AIDS Patients: Their Right to Know

HIV-AIDS was recognized as a serious threat to human life in Africa (certainly in Eastern Africa) in the early 1980s. Since then, although there are still major problems of open and subtle discrimination to tackle, we must admit that some improvements have taken place in the attitudes of society as a whole towards people infected with the virus or ill with AIDS. There are changes in social perception and handling of these individuals: from indiscriminate blame and social stigma that originally prevailed to a degree of acceptance; and from fearful avoidance and isolation to a degree of acceptance and dignified medical and social care.

While we must continue to struggle for a fully human and dignified treatment of AIDS patients with regard to their rights in every sphere of life, the time has now come to pay closer attention to an area in the crisis that has not received the consideration it deserves, probably because of its specialized nature. I am referring to the right of the patient to know about their condition from medical professionals and the duty of realistic and truthful counseling from religious and other helping professionals. I think that this is an area that is as important as all the others in the struggle for assuring the dignity of people with HIV-AIDS.

Let an example illustrate what I mean. Early this year, I took a nephew (whom I shall call Dan) to a local clinic. Dan had for some time been complaining of frequent fevers, a persistent cough and other ailments. At the time I took him to the clinic in January, his condition was quite bad. The Medical Assistant (MA) on duty examined him and prescribed some medication which he asked Dan to take at home. Having dismissed Dan, the MA called me into his office and said he was certain Dan was HIV+ and that, moreover, he was an advanced case of AIDS. But he strictly instructed me not to tell Dan about his terminal condition, as “the reaction of people with this illness is unpredictable,” the MA said, and added that if Dan knew his condition, chances were he would commit suicide.

Dan died about six months later leaving behind a wife and a child. But he died without putting his affairs in order for them or for the other members of his family because all along he did not think his illness to be terminal. Obeying the MA’s instructions, I too did not tell Dan of his terminal condition because I knew that what the MA told me had indeed happened before with some AIDS patients. I did not want to see this happen with Dan. Nevertheless, since Dan’s death I have been asking myself the question whether withholding this information from him was the right and proper thing to do. Do cases of people who committed suicide after being advised of their AIDS condition justify institutionalizing silence as a general way of approach?

I have also been reading up on the issue. The literature has been emphatic that each person faces the reality of dying in different ways and that there is no standard way doctors, clergy, social or hospice workers can apply to every terminal patient. However, in my reading I have come to the conclusion that in principle, upon certain diagnosis, patients with AIDS should be told, in a sensitive but truthful way, that their condition is indeed terminal. They are also entitled to the same courtesy during counseling by their religious ministers. In this way, they can make the best of their remaining days as well as perhaps put their material, emotional, and spiritual affairs in order before the end comes. This latter point should be of special interest to religious ministers.

This conclusion is strengthened in my mind by observing how Africans traditionally approach death. In the village in which I have worked for a long time as a priest, death is not a sanitized, hidden, hush-hush affair that I notice, for example, in the United States, where I now temporarily reside and work. In my village of Bukama in north-western Tanzania, the process of dying and death itself are “public” affairs, open to relatives and friends who are encouraged - and even required - to be present with the patient. Staying with the dying person, they communicate with him or her, often non-verbally but sometimes also vocally, about the true nature of his or her illness. He or she reads the inevitable in their faces and is thus emotionally helped to accept it by their empathy. He or she knows he or she is not alone even, and especially, at this crucial hour. The patient is told by this presence that he or she is still an important part of the community and is needed. This is a form of traditional counseling that proved its worth over many centuries.

Today, circumstances outside the rural areas like Bukama and elsewhere in Eastern Africa have changed. These close-knit family and village relationships are vanishing rapidly. And, in the case of AIDS, at any rate, many of the young people die away from home, in the cities and towns of the region where they have no relatives and few friends, and are usually brought to their villages as corpses only for burial. Else, they are carried home unconscious and at the point of death. So the traditional method of accompaniment in the dying process is proving more and more irrelevant by force of circumstances. Closest to the dying persons today seem to be physicians and religious ministers working as hospital chaplains, or social or hospice helpers where these are available. It seems to me that now all of these professionals ought to take on this responsibility.

But this is not being done to a satisfactory degree. In an excellent recent article in The New Yorker magazine called “Dying Words,” Dr. Jerome Groopman (see ) explains how it has the practice with doctors in the past not to reveal to their patients that they were dying. An oncologist, Groopman writes in reference to cancer, which I think is similar to AIDS in its psychological and emotional effects on the patient. Both diseases are usually slow and painful dying processes. Groopman writes that in the US, “More than forty per cent of oncologists withhold a prognosis from a patient if he or she does not ask for it or if the family requests that the patient not be told. A similar number [when asked] speak in euphemisms, skirting the truth.” According to Groopman, the situation is the same or worse in Europe.

Groopman speaks with some approval about the usefulness of reviving in some form or other the practice of “the art of dying” or rather, of helping people to die, cultivated in medieval religious circles in view of the desire for a “good death.” It prepared people to accept the inevitability of personal death with psychological and spiritual maturity. Again, this should important for religious ministers who must prepare their dying faithful for the Beyond. Groopman suggests that contemporary physicians as well might learn that although they are in the business of prolonging life, they cannot conquer death. They must (a) first of all learn to acknowledge where necessary that a patient with a terminal illness is going to die, and that this is not a reflection of failure on the physician’s part, and (b) learn to impart the news kindly but truthfully to the patient and his or her family if available.

Everyone in the helping professions must realize, as Joseph and Laurie Braga have put it, that “Death is not an enemy to be conquered or a prison to be escaped. It is an integral part of our lives that gives meaning to human existence. It sets a limit to our time in this life, urging us on to do something productive with that time as long as it is ours to use” (see E. Kubler- Ross, Death: The Final Stage of Growth, NY 1975, p. x). Even an AIDS patient can do something productive with the time that remains for him or her to use. He or she can make a difference as many HIV+ and AIDS victims have proved in their last days educating society - especially the youth - on issues of preventing the virus’s spread.

The most difficult thing is how to break the news to the person in question. Again, perhaps the barriers are much bigger with the doctor or minister than with the patient. Here again the Bragas are helpful. The question that we have to digest before making any move to break the news in every case is: How would you talk to a loved one who is dying? What would you talk about? Approached in this way, the step becomes easier to take and the response perhaps less devastating as we might initially imagine.