Palliative Care and End of Life Issues

1. Palliative Care and End of Life Issues Christina Price, MPH Delta Region AIDS Education and Training Center

2. Objectives • Define palliative/end stage care • Discuss approaches to palliative/end stage care • Discussing end of life care with the patient • Cultural/spiritual issues • Pain management • Understand the process of Advanced Care Planning

3. What is Palliative Care? • Treatment that focuses on reducing the severity of disease symptoms rather than providing a cure • Includes psychosocial and medical care • Offer throughout the illness • Including end of life • Relieve the burden of illness on both patient and family • Recognize your own discomfort

4. Why Palliative Care for People with HIV/AIDS? • Dramatic changes in care for HIV-infected pts • Shift in the course of dying from HIV/AIDS • Expanded definition of palliative care • Pts with HIV infection have palliative care needs at each stage of the illness

5. Approaches to Palliative & End Stage Care:Pain Management PAIN IS ONE OF THE MOST DISTRESSING PREVALENTFEARED SYMPTOMS AT END OF LIFE

6. Approaches to Palliative & End Stage Care:Pain Management • Pain is subjective • Occurs in 30-60% of HIV/AIDS patients • Significantly under-treated, especially in women • HIV-associated peripheral neuropathy • Typically presents as distal sensory polyneuropathy • May be related to HIV itself or medication toxicity • Assess at every visit

7. Name That Pain

8. Approaches to Palliative & End Stage Care:Pain Management • Pain Assessment • Determine type of pain • Nociceptive – responds well to opioids • Neuropathic – responsive to tricyclics, anticonvulsants • W-I-L-D-A • Words to assess pain • Intensity: choose from several pain scales • Location • Duration: is the pain always there? • Aggravating or alleviating factors

9. Name That Pain

10. Approaches to Palliative & End Stage Care:Pain Management • Treatment Goal • Achieve optimal patient comfort with minimal medication adverse effects • Non-pharmacologic interventions • Relaxation techniques • Deep Breathing • Meditation • Guided imagery • Massage • Reflexology • Acupuncture • Prayer

11. Approaches to End Stage Care:Pain Management • Pharmacologic Interventions • 3-step Analgesic Ladder • Step 1: Non-opiates for mild pain (scale 1-3) • Step 2: Mild opiates for moderate pain (scale 4-6) • Step 3: Opioid agonist drugs for severe pain (scale 7-10)

13. Name That Pain

14. Myths and Misconceptions About Opioids • “Anyone who takes opioids for pain control will become addicted.” • Fact: Studies repeatedly show that the incidence of addiction in people given opioids to relieve cancer pain is less than 0.1%.

15. Myths and Misconceptions About Opioids • “If strong opioids are used too soon, there will be nothing left for later.” • Fact: There is no ceiling on the amount of opioid analgesic that can be given. • The dose may be adjusted up or down to ANY DOSE that effectively relieves the patient’s pain.

16. Myths and Misconceptions About Opioids • “Clock watching is a sign of addiction.” • Fact: Clock watching is a sign that the PLAN is wrong! • Either the order is for a medication with a duration that is too short for the frequency to be given, or the dose ordered is below the effective level for that patient.

17. Myths and Misconceptions About Opioids • “We must believe what the patient tells us about their pain.” • No, we must only ACCEPT what the patient tells us about their pain.

18. Some Common Adjuvant Analgesics • Any drug that has a primary indication other than pain but is analgesic in some painful conditions • “Add-on” therapy to an opioid regimen • Anticonvulsants – Muscle relaxants • gabapentin (Neurontin) • diazepam (Valium) • carisoprodol (Soma) • Antidepressants – Topical agents • amitriptyline (Elavil) • capsaicin (Zostrix) • fluoxetine (Prozac) • EMLA cream

19. Name That Pain

20. Approaches to Palliative & End Stage Care:Communication

21. The Important Role of Good Communication • Clinicians with good communication skills identify patients’ problems more accurately • We can’t predict patients’ wishes • Patients and their family members say its important • Patients are more satisfied with care and better adjusted psychologically

22. Communication Competencies • Listen to patients • Encourage questions from the patients • Talk with patients in an honest and straightforward way • Gives bad news in a sensitive way • Prepare info, location, setting • Find out what they already know • Ask how much they want to know • Share the information • Respond to the patient’s emotion • Negotiate a concrete follow up step

23. Communication Competencies • Give enough information to understand their illness and treatments • Tell patients how this illness may affect their life • Guide patient and family to helpful resources • Be willing to talk about dying • Be sensitive to when patients are ready to talk about death • Talk with patients about what their dying might be like

24. Preparing for a Discussion About End of Life Care

25. Common Misconceptions About Addressing End Stage Care • The discussion will be too depressing • The patient has never thought about the seriousness of their condition • We stimulate suicidal ideation • This represents abandonment of primary patient care

26. Communication Barriers:Clinicians • Discomfort with the topic • I have too little time during appointments • I worry that discussion will take away hope • My patient isn’t ready to talk about EOL • My patient’s ideas about care change over time • My patient has not been very sick yet

27. Communication Barriers:Patients • I don’t like talking about getting sick • I have concerns about bringing up assisted suicide • I would rather concentrate on staying alive • I have not been very sick • I don’t know what kind of care I want if I get very sick

28. Preparing for a Discussion About End of Life Care • Advance preparations • Knowledge of patient/family and disease • Review goals of discussion • Plan timing, location, and setting • As early as possible in course of illness • Quiet and private room • Appropriate people present • Family, friends, staff, interpreter

29. Holding a Discussion About End-of-Life Care • Elicit patient/family’s understanding and values • Use language appropriate to the patient • Align patient and clinician values • Use repetition to show you are listening • Acknowledge emotions, difficulty • Use reflection to show empathy • Tolerate silences

30. Finishing a discussion about end of life care • Achieve a common understanding • Make recommendations • Don’t leave patient/family feeling deserted • Ask if there are any questions • Develop a plan for follow up • When you will meet again • How to reach you in the meantime

31. Questions for Follow Up • How are you feeling? • Tell me about your good days. • How many have you had in the last month? • Are you having pain or discomfort? • Are there things you worry about when you have a bad day? • What have you been told about your condition? • What does that mean to you? • Have you considered what you would want to happen if you were close to dying?

32. Approaches to Palliative & End Stage Care:Cultural/spiritual issues

33. Approaches to Palliative & End Stage Care:Cultural/spiritual issues • Attitudes differ toward palliative and end of life care • Based on culture and religion • Discussing EOL care • Discussing sicknesses and probability of death • Decision making • Treatment

34. Cultural differences: Survey of 800 patients Should a patient: Blackhall, JAMA, 1995; 274:820

35. Harm in Discussing Death? • Some people believe discussing death can bring death closer • African Americans • Some Native Americans • Immigrants from China, Korea, Mexico

36. Case Study • A physician attempts to discuss advanced directives before going into a life-threatening surgery + • Traditional Navajo values expect clinicians to speak positively = • Advanced care planning viewed as harmful and unacceptable

37. Decision Making • Primary Decision Makers Patient Family Physician

38. Treatment Preferences • Work to accommodate treatment preferences • Complementary & Alternative Medicine (CAM) • Healing ceremony/prayers • Acupuncture • Herbs (topical and oral)

39. Herbal Supplements of Concern • Echinacea: may cause progression of HIV • Milk Thistle:may increase the levels of other drugs by slowing down the liver enzymes that process them • St. John’s Wort: may reduce HAART levels & interfere with chemotherapy • Kava: may cause liver dysfunction • Garlic Supplements:may lower levels of certain PIs

40. The Spiritual Dimension • Challenged to explore & answer questions that give purpose and meaning to life • Who am I? • What is my purpose in this world? • Do I have meaning? • End stage illness and the stigma of HIV can bring spiritual concerns to the forefront

41. Spiritual Assessment & Care • Be present with the patient • Communication and listening skills • Questions to stimulate discussion (the tell-me-about approach) • What is important for us to know about your faith or spiritual needs? • How can we support you needs and practices? • Do you have an image of a higher power? • Who do you go to for support?

42. Religion and Spirituality • What has been most important in your life? • What are you thankful for? • What has made you happy? • What is your source of strength now? • Is there anything that feels unfinished?

43. Exploring Cultural Beliefs • “What do you think might be going on?” • “If we needed to discuss a serious medical issue how would you and your family want to handle it?” • “Would you want to handle the information and decision-making or should that be done by someone else in the family?” • Avoid using family members as translators

44. Advanced Care Planning

45. Advance Care Planning • A communication process rather than a legal process • A way of planning for future medical care • A mechanism of ensuring that care received matches patient’s values and goals • Two main products: • Living Will Advance Directive • Health care agent or proxy

46. 5 Steps for Successful Advance Care Planning • Introduce topic • Structure the discussion • Document patient preferences • Review and update when clinical course changes • Apply directives when need arises

47. 1) Introduce Topic • “What have you been thinking about a living will? • Explain the process • Determine the patient’s comfort level • “Do you feel ready to talk more about this today?”

48. 2) Structure the Discussion • Who do you want to make health care decisions for you when you can’t make them? • What kind of medical treatment do you want/don’t want? • Life support, coma, brain damage • How comfortable do you want to be? • Pain, cleanliness, spiritual readings, music, personal care • How do you want people to treat you? • Company, prayers, hand holding, pictures, home death • What do you want your loved ones to know? • Forgiveness, fear, respect for wishes, counseling, remains

49. 3) Document Patient Preferences • Topics to Consider • Pain management • Artificial nutrition and hydration • Mechanical ventilation • Dialysis • Blood transfusion • Sign the documentation & place in chart • Encourage patient to keep copies

50. 4) Review and Update • Occurs after a clinical event as a result of disease progression • As disease progresses allow for evolution in • Patient understanding • Patient preferences • Document changes