The Need for Hospice Care

I recently went to visit a friend's mother and found that she has been ill. On the day of my visit, my friend's mother was sleeping and I had a chance to talk with her sitter for a few minutes. I learned that she also works at a local hospice in which the majority of patients are in the end stages of AIDS. I was immediately interested in learning whatever she could tell me about the hospice because I understand that I will be required to volunteer either at a hospice or at a school by one of my psychology instructors. Never having known anyone who worked in a hospice, I asked if I could visit the hospice and speak with the lady about her job. While she was quick to agree to speak with me, she did request that I come to her home instead, since she would have to clear such a visit with the social workers in order to protect the privacy of the hospice patients. We made an appointment to meet at her home the following Saturday. I then set off to learn what I could about HIV and AIDS because, until this point, I had never given the subject more than superficial attention.

Definition of HIV/AIDS

In defining HIV/AIDS, the human immunodeficiency virus (HIV) has been found to be caused by Human Immunodeficiency Virus; precursor to AIDS. AIDS is a name that has been created from the actual name of the syndrome, Acquired Immunodeficiency Syndrome (Remafedi, & Lauer, 1995) HIV/AIDS, or Acquired Immune Deficiency Syndrome, refers to the result of an infection with the Human Immunodeficiency Virus Type I, which results in broad suppression of cell mediated immunity from destruction of T-lymphocytes and causes an increase in infection by bacterial, fungal, viral, and protozoal organisms and malignancies, such as Kaposi's sarcoma (Jones, Adenolfi, & Gallis, 1991).

HIV infection produces chronic viral illness resulting in a progressive immunodeficiency in which the severity of the disease is directly related to the degree of immune suppression. It is expected that recent developments in the field of HIV/AIDS may have brought about significant changes in the way this disease is viewed. In a recent publication of the findings of studies published by the National Institute of Allergy and Infectious Diseases (1996) in which the combination of nucleoside analogues and protease inhibitors have been successful in eradicating 99% of the HIV virus from the blood of HIV and AIDS patients (Wright & Shelton, 1993).

History of HIV/AIDS in the United States

When the spector of AIDS first reached the shores of the United States, no one would have believed that there ever would come a day when community health education and support programs would refer to HIV infection and AIDS as a family disease. However, since this disease has reached even small town America, there are now social services support programs offering "local HIV prevention and treatment services, gynecological care, and psychosocial support" (Kelly & Holman, 1993, p. 32). Physicians, nurses, and social workers are now utilizing a team approach in order to institute the necessary social services and medical support needed by a disease that has crept across the United States until it is now in every state in the Union.

This disease is so widespread now, that even small, community based hospitals have enough local AIDS patients to become involved in large clinical trials. Unfortunately, it is expected that budget cuts in Washington will contribute to a new wave of HIV infection as they cut social service budgets (Koan-Johnson, 1993). Both of these circumstances will have a tremendous impact on community health nursing across the country. With the cost of caring for a person with AIDS expected to continue at approximately $38,300 per year, the health care system of the United States is being seriously impacted and will continue to feel that bite for at least another one to two decades (Doan-Johnson, 1993).

Current Trends

In the late 1970's and early 1980's, AIDS patients in the United States were people in large cities, far away, who were practicing unsafe sex and/or using IV drugs with dirty needles (Kelly & Holman, 1993). Small town America was safe, or so they thought. Today, the fastest growing group of Americans with AIDS is women. Most of these women are still in large cities and are black (53%) or Latina (21%), but the face of AIDS around the world is now becoming increasingly feminine (Kelly & Holman, 1993). Since these women are heterosexual women of childbearing age, this is also a significant community health problem and one that cannot be ignored.

The Concept of Hospice

The advent of AIDS has created a need for hospice care around the nation. Many AIDS patients who have reached the final stages of their disease are in a situation in which they cannot be at home, but do not need to be hospitalized. The appropriate setting for them is either in a nursing home or in a hospice. Since the staff in nursing homes is often overwhelmed with the needs of geriatric patients and, since AIDS patients do not need to be exposed to opportunistic infection any more than is absolutely necessary, hospice care, either in a hospice facility or, in some cases, at home is their best alternative. Hospice nurses are familiar with the needs of AIDS patients and can assist the AIDS patient to have a better quality of life during their last months, weeks, or days of life (Fredericks, 1992).

The point at which a patient enters hospice care is difficult for the patient, the family, and even for the staff. This is the point at which they must all confront the fact that this patient has reached the end of his or her life. Hospice home care staff, who have a great deal of experience in this area, recommend that everyone involved face every difficult issue with as much truth as possible (Zerwekh, 1994). Death is difficult, but it is much more difficult when the patient and everyone around him is avoiding the fact that he is dying. They recommend that the main focus of treatment for these patients should be on the quality of life for the patient, rather than on the medical procedures necessary to keep him alive. They also recommend that the patient and their friends and family members bring up as many difficult issues as possible, especially issues surrounding the patient's wishes concerning the end of life. It is paramount that the patient be told the truth, asked for his or her personal choices, and then that those choices be respected (Zerwekh, 1992).

The Interview

Upon my arrival at Mrs. L.'s home, she invited me to sit at the bar between her kitchen and den, and fixed me a cup of coffee. We then settled in to discuss the issues she believes to be most important with respect to her hospice patients.

Janet: Mrs. L., what are the most important issues you believe are associated with local hospice programs?

Mrs. L.: I would like to say that the most important issue we have is related to prejudice in the community, or to increasing numbers of HIV/AIDS patients, but that wouldn't be true. The most important issue we have is never knowing if we are going to be there from one year to the next.

Janet: Why? Is the hospice in danger of being closed?

Mrs. L.: The hospice is always in danger of being closed. Anybody who runs for public office promises to cut the budget and the first place they always cut is in services to patients who have no money and cannot get out to vote. Sometimes, it feels as if these patients are of no use to politicians, so they would be happy if they would hurry up and die.

Janet: That's terrible. How can you continue to work under such pressure. It has to be awful not to know if you are going to have a job or not.

Mrs. L.: It is, but I do what I do because of the patients. A lot of people think that patients who have AIDS got it because of their own bad behavior, either drugs or sex. But that's not true. We have a lot of women patients who got it from their husbands because they were running around on them, and we also have a lot of hemophiliacs who got it from contaminated blood clotting factor back in the 1980s. These patients didn't do anything wrong. They are victims and nobody is going to ever pay for killing them. It is so sad. I just can't see abandoning them, so I stay one more year, and then one more year. I've been doing that for eight years now.

Janet: Mrs. L., you are really selling me on the idea of volunteering at the hospice.

Mrs. L.: You just come on and sign up. I understand that we get extra Federal money when we can show additional community volunteer hours. I think that's why they have that deal with ya'll's psychology class.

Janet: I'll sure look into it. Mrs. L., I want to thank you for your time and for talking to me about what you feel is the most important hospice issue right now.

Mrs. L: You're welcome. Come back any time. And I'll be looking for you at the hospice.

Conclusion

It may well be that HIV/AIDS will no longer be a significant social problem within a few short years. In a March, 1996 Community Alert from the National Hemophilia Foundation, the entire life cycle of the offending virus is shown in detail with an explanation of how nucleoside analogues prevent HIV from establishing the infection in the T cells and how the new protease inhibitors prevent cells that are already infected from creating new particles of the AIDS virus for release into the blood stream. This article reports that at least two clinical test trials have shown that a combination of these drug therapies eradicates the virus in the blood up to 99% (NHF, 1996). Since the since the FDA is ready to grant approval for this drug therapy and since a number of high profile Americans known to be infected with HIV/AIDS have now tested negative for the antibodies in their blood, much of the social stigma of this disease may well be negated. If this is the case, it is unfortunate because other sexually transmitted diseases have been on the rise since attention has been diverted from them toward HIV/AIDS.

References

Doan-Johnson, S. (1993). Predicting the future of HIV/AIDS nursing. Nursing93, 23(6), 48-49.

Fredericks, C.M. (1992). Helping Ben live & die his way. Nursing92, 22(9), 59-64.

Jones, Adenolfi, & Gallis. (1991). Care of the Patient with HIV infection. NC: Glaxo.

Kelly, P.J., & Holman, S. (1993). The new face of AIDS. AJN, 93(3), 26-32.

National Hemophilia Foundation. (1996, March). Community Alert, 3(2), 1-3.

Remafedi, G., & Lauer, T. (1995, Oct.). Survival trends in adolescents with human immunodeficiency virus infection. Arch Pediatric Adolescent Medicine, 149: 1093-1096

Wright, J.E., & Shelton, B.K. (1993). Critical Care Nursing. London: Jones & Bartlett. p. 1146.

Zerwekh, J. (1994). The truth-tellers: How hospice nurses help patients confront death. AJN, aq94(2), 30-34.