is to describe one level of care; namely, the role of the congregation as a primary locus for ministry to people living and dying with AIDS. The picture is drawn from the experience of congregations linked with the AIDS Interfaith Council of Houston. We need, just as urgently, descriptions of institutionally-based care to fill out the picture.

The Congregation as the Locus for Ministry

Community response to AIDS in Houston first became a public concern when it became politicized during the fall, 1985 mayoral campaign. In an apparent attempt to gather votes by exploiting popular fears about AIDS, and, particularly, prejudices against gay men, data concerning the disease and how it is transmitted were misrepresented by one of the mayoral candidates. The election campaign coincided with the growing awareness on the part of my colleague, Earl Shelp, and myself of the growing numbers of hospital patients diagnosed with AIDS and being treated as either inpatients or in outpatient clinics. We invited a group of Houston clergy to review with us the predicted scope of the growing AIDS crisis, the lack of any response from the religious community, and the level of response from the religious community which would be required in order to respond appropriately to the emerging needs of people with AIDS.

This clergy group became the nucleus of a larger consortium of clergy who, early in 1986, formed the Houston Clergy Consultation on AIDS. The consultation arranged the city's first AIDS workshop for the religious community. By the end of 1986, six congregations had developed congregational teams of fifteen to twenty people, and had provided direct, hands-on care for 49 people with AIDS. By the end of 1987, eleven congregations had formed care teams, and the number of people with AIDS receiving care reached 141. As of August 1989, twenty-seven congregational care teams were caring for 90 people, and the total who had received ministry from a congregational care team since the inception of the program had exceeded 455. In May 1988 the program assumed its present title, namely, the AIDS Interfaith Council of Houston.

Congregational AIDS Care Teams

The Care Team program differs from previous efforts to neet the needs of people with AIDS. The first efforts to support people with AIDS had been developed by such groups as the Gay Men's Health Crisis in New York, and customarily were based on "buddy" support, which depends on a one-to-one relationship. While, like the AA program, it often provides for 24-hour phone support, it usually is limited to social activities, that is, not including physical carc. The deficit of such programs arises from the individualized nature of the care. Most groups which developed these programs provide peer support for the buddies, but the frequency with which "buddy burn out" is said to occur witnesses to the level of stress of one-to-one support.

The strength of the AIDS interfaith network care team program is based on its interfaith, community-wide nature; the congregational base of each care team; and the sense of call to ministry as one characteristic of the people of God.

Interfaith Structure of the Ministry

It is possible, of course, for any congregation to recruit and train a number of people to care for people living with AIDS and to assign and supervise their work. There are many reasons to urge that the most effective response to the AIDS pandemic is through the linking of individual resources in communities in an interfaith response which includes AIDS-awareness education with programs of hands-on ministry for people living with AIDS. Such inter-faith efforts make effective use of local educational resources and personnel; witness to the religious community's readiness to respond to the needs of people with AIDS; and link congregations through an agency representing the religious community with which secular agencies are able to cooperate in shaping a compassionate response to people living with AIDS. Together, religious and secular agencies can plan and carry out measures relating to the allocation of resources, and together seek funding from state and federal sources and local foundations. Through this process, religious and local government agencies may develop a momentum leading to an integrated, community-wide AIDS-awareness and response program, and assist in the shaping of community agencies' policies (e.g. county, city, school district) respecting indigent health care, care for children with AIDS, and other related matters.

The Congregational Base of the Care Teams

Care team members know they are recruited by and accountable to their congregations, and their ministries are extensions of the congregation's ministry. Of equal importance is the support of this ministry by the congregation. Members are assigned to a client1 in pairs, to provide each person with support, and to facilitate oversight of activities. Team members meet regularly as a group to report their individual visits with clients, to receive supervision, to participate in continuing education, and to develop a sense of group identity and cohesion.

Support which is generated between care team members is particularly important in light of the intensity of grief with which each member is confronted. Each individual case involves a sense of unremitting grief, evoked by learning that one is HIV antibody positive; the onset of symptoms; each relapse, often with its consequent hospitalization; and the threat of loss of physical and emotional reserves, and finally, of life itself.

One of the Houston teams which has been active since 1986 has ministered to fifty people with AIDS, of whom twenty have died. Team members have learned that they can continue to offer their ministry only if they give constant attention to their processing of their individual grief, while remaining aware of and responding to the grief of each other member. This process occurs at a number of levels. It is rarely absent from the agenda of team meetings, but it also happens more informally: a team member may observe a fellow member weeping quietly during worship, and move to the person's side, offering the silent comfort of presence, or one member will call to inform another of the death of one of the team's clients, and the two minister to each other as they visit over the phone.

The recognition by both congregation and individual team members that the care team represents the congregation in ministry to people with AIDS has proved an important step in developing AIDS awareness in the community, emphasizing the congregation's role in AIDS education. Further, the existence of the program implicitly directs attention to broader issues of human sexuality education, and the religious community's role in the wider community with respect to intravenous drug use (one of the primary risk behaviors for HIV infection) and ministry to HIV-infected drug users. One of the ironies of the AIDS crisis is that it has taken such a catastrophe to gain the attention of the religious community to such issues.

The Sense of Call to Ministry

Through the program, "Equipping Laypeople for Ministry," I have found during the past sixteen years that lay members often are looking for points in the life of the church at which they can find expression of their need to be in ministry. Indeed, much of the frustration I have felt among lay members is due to the failure, often of clergy, to call laypeople into ministry. The ability of laypeople to provide effective pastoral ministry has been documented and is enlivening congregational life across the United States. It comes as no surprise, therefore, to find that this lay enthusiasm to undertake pastoral ministry has extended to include ministry to people living with AIDS.

Over 500 laypeople have been trained through the AIDS care team program in Houston. Each has responded to a sense of call which has been affirmed by the organizing congregation, and their commitments to the clients to whom they minister have been heart-warming. In their different ways, they are learning that, when they open themselves to personal ministry with another person, the result is a process in which, in this living relationship, the caregiver finds that such openness turns the light upon both parties. Jasper Keith reminds people called to pastoral ministry that, if they are really to be available and to listen to people in crisis, they must first be able to listen to themselves. "Inextricably bound to my ability to listen to me is my sense of value and self-acceptance. For me to listen to me is to engage the most threatening aspect of my being." Keith adds that sometimes, such openness to whatever comes is anxiety-provoking and, sometimes, we resist such experiences of anxiety. We are much more intensely aware now than we were in 1986 that the development of an adequate support system for lay teams engaged in such intense ministry is not only fundamental to the program, but that it is indefensible to call lay to this ministry in the absence of adequate supervision and continuing pastoral education.

Lay participants in the Houston program are finding, for example, that to be present with someone who is critically ill and perhaps near death means that one must he open to one's own fears of illness and death. It is for this reason that the program provides for both structured and unstructured opportunities for supervised review of team members' experiences of ministry and grief. (It is at this point that the congregationally-based ministry to people living with AIDS enters the arena of clinical pastoral educators, who are called on to provide supervision of the team leaders' oversight of their respective teams).

Lay caregivers arc learning that loyalty to people with HIV disease is as important as the expression of compassionate acceptance and ministry which the care team offers. It is important to remember that people living with AIDS experience a series of losses and disappointments, some of which may be comparatively minor, others of which are catastrophic. People from whom they expected to receive support and understanding frequently abandon them. Some physicians may exercise their ''right" to decline to provide medical care, when the HIV positive status of the patient is identified. Patients may fear that physicians may cease to provide support, and, indeed, some do withdraw when insurance benefits terminate, leaving patients to depend on the public hospital system. Life may be reduced to a series of physical, material, emotional and social losses. When this occurs, the care team's loyalty and commitment may be all that stands between a person with HIV disease and the overwhelming sense that no one cares.

From that perspective, a great deal depends upon the team’s loyalty to patients. Before joining a team, therefore, a prospective member must weigh these factors and determine the level of commitment he or she is able to make. Once committed to this ministry of walking through the ordeal of HIV disease with patients and their loved ones, such loyalty cab be a source of strength and comfort. "Such fidelity can be a manifestation of the fidelity of God's love toward the affected individuals."

Among the "tasks" entailed in the caring process, none is proving more arduous for lay team members than the work of grieving. Because we minister to people facing a disease for which there is still no cure, care team members often sit with patients in end-stage AIDS. One of the promises our teams are making to people living with HIV disease is that they will not die alone. None us imagines it is easy, or comfortable, to undertake the most intimate personal care which care team members covenant to provide. The reality of catastrophic illness and the nearness of death bring added pain. Team embers know, as they accept responsibility for the care of a new client, that they may expect to share in his or her death.

Content and Management of Care Team Ministries

Social Support. Contact with a client begins with the referral of the client to the team by a program coordinator. Initial pastoral care usually takes the form of social contact, which increases in frequency and intensity as the client's needs grow. Daily activities may include transportation, household chores, serving meals, accompanying the client for shopping or social activities, amd expand to basic nursing activities.

Care team members learn how to encourage clients to set their own agendas, thereby reinforcing their autonomy. Team members arc encouraged to adopt a listening style which invites clients to share their stories to the extent they desire. They learn, also, to remember that they cannot change the realities clients face, nor assume responsibility to resolve their problems. On the other hand, their readiness to help a client sift through options and explore possible actions, together with offers of practical aid such as accompanying him or her to the Social Security office, will affirm the client's dignity.

Emotional Support. A great deal of effort is invested in the emotional support of the client. Because HIV disease tends to be accompanied by progressive debility and dependence, its psychological-consequences may be as devastating as the disease itself. Diagnosis with HIV disease sets its motion a transition from a healthy, normal life style to being weak and infection-prone. The fact that the virus may be dormant for a lengthy period of time (ranging from two or three to ten or more years), may afford some ease of mind, but the fear of developing symptoms of catastrophic disease is rarely far from conscious reflection. Diminished self-esteem, depression, and suicidal thoughts arc not uncommon. Patients and/or family members may be angry, and the customary stresses which exist in family constellations may be exacerbated.

Physical Support. The provision of basic (non-professional) nursing care is nor of the most important aspects of the care team program, and augments each of the other levels of care. Basic nursing care may include bathing the patient, turning the patient and changing bed linen with the patient in bed, exercising, transferring the patient from and to bed, and rubbing/massaging extremities. It is a moving experience to observe lay team members offering these levels of care to people with AIDS, assuming roles for which previous life experiences have not prepared them, and doing so out of a renewed sense of what it means to be a servant of people who need their care.

Spiritual Support. While not every person to whom team members minister will have or express spiritual needs, there will often be opportunities to share religious experiences and values. The initiative to raise these issues should always remain with the clients, in order to avoid any appearance that the caregiver is taking advantage of the client's vulnerability. Ministry to people living with HIV disease is offered in a climate shaped by poor medical prognoses, and by fears and negative moral attitudes accompanied by harsh social judgments in the general public. Such attitudes did not end with Kokomo, Indiana, and Arcadia, Florida. It is difficult for care team members to remain immune from such influences. Such factors should cause caregivers to examine their own faith, and to be ready to face their own emotional and religious questionings and crisis.

Spiritual support is shaped by two factors: the "pastoral identity" of the minister (lay or ordained), and the pastoral or spiritual needs of the person to whom care is offered. Pastoral identity has been a term usually applied to clergy. It signifies the minister's awareness of gifts or aptitudes which equip that person to offer pastoral ministry. The minister's self-awareness is evaluated by the sending community. In the case of the ordained pastor, that is the sending church; when it refers to laypeople, it is the congregation. Members who feel drawn to ministry to people living with HIV disease must satisfy the congregation that they are suited to this ministry. This may be determined by the pastor, priest, or rabbi, or by a designated committee, a process which constitutes an appropriate screening of lay participants.

Spiritual support encompasses a wide range of pastoral services, including visitation and companionship in informal settings, and extending to spiritual conversation and worship. It is the visitors' sense that they offer these ministries in response to their pastoral call which imbues these activities with "pastoral" meaning. Such ministry, however, is a gift, offered in response to the needs of clients, and loses its pastoral identity if imposed on the other. The person receiving ministry must be free to decline offered help. Hence, the Care Team program has integrity only when it is non-intrusive, non-exploitive, and non-judgmental. Thus, for example, proselytism is excluded from ministry. The ministry of reconciliation is closely identified with spiritual nurture, and may take the form of renewed religious life and/or renewal of relationships with families. Team members have recounted incidents in which their presence has assisted the renewal of tics with parents and siblings and their client.

Involvement of laypeople in the provision of pastoral ministry not only provides care for people in need of acceptance, reassurance, and love, which is the reason for the very existence of the Care Team program, but becomes a point in the care providers' own lives at which their own spiritual formation is extended and deepened. Each person both gives and receives, and each is blessed.

Extending the Concept to Care for Children with AIDS

The Houston program initially was directed to care of adults with AIDS. In June, 1989, the program staff began to explore how the care team concept might be applied to care of children with AIDS. It became apparent quickly that two separate needs were emerging. First, families which intend to care for their own children would need one level of support, and the care team model is readily adaptable to this need. At the time of preparing this manuscript, three congregations indicate their readiness to specialize in this ministry to children. Second, we can expect a growing number of "boarder," or "throw-away" babies, a phenomenon already being experienced in New York. As mothers who are also drug users give birth to infants, some of whom are infected with the AIDS virus, some parents are abandoning their new-borns, some may be too ill themselves to provide care, and still other parents will die, leaving their children orphaned.

We believe these infants, and their families if they are accessible, constitute a claim on God's people. The question is not "Is this really our concern?" but "What tasks lie ahead for us in this matter?" The religious community's child care institutions may be called upon to provide some residential care for abandoned AIDS babies. Chaplains in such institutions can play a leadership role in challenging and training staffs in such institutions. Hospice chaplains similarly can function as prophetic voices in those settings. Our intention in Houston is to explore how the congregational care team model may he adapted to provide support to the extended families of children with AIDS, so that these children can be maintained by their families. The function of the Houston staff will be to test the model and to make our findings available to other interfaith AIDS ministries centers as the pilot program progresses.

The Roles of Clinical Pastoral Educators

Surgeon General C. Everett Koop, reviewing the program in May 1988, stated that, "If it would be possible to take what you've done to other parts of the country, we would see networks such as (this) spring up all over the land." Such a venture will only be possible with the support, direction, and skills of CPE supervisors and pastoral counselors, since, while most communities can call on resources to train groups of laypeople to care for people living with AIDS, thc keystone of the entire enterprise is the competence and care will, which each team is supervised. This in turn calls for supervisory training for team leaders.

Cooperation between clinical supervisors and community-based AIDS in networks can serve the following purposes:

CPE supervisors can extend their links to congregations and judicatories within their respective communities;

CPE centers (and their institutions) will have an additional channel through which to enrich congregations and communities by the employment of their particular gifts and skills;

Ministry to people living with AIDS in the respective hospitals will be coordinated with the congregational teams which care for patients on discharge from hospital who arc referred to a care team;

The program can become the basis for the teaching of supervisory skills to parish clergy and selected laypeople, thus enabling congregations to extend their training programs into other areas of more general pastoral care.

I have long argued that training of laypeople for congregational pastoral care is not only feasible, but long overdue, and, further, that clinical pastoral supervisors have an essential role to play in this enterprise. Our clinical expertise has taught us that supervision of trainees in ministry is the sine qua non for effective care and the learning which can occur through reflection on that ministry. The obligation which rests upon clinical pastoral educators to employ their skills to assist in the development of community-based AIDS care is both a moral and a biblically-based duty. If we possess the skills and the ability to relieve suffering, we are morally bound to act. Second, to those to whom much is given, of them much is expected.

It remains, then, to devise methods by which to actualize this model. One such program will undoubtedly be the involvement of ACPE supervisors or AAPC diplomates in supervising team leaders of congregational care teams. This model, in fact, is already being employed. Second, selected advanced CPE students may be offered the opportunity to assist in the training and supervising of teams and their members. Third, CPE centers might develop AIDS-specific programs as a center option, along similar lines to those being developed by ACPE supervisors Jim Corrigan in Chicago, or Paul Steinke and Jim Jeffrey in New York.

Perhaps the most innovative program will be one in which a CPE center sponsors a community-based interfaith AIDS ministry. With the center as a base, and using center staff, a training program could be established to recruit congregations, train care team leaders, develop the appropriate team member training, supervise the activities of team leaders, administer the interfaith program, and coordinate the referral process from health care agencies to care team leaders. This program, in turn, could enlarge the center's offerings to students, and act as a bridge to parish-based CPE.

Extending the Care Team Model to Other Areas

The extension of the lessons learned through the AIDS care team ministry in Houston is leading to yet another venture in pastoral ministry. It is a simple matter to translate the types of care being provided to people with AIDS into care for people facing other types of catastrophic illness and disability. Conversations are beginning with the Houston chapter of the Alzheimer Association, for example, to explore the possibility of establishing a care-team approach to assist families with Alzheimer patients. Other specialty groups will be contacted in turn, as application of the concept is extended.

Herein lies yet another possible application of what I like to call the genius of the Clinical Pastoral Education Movement. The types of initiatives which enable a CPE center to develop an interfaith AIDS pastoral care program tan be extended to assisting congregations to respond to a wide variety of families' needs related to medical and other crises. The recruitment of congregational care teams, the members of which are trained and supervised by CPE staff or students, can serve as a medium for the development of parish-based Clinical Pastoral Education, the wide-spread application of which has still to occur.

The Practical Question: Funding?

The rich possibilities for education and ministry reflected in this sketch extend to the one area likely to inhibit its application; namely, funding. Our experience indicates that the proposed interfaith structure and the service program directed to enlarging congregations' capacities to minister to their members and communities alike will attract significant financial commitments front congregations and their judicatories. Such funds are likely to be augmented by local foundations, venture grants from United Way agencies, county and state health departments and social service agencies, and so forth. Each of these funding sources will look for the types of structures and the integrity of the educational and supervisory processes already in place in each CPE center.

As the AIDS crisis deepens, it is becoming clearer that the slow pace of funding of AIDS-related programs has been devastating, but that the situation is changing at last. Federally generated funds available through the Health Resources Services Administration (HeRSA) are being channeled to states and cities, and through state, county, or city departments of health to specific local agencies. For example, a HeRSA grant to Harris County, Texas, will fund a variety of projects, including aspects of the Interfaith Council Care Team program; e.g. the pediatric AIDS project. This program has also received state grants. Interfaith projects in other states have also received state-supervised grants. Community and business organizations and private foundations arc also responding to the needs of people with AIDS and to interfaith efforts to meet those needs. Program personnel should be alert to all of these possibilities, since these programs are personnel-intensive, and, if based in interfaith community efforts, are eligible for these types of grants.

In Closing . . .

There is no closing to these remarks. Ministry goes on, and if, from time to time, we pause at this well or that oasis for brief refreshment, it is in order to continue our journeys.

The religious community's response to the AIDS crisis has been mixed, to say the least. Not only was the initial response tardy—the churches were the most belated of any of the nation's agencies to speak to the crisis—but we still lag far behind if the need is our gauge. Indeed, if one of the primary functions of God's people is to speak prophetically on societal issues, to challenge the nation and its communities to act with compassion toward people struck down by a pernicious disease and to model for others a response of compassion, we have done badly. We have risked being categorized as false prophets. When voices from the religious community were heard, the first words were strident, angry condemnations by people who assumed to speak for God in identifying AIDS as an act of God’s punishment. People inside and outside the religious community have used the AIDS crisis to advance other agendas. It is reprehensible for people on a hospital staff to use AIDS to achieve some personal or professional agenda within the institution It is just as reprehensible for religious people to use AIDS to achieve some anti-gay agenda as it is to use the crisis to advance a gay agenda; in either event, people living and dying with AIDS are treated as pawns. The issues of examination of gay life styles and of the care of people living with AIDS must be kept separate for their sakes.

Too many people have been left in doubt and confusion by the words of hate from some religious leaders, and by the silence of others. How many of us have sat with parents of a dying man, woman, or child, only to hear them whisper their fear to return to their villages and towns, where the fact that their family member died of AIDS would almost certainly be known, and they would be ostracized by their pastors or congregations! There are too many stories; one will serve to dramatize the concern:

Jeff's pastor tells the story. The Rev. Jim Hedges was not always Jeff’s pastor. The ten year old boy, a hemophilia patient, contracted HIV disease at the age of four. Six years later, the minister of his congregation discovered Jeff was dying from AIDS, and asked his parents not to bring Jeff to church. Jeff was undaunted. He picked up the Yellow Pages and began to dial nearby congregations. He informed the clergy who answered that he had AIDS, and asked if he could worship with them, and would they bury him? Jim Hedges was the sixth pastor Jeff called. Jim replied that Jeff and his mother would be welcome at his Tampa congregation—John Calvin Presbyterian Church—and invited Jeff to worship with them the following Sunday. Jeff died on March 2, 1989, and was buried from John Calvin. He and his mother had been surrounded by the loving care of the congregation, and in her grief, his mother continues to receive their compassion and nurture.2

 

AIDS taps a remarkably deep well of compassion. So, then, if there are too many stories that bring dishonor to God's people, thankfully, there are other stories—stories like that of Jeff and Jim, and like the stories issuing from the care teams of the AIDS Interfaith Council in Houston, and similar programs in growing numbers of cities.

Time and space prevent me to speak of David and Sam, of Michael, Wanda, Don, Thelma and Ralph, and all the others, who through faith refused to be defeated by disease or death. They were weak, but became strong They were mighty in the battle against indifference and fear. Some, were mocked and rejected by their employers, and went around poor, persecuted, and mistreated. . .

"As for us, we have this large crowd of witnesses around us. Let us rid ourselves, then, of everything that gets in the way, and the sin which holds on to us so tightly, and let us run with determination the race that lies before us. . . ." Hebrews 12: l (Good News for Modern Man)


1One of the issues faced by caregivers ministering to people living with AIDS is the choice of appropriate terminology in reference to the people we serve. Terms like "victim" and "sufferer" should be avoided. Terms such as "patient," "client," and even the acronym "PWA," which depersonalize people, may he resented. Nevertheless, some term or terms must be used to refer to the people to whom this ministry is directed, when it is being described or reported. In publishing the Care Team manual for the AIDS Interfaith Council program, we have used "client" to refer to a person living with AIDS who is assigned to a care team, and "patient" in reference to those activities associated with more physical care, for example, basic nursing care.

2Jim Hedges, "Freedom for Compassion: Children and AIDS," Church and Society. 29:3 (1989).