Pastoral Care for Persons with AIDS and for Their Families
by Richard L. Schaper
When this article was written, Richard Schaper was an associate pastor of the Evangelical Lutheran Church of the Redeemer in Atlanta, GA. The article appeared in The Christian Century Aug. 12-19, l987, pp. 691-94. Copyright by the Christian Century Foundation; used by permission. Current articles and subscriptions can be found at www.christiancentury.org. This text was prepared for Religion Online by John C. Purdy.
A scene of pathos awaits anyone undertaking ministry to a person with acquired immune deficiency syndrome (AIDS). The pathos may be glimpsed in this portion of a letter written by a mother whose son had recently died of AIDS-related causes. The letter was addressed to the pastor who briefly attended this small-town family gathered around the son's deathbed in, a city hospital:
My husband and I wish to express our appreciation for your visits, prayers and sincere concern for us and John. I know John didn't want to die. Part of it was because he was afraid. You reassured him when you reaffirmed what he had been taught as a child. John felt he must be a terrible person because he had this disease and was dying at such a young age. . . John and his Dad loved each other, but John didn't receive the love he wanted from his Dad. My husband knew John was gay but didn't tell him he knew, and John was a nervous wreck around his Dad. He felt his father would reject him if he knew. That is the reason he didn't know about John's illness. . .
Although this mother had learned the nature of her son's illness soon after he had been diagnosed nine months earlier, the father was not informed until the final hospitalization, two weeks before the death of his son-who by then was too weak, pain-ridden, drugged or demented to communicate effectively.
The words of this mother's letter are an open door through which she lets us look in upon the living room of American society, with its brokenness, alienation and anguish. The scene begs for the healing, reconciling and supportive ministry of Christ's church. Providing pastoral care to persons suffering from AIDS, and to their families, poses an urgent and unavoidable challenge to the church.
The challenge is urgent because more than 31,000 people in the United States have already been diagnosed with this fatal disease -- half of whom have already died, leaving families, friends and loved ones who need care -- and because at least 1.5 million Americans are thought to be carrying the rapidly spreading virus.
The challenge is unavoidable because current projections suggest that few congregations will remain untouched by the tragedy. Relatives or dear friends of members -- and members themselves -- will succumb to AIDS. In addition, public policy cries out for wisdom. Issues yearn for clarification. Education and prevention need trusted public forums. The church is called to make its voice heard in these deliberations on behalf of justice and compassion for those afflicted. It can help calm irrational fears and raise rational concern.
Any pastoral response to the AIDS crisis needs to consider three factors. Although these characteristics of the syndrome are well known, reviewing them will help indicate the type of pastoral care that is needed.
AIDS is a fatal disease. A person who has AIDS is terminally ill and knows it. So far no cure has been found. While the time-span between diagnosis and death may range from a few days to a few years, the average is 14 months. Pastors who are experienced in ministering to the terminally ill and their loved ones will recognize similar needs in caring for those with AIDS,
Even on this level, however, AIDS can be more devastating than other terminal illnesses. AIDS claims mainly the young. John in the letter quoted above was 26 years old. A majority of victims are young men in their 20s and 30s, in their early careers. Their youthfulness contributes considerably to the sense of tragedy and shock surrounding their illness and deaths.
Also, to die from AIDS is a particularly terrible way to die. At the time of diagnosis, the person may still feel strong and healthy; but, as time passes, he or she faces progressive weakness and disability, loss of body-function control, severe weight loss, and-in two-thirds of the cases-dementia, as the virus attacks the central nervous system and brain cells. Repeated hospitalizations bring demoralization, particularly in instances in which some hospital staff are inadequately trained to meet the full range of patient needs.
Healthcare-givers can attest to the overwhelming and often protracted disintegration -- both physical and mental -- which torments persons with AIDS as they lie defenseless against every infection that comes along. Any person suffering this terminal illness will be in need of all the compassion and pastoral care that the church can muster. So, too, will those who care for them.
AIDS is not only a fatal disease, it is also a contagious disease. The "A" in AIDS stands for "acquired." It is this aspect of AIDS that has provoked the most fear. Indeed, this widespread and largely irrational fear has become a second epidemic -- one that must also be addressed by pastors concerned for people's spiritual health. Public panic has resulted in persecution and threats of repression not only toward those who already have the disease but also those who belong to groups which have been identified as being at high risk.
In contradiction to this fear, scientific research has shown that, without exception, no one has ever contracted AIDS by mere casual contact. Pastors must not only disseminate this fact, they must trust it. I well remember repeating it to myself as I rode up the elevator toward my first encounter with a person with AIDS.
Visiting with these persons with AIDS, taking them by the hand, or touching them -- so symbolic in breaking through the alienation they may feel -- even hugging or embracing them presents no danger to the healthy visitor. The presence of a person with AIDS in a worshiping congregation poses no threat to the health of others, whether in exchanging the sign of peace, sharing the chalice, shaking hands or participating in a parish meal. Paradoxically, the danger in public gatherings is rather to the person who has AIDS, for that person's weakened immune system makes him or her highly susceptible to ambient sources of infection.
On the other hand, there are obviously means by which the AIDS virus is transmitted from a person who is infected to one who is not. Aside from being born of a mother who is already infected, or from sharing a hypodermic needle or receiving blood products in transfusion from someone who is infected, the most prevalent way in which AIDS is spread is through sexual intercourse, whether vaginal, anal or oral.
The presence of the AIDS virus in an asymptormatic carrier of the disease may be indicated by a blood test designed to detect the human immunodeficiency virus (HIV) antibodies. For the sake of those they might infect with this deadly virus, any person who tests positive should either refrain from sexual intercourse altogether or at least make use of a latex condom. This information is essential to counselors.
In today's sexually permissive society, pastors may be called on to counsel single persons and premarital couples as well as married couples who are sexually active. The AIDS crisis itself has revealed a shocking degree of sexual promiscuity prevalent across the broad range of American society. It is also having the effect of curtailing this promiscuity as behavior adjusts to perceived risks. Without compromising the church's traditional teaching that sexual intercourse is appropriate only within the covenant relationship, pastors should be prepared to provide relevant and reliable information on this life-and-death matter.
The irrational fear of contracting AIDS by casual contact is largely responsible for the intense isolation often experienced by persons with AIDS. When I visited a young man who called the church to say he had AIDS and wished to be baptized, he told me that I was the second person in three months to have entered his apartment. The other visitor, significantly, was a "buddy" assigned him by the local AIDS network. Such isolation can itself be emotionally and spiritually devastating.
On the other hand, some persons with AIDS may isolate themselves for protection from the infections to which they are so vulnerable. The pastor must remember that the person with AIDS needs more protection from a cold or other illness the pastor may have than the pastor needs from the patient's illness.
Alienation is institutional as well as personal. Dismissal from employment may come early, and with it loss of health insurance. While hospitals may have little choice, few nursing homes will accept persons with AIDS. Nor does this ostracism end at death. Loved ones often have to seek referrals from an AIDS network to find a funeral home or even a clergyperson who is willing to serve them.
The third salient feature of AIDS is its association with homosexuality. It is this factor which has most impeded and brought confusion to a caring pastoral response.
In contrast to its indiscriminate impact in countries of its earliest and greatest spread, AIDS in the U.S. has disproportionately and overwhelmingly affected that part of the population which is gay or bisexual; nearly three-quarters of those in the U.S. who have contracted AIDS to date are gay or bisexual males. This proportion is decreasing and is likely to continue to drop, since the virus is now spreading more rapidly among the heterosexual population. However, in this country, association of the disease with homosexuality is unlikely to disappear soon.
Representatives of some churches which condemn homosexuality unreservedly have identified AIDS as "the gay plague" and have proclaimed that it is God's judgment against homosexuals. The notion that AIDS is deserved-that it is divine retribution for homosexual behavior-must be categorically rejected. The underlying assumption of this notion, as Christian D. von Dehsen, who helped research this article, has pointed out, "is a form of moralism about homosexuality which, in essence, supplants the gospel. "
At the same time, leaders and pastors of more mainline denominations have been exceedingly cautious lest their statements or actions on behalf of persons with AIDS seem to condone homosexual behavior. One effect of the AIDS crisis has been to increase the pressure on the churches to deal in some way with the issue of homosexuality. The theological, ethical and pastoral reflection which this situation has provoked will undoubtedly enrich the church in its evangelical witness.
The church, however, cannot and need not wait to reach consensus on homosexuality before addressing the staggering spiritual needs of those who are ill with AIDS. Surely a stricken human being need not be of a certain sexual orientation in order to qualify for the compassion of Christ and the church. Is this compassion to be reserved for only those whom the church deems righteous? Reaching out in mercy to someone with AIDS implies more about the faith of the church than it does about the morality or immorality of the sufferer.
AIDS is a contagious, fatal disease which has been associated with homosexuality -- a highly potent combination of medical and social taboos. Pastoral care which is appropriate as well as compassionate must be informed by all three of these factors.
Certain issues should be anticipated in an AIDS ministry:
"John felt he must be a terrible person," wrote his grieving mother, "because he had this disease and was dying at such a young age. "
All too often, stricken people themselves attribute their suffering to divine punishment. This belief is particularly poignant for the person with AIDS who obviously finds much in the surrounding culture to reinforce this incriminating interpretation. The worst harm done by gratuitous, judgmental proclamations that "AIDS is God's damning curse upon homosexuals" is precisely in the tremendous temptation on the part of the AIDS sufferer to believe it, thus raising one more obstacle to faith in God's all-sufficient grace. Even for gay persons who have accepted and made an apparently thorough adjustment to their sexual orientation, diagnosis of this fatal illness reopens the question of personal worth and salvation.
"You reassured him," John's mother wrote, "when you reaffirmed what he had been taught as a child. " In such mortal circumstances, we discover, as Kierkegaard did, that the opposite of sin is not virtue but grace. The process of life-review prompted by knowledge of impending death may result in a conviction of sinfulness and feelings of guilt. In such circumstances the fundamental gospel promise of forgiveness and eternal life is heard as genuine Good News.
Alienation from the church
John, like the majority of gay men, received his religious training and became a believer before he discovered he was gay. Some gay Christians are able to work through the realization of their sexual identity, incorporate it into their life of faith, and remain in the church (or join a gay-oriented church group). Many others, however, work through their acceptance of their sexual orientation by separating themselves from situations or institutions, such as the church, which may condemn them. The latter group may have a particularly hard time with religious issues when they face the prospect of death; their anger at the church may deepen. Because the clergy are perceived as official representatives of the church, pastors do well to be aware of this possible attitude so as not to be repelled by it.
Considerable patience, persistence and active listening may be needed before this wall of distrust is removed, if it ever can be. At the deathbed of a homosexual, the church has its own sins silently to confess and repent. On the other hand, the crisis of the illness may itself breach the wall from the sufferer's side. For this development, too, the pastor must be prepared in order that the assurance of God's love and ultimate mercy can be provided in a ready, genuine way.
Quality of life
Confronted with a suddenly foreshortened future, persons with AIDS frequently find an appetite for savoring and living fully the days of strength which remain to them. "One thing that I would like people to understand," writes Steve Pieters, a minister who has AIDS,
is that I don't want to think of myself as dying. I want to think of myself as living. Living with AIDS and realistically facing my mortality, but living. I want to tell my friends, "Talk with me. Communicate your feelings about this. Let me communicate mine. And let me have other identities besides [that of] a person with AIDS. "
Referring to those with the disease as "persons with AIDS" rather than AIDS "victims" or "patients" is intended to convey respect for their dignity and multidimensional personhood. Yet even this designation can be limiting. So long as their health permits, there is no reason why such people should not be encouraged to participate fully in the worship life and ministry of the congregation.
Partners and friends
The stereotyped notion that gay men are promiscuous is given the lie by many who have established a lasting covenantal relationship with one other person. This relationship may be as close and as long-lived as that of any heterosexual marriage. When one partner comes down with AIDS, both are in need of pastoral care. Often the surviving partner is in greater need of counseling and concern than would be a spouse of the opposite gender, because family and congregational support in bereavement may be altogether absent. Then, too, the surviving partner has to deal with his own fear of contracting AIDS. Actually, for most pastors the offering of support, consolation and care to the partner is likely to come much more naturally in the situation than he or she might have expected.
Sympathy may also need to be extended to close friends of the deceased. They, too, will be in grief. Many of them will also be members of the gay community who have become, in effect, family for that person. especially if he is estranged from the family of origin. It may be necessary for the pastor to consider holding two services if the family is not willing to face members of the gay and lesbian community. N holding t willing t lesbian Family
"My husband knew John was gay but didn't tell him he knew," John's mother wrote about her husband, "and John was a nervous wreck around his dad. He felt his father would reject him if he knew. That is the reason he didn't know about John's illness. "
Communication in John's family was precariously inadequate even before he came down with AIDS. At least his sister and his mother were aware of his sexual orientation, and he knew that they knew and did not reject him. This made it easier for him to tell them of his illness . In many cases, however, neither parent is aware, at least consciously, that their son is gay.
The parents of a person diagnosed with AIDS usually find out all at once that their son is terminally ill, that he has AIDS, and that he is gay. To the shock of learning that a son is dying is added, for many parents, the denial, anger and guilt often suffered in learning that a son is homosexual. Some, in getting the news of both realities simultaneously, deal only with the terminal illness; the issue of homosexuality is temporarily set aside.
Admitting to parents one's sexual orientation may be traumatic in any circumstances, but being forced to come out because of impending death means greater pain. Little wonder that persons with AIDS often delay informing their parents of their illness and prognosis. Unfortunately, such delay further shortens the already brief time that the family has in which to deal with its turbulent emotions. The situation worsens if the process begins after the son is too weak or too impaired to communicate.
In counseling a person with AIDS, communication with the family is often an issue. Besides looking to the family for understanding and support during this time, a person with AIDS may have nowhere else to seek help in obtaining the extensive physical care required during the final, debilitating stages of the disease.
One can scarcely think of a situation carrying greater emotional stress. Yet the situation can get worse. If the person with AIDS is a husband and father, and the illness forces the first disclosure of bisexuality to the wife and children, the trauma is increased.
The family as a whole, as well as its individual members. may feel great shame and embarrassment. These feelings must be dealt with directly lest they impede family functioning and healthful grieving. Whom dare the family members tell? What should they say? One family maintained even at their son's funeral that he had died of leukemia. There is a strong, understandable tendency for families to isolate themselves. Bridging this estrangement is a crucial task for pastoral and congregational care.
A strong ally of the pastor in caring for a person with AIDS can be the local AIDS network. These networks, which have sprung up in virtually all metropolitan areas, can usually provide information, support groups, referral lists of available services -- both public and private -- and caring volunteers for practical as well as personal support. Although bearing the same gay stigma in the public mind as does the disease, these groups typically are broadly based, receive public as well as private foundation funds, and seek to serve without discrimination all who are affected by AIDS.
Anyone who suspects that he or she may have AIDS, as well as persons with AIDS and their families, may be referred to these agencies for a wide range of assistance. Also, these groups are always grateful to know of pastors who are willing to counsel persons with AIDS. The need is great.
Those in our communities who are suffering from AIDS are, as noted, often severely ostracized on account of their illness and their inferred sexual orientation. Alienation from other people can lead to feelings of alienation from God. This estrangement of persons with AIDS has been compared to that suffered by lepers. There is certainly no more vivid contemporary example of what it means to be considered "unclean. " The ministry of Jesus to such outcasts was scandalous to many. He touched them. He reached across the chasm of sickness, fear and moralism which separated people from one another and from God. "God was in Christ reconciling the world to himself," proclaims St. Paul, "no longer holding people's misdeeds against them, and . . . he has entrusted us with the message of reconciliation" (II Cor. 5:19).
No clearer commission could be given to minister to those with AIDS than that from our Lord: "It is not the healthy that need a doctor, but the sick. Go and learn what that text means, 'I require mercy, not sacrifice'". (Matt. 9:12, 13a).
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