The Challenge and Opportunity of Palliative Care for HIV/AIDS

The Challenge and Opportunity of Palliative Care for HIV/AIDS Peter A. Selwyn, M.D., M.P.H. Professor of Family and Internal Medicine Chairman, Department of Family Medicine and Community Health Montefiore Medical Center Albert Einstein College of Medicine Bronx, NY

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Definition of Palliative Care “Palliative medicine is the study and management of patients with active, progressive, far advanced disease for whom the prognosis is limited and the focus of care is the quality of life. [It is] the active total care of patients whose disease is not responsive to curative treatment. Control of pain, of other symptoms, and of psychological, social, and spiritual problems, is paramount. The goal of palliative care is achievement of the best quality of life for patients and their families.” (WHO, 1990)

Important Aspects of Palliative Care Palliative Care: • Affirms life and regards dying as a normal process. • Neither hastens nor postpones death. • Provides relief from pain and other distressing symptoms. • Integrates the psychological and spiritual aspects of patient care. • Offers a support system to help patients live as actively as possible until their death. • Offers a support system to help the family cope with the patient’s illness and in their own bereavement. (WHO, 1990)

Palliative Care in HIV/AIDS • Important for AIDS care with or without disease-specific therapy. • Balance of disease-specific and palliative interventions throughout the continuum of HIV disease, always ‘both…and’ rather than ‘either…or’ Common Palliative Care problems in AIDS: • Pain and symptom management. • Emotional and psychosocial support for patients and families. • End-of-life issues.

Curative Care (=disease-specific restorative) Palliative Care (=supportive, symptom-oriented) Diagnosis Dying Death Person with illness DISEASE PROGRESSION Figure 3 Traditional Dichotomy of Curative and Palliative Care for Chronic Progressive Illness

Curative Care (=disease-specific, restorative) Bereavement Palliative Care (=supportive, symptom oriented) Diagnosis Dying Death Person with Illness Support services for families and caregivers Family Caregivers DISEASE PROGRESSION Figure 4 Integrated Model Including both Curative and Palliative Care for Chronic Progressive Illness

Developed Country Model Curative Treatment (Disease-specific therapy) Palliative and supportive care (Pain and symptom management) Developing Country Model Curative Treatment (Disease-specific therapy) Palliative and supportive care (Pain and symptom management) Figure 5 Models of Curative and Palliative Care for HIV/AIDS in Developed and Developing Countries (Foley, 2003)

WHO Guidelines for National Palliative Care Policy • Assuring availability of narcotics and other medications. • Establishing appropriate systems of care. • Training health professionals in principles of palliative care: 1) Communication 2) Decision-making 3) Management of medical complications 4) Pain and symptom control 5) Psychosocial care of patient and family 6) Care of the dying (WHO, 1995)

Special Challenges for Palliative Care for HIV/AIDS in the HAART Era • Changing prognostic indicators • Uncertain role of HAART in end-stage disease • Pain management in drug users • Co-morbidities • Changing therapeutic paradigms • Differential impact of HIV-related mortality • Social context and stigma of HIV/AIDS

Prevalence of Current Symptoms in Patients with AIDS* *Based on several published descriptive studies of patients with AIDS, predominantly in patients with late-stage disease, Europe and North America, 1990-2002.

Symptom Management in HIV Disease • High prevalence of non-pain symptoms in patients with HIV/AIDS, especially with advanced disease. • Like with pain, symptoms may be due to effects of opportunistic infections or malignancies, HIV itself, chronic illness, or medication toxicity. • Like with pain, other symptoms tend to be under-diagnosed and under-treated in patients with AIDS. • To improve quality of life, relieve suffering, and improvement HIV treatment adherence and outcomes, important to recognize and treat symptoms effectively.

Use of Palliative Care Medications in HIV/AIDS • Growing science of palliative medicine, with evidence-based practices in treating specific symptoms associated with chronic, incurable illness. • Best palliative intervention is sometimes disease-specific (anti-fungal therapy, anti-mycobacterial therapy), sometimes symptom-specific (anti-emetics, steroids, opioids). • Palliative treatment can be very effective for wide range of symptoms, including nausea/vomiting, fatigue, fever, diarrhea, dyspnea. • Palliative and disease-specific therapy should co-exist as appropriate, based on available options.

Medications Used for Palliative Treatment of Common Symptoms in HIV/AIDS

Medications Used for Palliative Treatment of Common Symptoms in HIV/AIDS (continued)

Psychosocial Issues in Palliative Care • Important issues of life-threatening illness and stigma of HIV/AIDS. • HIV disease affects young families, often including multiple family members. • Fear, anxiety, sadness, depression are common symptoms in patients with AIDS. • Social isolation and shame can affect patients and families. • Treatment is medical as well as psychosocial, involving multiple members of the care team: - Physicians, nurses, community health workers - Links with community service organizations - Family support services

Home Care and Hospice • Home care services may be necessary in late-stage patients. • Home care medical services are best coordinated with community service providers (visiting nurses, community health workers, HIV peer educators, volunteers). • Family members can help care for patients and should receive basic education on infection control and medical care. • For dying patients admission to a hospice (if available) or hospital may be appropriate if they are unable to be cared for at home. • Hospice is generally reserved for patients in the last few months of life, when disease-modifying therapy is no longer available or feasible.

Grief and Bereavement Services • When patients die, it is important to provide grief and bereavement support services for families. • Burden of patient’s death on families may be great since AIDS affects young adults and children. Needs of children who become orphaned may be important. • Community-based resources can help provide follow-up and other needed services for AIDS-affected families. • Multiple family members may also be HIV-infected, anticipating their own death as well as grieving their loved one who has just died. • Stigma and social isolation surrounding AIDS can make the death of loved one even more burdensome and isolating to the family. • Physicians can help by expressing their condolences to family. • Ongoing contacts by community health workers with the family can also be very helpful during the bereavement period.

Challenges for Palliative Care for AIDS in Resource-Rich Settings • Attending to palliative care needs within ‘curative’ paradigm of HAART in which patients are not ‘supposed’ to die • Maintaining focus on psychosocial needs to patients/families with progressive, incurable illness • Addressing complicated pain and symptom management issues in chronically ill patients over extended period of time • Managing iatrogenic complications, co-morbidities, drug interactions • Overcoming the false dichotomy of HIV-specific and palliative care paradigms: beyond ‘either…or’ to ‘both…and’ • Goal: Providing integrated care across the continuum of HIV/AIDS, improving quality of life, treatment outcomes, and end-of-life care for patients/families, within the context of available resources

Challenges for Palliative Care for AIDS in Resource-Poor Settings • Obtaining access to HIV specific therapies (e.g., HAART) • Obtaining access to palliative care therapies (e.g., opioids) • Prioritizing HIV services in context of limited resources (e.g., primary prevention, perinatal transmission, targeted population-based HAART, care for the dying) • Providing effective palliative care services that do not ‘normalize’ a two-tiered system of care (i.e., ‘HAART for the rich and opioids for the poor’) • Linkage of palliative care services to existing and traditional care systems • Goal: Providing integrated care across the continuum of HIV/AIDS, improving quality of life, treatment outcomes, and end-of-life care for patients/families, within the context of available resources

Summary and Conclusions • Palliative care is an important element in HIV/AIDS care, especially in advanced disease. • Patients with HIV/AIDS have high prevalence of pain and other symptoms, as well as psychological and social problems of life-threatening illness and its effects on young families. • Palliative medicine offers many interventions to help relieve pain and other symptoms, reduce suffering, improve quality of life, and improve adherence with other medical therapy. • HIV care services are best coordinated with community-based agencies, including hospice, to help provide comprehensive home care to patients in the late stages of illness, and bereavement services for AIDS-affected families. • National health policy should address the importance of integrating palliative care into HIV/AIDS service planning and delivery, including ensuring adequate access to narcotic analgesics and other essential palliative care and HIV-specific medications.

The Challenge and Opportunity of Palliative Care for HIV/AIDS