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AIDS units: Is there still a need?
HIV/AIDS Units: Is There Still a Need? Cliff Morrison, ACRN, FAAN
O v e r the past few years, there has been an escalating debate over the future of specialized inpatient units for the care and treatment of persons with HIV and AIDS. The debate has centered on whether there is still a need for these units. Although the national economy has improved significantly over the past decade, health care has not fared as well. Inflation in health care today remains the highest of any aspect of the national economy, and after the defeat of health care reform, early in President Clinton's first term, health care is perceived by the general public as having gone from bad to worse. Managed care is rapidly becoming the foundation for health care of the masses in this country today, and many of us, particularly the consumer public, have felt that the quality of care has suffered as well. Over the past decade, we have seen a great deal of downsizing, closures, consolidating, and "outsourcing" of the different components of care for all illnesses and at all levels of care. One of the few areas in which we saw very few changes in services was in the care of persons with HIV disease. This was probably due in part to the newness of the disease, the fact the programs were so different and unique and because, by in large, they were viewed as being successful and meeting a great need by consumers, providers, and policy makers. Early in the HIV epidemic, there was optimism, or at least some speculation, that the epidemic would be short lived or that if it did linger, it would quickly become more manageable and more chronic in nature. To some extent, the latter did occur, and as time went on, it became more apparent that HIV was not something that was going to go away soon, nor would it become more manageable as quickly as we originally thought it would. So, in light of all of this,
why is there now a shift in our thinking and attitudes toward the care of this population and an emphasis being placed on closing these units and in mainstreaming or integrating care and services? The issues are numerous and very complex, but it would be helpful to review some history and look at why we developed the units and why we are now debating whether they should be closed. Dedicated units were an idea that began early and evolved rapidly. The first discussions included the concept of AIDS units as isolation wards, a way of keeping the patients away from everyone and denying, or not dealing with, the real issues. There was an immediate outcry from people with AIDS and from some providers concerning this approach and, at least in the San Francisco area, the evolution began to move in a more positive direction. At San Francisco General Hospital, a multidisciplinary committee was formed that began examining the available information, and there were open forums to discuss the issues and talk about how people felt. Out of this, the idea for an inpatient nursing unit for the care of persons with AIDS took on a completely different significance. The unit was designed with the patient, their family (and family of choice), as well as the providers in mind. The emphasis was in providing high-quality compassionate care. Providers that wanted to work with this population would be given the opportunity to do so. We would be able to centralize resources, develop clinical expertise, and further the concept of patient-centered
Cliff Morrison, ACRN, FAAN, is the Northern California Regional Director of Staff Development, at Telecare Corporation, Alameda, California
JOURNAL OF THE ASSOCIATION OF NURSES IN AIDS CARE, Vol. 9, No. 6, November/December 1998, 16-18 Copyright 9 1998 Association of Nurses in AIDS Care
Editorial
care (Viele, Dodd, & Morrison, 1984). Some of the additional benefits for having these units were that they could be used as laboratories not only for clinical research but also for biomedical and social research. In nursing, these specialized units also could be used to pilot new approaches to patient care and implement new models. Early in the development of the AIDS units, we gained a significant amount of new knowledge, particularly about working with the gay community. New partnerships were developed with community groups, and for the first time, c o m m u n i t y involvement went beyond advisory committees and on to involvement of different aspects of the community in the formal programs (i.e., the Shanti Counseling program on 5B/5Aat San Francisco General Hospital). The use of volunteers to meet many of the patient needs and the involvement of community groups to raise money, provide basic services, and provide emotional support for patients also became part of the philosophy of the original units. All of this served to strengthen the need for these specialized units for care. The media recognized almost immediately the significance of this and did some of the first positive reporting on the epidemic the country had experienced. In addition, this appeared to lessen the negative impact on the gay community. Within a short period of time, the gay community began to be viewed as taking responsibility and some level of control of the situation, as well as working within the system to improve care and conditions for people with AIDS. From the beginning, there was a debate whether to integrate or mainstream patients with AIDS throughout the institution or to create specialized units. The issue of integration versus specialization was, and still is, very multifaceted. It is important to keep in mind that some of the nation's first specialized AIDS nursing units were originally designed as interim care models. The HIV care unit at San Francisco General Hospital was developed with the goal that within 1 to 2 years, caregivers would become more comfortable with and more knowledgeable about the complex issues related to the care of persons with HIV disease. AIDS patients could then receive quality care anywhere in the institution. The specialized unit would have fulfilled its purpose and could then be closed or transitioned to something else such as oncology or hospice units (Morrison, 1991). It is also important to note that it has
17
always been the goal to close these units when they were no longer needed. Ten years ago, we began to realize that the populations that would need this kind of specialized care were becoming too numerous and that the specialized units would not be able to meet the demands of the rapidly growing numbers. It was also felt at that time that the units were still needed because they would serve as an anchor or a base of operation within an institution. The AIDS unit would be the center with the expertise and the resources to provide consultation and care for patients in other areas of the hospital. As other populations began to emerge in the epidemic, there was a shift in the focus on many of these units. In recent years, the advent of improved antiviral drug regimens rapidly have changed and moved us toward the goal of dealing with HIV as a manageable chronic disease. In addition, in many areas of the country, the census on these inpatient units has been falling steadily over the past few years. Primarily, this has been due to new and improved treatments and new scientific advances. Now this raises new questions: Is this approach to care cost-effective at this time? Do we still need this kind of specialized care? Is it reasonable to continue to treat HIV separately? And with the shift to ambulatory care, do we still need this level of specialized inpatient services? These and many other questions are being asked at many different levels (see Napper, 1998, this issue). So, what are some of the reasons being offered to keep the units open at this time? Many providers and people with HIV feel that these units continue to make a significant contribution, particularly in providing high quality of care, and continue to set the standard of care and treatment for any particular institution. One issue that has existed since the first units opened relates to the attitudes of care providers in other areas. We still hear reports of jealousy and perceived favoritism toward AIDS specialty units by providers in other areas. There continues to be resentment toward the patients, the kinds of specialized services that have developed and the perception of this new subspecialty and the patients, as well as the staff, as being in some way elite. In actuality, this is a very interesting contradiction when you review the issues and reasons for establishing the units to begin with. The fact still remains that many people with HIV are still falling through the cracks in the
18 JANAC Vol. 9, No. 6, November/December 1998
health care system. The populations are now very different and much more diverse, with increasing numbers of women, children, drug users, and minorities being affected. The shared philosophy and general approach to patient care are the most important aspects of a dedicated unit as well as the continued desire to work with persons with HIV disease. The complex issues related to pain management, emotional support, and discharge planning with a comprehensive approach to case management and individualized care, are very strong arguments in favor of keeping dedicated units open. After approaching two decades of experience in working with this population, we still hear alarming stories of patients encountering prejudice, judgments on lifestyles, and a basic lack of knowledge and understanding, by professional providers, related to the care and treatment of persons with HIV disease in areas in which there are no specialty services. These issues point in the direction of continued denial on the part of a large segment of the public and of professional providers as well. Treatment regimens today have become very complex, and it takes experience and a great deal of knowledge to provide the adequate level of care for these patients. There are constant treatment and protocol changes and new developments that are very complicated and specific. The educational needs of providers, people living with HIV disease, and their support networks in the community create a need for a base for current information on a variety of issues related to care and treatment. Inpatient units, along with the rest of the community-based continuum, serve to support this effort. All of this is surprising, and somewhat alarming, particularly because these are some of the very issues that we have been dealing with since the beginning of the epidemic. In addition, what are some of the implications for the nursing care of persons with HIV, and what are some of the policy implications for nursing? First, the quality-of-care issues are the same as they have been all along--humane, compassionate care by knowledgeable providers who want to work with this population. One major advantage to having specialized
nursing units is that it provides an opportunity in which expertise can be encouraged and developed. Patient care will always improve when there are providers that have chosen to work in a specialized area with a special population. The specialty units provide an opportunity to pilot and experiment with new models of care and to increase and develop new areas of expertise in patient care, education, program planning, and development. One of the best arguments for continuing these units at this time is that there is still a great need for continued research in all aspects of HIV care and treatment. We need to take the time to look at the accomplishments of these units, examine them individually and collectively, and review what we have learned from these experiences. The day will come when there is no longer a need for these kinds of specialty units, but that day is not here yet. Let us continue to advocate for specialty units for the care of persons with HIV disease, and let us continue to advocate for good quality care for all patients. Now is the perfect time to pause and begin to examine these issues and to ask the questions that are ripe for research and that are begging to be investigated. This is a true challenge for health care and especially for HIV/AIDS nursing. Let us begin the new millennium with renewed commitment to the challenges that face society, health care, and our profession. The development of HIV/AIDS units came directly from nursing. Maybe we need to take responsibility and a leadership role, once again and begin to examine the issues from a historical as well as a contemporary perspective and make specific policy for the future.
References Morrison, C. (1991). Creating and managing a therapeutic environment: Institutional settings. In J. Durham & E Cohen (Eds.), The person with AIDS: Nursing perspectives. New York: Springer. Napper, R. (1998). Census trends in AIDS specialty units. Journal of the Association of Nurses in AIDS Care, 9(6), 46-50. Viele, C., Dodd, M., & Morrison, C. (1984). Caring for Acquired Immune Deficiency Syndrome patients. Oncology Nursing Forum, II(3), 56-60.
O v e r the past few years, there has been an escalating debate over the future of specialized inpatient units for the care and treatment of persons with HIV and AIDS. The debate has centered on whether there is still a need for these units. Although the national economy has improved significantly over the past decade, health care has not fared as well. Inflation in health care today remains the highest of any aspect of the national economy, and after the defeat of health care reform, early in President Clinton's first term, health care is perceived by the general public as having gone from bad to worse. Managed care is rapidly becoming the foundation for health care of the masses in this country today, and many of us, particularly the consumer public, have felt that the quality of care has suffered as well. Over the past decade, we have seen a great deal of downsizing, closures, consolidating, and "outsourcing" of the different components of care for all illnesses and at all levels of care. One of the few areas in which we saw very few changes in services was in the care of persons with HIV disease. This was probably due in part to the newness of the disease, the fact the programs were so different and unique and because, by in large, they were viewed as being successful and meeting a great need by consumers, providers, and policy makers. Early in the HIV epidemic, there was optimism, or at least some speculation, that the epidemic would be short lived or that if it did linger, it would quickly become more manageable and more chronic in nature. To some extent, the latter did occur, and as time went on, it became more apparent that HIV was not something that was going to go away soon, nor would it become more manageable as quickly as we originally thought it would. So, in light of all of this,
why is there now a shift in our thinking and attitudes toward the care of this population and an emphasis being placed on closing these units and in mainstreaming or integrating care and services? The issues are numerous and very complex, but it would be helpful to review some history and look at why we developed the units and why we are now debating whether they should be closed. Dedicated units were an idea that began early and evolved rapidly. The first discussions included the concept of AIDS units as isolation wards, a way of keeping the patients away from everyone and denying, or not dealing with, the real issues. There was an immediate outcry from people with AIDS and from some providers concerning this approach and, at least in the San Francisco area, the evolution began to move in a more positive direction. At San Francisco General Hospital, a multidisciplinary committee was formed that began examining the available information, and there were open forums to discuss the issues and talk about how people felt. Out of this, the idea for an inpatient nursing unit for the care of persons with AIDS took on a completely different significance. The unit was designed with the patient, their family (and family of choice), as well as the providers in mind. The emphasis was in providing high-quality compassionate care. Providers that wanted to work with this population would be given the opportunity to do so. We would be able to centralize resources, develop clinical expertise, and further the concept of patient-centered
Cliff Morrison, ACRN, FAAN, is the Northern California Regional Director of Staff Development, at Telecare Corporation, Alameda, California
JOURNAL OF THE ASSOCIATION OF NURSES IN AIDS CARE, Vol. 9, No. 6, November/December 1998, 16-18 Copyright 9 1998 Association of Nurses in AIDS Care
Editorial
care (Viele, Dodd, & Morrison, 1984). Some of the additional benefits for having these units were that they could be used as laboratories not only for clinical research but also for biomedical and social research. In nursing, these specialized units also could be used to pilot new approaches to patient care and implement new models. Early in the development of the AIDS units, we gained a significant amount of new knowledge, particularly about working with the gay community. New partnerships were developed with community groups, and for the first time, c o m m u n i t y involvement went beyond advisory committees and on to involvement of different aspects of the community in the formal programs (i.e., the Shanti Counseling program on 5B/5Aat San Francisco General Hospital). The use of volunteers to meet many of the patient needs and the involvement of community groups to raise money, provide basic services, and provide emotional support for patients also became part of the philosophy of the original units. All of this served to strengthen the need for these specialized units for care. The media recognized almost immediately the significance of this and did some of the first positive reporting on the epidemic the country had experienced. In addition, this appeared to lessen the negative impact on the gay community. Within a short period of time, the gay community began to be viewed as taking responsibility and some level of control of the situation, as well as working within the system to improve care and conditions for people with AIDS. From the beginning, there was a debate whether to integrate or mainstream patients with AIDS throughout the institution or to create specialized units. The issue of integration versus specialization was, and still is, very multifaceted. It is important to keep in mind that some of the nation's first specialized AIDS nursing units were originally designed as interim care models. The HIV care unit at San Francisco General Hospital was developed with the goal that within 1 to 2 years, caregivers would become more comfortable with and more knowledgeable about the complex issues related to the care of persons with HIV disease. AIDS patients could then receive quality care anywhere in the institution. The specialized unit would have fulfilled its purpose and could then be closed or transitioned to something else such as oncology or hospice units (Morrison, 1991). It is also important to note that it has
17
always been the goal to close these units when they were no longer needed. Ten years ago, we began to realize that the populations that would need this kind of specialized care were becoming too numerous and that the specialized units would not be able to meet the demands of the rapidly growing numbers. It was also felt at that time that the units were still needed because they would serve as an anchor or a base of operation within an institution. The AIDS unit would be the center with the expertise and the resources to provide consultation and care for patients in other areas of the hospital. As other populations began to emerge in the epidemic, there was a shift in the focus on many of these units. In recent years, the advent of improved antiviral drug regimens rapidly have changed and moved us toward the goal of dealing with HIV as a manageable chronic disease. In addition, in many areas of the country, the census on these inpatient units has been falling steadily over the past few years. Primarily, this has been due to new and improved treatments and new scientific advances. Now this raises new questions: Is this approach to care cost-effective at this time? Do we still need this kind of specialized care? Is it reasonable to continue to treat HIV separately? And with the shift to ambulatory care, do we still need this level of specialized inpatient services? These and many other questions are being asked at many different levels (see Napper, 1998, this issue). So, what are some of the reasons being offered to keep the units open at this time? Many providers and people with HIV feel that these units continue to make a significant contribution, particularly in providing high quality of care, and continue to set the standard of care and treatment for any particular institution. One issue that has existed since the first units opened relates to the attitudes of care providers in other areas. We still hear reports of jealousy and perceived favoritism toward AIDS specialty units by providers in other areas. There continues to be resentment toward the patients, the kinds of specialized services that have developed and the perception of this new subspecialty and the patients, as well as the staff, as being in some way elite. In actuality, this is a very interesting contradiction when you review the issues and reasons for establishing the units to begin with. The fact still remains that many people with HIV are still falling through the cracks in the
18 JANAC Vol. 9, No. 6, November/December 1998
health care system. The populations are now very different and much more diverse, with increasing numbers of women, children, drug users, and minorities being affected. The shared philosophy and general approach to patient care are the most important aspects of a dedicated unit as well as the continued desire to work with persons with HIV disease. The complex issues related to pain management, emotional support, and discharge planning with a comprehensive approach to case management and individualized care, are very strong arguments in favor of keeping dedicated units open. After approaching two decades of experience in working with this population, we still hear alarming stories of patients encountering prejudice, judgments on lifestyles, and a basic lack of knowledge and understanding, by professional providers, related to the care and treatment of persons with HIV disease in areas in which there are no specialty services. These issues point in the direction of continued denial on the part of a large segment of the public and of professional providers as well. Treatment regimens today have become very complex, and it takes experience and a great deal of knowledge to provide the adequate level of care for these patients. There are constant treatment and protocol changes and new developments that are very complicated and specific. The educational needs of providers, people living with HIV disease, and their support networks in the community create a need for a base for current information on a variety of issues related to care and treatment. Inpatient units, along with the rest of the community-based continuum, serve to support this effort. All of this is surprising, and somewhat alarming, particularly because these are some of the very issues that we have been dealing with since the beginning of the epidemic. In addition, what are some of the implications for the nursing care of persons with HIV, and what are some of the policy implications for nursing? First, the quality-of-care issues are the same as they have been all along--humane, compassionate care by knowledgeable providers who want to work with this population. One major advantage to having specialized
nursing units is that it provides an opportunity in which expertise can be encouraged and developed. Patient care will always improve when there are providers that have chosen to work in a specialized area with a special population. The specialty units provide an opportunity to pilot and experiment with new models of care and to increase and develop new areas of expertise in patient care, education, program planning, and development. One of the best arguments for continuing these units at this time is that there is still a great need for continued research in all aspects of HIV care and treatment. We need to take the time to look at the accomplishments of these units, examine them individually and collectively, and review what we have learned from these experiences. The day will come when there is no longer a need for these kinds of specialty units, but that day is not here yet. Let us continue to advocate for specialty units for the care of persons with HIV disease, and let us continue to advocate for good quality care for all patients. Now is the perfect time to pause and begin to examine these issues and to ask the questions that are ripe for research and that are begging to be investigated. This is a true challenge for health care and especially for HIV/AIDS nursing. Let us begin the new millennium with renewed commitment to the challenges that face society, health care, and our profession. The development of HIV/AIDS units came directly from nursing. Maybe we need to take responsibility and a leadership role, once again and begin to examine the issues from a historical as well as a contemporary perspective and make specific policy for the future.
References Morrison, C. (1991). Creating and managing a therapeutic environment: Institutional settings. In J. Durham & E Cohen (Eds.), The person with AIDS: Nursing perspectives. New York: Springer. Napper, R. (1998). Census trends in AIDS specialty units. Journal of the Association of Nurses in AIDS Care, 9(6), 46-50. Viele, C., Dodd, M., & Morrison, C. (1984). Caring for Acquired Immune Deficiency Syndrome patients. Oncology Nursing Forum, II(3), 56-60.