HIV/AIDS remains a disease with severe social consequences, and primarily affects those who are already socially disadvantaged and marginalized. The litany of social woes that accompany infection may include bereavement and loss of relationships, unemployment, disability, burdensome health care costs and demands, stigma and ostracism, and fear of premature death. With so many different cultures represented among the HIV-infected, patients may be susceptible to suffering in ways unfamiliar to the traditional health care field. Health care providers for these populations need to be equipped with basic sensitivity to and familiarity with relevant cultural differences, particularly concerning attitudes toward suffering and death.
Because of the social contexts of HIV transmission, people with HIV/AIDS are also at increased risk for heroin, cocaine or amphetamine dependence, alcoholism and other substance use disorders, as well as both affective and thought disorders. These psychiatric diagnoses always complicate care, often requiring the marshaling of social services and mental health professionals. Such patients may be challenging and frustrating to treat. The health care provider must be attuned to these difficulties and prepared to acknowledge, seek help with and manage his or her own responses to issues associated with patients' lifestyles and behaviors.
Management of chronic pain in people with histories of opioid abuse, for example, is always a clinical challenge, and pain is frequently under-treated for fear of encouraging or playing into addiction. A solid understanding of addiction medicine is therefore essential for the provider of AIDS palliative care, particularly as it affects the appropriate use of psychoactive drugs and narcotics at the end of life. Management of symptoms may vary according to how long the person is expected to live and the existence of a home caregiver support network.
Palliative care in HIV/AIDS is greatly affected by the extent to which the individual is established in a family, career, lifestyle or culture. Social reconciliation may be difficult to accomplish for people who have rejected and been rejected by their families and other community support. As a consequence of all these factors, many people dying of AIDS still die alone, ashamed, alienated and unprepared.
Attention to needs and lives of families of HIV-infected individuals is an important component of palliative care, but not an easy thing to do. Infected individuals may find primary support with their family of origin or they may preferentially rely on families of choice. Individuals who have left behind their families of origin and have not created families of choice will need different support systems. Infection of members from multiple generations plague many families affected by the HIV/AIDS epidemic; these families have support needs that continue over years and across generations. Effects of multiple losses (death from AIDS or violence, lack of job or income, lack of a sense of a future) often complicate the ability of health care givers to provide the kind of support they would like to give, and may make it difficult for infected adolescents to maintain hope for the future.
Multi-Generational HIV Infection
Simi's family is not unusual in her neighborhood. She has been a patient of the local HIV clinic since she was born to her HIV-infected mother 17 years ago. She has two siblings, a sister who is 11 and is also HIV-infected and a 16-year-old brother who is not infected. Simi has struggled with persistent opportunistic infections, hospitalizations and chronic symptoms related to her HIV disease and medication side effects. Simi's father died of AIDS ten years ago, and her mother, Diane, is currently dying of advanced AIDS and is under the care of hospice at home. Diane's common-law husband of eight years died of AIDS earlier this year. His death was particularly hard on the children because he seemed so much healthier than Diane, and he loved the children dearly. Diane's sister, struggling with caring for her own four children and crack addiction, provides Diane's care. Simi's physical condition is poor and increasingly challenging, due to the emotional stress of her mother's approaching death. Diane's mother, Simi's grandmother, who also has AIDS and Hepatitis C, acquired from her husband who died five years ago, is unable to care for her grandchildren due to her dialysis schedule and severe fatigue. Diane's brother and sister-in-law died of AIDS five years ago, leaving healthy twin 6-year-old girls — who are now in the care of the sister-in-law's mother. HIV/AIDS affects Simi's entire family in every aspect of their lives — socially, financially, emotionally, spiritually and psychologically. For Simi, palliative care helps with access to primary medical care, case management that coordinates home care and hospice care, bereavement support, medications through the Ryan White and ADAP programs, mental health counseling, special home tutoring, legal services, and social service support such as rent assistance, transportation and temporary housing.
Caregivers of people with HIV disease ride the same prognosis "roller coaster" as the person with the disease. Therefore, caregiver issues for both families of origin and families of choice must be addressed in management of those dying of HIV disease. Information from the broader network of caregiver support needs to be adapted for those who care for people who are stigmatized and ostracized. Infusing palliative care into mainstream practice, including the preservation of hope and respect for the needs of family caregivers, is central to the concept that a patient and family should be the ones to determine care needs. The over-riding principle and goal must be to form a partnership with caregivers based on mutual trust and respect. Because HIV is a communicable disease, it is not unusual that a person's caregiver may also be HIV-infected. This adds even greater complexity to their support needs as they face their own impending death and palliative care needs, wondering "who will care for them" as they live to survive their loved one.
For those people nearing the end of their disease, the resource of an interdisciplinary team of professional care providers is invaluable to assist the family in the care of their loved one. Often families of people with HIV/AIDS feel isolated, ashamed and fearful on many levels. They may not be perceived as traditional family members and may not feel empowered to advocate and intervene on behalf of the ill person as a biological family member might do, or they may feel isolated from their religious community and neighbors because of stigma. An interdisciplinary hospice or palliative care team can be helpful to the family in sorting out issues of isolation, shame and fear often felt by patients and families and can offer supportive counseling as well as hands-on caregiving.
For many months John cared for his 42-year-old male partner of 20 years, Marvin, at home with hospice support. Marvin suffered from dementia, but all of his symptoms were well controlled by palliative interventions, including psychiatric management. When Marvin was transferred to a hospice facility shortly before his death, John was left at home exhausted and suicidal, experiencing feelings of loneliness, isolation and failure, having lost the work and responsibilities that added meaning and purpose to his daily life. Palliative care could have provided support for John while Marvin was home, anticipatory guidance about planning for inpatient hospice and follow-up bereavement counseling.
Hospice is a subset of palliative care — palliative care is the discipline, and hospice is a way of delivering palliative care to patients who are acknowledged to be dying and their families. Although the delivery of palliative care is not restricted to hospice, hospice care remains a valuable resource at the end of life; many consider it the "gold standard" for palliative care. Hospice is the model interdisciplinary team, extending the physician's reach, and changing the venue of care delivery from clinic to home. It is important for professional caregivers for those with HIV disease to form educational linkages with hospices and others who specialize in palliative care.
Innovations are necessary to make hospice services more widely available to HIV/AIDS patients and their families. This may require the elimination of some barriers that currently exist. Clinicians dramatically underutilize hospice care, and refer patients inappropriately late, often with only 24 to 72 hours to live . Hospice is seen as an all-or-none package, with the belief that all disease-modifying treatment must be set aside for a patient to access hospice (the "terrible choice"). Usually eligibility and reimbursement mechanisms limit hospice to patients who are expected to have six months or less to live. Traditional hospice principles and practices may be irrelevant or inappropriately applied for people of different circumstance, including HIV-infected people and their families. And home-based hospice care — predicted on the availability of a stable, safe, clean home environment and the presence of family caregivers — is not available for everyone.
Gaps in Hospice Care
Phillip is a 48-year-old African American man with a long history of heroin abuse, diagnosed with AIDS and Hepatitis C during a hospitalization in 1999 for Pneumocystis Jiroveci pneumonia. He lives alone with no family or dependents, but has a rich social and spiritual life through his church. He subsists on monthly disability payments. He has been free of heroin use for the past four years on a daily dose of maintenance methadone. Phillip has had multiple prolonged bouts of disabling constitutional symptoms from Mycobacterium avium complex (MAC) infection, including fevers and drenching sweats, abdominal pain, diarrhea, profound fatigue and weight loss. These symptoms abate only when he takes a simple but effective HAART regimen, in addition to two or three medications specific to MAC. Despite this treatment, his CD4 count is very low, and he suffers frequent opportunistic infections. Now, severely wasted and in constant pain from peripheral neuropathy, Phillip comes to terms with dying, and asks his physician about hospice care. He is informed that no local hospice will accept him on HAART, and that to be eligible he will need to stop the drugs that control his symptoms. Also, he has nowhere to receive hospice care — the hospices require that he have someone at home to care for him. Alternately, he could enter a skilled nursing facility, but his Medicaid insurance covers only a small number of notoriously unsavory nursing homes in the area — and none will accept a patient on methadone maintenance. Patients like Philip should not have to choose between HAART and hospice, and should have access to skilled nursing facilities.
Patients and families often put up their own barriers to hospice care, equating hospice with imminent death. Uninformed HIV patients with other serious personal problems may have little accurate knowledge about their disease, its treatments and palliative care, and their rights to access appropriate care. Those who view themselves as victims of discriminatory social structures might meet the shift from disease modifying to palliative efforts with hostility.
Two-year-old Carrie has progressive AIDS and is cared for by her mother, Shawna, who is responsible despite her continuing substance use. She has a new baby, however, and lives in a "dangerous" neighborhood where many residents distrust the health care system and health care organizations. A pediatric HIV interdisciplinary team has been intensively involved with Carrie, however, since her initial diagnosis at birth. The team recommends the involvement of hospice, but Shawna's fear of death and reluctance to involve new people in Carrie's life cause her to balk and reject the suggestion. Shawna wants to continue working with the HIV care team, and delays hospice involvement, unconsciously depriving Carrie of the optimal comfort she needs in her final days. Ultimately hospice is called when Shawna realizes Carrie's pain and discomfort, and Carrie receives the monitoring and comfort she needs — but only in her last week of life. There are now innovative palliative care services that provide a bridge between HIV/AIDS care and hospice, but these programs are not yet widely available.
Use of hospice is increasing nationally with more than 885,000 people receiving these services in 2002. However, the average length of stay has declined from 64 days in 1992 to 51 days in 2002 . The national median length of stay for hospice is 26 days, and in 2001, 37 percent of those served by hospice died within seven days or less of initial referral. But many innovative demonstration projects across the nation are revealing that palliative care modeled on hospice care can be provided concurrently with disease-modifying care. This integrated approach is not only well accepted by patients and their families, but may even conserve health care dollars . More demonstration projects illustrating collaborative provisions of existing services in delivering palliative care to people with HIV disease, concurrent with disease-modifying treatment, are needed to validate the best mechanisms for providing palliative care from the point of diagnosis to death.
The spiritual dimension of a person's life encompasses the beliefs, values and practices that give his or her life meaning and a sense of wholeness. These values have a profound effect on the way someone views the end of life and on the decisions they make about their care. The patient's attitude toward dying and the decisions they make may be at odds with the health care provider's belief system, which can result in feelings of conflict. Although a provider's own spiritual beliefs can be a source of strength personally and can enhance the patient-provider relationship, providers must be careful not to impose them on the patient. In palliative care, it is important that providers consider spirituality an integral part of physical, emotional and mental health and learn how to assess and address spiritual beliefs. A provider's comfort with the patient's spirituality may play a significant role in the clinician-patient relationship. See Appendix B for description of "FICA," a tool to help health care professionals in taking a spiritual history.
Chapters on spiritual, psychiatric and cross-cultural issues are included in A Clinical Guide to Supportive & Palliative Care for People with HIV/AIDS 2003 Edition, published by the U.S. Health and Resource Services Administration.
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Promoting Excellence in End-of-Life Care was a national program of the Robert Wood Johnson Foundation dedicated to long-term changes in health care institutions to substantially improve care for dying people and their families. Visit PromotingExcellence.org for more resources.