Palliative Care

1. Palliative Care Unit 18 HIV Care and ART: A Course for Healthcare Providers

2. Learning Objectives • Define palliative care and its role in the management of HIV • Describe palliative care in the African context • Assess and manage pain and dyspnea in HIV • Communicate bad news and discuss end-of-life care

3. Introductory Case: Yared • Yared is a 35 year-old HIV+ gentleman who returns to clinic complaining of nausea and diarrhea. • 6 months ago his ART regimen was changed to Nelfinavir, AZT, and ddI because of immunologic treatment failure. • The patient has a history of CNS toxoplasmosis and pulmonary TB. • He lost his job and started drinking ETOH daily since his wife died in a car accident 1 year ago.

4. Introductory Case: Yared (cont.) • Alert and oriented, but appears fatigued and chronically ill • T 37.7 HR 110 BP 90 / 70 • 47 kg (7 kg weight loss since last visit) • Pale conjunctivae • White plaques on soft palate • Normal exam otherwise

5. Introductory Case: Yared (cont.) • Volume depletion • Nausea & diarrhea • Clinical treatment failure (new thrush, wt loss) • Pallor • Alcohol dependence • Unemployment • What are his palliative care needs?

6. Principles of Palliative Care • Interventions that improve the quality of life for patients and their families • Prevention and relief of suffering • pain and other physical problems • psychosocial and spiritual issues • An integral part of a comprehensive care and support framework

7. Principles of Palliative Care • In the framework of a continuum of care from the time the incurable disease is diagnosed until the end of life • Regards dying as a normal process and affirms life • Offers support to help the patient and family cope during the patient’s illness and in the bereavement period

8. Pre-HAART Palliative Care Model Therapies to modify disease(curative, restorative intent) Hospice 6m Diagnosis Death BereavementCare

9. The Role of Palliative Care inHAART Era Therapies to modify disease(curative, restorative intent) Life Closure Actively Dying Diagnosis 6m Death Palliative Care: interventions intended to relieve suffering and improve quality of life BereavementCare

10. Palliative Care and ART • Antiretroviral therapy does not avert the need for palliative care • 40–50% of patients experience virological failure • 40% of patients have adverse reactions • HIV-related cancers still occur • Psychological and spiritual needs persist

11. Role of Palliative Care in HIV • Treatment of antiretroviral side effects • Management of HIV complications • Relief of psychosocial challenges • Improved ART adherence • Reduction of drug resistance in the individual and community • Preparation for end-of-life

12. Introductory Case: Yared (cont.) • Nausea • Diarrhea • Fatigue • Substance dependence • Unemployment • Lack of social support

13. Return to Case Study • Yared returns to the clinic 1 month later • His diarrhea and nausea have improved with interventions offered at the last visit. He is still fatigued, however, and continues to use ETOH. • He is now living with his uncle 500 km away from clinic.

14. Palliative Care in Africa • Palliative care models for developed countries may not work in Africa • Feasibility ? • Accessibility ? • Sustainability ? • Cultural diversity ?

15. Challenges to Palliative Care in Africa • Late disease presentation • Inadequate diagnostic facilities and assessment skills • Poor availability of chemotherapy and radiotherapy • Absence of opioids • Regulatory and pricing obstacles • Ignorance and false beliefs

16. Cultural Variation and Preferences • A “good death” in Africa varies culturally and historically • Bearing bad news could be seen as the cause of a terminal illness • Labeling patients as “terminally ill” may have harmful consequences • Isolation • Denied access to care • Traditions need to dictate appropriate models of care

17. Palliative Care Needs in Africa • Hospice care (home and hospice center) • Pain and symptom control • Financial support • Emotional and spiritual support • Food and shelter • Legal help and school fees

18. Models in Africa • Home-based care has been the most common service model in Africa • Limitations of home-care models • Inadequately trained care givers • Lack access to essential drugs • Limited access for patients in inaccessible geographical areas • Stigma

19. WHO Palliative Care Project • WHO “community health approach to palliative care for HIV/AIDS and cancer patients in Africa project.” 2001 • Botswana, Ethiopia, Uganda, Tanzania, and Zimbabwe • Objective • Improve the quality of life of patients and their families in African countries • Develop home based palliative care models

20. End of Life Experience in Ethiopia • 86 adults surveyed • Families members of a person bed-ridden with AIDS • The most common problems identified: • Pain associated with the illness (76%) • Vomiting, diarrhea, and appetite loss (30%) • Cost of and lack of drugs

21. End of Life Experience in Ethiopia (2) • Patient needs were not met in most cases • Relief of pain • Relief of symptoms • Burden on family • Education interruption • Financial constraints • Emotional (anxiety, fear, sadness) • Physical

22. The Role of Stigma in Ethiopia • Physician reluctance to pass bad news to patients on any health matter, especially AIDS • Fear of discrimination often prevents many Ethiopians from seeking treatment for AIDS • Many people with AIDS have been evicted from their homes by their families and rejected by their friends and colleagues • Infected children are often orphaned or abandoned

23. Direction of Palliative Care in Africa • Understanding of the capacity and needs of the community • Innovation within a framework • Trend towards home-based care (e.g. Ethiopia) • Integrated approach with strong referral links • Addresses need at all stages of disease • Provision of simple protocols • The WHO Integrated Management of Adolescent Illness (IMAI) manual • Advocacy

24. Introductory Case: Yared (cont.) • Yared returns to the clinic 4 months later • He is very fatigued and has developed burning lower extremity pain.

25. Advanced HIV: A Spectrum of Symptoms • Pain • Diarrhea, nausea, vomiting • Fever • Dyspnea, cough • Fatigue • Orthopnea, PND • Skin disorders • Confusion • Depression, anxiety, fatigue, fear

26. Pain • The symptom most feared when patients contemplate death • Usually a manifestation of physical distress • May be exacerbated by anxiety, fear, depression • Ability to tolerate and cope with pain varies drastically between patients

27. Pain Syndromes in HIV • Abdominal pain • Peripheral neuropathy • Oropharyngeal pain • Headache pain • Post-herpetic neuralgia • Musculoskeletal pain

28. Peripheral Neuropathies • Among the most common causes of pain in HIV • The neuropathies associated with HIV can be classified as • Primary HIV-associated • Secondary diseases caused by • Neurotoxic substances • Opportunistic infections • Grouped by • Timing in relation to onset of HIV infection • Clinical and diagnostic features

29. Distal Symmetrical Sensory Polyneuropathy (DSSP) • Most frequent neurological complication associated with HIV infection • > 1/3 of HIV-infected patients • Pathophysiology unclear • Course: Slowly progressive sensory features • Location: feet, lower extremity, sometimes hands; symmetrical distribution

30. Clinical feature of DSSP • Symptoms • Pain • Tingling • Numbness • Signs • Depressed or absent ankle reflexes • Elevated vibration threshold at toes and ankles • Decreased sensitivity to pain and temperature in a stocking distribution

31. NRTI associated DSSP • Thought to be secondary to mitochondrial toxicity from ddI, d4T or ddC • Clinically indistinguishable from HIV-related DSSP • Temporal relationship to NRTI drug use • Up to 30% of patients affected; after 3-6 mo of use • May be permanent • Increase risk associated with advanced HIV disease, alcoholism, diabetes, vitamin B12 or thiamine deficiency, and neurotoxic drugs (e.g. INH)

32. NRTI associated DSSP (2) • Early recognition is critical • NRTI dosing • May be dose-reduced • May be stopped and switched to an alternate non-toxic antiretroviral agent • Symptomatic relief may begin to be noted approximately 4 weeks after discontinuation of the neurotoxic antiretroviral • In some patients, symptoms may persist, most likely because of coexistent HIV DSSP

33. Assessment of Neuropathic Pain • History: onset, duration, character, and severity (scale 1-10) • Physical examination: • Pain and temp (diminished sensation in DSSP) • Ankle reflexes (absent or depressed in DSSP) • Vibratory (elevated thresholds at the toes in DSSP) • Proprioception and muscle strength (preserved except in severe cases of DSSP)

34. Pharmacologic Management of Neuropathic Pain • Mild pain: Non-opioid analgesics • Ibuprofen 600-800mg orally three times per day • Paracetamol (Acetaminophen) • Moderate-to-severe pain: opioid analgesic combinations • Paracetamol plus codeine • Adjuvant analgesics • TCAs (Amitriptyline) • Anti-epileptics (Lamotrigine and Gabapentin) • Severe pain: opioid analgesic • Morphine

35. Return to Case Study • Yared returns to clinic 2 weeks later with continued pain despite • Dose reduction in ddI (200 bid ->125 bid) • Stopping ETOH • Taking Ibuprofen 600mg bid. • Physical examination is unchanged

36. WHO 3-step Analgesics Ladder 3 severe • Morphine • Hydromorphone • Methadone • Levorphanol • Fentanyl • Oxycodone • ± Adjuvants 2 moderate • A/Codeine • A/Hydrocodone • A/Oxycodone • A/Dihydrocodeine • ± Adjuvants 1 mild • ASA • Acetaminophen • NSAIDs • ± Adjuvants

37. Return to Case Study • Yared returns 2 months later • He is tachypneic, cyanotic, delirious, and unable to stand. • He says to you “I can’t breath”.

38. Dyspnea • A subjective awareness of difficulty or distress associated with breathing • Mechanisms are not well understood • Often ignored by health professionals • The patient's report is the best indicator of dyspnea • Not respiratory rate and oxygenation status • Often takes a chronic course of respiratory decline • Punctuated by episodes of acute shortness of breath and increased anxiety

39. Causes of Dyspnea in HIV • Opportunistic infections • Pulmonary malignancies • Pneumothorax • Asthma • Bronchiectasis • Pulmonary embolism • Severe anemia • Congestive heart failure • Debilitation / severe wasting

40. Assessment of Dyspnea • History • Onset, duration, PCP-prophylaxis • Physical exam • Vitals, Pulmonary, Cardiac, Extremities, etc • Diagnostic testing • CXR, CBC, Chemistry • Prompt diagnosis • Ensure best chance of curative treatment

41. Return to Case Study • Onset of dyspnea was gradual, and associated with dry cough and fever. He stopped taking Bactrim one month ago • T 38.5 HR 110 BP 98 / 70 RR 35 • Pale, cyanotic, fatigued • Cardiac and lung exam were normal • No lower extremity edema • Laboratory: • Hgb 5 gm/dl, MCV 104, Creatinine 1.1.

42. Introductory Case: Yared (cont.) © Slice of Life and Suzanne S. Stensaas

43. Introductory Case: Yared (cont.) • Yared was admitted to the hospital and started on high dose Co-trimoxazole plus steroids for treatment of PCP • He was also provided a blood transfusion.

44. Nonpharmacologic Treatment of Dyspnea • Position patient for comfort • Prop patient forward using pillows • May allow better lung expansion / gas exchange • Provide cool circulating air • Encourage presence of family and caregivers • Consider pursed-lip breathing • Promote soothing activities, such as prayer or listening to relaxing music

45. Oxygen Therapy • Titrated to comfort is recommended for terminally-ill, hypoxemic, and dyspneic patients • Role in treating patients who are not hypoxemic is less clear • Many patients and families believe that oxygen can alleviate shortness of breath • If it does no harm, oxygen administration may confer a psychological benefit

46. Pharmacologic Management of Dyspnea • Opioids - the primary modality • Mechanism of action is not clearly understood • Start low dose (5 to 10 mg PO morphine or 2 to 4 mg IV or SC morphine) • Start early in course of dyspnea • help reduce the effects of respiratory depression • allows for rapid titration to levels that can comfort the patient and reduce anxiety

47. Pharmacological Management of Dyspnea • Anxiolytics • Should be considered as a second-line intervention • Used when a "true” anxiety (psychological rather than physiologic in origin) is perceived • Disease specific treatment • Bronchodilators • Diuretics • Steroid • Antibiotics

48. Cough • Violent expiration of air through the glottis • Thought to result from irritation and inflammation of sensory receptors in the tracheobronchial tree • Usually related to • Increased mucus production • Aspiration of mucus • Gastric contents

49. Cause of Cough in HIV • Inflammatory processes caused by infections • Tuberculosis • Bacterial / fungal pneumonia • Bronchial lesions • Lung parenchymal disease

50. Management of Cough • Avoid stimuli that may induce coughing • smoke, cold air, exercise • Elevate head of bed (reduce gastroesophageal reflux) • Bronchodilators • Corticosteroids • Cough suppressant (when no therapeutic reason to stimulate cough) • Opioid based medicine