1. Integrating Palliative Care into TB Care Kathleen M. Foley November 18,2010

2. 2002 WHO Definition of Palliative Care "Palliative care is an approach which improves quality of life of patients and their families facing life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual"

3. 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.

4. Palliative Care as a Public Health Issue affects all people affects all people need for better information on end-of-life care need for better information on end-of-life care potential to prevent suffering potential to prevent suffering potential to prevent disease potential to prevent disease

5. Palliative Care as a Prevention Model prevents needless suffering prevents needless suffering provides peer education provides peer education provides patient centered care provides patient centered care incorporates self-management programs incorporates self-management programs

6. Educatio n Implementation Drug Availability WHO Public Health Model PolicyPolicy ContextContext ContextContext OutcomesOutcomes OutcomesOutcomes

7. Palliative Care for HIV/AIDS Important for AIDS/TB 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/TB Care -Pain and symptom management. -Emotional and psychosocial support for patients and families. -End-of-life issues.

8. Prevalence of Current Symptoms in Patients with AIDS* Fatigue Weight loss/anorexia Pain Anxiety Insomnia Cough Nausea/ vomiting Depression/ sadness Dyspnea/ respiratory symptoms Diarrhea Constipation 48-77% 31-91% 29-76% 25-40% 21-50% 19-36% 17-43% 15-40% 15-48% 11-32% 10-29% *Aggregate data from existing published descriptive studies of patients with AIDS, predominantly in patients with late-stage disease, Europe and North America, 1990-2002.

9. Complex care needs in HIV Symptom burden patients attending outpatient HIV clinics in London Symptom burden patients attending outpatient HIV clinics in London 63% tiredness 63% tiredness 55% worry 55% worry 51% diarhoea 51% diarhoea 50% pain 50% pain 47% skin problems 47% skin problems 46% numbness/tingling in hands/feet 46% numbness/tingling in hands/feet 32% suicidal ideation 32% suicidal ideationref:

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

11. Models of Curative and Palliative Care for HIV/AIDS in Developed and Developing Countries 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) (Foley, 2003)

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

13. The continuum of palliative care Diagnosis Death Therapies to modify disease (curative, restorative intent) Actively Dying Bereavement Care Life Closure Therapies to relieve suffering, improve quality of life 6m

14. Model Initiatives in Palliative Care in South Africa HPCA-SA developed integrated community based home care models (ICBHBC)

15. Home-based palliative care All HBC organizations should be trained in palliative care All HBC organizations should be trained in palliative care Community caregivers trained to screen for clinical problems and to refer to professional nurse Community caregivers trained to screen for clinical problems and to refer to professional nurse Trained in treatment support – ARVs, TB, analgesic medication Trained in treatment support – ARVs, TB, analgesic medication Trained in basic nursing skills, nutritional advice Trained in basic nursing skills, nutritional advice Basic counselling skills including bereavement counselling Basic counselling skills including bereavement counselling Supervision and support provided by professional nurse Supervision and support provided by professional nurse

16. Admit Interdisciplinary team at the clinic or hospice Professional nurse Home-based carer PATIENT AND FAMILY Training and Education Patient care Supervision Home care Referral centre Continuum of care Diagram showing continuum of care in resource-constrained setting

18. Approaching integration (n=4) Localised provision (n=11) Capacity building activity underway (n=11) No hospice-palliative care activity yet identified (n=21)

19. Palliative Care and HIV/AIDS Decreased HIV mortality rates = increased prevalence of HIV/AIDS Prolonged survival = growing need for ongoing care Prolonged survival in symptomatic patients = greater need for symptom management Cumulative disease burden, co-morbidities-TB and iatrogenic toxicity = increasing challenges of chronic disease care ‘Conversion of death to disability’ Need for palliative care: comprehensive care for patients and families, including pain and symptom management, advance care planning, and supportive services for progressive, incurable illness

20. 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, anorexia/weight loss, fever, diarrhea,dyspnea. Aggressive and effective symptom management can improve quality of life and HIV treatment outcomes. Palliative and disease-specific therapy should co-exist as appropriate, based on available options.

21. Special Challenges for Palliative Care for HIV/AIDS and TB Changing prognostic indicators Uncertain role of antiretrovirals in end-stage disease Pain management in drug users Co-morbidities such as TB Changing therapeutic paradigms Differential impact of HIV-related mortality Social context and stigma of HIV/AIDS

22. Misconceptions regarding palliative care For some people, palliative care is seen as care of the dying For some people, palliative care is seen as care of the dying Palliative care is applicable early in the course of the illness in conjunction with treatment intended to prolong life Palliative care is applicable early in the course of the illness in conjunction with treatment intended to prolong life Palliative care affirms life and focuses on quality of life Palliative care affirms life and focuses on quality of life Palliative care addresses each person’s individual needs - physical, psychosocial and spiritual issues Palliative care addresses each person’s individual needs - physical, psychosocial and spiritual issues

23. Pain Management in AIDS High prevalence of pain in AIDS: 29-76% of patients, higher with advanced disease. Pain due to effects of specific opportunistic infections (headache/cryptococcal meningitis, odynophagia/esophageal candidiasis), HIV itself (distal symmetric polyneuropathy), or medications for HIV and TB Pain due to infection with TB Important to treat pain in order to improve quality of life, relieve suffering, and improve HIV treatment adherence and outcomes.

24. Psychosocial Issues in HIV Palliative Care HIV disease affects young families, often including multiple family members. Needs of ‘AIDS orphaned’ children may be particularly important. Fear, anxiety, sadness, depression are common symptoms in patients with AIDS. Grief and bereavement need to be routinely addressed in families and caregivers. Social isolation, stigma, and shame can affect both patients and families. Psychosocial context has key impact on goals of care, advance care planning, and decisions about end-of-life care and treatment ‘withdrawal.’ These issues are best addressed by multi- disciplinary team (medicine, nursing, social work, mental health, pastoral care), and must include community outreach and home care services.

25. Care & Support groups have suggested a Framework for Action A comprehensive, sustainable response must include: good standards of care for patients; good standards of care for patients; recognition of the role of community caregivers; recognition of the role of community caregivers; appropriate standards of support for caregivers; appropriate standards of support for caregivers; providing the necessary equipment including.g. home based care kits and medicines; providing the necessary equipment including.g. home based care kits and medicines; fair financial support; fair financial support; on-going training, support and supervision. on-going training, support and supervision.

26. Challenges for Palliative Care for AIDS in Resource-Rich Settings Attending to 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

27. 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

28. Summary and Conclusions Palliative care is an important element in HIV/AIDS care, in both resource-rich and resource-poor settings. Patients with HIV/AIDS have a 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. Global health policy and planning should address the importance of integrating palliative care into HIV/AIDS service planning and delivery, including ensuring adequate access to palliative care and HIV-specific therapies in all settings where HIV care is provided.