Individuals with advanced HIV/AIDS are experiencing changed end-of-life needs. Both HIV specialty health care providers and palliative care professionals must address these needs so that patients may derive optimal benefit from medically and socially appropriate end-of-life care.
As effective treatment for HIV has become available, the causes of death for HIV-infected people have shifted dramatically (although the Workgroup noted that very limited research has been conducted to document this). Complex medical comorbidities often complicate care. Some conditions, such as liver disease due to chronic hepatitis B or C infection, were less likely to cause death earlier in the epidemic, due to the much-shortened life spans of people with symptomatic HIV infection. These conditions now occur disproportionately in people with HIV/AIDS because they are transmitted via the same routes as HIV. End-stage renal disease is multi-factorial, a consequence not only of uncontrolled hypertension or diabetes, common comorbid conditions in certain subpopulations, but also of direct renal injury caused by HIV itself (HIV-associated nephropathy). Non-lethal problems that directly impinge on quality of life, such as xerostomia or peripheral neuropathy, may result from both direct effects of HIV itself and/or the adverse effects of antiretroviral therapy. All of these conditions require palliative care expertise.
Who's Dying Of AIDS Now? Long Term Survivor
Timothy was 65 years old and had advanced AIDS. He lost his long-term partner ten years ago to AIDS and said he "didn't have any friends left." Timothy became frail because of liver failure due to hepatitis C, and he was hospitalized due to drug reactions. He was then able to move in with his cousin, where he lived comfortably for three years until his cousin died from pancreatic cancer. With nowhere to live, and suffering from multiple-loss grief, Timothy was once again hospitalized, where staff had difficulty empathizing with him ("he's lived longer than most people"). Timothy was eventually transferred to a skilled nursing facility and died after an acute care hospitalization. Palliative care could have provided grief counseling, life closure and advance care planning that could have prevented the hospitalization at the end of life.
Many patients, for reasons conscious or unconscious, are never diagnosed as HIV positive or initiate antiretroviral therapy before presenting to hospital emergency departments with opportunistic infections or other evidence of advanced disease. This was the norm prior to the availability of effective therapies, but is now viewed as a failure of prevention or early intervention. The ability to remain under care is also a pervasive problem. People detected earlier in the course of their illness and who are able to maintain regular health care follow-up may have "controlled" disease, but may develop long-term toxic effects of therapy. Unfortunately, there are patients who are unable to comply with medical follow-up and antiretroviral therapy because of compromised mental health, social circumstances or mistrust of the health care system among all infected subpopulations, resulting in poorer quality of life and survival outcomes.
Continuity of care is often problematic for HIV-infected individuals with multiple diagnoses. A patient with HIV who also has chronic viral hepatitis and ongoing substance abuse problems might be shuffled between an addictions program, a hepatology clinic and an HIV clinic with little coordination of care. This lack of continuity allows clinicians and patients to avoid adequate planning time for end-of-life issues, including necessary psycho-spiritual goals to be accomplished prior to death. Consequences include poor adherence to treatment plans, diminished quality of life, the possibility of shortened survival, a crisis management mode instead of attentive end-of-life planning, and unplanned use of expensive acute and intensive care resources.
Because manifestations of advanced HIV disease have changed with more effective therapy, it is increasingly difficult to predict prognosis. It is important to note that the final months of HIV/AIDS disease may be no more predictable than the episodic decline seen in people with congestive heart failure or ALS. Many AIDS patients may die of an acute episode of infection requiring hospital or even ICU admission. In most settings, deaths of HIV/AIDS patients from end-stage liver or renal disease and from cancer presently outnumber deaths from AIDS-related opportunistic infections. Clinicians caring for these patients must be able to foresee and manage not only the classic complications of AIDS, but also these other complications not traditionally viewed as consequences of immunosuppression.
Moreover, the long-term impact of HAART use is still unknown. This uncertainty causes emotional and spiritual distress and fosters avoidance of end-of-life discussions on the part of clinicians and patients. Patients and their families may be denied appropriate planning for life completion and closure, and patients often die without holding necessary and important conversations. There is a need for a bridge or a parallel track - palliative HIV care - to allow for better symptom management in early disease and patient preparation for end-of-life care, for all HIV-infected individuals.
The Promoting Excellence Workgroup on Palliative and End-of-Life Care in HIV/AIDS recommends the reintroduction of palliative care as a standard component of HIV care, in the same way that HAART and prophylaxis against opportunistic infections are now established practice. HIV care is intense and complex, and the integration of palliative care and its characteristic interdisciplinary teams complements care with HAART. The Workgroup advocates for the integration of palliative care in the patient's course from presentation to death, initiating palliative care discussions at the time of diagnosis and emphasizing the patient's quality of life. The recommendations for change contained in this report are based on the following definition of palliative care, set forth in A Clinical Guide to Supportive and Palliative Care for HIV/AIDS 2003 Edition, published by the U.S. Department of Health and Human Services' Health Resources and Services Administration HIV/AIDS Bureau:
Palliative care is patient- and family-centered care. It optimizes quality of life by active anticipation, prevention and treatment of suffering. It emphasizes use of an interdisciplinary team approach throughout the continuum of illness, placing critical importance on the building of respectful and trusting relationships. Palliative care addresses physical, intellectual, emotional, social and spiritual needs. It facilitates patient autonomy, access to information and choice.
Several recent studies point to the importance of integrating palliative care into HIV disease-specific care. The recently published "Study of the Supply, Demand and Use of Palliative Care Physicians in the United States," conducted at the State University of New York at Albany and funded by the U.S. Health and Resource Services Administration (HRSA), cites six recommendations to assure that palliative care services are available to patients with HIV/AIDS. The recommendations emphasize that clinicians and allied health professionals working with HIV/AIDS patients must have demonstrated skills in palliative medicine and pain and symptom management, and need training in communication to facilitate timely discussions of treatment options and end-of-life concerns (see Appendix A for list of recommendations from the study).
The Workgroup on Palliative and End-of-Life Care in HIV/AIDS members identified the following important clinical issues in the treatment of HIV/AIDS:
Good HIV care is more than antiretroviral therapy...
Marjorie is a 52-year-old Asian American woman with advanced AIDS. She has been unable to tolerate antiretroviral therapy. After four months of fevers, weight loss, severe chest pain and shortness of breath, during which she has been prescribed several courses of empiric antibiotics for presumed pneumonia, she is admitted to the local hospital's ICU with respiratory failure. Marjorie is intubated and ventilated. Diagnostic studies show large pleural effusions; fluid is obtained and reveals a primary lymphoma of the pleural space. A week later, with a large chest tube in place, Marjorie is successfully extubated, to the delight of the ICU team. But she continues to complain of severe, and worsening, chest pain. She is visited by the oncologist, who describes a difficult course of chemotherapy that has some chance of containing her lymphoma, if she can be on HAART at the same time. Marjorie balks, stating that she has tried HAART and cannot tolerate it, and doubts she could manage the chemotherapy. The oncologist states, "Well, in that case, there's nothing we can do for you, medically." He writes her a prescription for acetaminophen with codeine and discharges her directly to home from the ICU. Palliative care could have provided follow-up, continued communication about the feasibility of chemotherapy and a new HAART regimen, and symptom control.
Despite increasing acknowledgement of the importance of palliative care in clinical practice, the current DHHS and International AIDS Society-USA treatment guidelines for the management of HIV/AIDS care do not address palliative care. Instead, these guidelines separately address, in different documents, various aspects of HIV care, such as antiretroviral treatment and diagnosis and prevention and treatment of opportunistic infections. There are no U.S. Public Health Service guidelines that address an integrated, more holistic approach to the overall management of HIV disease. Addressing the total care needs of people with HIV disease, and integrating aspects of palliative and end-of-life care into current treatment guidelines will help health care providers remember to address these issues proactively - and will ensure the integration of palliative care into overall HIV care. In addition to establishing clinical standards and guidelines that integrate palliative care into the standard of disease-specific HIV care, health care systems must include palliative and end-of-life issues in continuous quality improvement programs.
Typical Service of Palliative Care
The medical and social complexities of HIV disease dictate a team approach to care. An interdisciplinary team takes its direction from the quality of life being experienced by the patient and family as a unit of care, rather than following a strict medical model directed at containment of the disease alone. An interdisciplinary team attends simultaneously to the patient's psychological and spiritual needs as well as the medical needs throughout the illness, and even more so at the end of life. The team approach to care works successfully in diverse settings.
Clinicians frequently need to focus on Maslow's hierarchy of needs before attending to any part of HIV care. In striving to meet these basic human needs, a clinician working alone may feel emotionally drained and not able to provide appropriate care during the dying process. Without the support of an interdisciplinary team, clinicians and support staff often experience the fatigue and frustration called "burnout."
The traditional medical model has compartmentalized palliative care from curative or restorative care, introducing patients to its benefits in a sequential fashion only after life-prolonging treatment is deemed futile. The now outdated Medicare hospice benefit, which includes establishment of a prognosis of six months or less to live, reflects this traditional health care delivery model, by requiring that patients forego life-prolonging care in order to qualify for hospice support and palliative care. This "either-or" dilemma has been referred to as the "terrible choice" and promotes a sequential model of care, forcing a division between care directed at prolonging life and care directed at comfort and quality of life.
A concurrent model of care, in contrast to the sequential model, is responsive to patients' and families' needs throughout the course of illness. The simultaneous care model, successfully utilized in cancer therapy as well as with some HIV/AIDS populations, illustrates the concept of integration and concurrent care. This model eliminates the "either-or" choice of pursuing curative or restorative care versus focusing on palliation.
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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.