Sounding board_____________________________
AIDS does not fit the cancer model of hospice care Theresa M. Stephany, MS, RN, CS
It is no surprise to any hospice worker to hearthat AIDS is a devastating disease. It erodes its victims and their extended families physically, mentally, emotionally and financially. The healthcare bureaucracy does not appear to be prepared to care for these patients and/or is unwilling to do so. For whatever reason, patients and families are left with wide, gaping wounds and there seems no way to get these families what theyneed. In the midst of all this suffering, I predictthat hospice nurses especially those who practice in the patient’s home will face bum Out at a much higher and more severe rate than ever imagined unless something is done soon. I make this grim prediction because I saw myself slowly “going under,” despite my love for hospice, and saw it directly related to my AIDS families. Since I consider myselfto be quite average, I expect that other home —
—
Theresa M. Stephany, MS, RN, CS, ANA-certzjied as a Clinical Specialist in Community Health Nursing, is a home care hospice staff nurse at Kaiser Foundation Hospital,Hayward, California.
care nurses are grappling with the same phenomenon that have troubled me. At first, I did not understand what was happeningto me. I actively sought out the AIDS families to casemanage because I welcomed the challenge and because I felt that my own lesbian lifestyle would blend in comfortably with that of the patient’s (most of our AIDS cases have been gay men). I requested that all AIDS cases be given to me and was delighted when my colleagues complied. Slowly, however, I began to regret that move. I took all the AIDS cases, and I worked with a vengeance, but everything seemed to go wrong. My tried and true remedies and comfort measures did not work with this population. The medications were different, the miseries were different and no one, especially me, seemedto know howto “fix” much ofanything forthese patients. I know that “fixing” things is not somethingthat hospices nurses are supposed to think theycan do, but I readily admit that one of the main reasons that I was drawn to hospice, and surely the reason that I persisted as long as I did, was because there was so much we
The American Journal of Hospice & Palliative Care January/February 1992 Downloaded from ajh.sagepub.com at The University of Iowa Libraries on June 10, 2015
could do to make things better. Most home care nurses become experts at “fixing” pain, improving or alleviating nausea, preventing constipation and generally having more than one trick up their sleeves when the symptoms were miserable ones. I had become adept at maneuvering medications and physical comfort devices and could almost always help people who were dying of cancer. If one drug/treatment
Suddenly, Ifound myself caringfor AIDS patients and nothing worked. didn’t work, there were several others to try. Hope sprung eternal and I was a partof “the big fix.” It was exhilarating and I felt professionally satisfied. Suddenly, I found myselfcaring for AIDS patients and nothing worked. None of the old stand-bys were effective, even for “simple” miseries, like nausea. We tried everything: Corn-
13
pazine, Torecan, Zofran, Reglan, Phenergan, Tigan, THC. The nausea persisted. We tried diet changes, position changes, visualization, relaxation tapes. Still, the nauseapersisted. I tried back rubs, foot rubs, accupressure, accupuncture, even prayer. Nothing worked. Just when I was ready to suggest a hospital admission (or, more likely, when I was ready to turn in my resignation!), the nausea would disappear. Suddenly, just like that, it was gone. I was always pleased, of course, but also frustrated and baffled. Or take the problem of fevers. What was causing his rapid-onset fever? Was it the experimental drug that he was taking last week, the one that seemed to work so well until the side effects became unbearable? Or could this fever be related to the DDI he started three days ago? Infection? Possibly, but where? Everything seems OK, but what about that deceptive killer, PCP? This pneumonia is like no pneumonia I’m familiar with. I can’thear it with my stethoscope, there’s notnecessarily a fever, the patient may not even feel badly. All he may have is a cough. But everyone coughs occasionally, and what if he doesn’t happen to cough while I’m visiting? I feel so responsible when I “miss” this symptom that I couldn’t possibly have “caught.” I know that’s crazy, but I’m accustomed to being able to help. With AIDS, I rarely help. In fact,most of what I’ve learned about cancer deaths is NOT applicable to AIDS, yet cancer is the model that hospices have adopted and that most hospices are trying to adapt to AIDS. I believe thathospice will not be successful and that good nurses will bum out unless the hospice movement realizes NOW that AIDS is a new and different disease, and that our old models will simply not work. AIDS care even palliative AIDS care—cannot be based on what is done for cancer patients. AIDS is too unpredictable, too lengthy, too volatile and too dWerent to be approached as —
—
—
though it were cancer. To do so is to doom home care hospice nurses, who are, let’s face it, the gatekeepers to MDs and hospital admissions, to utter and constant failure. Nurses who are used to being effective helpers will not last long in such an environment.
DOES YOUR LIBRARY SUBSCRIBE
watching AIDS wreak havoc over people’s lives is not fun.
to the
American Journal of Hospice & Palliative
Am I beingseffish? Egotistical? Unrealistic? Maybe I’m all ofthosethings, maybe none. The one thing that I am sure of is that watching AIDS wreak havoc over people’s lives is not fun. Being unable to helpwith anything but “emotional support” (whatever that is) is not enough. AIDS does not respond to the cancermodel ofhospice care. We need new, different, AIDS-specific models. We need to move away from our traditional textbooks and journals and turn to the gay newspapers for information about AIDS. We need new information about the many viruses and fungi thatplague AIDS patients and we need it from AIDS experts, not oncology experts. I challenge and literally beg all hospice workers who have AIDS expertise to come forward and share their practical know-how with the rest of us who are struggling with this disease. I implore all journal editors to look twice at manuscripts that address new models of AIDS care and offer specific information about topics such as CVM treatment, coping in the home, PCP identification in the home, diarthea that persists, and skin changes. AIDS does not work on the cancer model and home care nurses need AIDS-specific help NOWJJ
CareT
If not, ask for a complimentary copy for your librarian and/or library committee
—
American Journal of Hospice
& Palliative Care 470 Boston Post Road
Weston, MA 02193 617/899-2702
Fax: 617/899-4361
...
The American Journal of Hospice & Palliative Care January/February 1992
Downloaded from ajh.sagepub.com at The University of Iowa Libraries on June 10, 2015
AIDS does not fit the cancer model of hospice care Theresa M. Stephany, MS, RN, CS
It is no surprise to any hospice worker to hearthat AIDS is a devastating disease. It erodes its victims and their extended families physically, mentally, emotionally and financially. The healthcare bureaucracy does not appear to be prepared to care for these patients and/or is unwilling to do so. For whatever reason, patients and families are left with wide, gaping wounds and there seems no way to get these families what theyneed. In the midst of all this suffering, I predictthat hospice nurses especially those who practice in the patient’s home will face bum Out at a much higher and more severe rate than ever imagined unless something is done soon. I make this grim prediction because I saw myself slowly “going under,” despite my love for hospice, and saw it directly related to my AIDS families. Since I consider myselfto be quite average, I expect that other home —
—
Theresa M. Stephany, MS, RN, CS, ANA-certzjied as a Clinical Specialist in Community Health Nursing, is a home care hospice staff nurse at Kaiser Foundation Hospital,Hayward, California.
care nurses are grappling with the same phenomenon that have troubled me. At first, I did not understand what was happeningto me. I actively sought out the AIDS families to casemanage because I welcomed the challenge and because I felt that my own lesbian lifestyle would blend in comfortably with that of the patient’s (most of our AIDS cases have been gay men). I requested that all AIDS cases be given to me and was delighted when my colleagues complied. Slowly, however, I began to regret that move. I took all the AIDS cases, and I worked with a vengeance, but everything seemed to go wrong. My tried and true remedies and comfort measures did not work with this population. The medications were different, the miseries were different and no one, especially me, seemedto know howto “fix” much ofanything forthese patients. I know that “fixing” things is not somethingthat hospices nurses are supposed to think theycan do, but I readily admit that one of the main reasons that I was drawn to hospice, and surely the reason that I persisted as long as I did, was because there was so much we
The American Journal of Hospice & Palliative Care January/February 1992 Downloaded from ajh.sagepub.com at The University of Iowa Libraries on June 10, 2015
could do to make things better. Most home care nurses become experts at “fixing” pain, improving or alleviating nausea, preventing constipation and generally having more than one trick up their sleeves when the symptoms were miserable ones. I had become adept at maneuvering medications and physical comfort devices and could almost always help people who were dying of cancer. If one drug/treatment
Suddenly, Ifound myself caringfor AIDS patients and nothing worked. didn’t work, there were several others to try. Hope sprung eternal and I was a partof “the big fix.” It was exhilarating and I felt professionally satisfied. Suddenly, I found myselfcaring for AIDS patients and nothing worked. None of the old stand-bys were effective, even for “simple” miseries, like nausea. We tried everything: Corn-
13
pazine, Torecan, Zofran, Reglan, Phenergan, Tigan, THC. The nausea persisted. We tried diet changes, position changes, visualization, relaxation tapes. Still, the nauseapersisted. I tried back rubs, foot rubs, accupressure, accupuncture, even prayer. Nothing worked. Just when I was ready to suggest a hospital admission (or, more likely, when I was ready to turn in my resignation!), the nausea would disappear. Suddenly, just like that, it was gone. I was always pleased, of course, but also frustrated and baffled. Or take the problem of fevers. What was causing his rapid-onset fever? Was it the experimental drug that he was taking last week, the one that seemed to work so well until the side effects became unbearable? Or could this fever be related to the DDI he started three days ago? Infection? Possibly, but where? Everything seems OK, but what about that deceptive killer, PCP? This pneumonia is like no pneumonia I’m familiar with. I can’thear it with my stethoscope, there’s notnecessarily a fever, the patient may not even feel badly. All he may have is a cough. But everyone coughs occasionally, and what if he doesn’t happen to cough while I’m visiting? I feel so responsible when I “miss” this symptom that I couldn’t possibly have “caught.” I know that’s crazy, but I’m accustomed to being able to help. With AIDS, I rarely help. In fact,most of what I’ve learned about cancer deaths is NOT applicable to AIDS, yet cancer is the model that hospices have adopted and that most hospices are trying to adapt to AIDS. I believe thathospice will not be successful and that good nurses will bum out unless the hospice movement realizes NOW that AIDS is a new and different disease, and that our old models will simply not work. AIDS care even palliative AIDS care—cannot be based on what is done for cancer patients. AIDS is too unpredictable, too lengthy, too volatile and too dWerent to be approached as —
—
—
though it were cancer. To do so is to doom home care hospice nurses, who are, let’s face it, the gatekeepers to MDs and hospital admissions, to utter and constant failure. Nurses who are used to being effective helpers will not last long in such an environment.
DOES YOUR LIBRARY SUBSCRIBE
watching AIDS wreak havoc over people’s lives is not fun.
to the
American Journal of Hospice & Palliative
Am I beingseffish? Egotistical? Unrealistic? Maybe I’m all ofthosethings, maybe none. The one thing that I am sure of is that watching AIDS wreak havoc over people’s lives is not fun. Being unable to helpwith anything but “emotional support” (whatever that is) is not enough. AIDS does not respond to the cancermodel ofhospice care. We need new, different, AIDS-specific models. We need to move away from our traditional textbooks and journals and turn to the gay newspapers for information about AIDS. We need new information about the many viruses and fungi thatplague AIDS patients and we need it from AIDS experts, not oncology experts. I challenge and literally beg all hospice workers who have AIDS expertise to come forward and share their practical know-how with the rest of us who are struggling with this disease. I implore all journal editors to look twice at manuscripts that address new models of AIDS care and offer specific information about topics such as CVM treatment, coping in the home, PCP identification in the home, diarthea that persists, and skin changes. AIDS does not work on the cancer model and home care nurses need AIDS-specific help NOWJJ
CareT
If not, ask for a complimentary copy for your librarian and/or library committee
—
American Journal of Hospice
& Palliative Care 470 Boston Post Road
Weston, MA 02193 617/899-2702
Fax: 617/899-4361
...
The American Journal of Hospice & Palliative Care January/February 1992
Downloaded from ajh.sagepub.com at The University of Iowa Libraries on June 10, 2015
