AIDS and hospice Charles E von Gunten, MD Jeanne Martinez, RN Sigmund A. Weitzman, MD Jamie Von Roenn, MD
Abstract
Introduction
Which AIDS patients should be admUted to hospice programs? Many health care professionals feel that any anti-viral drug or treatment directed against the opportunistic infections characteristic of AIDS to be incompatible with hospice philosophy. Others argue that inclusion of AIDS patients blurs the distinction between hospice and community service programs. We argue that achieving consensus on this issue is best served by focusing on the defining characteristic of hospice programs the care of the dying. Consensus is not served by dwelling on the specific palliative or supportive measures used to achieve the hospice goal. We suggest a framework by which AIDS patients may be accommodated in existing hospice programs while maintaining hospice program integrity. It is furthersuggested that these may be used for the consideration of any patient for hospice care.
The hospice movement in the U.S. has undergone growth and widespread dissemination in the past decade. Patients generally must have a life expectancy of six months or less and acknowledge and accept their incurability to be admitted to a hospice. There is general consensus on the goals of hospice: symptomatic and supportive care of the terminally ill and their families biologic or chosen.’ In many hospice programs, particularly in the U.S., the mission of hospice has expanded to serve not only cancer patients, but dying patients in general.’ While this broadeninghas extended the benefits of hospice philosophy to many patients, it has also brought the problem of determining prognosis in nonmalignant disease and of deciding which dying patients hospices serve best. AIDS patients represent a particularly troubling example. Many, if notmost, hospice programsnowaccept AIDS patients, at least in principle.2 This reflects the fact that the disease is ultimately fatal at the present time. However, the course of the disease is variable, unpredictable in a given patient, and rapidly changing as new treatments become available. In fact, many healthcare workers have begun tothink ofAIDS as a chronic condition. In the interest of best serving AIDS patients, while maintaining the integrity of hospice, it is imperative that a consistent and rational approach be
—
Charles F. von Gunten, MD, PhD, is currently finishing his postgraduate training in internal medicine at Northwestern University, Chicago, Illinois. Jeanne Martinez, RN, is Clinical Nurse Manager, Northwestern Memorial Hospice, Chicago, Illinois, and board member of the Illinois State Hospice Organization. Sigmund A. Weitzman, MD, is Chief of the DivisionofHematology/Oncology,Department ofInternalMedicine, Northwestern University, Chicago, Illinois. Ja,nie Von Roenn, MD, is an Oncologist at Northwestern University, andMedicalDirector, Northwestern Memorial Hospice, Chicago, Illinois.
developed. It is the purpose of this article to discuss this issue and propose a framework for how AIDS patients can be accommodated in hospice.
many healthcare workers have begun to think ofAIDS as a chronic condition.
—
The American Journal of Hospice & Palliative Care, July/August 1991 Downloaded from ajh.sagepub.com at Bobst Library, New York University on May 8, 2015
The current situation AIDS patients have been admitted to hospice programs during what were clearly the end-stages of their illness. Theiraverage length-of-stay inhospice was short Amo reports an average length-of-stay of 47 days for AIDS patients in the San Francisco AIDS Home Care Program in l984-85.~Compare this with the 59 day mean length-ofstay for cancer patients reported by the National Hospice Organization.4 Isthe treatment of opportunistic diseases associated with AIDS palliative? AIDS patients in some hospices am offered treatment with antibiotics.5 Other programs consider such therapy to contradict fundamental hospice principles. This illustrates a widelyperceived dilemma. How can the best medical care for AIDS patients be provided while stifi maintaining the integrity of hospice? Advances in therapeutics and overall impmvement in pmgnosis have made it more difficult than ever to determine
17
when hospice admission is advisable for persons with AIDS. Published opinion on the subject of admission criteria is generally sparse and disparate. Some hospices have applied existing hospice admission criteria to AIDS patients without modification. The patient must have a prognosis of less than six months and relinquish all treatment specific to the AIDS diagnosis, i.e. prophylactic medications, medications for specific opportunistic infections, malignancies, or antiviral agents. The result is a three to five week length-ofstay.3’6’7 Bulkin et al6 report that 35 percent of all referrals were considered appropriate hospice candidates using these narrow criteria. Of those accepted, 35 percent diedprior to admission. Perhaps some patients whowould have been well-served are excluded. In response to the perception that prognosis for individual AIDS patients cannot easily be predictedand concern that hospices services are not offered early enough in the course of the disease, some programs have advocated a broad interpretation of hospice philosophy.8’9 Even themost aggressive treatments for AIDS patients are ultimately palliative, as they do not cure the underlying immune deficiency. Hence, the care provided by the hospice team is relevant from the first day of diagnosis.’0 Given the current estimates for number ofpatients with AIDS and their increasing longevity after diagnosis, widespread adoption of this policy would swamp existing hospice programs with large numbers of relatively healthy people. Under such a policy, hospice programs would differ little from a general community service agency. However, the case management style of hospice programs might offer a valuable model for community care of AIDS patients. AIDS and hospice The most important task in developing a consensus is to emphasize the
moral and philosophical dimensions which distinguish hospice care from a social service agency. Hospice programs should care only for those who acknow-
Hospice programs should care onlyfor those who acknowledge their imminent death and are preparing for it. ledge their imminent death and are preparing for it. The imperative which drives the advocates of hospice care for AIDS patients is the acknowledgment that AIDS is ultimately fatal. This is a crucial point in common with the admission of cancer patients to hospice. Consensus will not be achieved by listing or codifying the modalities which are used to achieve hospice goals, as some hospice programs have suggested.6 Medical interventions should be evaluated for their ability to provide meaningful symptom relief. Any policy on AIDS admission criteria must acknowledge the fact that the palliation of AIDS will change as further advances are made in AIDS treatment. There has been a similar evolution in palliative cancer therapy. Aggressive radiotherapeutic and surgical interventions are now considered consistent with hospice care if their intent is palliative. Forexample, pinning ofbroken hips orradiation ofpainfulbony metastases are acceptable in the hospice setting if their primary intent is symptom relief and maintenance of function and quality of life. To focus on the specific treatment modalities or drugs as some have advocated is to miss the point of palliative medical treatment within hospice. The criteria for acceptable therapies in the hospice program should be their intent and function; do they relieve symptoms and improve quality of life?
Adequate prognostication for AIDS patients is a separate problem. The variable nature of the illness has been widely acknowledged. Clark et a18 have suggested that a “death trajectory” might be definedto helpdetermine the best time for hospice admission. Data to support such a concept are still limited. However, clinical experience suggests several things which are generally associated with poor outcome: multiple recurrent opportunistic infections, recurrent refractory HIV related lymphoma or refractory wasting.4’6’8 In addition, there are patients who refuse further treatment. Similar situations are encountered in evaluating cancer patients for hospice. In this regard it ishelpful to remember that we are poor predictors of death in cancer patients in general4, let alone in other terminal illnesses. Generally we are overly optimistic.4’6 A goal for future research should be to develop protocols to aid prognostication for all terminally ill patients. Reimbursement Reimbursement for care of patients with AIDS is a majornational concern. Hospice is no exception. Approximately 40 percent of hospices in the U.S. receive a large proportion of reimbursement from the Medicare hospice benefit. States which have adopted the Medicaid hospice benefit must, under current law, provide the same reimbursement through Medicaid as Medicare provides. Hospice care in the U.S. has evolved to meet the needs of elderly cancer patients inresponse to the introduction of the hospice Medicare/Medicaid benefit. Admission of AIDS patients does not easily fit that structure. For hospice programs who rely predominately on Medicare and Medicaid reimbursement, the care of AIDS patients is financially precarious. Providing palliation for AIDS patients with new and expensive drugs under the current benefit is often
The American Journal of Hospice & Palliative Care, July/August 1991
Downloaded from ajh.sagepub.com at Bobst Library, New York University on May 8, 2015
impossible. In addition to medications, reimbursement must cover routine inpatient care, home care, respite care, and durable medical equipment. The issue of reimbursement for care of AIDS patients in an issue that no state has yet resolved. Since many insurance companies have hospice reimbursement policies which mirror those of Medicare, the Medicare reimbursement mechanism is of profound importance to the financial health and continued existence of many hospice programs. This factor keeps many hospice programs from admitting AIDS patients they would otherwise admit. Framework Hospices can serve AIDS patients. The decision to enter a hospice is for any patient, not just a person with AIDS, not always easy or obvious. To help patients and families make this decision, we suggest the following framework: Desire for hospice. This must be the sine qua non for any admission. A patient must understand he is joining a program ofcare for the dying. The decision to join a hospice program is usually accompanied by other important attitudes in terms of desire for palliative treatment, i.e., forgoing total parenteral nutrition (TPN), intubation or other resuscitative maneuvers. Death must be imminent. We use imminent in the sense that it is commonly applied to hospice patients. The patient’s attendingphysiciandetermines that death is foreseeable in the near future. To qualify for the Medicare/Medicaid benefit, the attending physician must determine a life expectancy of 6 months or less. To us, stating a specific time limit seems
premature given the current state of death prognostication in general and in relation to AIDS in particular.
The decision to enter a hospice isfor any patient, notjust a person with AIDS, not always easy or obvious. A patient should carry the diagnosis of AIDS as it is currently understood and defined. Research wifi be able to better discriminate between the various AIDS syndromes and characterize their unique death trajectories. Current markers for such a trajectory used to assess patient appropriateness for the hospice atNorthwestern University include poorperformance status, multiple or refractory opportunistic infections during the previous 6 months, opportunistic infections with persistent symptoms over months, failed chemotherapy for lymphoma or toxoplasmosis, progressive weight loss or other systemic symptoms, or progressive neurlogic disease such as multifocal leukoencephalopathy. • Care isfocusedoutside the hospital. In order for this to occur, a patientmust have a dedicated care-giver who will assure the patient’s safety and care. The caregiver may be a family member or someone simply committed to the care of the hospice patient in their home. Symptomatic and supportive care is broadly defined. Care within hospice is evaluated for
The American Journal of Hospice & Palliative Care, July/August 1991 Downloaded from ajh.sagepub.com at Bobst Library, New York University on May 8, 2015
its ability to relieve symptoms and improve quality of life. Such care does not alter the ultimately fatal nature of the illness. Examples of excellent symptom relief which many might consider aggressive include: treatment with gancyclovir to prevent blindness from cytomegalovirus retinitis; blood transfusions to treat symptomatic anemia in order to maintain meaningful activity; and zidovudine for the treatment of encephalopathy/ dementia. In conclusion, the AIDS issue is only one example of the broader problem hospice programs face as patients with diagnoses other than cancer are cared for. Resolution of the AIDS dilemma might serve this broader purpose. The result will be the maturation of hospice philosophy; maintaining its integrity while caring for all dying patients. L1 References 1. Torrens PR. Hospice Programs and Public Policy. U.S.A.: American Hospital Publishing. Inc., 1985. 2. Weisman E. Current Issues in Hospice Care. QRB 1987; 13:349- 350 3. Amo PS. The nonprofit sector’s response to the AIDS epidemic: community-based services in San Francisco. Am J Public Health 1986; 76:1325-1330 4. Forster LE, Lynn J. Predicting life span for applicants to inpatient hospice.ArchIntern Med 1988; 148:2540-2543 5. Trent B. Aplace for living, a place for dying. CMAJ 1988; 139:889-893 6. Bulkin W, Brown L, Fraioli D, Giannattasio E, McGuire G, Tyler P, Friedland G. Hospice care of the intravenous drug user AIDS patient in a skilled nurse facility. J Acq Immun Def Synd 1988; 1:375-380 7. Jansson J. The Connecticut Hospice, Inc. and AIl)S: A Profile. Conn Med 1988; 52-541 8. Clark C, Curley A, Hughes A, James R. Hospice care: a model for caring for the person with AIDS. Nurs Clin North Am 1988; 23:851862 9. Gardner K. The hospice response to AIDS. QRB 1988; 14:198-200 10. Martin MP. Ensuring quality hospice care for the person with AIDS. QRB 1986; 12:353-358
19
Abstract
Introduction
Which AIDS patients should be admUted to hospice programs? Many health care professionals feel that any anti-viral drug or treatment directed against the opportunistic infections characteristic of AIDS to be incompatible with hospice philosophy. Others argue that inclusion of AIDS patients blurs the distinction between hospice and community service programs. We argue that achieving consensus on this issue is best served by focusing on the defining characteristic of hospice programs the care of the dying. Consensus is not served by dwelling on the specific palliative or supportive measures used to achieve the hospice goal. We suggest a framework by which AIDS patients may be accommodated in existing hospice programs while maintaining hospice program integrity. It is furthersuggested that these may be used for the consideration of any patient for hospice care.
The hospice movement in the U.S. has undergone growth and widespread dissemination in the past decade. Patients generally must have a life expectancy of six months or less and acknowledge and accept their incurability to be admitted to a hospice. There is general consensus on the goals of hospice: symptomatic and supportive care of the terminally ill and their families biologic or chosen.’ In many hospice programs, particularly in the U.S., the mission of hospice has expanded to serve not only cancer patients, but dying patients in general.’ While this broadeninghas extended the benefits of hospice philosophy to many patients, it has also brought the problem of determining prognosis in nonmalignant disease and of deciding which dying patients hospices serve best. AIDS patients represent a particularly troubling example. Many, if notmost, hospice programsnowaccept AIDS patients, at least in principle.2 This reflects the fact that the disease is ultimately fatal at the present time. However, the course of the disease is variable, unpredictable in a given patient, and rapidly changing as new treatments become available. In fact, many healthcare workers have begun tothink ofAIDS as a chronic condition. In the interest of best serving AIDS patients, while maintaining the integrity of hospice, it is imperative that a consistent and rational approach be
—
Charles F. von Gunten, MD, PhD, is currently finishing his postgraduate training in internal medicine at Northwestern University, Chicago, Illinois. Jeanne Martinez, RN, is Clinical Nurse Manager, Northwestern Memorial Hospice, Chicago, Illinois, and board member of the Illinois State Hospice Organization. Sigmund A. Weitzman, MD, is Chief of the DivisionofHematology/Oncology,Department ofInternalMedicine, Northwestern University, Chicago, Illinois. Ja,nie Von Roenn, MD, is an Oncologist at Northwestern University, andMedicalDirector, Northwestern Memorial Hospice, Chicago, Illinois.
developed. It is the purpose of this article to discuss this issue and propose a framework for how AIDS patients can be accommodated in hospice.
many healthcare workers have begun to think ofAIDS as a chronic condition.
—
The American Journal of Hospice & Palliative Care, July/August 1991 Downloaded from ajh.sagepub.com at Bobst Library, New York University on May 8, 2015
The current situation AIDS patients have been admitted to hospice programs during what were clearly the end-stages of their illness. Theiraverage length-of-stay inhospice was short Amo reports an average length-of-stay of 47 days for AIDS patients in the San Francisco AIDS Home Care Program in l984-85.~Compare this with the 59 day mean length-ofstay for cancer patients reported by the National Hospice Organization.4 Isthe treatment of opportunistic diseases associated with AIDS palliative? AIDS patients in some hospices am offered treatment with antibiotics.5 Other programs consider such therapy to contradict fundamental hospice principles. This illustrates a widelyperceived dilemma. How can the best medical care for AIDS patients be provided while stifi maintaining the integrity of hospice? Advances in therapeutics and overall impmvement in pmgnosis have made it more difficult than ever to determine
17
when hospice admission is advisable for persons with AIDS. Published opinion on the subject of admission criteria is generally sparse and disparate. Some hospices have applied existing hospice admission criteria to AIDS patients without modification. The patient must have a prognosis of less than six months and relinquish all treatment specific to the AIDS diagnosis, i.e. prophylactic medications, medications for specific opportunistic infections, malignancies, or antiviral agents. The result is a three to five week length-ofstay.3’6’7 Bulkin et al6 report that 35 percent of all referrals were considered appropriate hospice candidates using these narrow criteria. Of those accepted, 35 percent diedprior to admission. Perhaps some patients whowould have been well-served are excluded. In response to the perception that prognosis for individual AIDS patients cannot easily be predictedand concern that hospices services are not offered early enough in the course of the disease, some programs have advocated a broad interpretation of hospice philosophy.8’9 Even themost aggressive treatments for AIDS patients are ultimately palliative, as they do not cure the underlying immune deficiency. Hence, the care provided by the hospice team is relevant from the first day of diagnosis.’0 Given the current estimates for number ofpatients with AIDS and their increasing longevity after diagnosis, widespread adoption of this policy would swamp existing hospice programs with large numbers of relatively healthy people. Under such a policy, hospice programs would differ little from a general community service agency. However, the case management style of hospice programs might offer a valuable model for community care of AIDS patients. AIDS and hospice The most important task in developing a consensus is to emphasize the
moral and philosophical dimensions which distinguish hospice care from a social service agency. Hospice programs should care only for those who acknow-
Hospice programs should care onlyfor those who acknowledge their imminent death and are preparing for it. ledge their imminent death and are preparing for it. The imperative which drives the advocates of hospice care for AIDS patients is the acknowledgment that AIDS is ultimately fatal. This is a crucial point in common with the admission of cancer patients to hospice. Consensus will not be achieved by listing or codifying the modalities which are used to achieve hospice goals, as some hospice programs have suggested.6 Medical interventions should be evaluated for their ability to provide meaningful symptom relief. Any policy on AIDS admission criteria must acknowledge the fact that the palliation of AIDS will change as further advances are made in AIDS treatment. There has been a similar evolution in palliative cancer therapy. Aggressive radiotherapeutic and surgical interventions are now considered consistent with hospice care if their intent is palliative. Forexample, pinning ofbroken hips orradiation ofpainfulbony metastases are acceptable in the hospice setting if their primary intent is symptom relief and maintenance of function and quality of life. To focus on the specific treatment modalities or drugs as some have advocated is to miss the point of palliative medical treatment within hospice. The criteria for acceptable therapies in the hospice program should be their intent and function; do they relieve symptoms and improve quality of life?
Adequate prognostication for AIDS patients is a separate problem. The variable nature of the illness has been widely acknowledged. Clark et a18 have suggested that a “death trajectory” might be definedto helpdetermine the best time for hospice admission. Data to support such a concept are still limited. However, clinical experience suggests several things which are generally associated with poor outcome: multiple recurrent opportunistic infections, recurrent refractory HIV related lymphoma or refractory wasting.4’6’8 In addition, there are patients who refuse further treatment. Similar situations are encountered in evaluating cancer patients for hospice. In this regard it ishelpful to remember that we are poor predictors of death in cancer patients in general4, let alone in other terminal illnesses. Generally we are overly optimistic.4’6 A goal for future research should be to develop protocols to aid prognostication for all terminally ill patients. Reimbursement Reimbursement for care of patients with AIDS is a majornational concern. Hospice is no exception. Approximately 40 percent of hospices in the U.S. receive a large proportion of reimbursement from the Medicare hospice benefit. States which have adopted the Medicaid hospice benefit must, under current law, provide the same reimbursement through Medicaid as Medicare provides. Hospice care in the U.S. has evolved to meet the needs of elderly cancer patients inresponse to the introduction of the hospice Medicare/Medicaid benefit. Admission of AIDS patients does not easily fit that structure. For hospice programs who rely predominately on Medicare and Medicaid reimbursement, the care of AIDS patients is financially precarious. Providing palliation for AIDS patients with new and expensive drugs under the current benefit is often
The American Journal of Hospice & Palliative Care, July/August 1991
Downloaded from ajh.sagepub.com at Bobst Library, New York University on May 8, 2015
impossible. In addition to medications, reimbursement must cover routine inpatient care, home care, respite care, and durable medical equipment. The issue of reimbursement for care of AIDS patients in an issue that no state has yet resolved. Since many insurance companies have hospice reimbursement policies which mirror those of Medicare, the Medicare reimbursement mechanism is of profound importance to the financial health and continued existence of many hospice programs. This factor keeps many hospice programs from admitting AIDS patients they would otherwise admit. Framework Hospices can serve AIDS patients. The decision to enter a hospice is for any patient, not just a person with AIDS, not always easy or obvious. To help patients and families make this decision, we suggest the following framework: Desire for hospice. This must be the sine qua non for any admission. A patient must understand he is joining a program ofcare for the dying. The decision to join a hospice program is usually accompanied by other important attitudes in terms of desire for palliative treatment, i.e., forgoing total parenteral nutrition (TPN), intubation or other resuscitative maneuvers. Death must be imminent. We use imminent in the sense that it is commonly applied to hospice patients. The patient’s attendingphysiciandetermines that death is foreseeable in the near future. To qualify for the Medicare/Medicaid benefit, the attending physician must determine a life expectancy of 6 months or less. To us, stating a specific time limit seems
premature given the current state of death prognostication in general and in relation to AIDS in particular.
The decision to enter a hospice isfor any patient, notjust a person with AIDS, not always easy or obvious. A patient should carry the diagnosis of AIDS as it is currently understood and defined. Research wifi be able to better discriminate between the various AIDS syndromes and characterize their unique death trajectories. Current markers for such a trajectory used to assess patient appropriateness for the hospice atNorthwestern University include poorperformance status, multiple or refractory opportunistic infections during the previous 6 months, opportunistic infections with persistent symptoms over months, failed chemotherapy for lymphoma or toxoplasmosis, progressive weight loss or other systemic symptoms, or progressive neurlogic disease such as multifocal leukoencephalopathy. • Care isfocusedoutside the hospital. In order for this to occur, a patientmust have a dedicated care-giver who will assure the patient’s safety and care. The caregiver may be a family member or someone simply committed to the care of the hospice patient in their home. Symptomatic and supportive care is broadly defined. Care within hospice is evaluated for
The American Journal of Hospice & Palliative Care, July/August 1991 Downloaded from ajh.sagepub.com at Bobst Library, New York University on May 8, 2015
its ability to relieve symptoms and improve quality of life. Such care does not alter the ultimately fatal nature of the illness. Examples of excellent symptom relief which many might consider aggressive include: treatment with gancyclovir to prevent blindness from cytomegalovirus retinitis; blood transfusions to treat symptomatic anemia in order to maintain meaningful activity; and zidovudine for the treatment of encephalopathy/ dementia. In conclusion, the AIDS issue is only one example of the broader problem hospice programs face as patients with diagnoses other than cancer are cared for. Resolution of the AIDS dilemma might serve this broader purpose. The result will be the maturation of hospice philosophy; maintaining its integrity while caring for all dying patients. L1 References 1. Torrens PR. Hospice Programs and Public Policy. U.S.A.: American Hospital Publishing. Inc., 1985. 2. Weisman E. Current Issues in Hospice Care. QRB 1987; 13:349- 350 3. Amo PS. The nonprofit sector’s response to the AIDS epidemic: community-based services in San Francisco. Am J Public Health 1986; 76:1325-1330 4. Forster LE, Lynn J. Predicting life span for applicants to inpatient hospice.ArchIntern Med 1988; 148:2540-2543 5. Trent B. Aplace for living, a place for dying. CMAJ 1988; 139:889-893 6. Bulkin W, Brown L, Fraioli D, Giannattasio E, McGuire G, Tyler P, Friedland G. Hospice care of the intravenous drug user AIDS patient in a skilled nurse facility. J Acq Immun Def Synd 1988; 1:375-380 7. Jansson J. The Connecticut Hospice, Inc. and AIl)S: A Profile. Conn Med 1988; 52-541 8. Clark C, Curley A, Hughes A, James R. Hospice care: a model for caring for the person with AIDS. Nurs Clin North Am 1988; 23:851862 9. Gardner K. The hospice response to AIDS. QRB 1988; 14:198-200 10. Martin MP. Ensuring quality hospice care for the person with AIDS. QRB 1986; 12:353-358
19
