Coordination of Hospice and Palliative Care in ESRD

1. Coordination of Hospice and Palliative Care in ESRD Module 4 Developed by ANNA and the Kidney End-of-Life Coalition

2. Objectives • List three (3) factors associated with the need for providing hospice care to kidney patients. • Describe the Medicare Hospice Benefit, including the requirements for ESRD patients to receive hospice care. • Identify three (3) barriers to providing hospice care for kidney patients.

3. Why is hospice care relevant to ESRD? 1. High symptom burden of ESRD • Aging population • Shortened life expectancy/high mortality rate • Multiple comorbidities 2. Poor prognosis of some elderly stage 4 and 5 chronic kidney disease patients • Significant cognitive impairment 3. Underutilization of hospice in ESRD • High discontinuation of dialysis rate (26% in US) • Poor quality of death

4. High Symptom Burden of ESRD • HD patients’ median number of symptoms = 9 • Pain in over 50% • Associated with impaired Health Related Quality of Life (HRQoL) • Associated with depression Source1

5. Association Between Symptoms and Quality of Life Measures Source4

6. Age of Prevalent ESRD Patients Source5 (Table B.1)

7. High Mortality Rate • Annual rate (23%) or > 70,000 deaths • 16 – 37% life expectancy (age and sex matches) • 8% CPR survival to hospital discharge • High in-hospital deaths • High percentage of co-morbidities Source6

8. Life Expectancy – ESRD Patients Sources5 (Table I)

9. Survival Rates for Cancer and ESRD Patients • Survival rates are lower for ESRD than for cancer patients. Source7

10. Predictors of Poor Prognosis for ESRD Patients • Age • Functional ability • Nutritional status • Comorbid illnesses (e.g. DM, MI, CHF)

11. Increased Risk Factors for Older Patient Deaths • Advanced age in elderly patients (aged 75 years or greater) • Patients with high comorbidity scores (e.g. modified Charleston Mobility score of 8 or greater) • Marked functional impairment (e.g. Karnofsky performance status score < 40) • Severe chronic malnutrition (e.g. serum albumin level < 2.5 g/dL using the bromcresol green method)

12. Charleston Comorbidity Index (CCI) Prognosis from CCI Source8

13. Other Prognostic Indicators for Increased Mortality Risk • Elevated C- Reactive Protein levels • Low BMI < 18.5, undernourished, cachexic appearance • Increased Protein Catabolic Rate (PCR) • Elevated Malnutrition Inflammation Score (MIS) • Subjective Global Assessment of Nutritional Status (Baker & Detsky) • Low cholesterol • Low serum phosphorus • Low Vitamin D levels • Decreased skinfold measurements • Elevated troponin, BNP • Low BP • Use of a central venous catheter for dialysis access • Poor functional status – walking, transferring ,ADLs etc

14. Underutilization of Hospice in ESRD • 2009 Dialysis Deaths Source9

15. Benefits of Hospice in ESRD • Hospice services reduce the number of hospitalizations initiated by end-of-life events • Reduces end-of-life costs per patient • Patients are afforded the option of living and dying at home. Among patients who withdrew: • 11% of those not receiving hospice care died at home • 45% of those receiving hospice care died at home Source10

16. What is the Medicare Hospice Benefit (MHB)? • Medicare Benefit Policy ManualChapter 9 – Coverage of Hospice Services Under Hospital Insurance • 10 – Requirements – General: “Hospice care is a benefit under the hospital insurance program. To be eligible to elect hospice care under Medicare, an individual must be entitled to Part A Medicare and be certified as terminally ill. An individual is considered to be terminally ill if the medical prognosis is that the individual’s life expectancy is six months or less if the illness runs its normal course […] Medical services for a condition completely unrelated to the terminal condition for which hospice was elected remain available to the patient if he or she is eligible for such care.” Source11

17. Medicare Hospice Benefit, con’t • Medicare Benefit Policy ManualChapter 11, End Stage Renal Disease • 50.6.1 – Home Health and Hospice Benefits Available for ESRD Beneficiaries:“Medicare beneficiaries can receive care under both the ESRD benefit and the home health or hospice benefits. The key is whether or not the services are related to ESRD.” • 50.6.1.4 – Coverage Under Hospice Benefit:“If the patient’s terminal condition is not related to ESRD, the patient may receive covered services under both the ESRD benefit and the hospice benefit. A patient does not need to stop dialysis treatment to receive care under the hospice benefit. Consequently, hospice agencies can provide hospice services to patients who wish to continue dialysis treatment.”

18. Eligibility for the MHB • Eligibility for the MHB requires all of the following conditions are met: • Patient is eligible for Medicare Part A (hospital insurance) • The attending physician and the hospice medical director certify that the patient is terminally ill (6 months or less to live if the illness runs its normal course) • Patient signs a statement choosing hospice care instead of other Medicare-covered benefits to treat their terminal illness Note: Medicare will still pay for covered benefits for any health problems that aren’t related to the patient’s terminal illness • Patient receives care from a Medicare-approved hospice program

19. Hospice Certification • The written certification must include: • The statement that the individual’s medical prognosis is that their life expectancy is 6 months or less if the terminal illness runs its normal course; • Specific clinical findings and other documentation supporting a life expectancy of six months or less; and • Signatures of the attending physician and hospice medical director

20. ESRD as a Terminal Diagnosis for Hospice • ESRD may be used as a terminal diagnosis if: • The patient is not seeking dialysis or transplant; and • Cr clearance < 10 ml/min (15 for DM) • Serum creatinine > 8 (6 for DM) • Signs/symptoms of renal failure • Or, the hospice provider agrees to be responsible for the cost of the dialysis treatments, should the patient wish to continue with dialysis

21. Some Facts about Hospice Care • Hospice is given in periods of care • Patients can get hospice care for two, 90-day periods followed by an unlimited number of 60-day periods • At the start of each period of care, the hospice medical director or other hospice doctor must recertify that the patient is terminally ill to continue hospice care • Hospices are paid a per diem rate based on the number of days and level of care provided during the election period. Levels of care are defined as: • Routine Home Care • Continuous Home Care • Inpatient Respite Care • General Inpatient Care Source12

22. Discharge from Hospice • Discharge from hospice will occur as a result of one of the following: • The beneficiary decides to revoke the hospice benefit • The beneficiary moves away from the geographic area that the hospice defines in its policies as its service area • The beneficiary transfers to another hospice • The beneficiary’s condition improves and he/she is no longer considered terminally ill. In this situation, the hospice will be unable to recertify the patient. • The beneficiary dies

23. Patient Rights • Patients have the right to change providers only once during each period of care • Patients have the right to ask for a review of their case if they are found to not be eligible for further hospice care because of improvement in their condition • The hospice provider should give notice explaining the patient’s right to an expedited review by an independent reviewer hired by Medicare, called a Quality Improvement Organization (QIO) • Conditions for Coverage for ESRD Facilities, Subpart C – Patient Care 494.70, (a) Standard: Patients’ Rights • (6) The patient has a right to be informed about his or her right to execute advance directives and the facility’s policy regarding advance directives Source13

24. Nursing Guidelines • ANNA Standard of Care (page 128) • “The patient and family will receive guidance with advance care planning. The patient will receive appropriate pain and symptom management, and psychological and spiritual support throughout the chronic kidney disease and dying experience.” • Role of the APN • Cannot certify terminal illness to initiate hospice • Can be designated as attending if patient requests them to and can bill for services provided • A nurse practitioner (NP) serving as an attending physician should participate as a member of the interdisciplinary group that establishes and/or updates the individual’s plan of care. The NP may not serve as or replace the medical director or physician designee. • Services provided by an NP who is not the patient’s attending physician are included under nursing care

25. ESRD Scenarios for Hospice Referral • ESRD patient with terminal lung cancer still benefitting from and wishing to continue dialysis • ESRD patient with end stage heart failure who wishes to continue dialysis • ESRD patient who wishes to withdraw from dialysis • ESRD patient with a gangrenous foot who wishes continued dialysis but no surgery

26. Contracting with Dialysis Providers and Hospice • If the hospice plan includes palliative dialysis, the hospice company will negotiate a rate to reimburse the dialysis center from their payment from Medicare at an unbundled rate of the Medicare allowable • The plan is developed with the patient, hospice provider and patient’s nephrologist • Dialysis goals change from optimum care to control of symptoms (usually 1-2 treatments per week)

27. What are the barriers to providing hospice care for kidney patients? • Lack of education by hospices, nephrologists, renal healthcare team, patients and families • Cost of care • Confusion regarding the differences between palliative care and hospice services

28. Barrier: Lack of Education • Hospice providers • May be unaware that dialysis treatments may be a part of the palliative care plan • May be unaware that patients can receive hospice and dialysis benefits simultaneously under specific circumstances • Nephrologists • May need more education about how to introduce end-of-life care discussions and assist patients/families in making decisions • May not understand what hospice services are available or how to make referrals • Do not routinely refer patients to hospice when they choose to withdraw from dialysis

29. Barrier: Lack of Education, con’t • Renal Health Care Team • Lack of confidence in discussing end-of-life issues with dialysis patients (social workers are generally more knowledgeable than nurses or managers) • Lack of knowledge about referral process and rules for referral • Fear of bringing down dialysis facility’s outcomes measures • Patients and Families • Usually welcome beginning conversation about preferences for care in advance of condition deterioration • May have difficulty accepting a terminal diagnosis, necessitating early discussions • May be unaware of benefits of palliative care and hospice

30. Barrier: Cost of Care • Potential cost barriers include: • Hospice providers may choose not to cover the cost of the dialysis treatment if the patient is not eligible for the MHB • Families may be financially dependent on the patient’s income and do not wish the patient to stop dialysis • Payment depends on ESRD diagnosis • If the patient has a non-ESRD diagnosis as a reason for hospice referral, the patient may continue dialysis and be on hospice at the same time – it’s the patient’s choice • If the patient has no other diagnosis for hospice referral, other than ESRD, or his/her terminal diagnosis is a direct result of the ESRD, then the hospice would have to pay for the dialysis treatment from their per diem reimbursement

31. Barrier: Palliative Care vs. Hospice Care • Palliative care • The goal of palliative care is to prevent and relieve suffering and to support the best possible quality of life for patients and their families, regardless of their stage of disease or the need for other therapies, in accordance with their values and preferences. The patient does not have to have a prognosis of 6 months or less to live. • Elements of palliative care include: • Continuous pain and symptom assessment and control • Psychosocial and spiritual support to the family

32. Barrier: Palliative Care vs. Hospice Care, con’t • Hospice Care • The goal of hospice care is to provide pain and symptom management to the patient who, by certification of two physicians, has 6 months or less to live, if the disease runs its normal course. • Elements of hospice care include: • Nursing services • Hospice aide service • Psychosocial, spiritual and bereavement support

33. Palliative Care Adjustments • Review and adjust dialysis medications (i.e. hold ESA, IV Iron, Vitamin D Analogs) • No lab draws unless requested by hospice physician for management of a specific symptom • Schedule dialysis to limit fluid overload

34. Model of Quality of Life • Well-being: physical, psychological, social and spiritual Physical Functional Ability Strength/Fatigue Sleep & Rest Nausea Appetite Constipation Pain Psychological Anxiety Depression Enjoyment/Leisure Pain Distress Happiness Fear Cognition/Attention Quality of Life Social Financial Burden Caregiver Burden Roles and Relationships Affection/Sexual Function Appearance Spiritual Hope Suffering Meaning of Pain Religiosity Transcendence

35. Identifying Patients At Risk to Die in 6-12 Months • The Surprise Question: “Would I be surprised if this patient dies in the next year?” • Estimate of prognosis is based upon patient’s age, functional status, medical condition, including comorbidity and recent sentinel events, and this “surprise” question • Surprise question prognostic tool is available online: http://touchcalc.com/calculators/sq • There is not the same degree of precision of tools to estimate prognosis for patients with AKI Sources16, 17

36. Clinical performance measures for quality care for dying dialysis patients • Estimate of prognosis • Patient designation of a healthcare agent • Completion of an end-of-life care plan, including preferences for life-sustaining treatments and preferred site of death • Pain and symptom assessment and management • Timely referral to hospice

37. Two (2) Roads to Death THE DIFFICULT ROAD Confused Tremulous Restless Hallucinations Normal Mumbling Delirium Sleepy Myoclonic Jerks Lethargic Seizures Obtunded THE USUAL ROAD Semicomatose Comatose Death

38. Following the Five “Cs” • Competence • Collegiality • Communication • Continuity of Care • Compassion “Focus discussion on not if, but rather when to switch from restorative/invasive care to palliation.” Source18

39. Remember… “Care of ESRD patients on dialysis requires expertise not only in the medical maintenance of patients on dialysis but also in the palliative care that focuses on management of pain and other symptoms, advance care planning and attention to ethical, psychosocial and spiritual issues related to starting, continuing withholding and stopping dialysis.” Source19

40. Educational Resources • Kidney End-of-Life Coalition Websitewww.kidneyeol.org • RPA/ASN’s “Shared Decision-Making in the Appropriate Initiation of and Withdrawal from Dialysis, 2nd Edition” • Visit www.renalmd.org to order a hard copy • ANNA Online Professional Education • Additional educational modules on end-of-life care are available at www.prolibraries.com/anna

41. References • Weisbord S, Fried L, Arnold R et al. Prevalence, Severity, and Importance of Physical and Emotional Symptoms in Chronic Hemodialysis Patients. J Am Soc Nephrol. 2005;16:2487-2494. • Cohen LM, Levy NB, Tessier E, Germain M. “Renal Disease.” In American Psychiatric Publishing Textbook of Psychosomatic Medicine, Levenson J (ed.). American Psychiatric Publishing, Inc., Washington, DC, 2005, pp 483-493. • Davison SN, Jhangri GS, Johnson JA. Cross-sectional validity of a modified Edmonton symptom assessment system in dialysis patients: A simple assessment of symptom burden. Kidney Int. 2006;69(9):1621-1625. • Kimmel P, Emont P, Newmann J, Danko H, Moss A. ESRD patient quality of life: symptoms, spiritual beliefs, psychosocial factors, and ethnicity. Am J Kidney Dis. 2003;42(4):713-721. • U.S. Renal Data System, USRDS 2010 Annual Data Report: Atlas of Chronic Kidney Disease and End-Stage Renal Disease in the United States, National Institutes of Health, National Institute of Diabetes and Digestive and Kidney Diseases, Bethesda, MD, 2010.**The data reported here have been supplied by the United States Renal Data System (USRDS). The interpretation and reporting of these data are the responsibility of the author(s) and in no way should be seen as an official policy or interpretation of the U.S. government. • Cohen, L, Davis, M. Did this patient die with hospice? New questions in caring for patients with ESRD [PowerPoint]. February 28, 2006. Available at: http://www.kidneyeol.org/DavisPPT.pdf. Accessed September 10, 2010. • Moss, A. Relevance of Palliative Care and Hospice for Dialysis Patients [PowerPoint]. January 20, 2010. Available at: http://www.kidneyeol.org/Moss_1-20-10.pdf. Accessed September 10, 2010. • Beddhu S, Bruns FJ, Saul M, Seddon P, Zeidel ML. A simple comorbidity scale predicts clinical outcomes and costs in dialysis patients. Am J Med. 2000;108:609-613. • Standard Information Management System [Network database]. Midlothian, VA: Mid-Atlantic Renal Coalition; 2010.

42. References • Schmidt, R. Hospice in ESRD: To Withdraw or Not To Withdraw [PowerPoint]. October 2005. Available at: http://www.kidneyeol.org/SchmidtPPT.pdf. Accessed September 10, 2010. • Medicare Benefit Policy Manual. Baltimore, MD: Centers for Medicare & Medicaid Services; 2010. Publication 100-02. • Medicare Claims Processing Manual. Baltimore, MD: Centers for Medicare & Medicaid Services; 2010. Publication 100-04. • Conditions for Coverage for End-Stage Renal Disease Facilities. Baltimore, MD: Centers for Medicare & Medicaid Services, US Dept of Health and Human Services; 2008. Vol. 73, No. 73. • American Nephrology Nurses’ Association. End-of-Life Decision-Making and the Role of the Nephrology Team [PowerPoint]. 2004. Available at: http://www.prolibraries.com/library/flash/serveflash.php?libname=anna&sessionID=317. Accessed September 10, 2010. • Renal Physicians Association/American Society of Nephrology Working Group. Clinical Practice Guideline on Shared Decision-Making in the Appropriate Initiation of and Withdrawal from Dialysis, 2nd Edition.Rockville, MD; 2010. • Moss A, Ganjoo J, Sharma S et. al. Utility of the “Surprise” Question to Identify Dialysis Patients with High Mortality. Clin J Am Soc Nephrol. 2008;3:1379-1384. • Cohen LM, Ruthhazer R, Moss AH, Germain MJ. Predicting Six-Month Mortality for Patients who are on Maintenance Hemodialysis. Clin J Am Soc Nephrol. 2009, Dec 3. • Ronco C. Do Not Dialyze. Int J Artif Organs. 2006;29(11):1021-1022. • End-Stage Renal Disease Workgroup. Recommendations to the Field. Promoting Excellence in End-of-Life Care, The Robert Wood Johnson Foundation. Missoula, MT; 2002.