AIDS and Death
Stephen Puentes, MD

This article is the third in a series written from the conference, "Dying the Good Death," presented December 2, 1997, by the Olive View–UCLA Medical Center, UCLA School of Medicine.

Introduction

The physician's role in helping patients and their loved ones cope with the psychological and spiritual side of terminal illness is perhaps most clearly demonstrated through the changing face of HIV medicine. In 1980, the medical community first began encountering cases of this disease. At the time, it was unidentifiable. A unique population of men--homosexuals--were presenting with Pneumocystis carinii pneumonia.1 These cases were surfacing in the inner cities, and physicians faced with this unknown, deadly disease were scared. In the beginning, just a few cases surfaced in certain areas, but then a devastating number of cases were reported. Many of today's physicians were educated in this environment, and this experience has altered the way medicine has progressed throughout the past two decades.

In the mid-1980s, AIDS was reportable only in patients who had the advanced stages of HIV infection. Thus, for every reported AIDS case, there were approximately five individuals who tested HIV positive.2,3 As the AIDS epidemic continued, the partners of individuals at high risk for the disease were being infected. By the early 1990s, the disease was out of control. The number of new AIDS cases was growing exponentially. It had become clear that this was a major health issue.

An Epidemic

Therapies were, and still are, very limited in AIDS care. If a patient's CD count was high, the physician would simply "watch" the patient. If the CD count was between 200 and 500, drugs were used to treat the disease. If a patient's CD count was less than 200, the physician would begin preparing for the advanced stages of AIDS--the complications and ravages of AIDS that precede death. Having so few choices and facing the emotional as well as physical needs of these patients, physicians were forced to assess and alter the traditional relationship between physicians and dying patients.

In 1995, the AIDS epidemic was completely out of control. It was not unusual for doctors caring for this patient base to sign 10 death certificates each week. At the time, physicians had four drugs to choose from: zidovudine (ZDV or AZT), didanosine (ddI), zalcitabine (ddC), and stavudine (d4T). The medical community did not have much to offer patients dying of AIDS beyond helping them prepare for death as the advanced stages of AIDS took over.

In medical school, physicians were being taught that the main causes of death for men between the ages of 24 and 44 were trauma, heart disease, cancer, and suicide. However, data released in 1992 (an analysis of a data set complete for 1990) predicted that, by the year 2000, AIDS would become the number one cause of death for men in this age range. This disease was also expected to surpass all others by the early 21st century as the number one cause of death for women. Statistics like these made it difficult for the medical community to deny either the severity of the AIDS crisis or the increasingly varied roles physicians were playing in modern medicine.4 According to the Centers for Disease Control and Prevention, in 1994 AIDS became the number one killer of men with HIV infection between the ages of 25 and 44.5

Expanding the Physician's Role

As the AIDS epidemic escalated, physicians were confronted with emotions, both their patients' and their own, that they may never have encountered before at this level. Medical school did not teach physicians about these raw emotions--anger, guilt, fear, shame. Physicians were ill equipped to deal with the overpowering emotions (especially shame) that patients were experiencing. These patients recognized that they had AIDS, and they wanted to know why they had this devastating disease, how they should deal with the guilt, and how they should break the news to their families.

In the early days of the AIDS epidemic, physicians had a difficult time telling their patients not to be worried, that things would be OK. This is a devastating disease, and fear is a dominant emotion. A patient came to me one day and said, "I don't want to die. I'm so mad that I have this disease. I'm so distraught. Why me?" Ultimately, I decided that it is the will to live and an individual's lust for life that causes this reaction. To be at the beach, to be with your sweetheart, to pass another birthday--this is how we measure quality. Patients with AIDS, especially those in the early years of the epidemic, were headed for a known outcome at an unknown time.

One devastating aspect of this disease was that patients were looking to their physicians for information about how long they had to live. Patients would ask, "How long until I die?" Then they would realize that they were going to die young. This realization shocked both patients and physicians. Often, what began as a full physical examination would become a psychology or psychiatric session. Physicians were having to drop one hat to put on another.

Our two greatest life experiences--birth and death--are not consciously experienced, yet each person has these major life events. Patients constantly fear death, but what must be consciously experienced is the time spent between birth and death. We hope for and dream of living life to the fullest, of living life to that last moment before death. The time continuum is the process of moving from birth to death--the time that a person is alive. These are lessons about the meaning of time that dying patients, not medical schools, have taught health care providers.

Alternative Approaches

The challenge of fully addressing the diverse needs of patients who are dying led to the development of a case management approach, which coincided with the growing home health care industry. Throughout the 1980s, home health care was a developing idea, but it gradually became accepted that good service could be delivered outside of the hospital setting. Many issues surround care for the dying patient, and patients in need of home care have psychological and nutrition issues, as well as medical, social service, social work, and spiritual needs. Prolonged exposure to this environment raises many issues of body, mind, and soul.

For example, the cultural aspects of treating patients are often overlooked. How do individuals acknowledge their health, illness, and death? The resulting confusion is evident at the clinics where AIDS patients are treated. In the American health care system, the physician's role is to link science to the individual, with the objective being to make order out of the fear, anger, guilt, and lust for life. Caring for these patients often requires providing spiritual as well as psychological guidance as decisions are made in regard to home health care.

Prior to the availability of combination therapy, the health care provider often witnessed the frightening change in the health of the AIDS patient with advanced disease. Once given an AIDS diagnosis, life expectancy was less than two years in more than two-thirds of individuals.6 Causes of death were opportunistic infections, malignancies, or the advancing stages of AIDS- wasting syndrome. These patients increasingly were spending the time before their deaths sequestered in hospitals, nursing homes, or other institutions. However, many patients want to acknowledge their deaths and to direct physicians to aid them in dying at home. Yet, in a busy clinic environment it is difficult for a patient to communicate this wish to his or her doctor. Because these issues must be addressed, it is the health care establishment's responsibility to acknowledge and deal with some very basic topics. (eg, the role of the "family" physician). Case management was an obvious answer, because it allowed the patients access to appropriate services while managing health cost, by linking patients to physicians, home health coordinators, nursing case managers, home visiting nurses, spiritual counselors, and social workers.

At the end of 1995, major changes in available therapeutics occurred. At the beginning of December 1995, there were four medications. By the middle of the month, the fifth drug available for HIV treatment was approved. The drug was lamivudine (3TC). By the last week of that month, the first of four currently available protease inhibitors, saquinavir, was approved by the Food and Drug Administration. By March 1996, two additional protease inhibitors, indinavir and ritonavir, were approved, and, in early 1997, the last of the four currently available protease inhibitors, nelfinavir, was made available. Combination therapy with high activity against HIV changed the face of HIV care and outcomes. The emphasis of care has, as a result, changed rapidly since these powerful drug combinations have been used.

In the United States, 2 1Ž2 million people die annually. Two-thirds of these individuals succumb to life-threatening illnesses. The medical community is constantly pushing the boundaries of what can be done for patients who are dying. The hypothesis that health care providers can alleviate distress and pain at lesser costs has become a reality. In 1983, the federal government decided to expand its coverage to include cost reimbursement for hospice care. Currently in the United States, 400,000 patients receive hospice care.7 The focus of hospice care is on pain control, and it provides many of the emotional supports needed by AIDS patients. Yet, pain control is often a controversial issue. So-called alternative therapies--such as the use of marijuana and narcotics for discomfort and anxiety management--are hotly contested on clinical as well as ethical levels.

Often, however, the medical approach overshadows the human aspect of caring for the dying. In their drive to prolong survival, physicians can sometimes forget about a patient's emotional needs.

Doctors must look at their patients as human beings. They have become too involved in the health care system, which was originally very simple. Now, however, the health care system is increasingly complex, and AIDS care, which is practically a specialty, becomes more complicated with each new development.

The Changing Face of AIDS

The changing tide of the AIDS epidemic is a result of the new weapons being used to combat this disease. The death rates have dropped dramatically. The introduction of protease inhibitors in 1995 is commonly correlated with this decrease in death rates, but the reality is much more complex. Greater access to health care and a redefinition of the AIDS diagnosis in the past three years have certainly aided in lowering mortality rates. The rapidly declining death rate for AIDS has led many to falsely assume that the epidemic is over. Although death rates have plummeted dramatically, there is currently a very large and growing population of individuals infected with HIV. These individuals will eventually enter the health care system.

Caring for patients with AIDS today is a completely different practice that it was for physicians during the early days of the illness. Currently, there is a greatly improved understanding of virology and of the pathogenesis of this disease, in addition to a major change in predicting life expectancy for patients with HIV. It is no longer possible to put a limit on how long patients will survive, and this change has increased the complexities of HIV care immensely. The health care system now faces a new challenge as it attempts to support the growing number of individuals who will live for several years with the symptoms of HIV and AIDS.

Opportunities for Improvement

Caring for patients with HIV and AIDS has pushed physicians to expand and adapt their skill base. This approach should continue to be a model for training internists and infectious disease specialists. An essential responsibility of physicians caring for dying patients is that they assist patients in an empathic and objective manner as these patients prepare to die. Clinicians must not only acknowledge the pain and suffering experienced by patients with terminal illnesses; they must also aid the patient and the family in recognizing that the dying process is occurring and that it is a natural progression.

Death is a part of life. Grieving and death are experiences that highlight the meaning of life. Pulling together all aspects of the dying process into one network is the goal of case management, and patients with AIDS present the medical community with a unique opportunity to improve quality of care by instituting these care models.

Death is difficult to talk about. Death is difficult to think about. Death is extremely difficult to teach about, let alone learn about. By acknowledging this fact, physicians can best fulfill their clinical responsibilities as they guide their patients toward the end of life.

About the Author

Dr. Puentes is Associate Clinical Professor of Medicine at University of California, Los Angeles, and Assistant Medical Director, Los Angeles County Tuberculosis Control Program, Department of Health Services. Address for correspondence: Stephen Puentes, MD, Los Angeles County Tuberculosis Control Program, 2615 S Grand Ave, Room 507, Los Angeles, CA 90007.

Reference

1. Gottlieb MS, Schroff R, Schanker HM, et al. Pneumocystis carinii pneumonia and mucosal candidiasis in previously healthy homosexual men: Evidence of a new acquired cellular immunodeficiency. N Engl J Med 1981;305(24):1425-1431.

2. Quinn TC, Cannon RO, Glasser D, et al. The association of syphilis with risk of human immunodeficiency virus infection in patients attending sexually transmitted disease clinics. Arch Intern Med 1990;150:1297-1302.

3. Hahn RA, Onorato IM, Jones TS, Dougherty J. Prevalence of HIV infection among intravenous drug users in the United States. JAMA 1989;261:2677-2684.

4. Maugh TH II. AIDS no. 1 cause of death of young men in California. (Centers for Disease Control and Prevention report). Los Angeles Times. June 16, 1993:A1.

5. Update: Mortality attributable to HIV infection among persons aged 25-44 years--United States, 1994. MMWR Morb Mortal Wkly Rep 1996;45(6):121-125.

6. Horgan J. Seeking a better way to die: Role of health care providers. Sci Am 1997;276(5):100- 105.

7. First 500,000 AIDS cases--United States, 1995. MMWR Morb Mortal Wkly Rep 1995;44(46):849-853.

Annals of Long-Term Care - ISSN: 1524-7929 - Volume 6 - Issue 10 - October 1998