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

2. ENECENECENECENEC ENECENECENECENEC 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. ObjectivesObjectives l Describe the components of a dialysis unit palliative care program l Explain how each component can be implemented l Apply the elements of palliative care to a tragic ESRD patient case l Describe the components of a dialysis unit palliative care program l Explain how each component can be implemented l Apply the elements of palliative care to a tragic ESRD patient case

4. ENECENECENECENEC ENECENECENECENEC “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. ENECENECENECENEC ENECENECENECENEC “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. ENECENECENECENEC ENECENECENECENEC “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. ENECENECENECENEC ENECENECENECENEC “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. ENECENECENECENEC ENECENECENECENEC “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? 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)  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. Causes of Pain in Hemodialysis Patients N=103/205* Cause # Patients Percent Musculoskeletal6563 Osteoarthritis Osteoarthritis2019 Musculoskeletal Musculoskeletal1919 Osteoporosis Osteoporosis1212 RA, Bone Dis, Osteo RA, Bone Dis, Osteo1414 Related to dialysis 1414 Periph Neuropathy 1313 Periph Vasc Dis 1010 Carpal tunnel syn 22 Other1919 Davison, AJKD 2003;42:1239-1247 * 19 patients had more than one type of pain.

12. ENECENECENECENEC ENECENECENECENEC 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% 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%

13. ENECENECENECENEC ENECENECENECENEC 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 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

14. Single Item Assessment of QOL

15. ENECENECENECENEC ENECENECENECENEC 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:_________________ 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:_________________

16. The Importance of Pain As a Symptom

17. Types of Pain Reported

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

19. 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  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

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

22. 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  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

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

24. Opioids to Avoid in Kidney Failure  meperidine  morphine  propoxyphene  meperidine  morphine  propoxyphene

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

26. Advance Care Planning

27. ENECENECENECENEC ENECENECENECENEC 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.

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

29. Focus on Health States, not Treatments l “ Under what conditions would you not want to live?” l “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?” l “ Under what conditions would you not want to live?” l “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?”

30. Dialysis Patients’ Preferences for End-of-Life Care (%) Singer.JASN 1995

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

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

33. Psychosocial and Spiritual Support

34. ENECENECENECENEC ENECENECENECENEC 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.

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

36. PRC Training

37. Questions to Explore Spiritual Issues l Is faith (religion, spirituality) important to you in this illness? l Has faith (religion, spirituality) been important to you at other times in your life? l Do you have someone to talk to about religious matters? l Would you like to explore religious matters with someone? l Is faith (religion, spirituality) important to you in this illness? l Has faith (religion, spirituality) been important to you at other times in your life? l Do you have someone to talk to about religious matters? l 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.

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

39. Terminal Care Protocol

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

41. ENECENECENECENEC ENECENECENECENEC 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.” 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.”

42. ENECENECENECENEC ENECENECENECENEC 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.

43. ENECENECENECENEC ENECENECENECENEC 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.

44. ENECENECENECENEC ENECENECENECENEC “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? 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?

45. Bereavement Program

46. Baystate Medical Center Dialysis Unit Memorial Service Videotape (5 min)

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

48. ENECENECENECENEC ENECENECENECENEC 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.