Incorporating Palliative Care Into Your Dialysis Unit

1. Incorporating Palliative Care Into Your Dialysis Unit Alvin H. Moss, MD West Virginia University

2. RWJF ESRD Workgroup Recommendation:Dialysis Units Dialysis units should institute palliative care programs that include pain and symptom management, advance care planning, and psychosocial and spiritual support for patients and families.

3. Objectives • Describe the components of a dialysis unit palliative care program • Explain how each component can be implemented • Apply the elements of palliative care to a tragic ESRD patient case

4. “Not ready to go yet” A 73 year old woman developed end-stage renal failure from multiple myeloma. She has had the multiple myeloma for six years and received numerous courses of chemotherapy. Her oncologist said that her marrow was now “burned out” and that further chemotherapy would not be of benefit. The patient had been chronically ill and had been admitted monthly for infections, anemia, and bleeding. She was anemic with a Hb of 7 and thrombocytopenic with a platelet count of 90,000.

5. “Not ready to go yet” Because she had a terminal condition, her attending physician did not think that dialysis should be offered to the patient. The patient, however, stated that she was “not ready to go yet” and that she wanted dialysis.

6. “Not ready to go yet” The patient was started on CAPD and lived for nine months. During this time, she had 13 hospital admissions for anemia, upper and lower GI bleeding, and CHF, and she was transfused with 46 units of packed RBCs and 190 units of platelets.

7. “Not ready to go yet” On the day she died, she experienced a cardiac arrest at her daughter’s home. The rescue squad was called, and the patient underwent unsuccessful CPR for one hour. She was declared dead in the hospital emergency room.

8. “Not ready to go yet” Sadly, she was no more ready to go after nine months of dialysis then she had been prior to the start of dialysis. What is missing from the care of this patient?

9. Components of a Renal Palliative Care Program • A Palliative Care Focus • -Educational activities (in-services) • -QI activities (M & M conferences) • -“Would you be surprised…?” • Pain & Sx Assessment & Management Protocols • Systematized Advance Care Planning • Psychosocial and Spiritual Support (peer counselors) • Terminal Care Protocol (includes hospice) • Bereavement Program (includes memorial service)

10. Pain and Symptom Assessment and Management Protocols

11. ESRD Patient Assessments of QOL N=165 Sites: DC, NY, WV Mean age: 60.9 yrs Gender: 52% men Dialysis duration: 44 months Race: 33% African-American Biochemical markers: Hb 11.8; Kt/V 1.6; Alb 3.7 Diabetics: 34% Karnofsky Performance Score: 60%

12. ESRD Patient Assessment of QOL Single item scale: Considering all parts of my life—physical, emotional, social, spiritual, and financial—over the past two days the quality of my life has been: Very bad 0----------------------------10 Excellent

13. Single Item Assessment of QOL

14. ESRD Patient Assessment of QOL Please list the PHYSICAL SYMPTOMS or PROBLEMS which have been the biggest problem for you over the past two days. Over the past two days, one troublesome symptom has been:_________________

15. The Importance of Pain As a Symptom

16. Types of Pain Reported

17. Association Between Reports of Troublesome Symptoms and Quality of Life Measures Total Score Note: All results statistically significant, p values <.01

18. Pain Assessment • Ask the patient and BELIEVE his/her complaint • Use a systematic approach to assessment using a validated pain scale Pain History Physical examination Diagnostic Procedures • Reassess frequently

20. WHO 3-Step Ladder 3 severe Morphine Hydromorphone Methadone Levorphanol Fentanyl Oxycodone ± Adjuvants 2moderate A/Codeine A/Hydrocodone A/Oxycodone A/Dihydrocodeine Tramadol ± Adjuvants 1 mild ASA Acetaminophen NSAIDs ± Adjuvants

21. Nociceptive pain . . . • Direct stimulation of intact nociceptors • Transmission along normal nerves • sharp, dull, aching, throbbing • somatic • easy to describe, localize • visceral • difficult to describe & localize • Tissue injury apparent • Management • opioids • adjuvant / co-analgesics

22. Neuropathic pain . . . • Disordered peripheral or central nerves • Compression, transection, infiltration, ischemia, metabolic injury • Described as burning, tingling, shooting, stabbing, electrical • Management • opioids • adjuvant / co-analgesics often required

23. Opioids to Avoid in Kidney Failure • meperidine • morphine • propoxyphene

24. Constipation . . . • Common to all opioids • Opioid effects on CNS, spinal cord, myenteric plexus of gut • Easier to prevent than treat • Start stimulant laxative at the same time as opioid • Senna • Casanthranol EPEC Module 4, 1999

25. Advance Care Planning

26. RWJF ESRD Workgroup Recommendation:Advance Care Planning Nephrologists should routinely invite patients to express their end-of-life care preferences in the required semi-annual short-term and annual long-term care planning meetings.

27. Advance Care Planning • Identification of Medical Power of Attorney • Goals of treatment • Cardiopulmonary resuscitation (CPR) • Feeding tubes • Mechanical ventilation • Dialysis • Organ and tissue donation

28. Focus on Health States, not Treatments • “ Under what conditions would you not want to live?” • “Is it more important to you to live as long as possible despite some suffering or to live for a shorter time but without suffering?”

29. Dialysis Patients’ Preferencesfor End-of-Life Care(%) Singer.JASN 1995

30. Increasing the Completion of AD by Chronic Dialysis Patients • focus on health states, not interventions (Singer, Holley) • involve surrogates in discussions (Moss, Singer, Holley, Swartz) • increase dialysis unit staff’s attention to and comfort with discussing advance directives (Perry, Holley)

31. DNR in the Dialysis Unit:A Form of Advance Directive • Poor outcomes with CPR of dialysis patients • Patients’ rights to self-determination • Patients’ belief that other patients’ wishes for DNR status should be honored

32. Psychosocial and Spiritual Support

33. RWJF ESRD Workgroup Recommendation CMS should require dialysis units to provide reasonable time for social workers to counsel patients on psychosocial issues surrounding end-of-life care. At present, social workers are not using their professional skills for psychosocial support of patients because they are given other roles such as arranging patient transportation. Others might perform these functions.

34. Role modeling Information dispensing Empathic listening Teaching how to work with the health care system Clarifying values Helping problem solve Relieving anxiety Legitimizing feelings Consumer identity Advocacy Bridging staff and patients Peer Resource Consulting

35. PRC Training

36. Questions to Explore Spiritual Issues • Is faith (religion, spirituality) important to you in this illness? • Has faith (religion, spirituality) been important to you at other times in your life? • Do you have someone to talk to about religious matters? • Would you like to explore religious matters with someone? Lo B, Quill T, Tulsky J. Discussing palliative care with patients. Ann Intern Med 1999 May;130(9):744-9.

37. Questions Useful to Discuss Spiritual and Existential Issues • What do you still want to accomplish during your life? • What might be left undone if you were to die today? • What is your understanding about what happens after you die? • Given that your time is limited, what legacy do you want to leave your family? • What do you want your children and grandchildren to remember about you?

38. Terminal Care Protocol

39. Would you be surprised if the patient died in the next year?

40. Referral to Hospice or Use of a Palliative Care Approach Recommendation No. 9, RPA/ASN CPG “…With the patient’s consent, persons with expertise in such care, such as hospice health care professionals, should be involved in managing the medical, psychosocial, and spiritual aspects of end-of-life care for these patients. Patients should be offered the option of dying where they prefer including at home with hospice care. Bereavement support should be offered to patients’ families.”

41. RWJF ESRD Workgroup Recommendation:CMS and ESRD Networks CMS should work in conjunction with hospice and the ESRD Networks to develop manuals and training for clinicians regarding coordination and linkage of dialysis and hospice care for ESRD patients.

42. RWJF ESRD Workgroup Recommendation:CMS CMS should allow application of the Medicare hospice benefit to ESRD patients who are certified by their physicians as terminally ill but choose to continue dialysis until they die.

43. “Not ready to go yet” A 73 year old woman developed end-stage renal failure from multiple myeloma. She has had the multiple myeloma for six years and received numerous courses of chemotherapy. Her oncologist said that her marrow was now “burned out” and that further chemotherapy would not be of benefit. What should have been done?

44. Bereavement Program

45. Baystate Medical Center Dialysis Unit Memorial ServiceVideotape (5 min)

46. Conclusions • Pain and symptom management are directly related to dialysis patient QOL. • Pain is the most troublesome symptom for dialysis patients. • Advance care planning is necessary to respect dialysis patients’ wishes, including for CPR. • Psychosocial and spiritual support are key components of ESRD patient care.

47. Take-Home Message The necessary components to incorporate palliative care into dialysis units are known. What is required on the part of each dialysis unit is a commitment to make it happen.