End Stage Renal Disease and End of Life Thanh-Mai Vo, M.D. Saint Louis University Department of Internal Medicine Division of Nephrology

Objectives Incidence and prevalence of ESRD Prognosis of patients with ESRD Understanding ESRD, the patient’s perspective Shared Decision-Making How to manage patients with ESRD who decide to forego dialysis

Kidney Disease Statistics for the United States The number of incident (newly reported) ESRD cases in 2014 was 120,688 The number of ESRD prevalent cases continues to rise by about 21,000 cases per year From The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) https://www.niddk.nih.gov/health-information/health-statistics/kidney-disease

Table 1.1 Trends in annual number of ESRD incident cases, unadjusted and adjusted* incidence rate (per million/year) of ESRD, and annual percent change, in the U.S. population, 1996-2014 Incident count Unadjusted rate Adjusted rate Year No. cases % Change from previous year Unadjusted rate (per million/year) Adjusted rate (per million/year) 1996 77,018 n/a 278 328 1997 82,116 6.6 293 5.3 343 4.4 1998 87,353 6.4 308 360 4.8 1999 91,431 4.7 319 3.4 368 2.4 2000 94,662 3.5 327 2.5 374 1.5 2001 98,005 336 2.6 380 1.8 2002 100,233 2.3 340 1.3 381 0.1 2003 102,770 345 382 0.3 2004 104,560 1.7 349 1.2 -0.1 2005 106,662 2.0 353 0.0 2006 110,342 362 387 1.4 2007 110,381 359 -0.9 379 -2.1 2008 111,899 375 -1.0 2009 115,508 3.2 369 1.1 2010 115,920 0.4 367 -0.6 372 -2.0 2011 113,796 -1.8 358 -2.5 -3.8 2012 115,602 1.6 0.7 355 -0.8 2013 118,119 2.2 366 0.2 2014 120,688 370 354 -0.3 From the United States Renal Data System (USRDS) Data Source: Reference Tables A.1, A.2, A.2(2) and special analyses, USRDS ESRD Database. *Adjusted for age, sex, and race. Abbreviations: ESRD, end-stage renal disease; n/a, not applicable. 2016 Annual Data Report, Vol 2, ESRD, Ch 1

There has been a decline in “treated” ESRD patients > 65 years and older however the incidence rate (per million/year) is still high

Prognosis Is the overall prognosis different between those with CKD stage 5 (who choose not to go on dialysis) vs. those with ESRD on dialysis?

Comparing Functional Ability Patients who has CKD stage 5 appear to be stable for some time until they likely become uremic and die when they forgo dialysis. The point of death does not appear to be much sooner than those who chose to be dialyzed (ESRD patients). Understanding the illness trajectory allows providers, patients, and families to plan for health care needs and interventions over the course of chronic illness and provides a framework for the dying process Holley J L CJASN 2012;7:1033-1038

Life Expectancy of Elderly Patients Cummulative survival in those who chose dialysis were much greater than those who did not choose dialysis (~70% vs ~20%) at 5.5 years Murtagh F E; Nephrol Dial Transplant 2007;22:1955-1962

Life Expectancy for Elderly Patients with High Comorbidity Murtagh F E; Nephrol Dial Transplant 2007;22:1955-1962

Understanding ESRD What does it mean to have ESRD? What is it like to be on dialysis? Should dialysis be initiated?

Shared Decision-Making At minimum the patient and the physician should be involved The patient’s legal agent should be involved should the patient lacks decision-making capacity If allowed by the patient, family and friends can be included Galla J J Am Soc Nephrol 2000;11: 1340-1342

Withholding or Withdrawing Dialysis Patients voluntarily chooses not to be initiated on dialysis Patients who have given oral or written advance directives clearly stating that they would not want to be initiated on dialysis When legal agents refuse dialysis or request discontinuation of dialysis in a patient who does not have decision-making capacity Galla J J Am Soc Nephrol 2000;11: 1340-1342

Special Cases Withholding or withdrawing dialysis may be considered in special cases Patients with irreversible, profound neurologic impairment Patients who have terminal illness from a non-renal illness Galla J J Am Soc Nephrol 2000;11: 1340-1342

Time-Limited Trials Consider a short period of dialysis if prognosis is uncertain or in those cases where a consensus cannot be reached Galla J J Am Soc Nephrol 2000;11: 1340-1342

What happens when dialysis is not initiated? Murtagh F E J Palliat Med 2007;10:1266-76

Pain Safe to use: acetaminophen, tramadol, methadone, fentanyl, buprenorphine Fentanyl and buprenorphine can be given as transdermal patch Caution advised: oxycodone, hydromorphone Not recommended: morphine, diamorphine, meperidine Russon L Clinical Medicine 2010, Vol 10, No 3:279-81

Neuropathic Pain Safe to use: Amitriptyline can be titrated from low doses (i.e. 10 mg once a day) Caution advised: Gabapentin and pregabalin Significant dose adjustments required Max dose of gabapentin with GFR < 30 ml/min is 300 mg once a day If GFR < 20 ml/min very small doses are usually sufficient (i.e. 50 mg once a day) Russon L Clinical Medicine 2010, Vol 10, No 3:279-81

Nausea Safe to use: Ondansetron and granisetron Caution advised: Haloperidol and levomepromazine Doses need to be adjusted for GFR Sedative effects are seen in patients with low GFR Russon L Clinical Medicine 2010, Vol 10, No 3:279-81

Pruritus Emollients including hydrourea Ondansetron Anti-histamine (may not help) Russon L Clinical Medicine 2010, Vol 10, No 3:279-81

Dyspnea Oxygen Fans Positioning Opiates Diuretics Russon L Clinical Medicine 2010, Vol 10, No 3:279-81

Anxiety/Agitation Pain control Social support Benzodiazepine Haloperidol Russon L Clinical Medicine 2010, Vol 10, No 3:279-81

Restless legs Benzodiazepine Russon L Clinical Medicine 2010, Vol 10, No 3:279-81

Muscle cramps Benzodiazepine Russon L Clinical Medicine 2010, Vol 10, No 3:279-81

Take Home Points The incidence and prevalence of ERSD in the U.S. is high The prognosis of an elderly ESRD patient with severe co-morbidities is not the same as a young patient with ESRD There are certain circumstances in which foregoing dialysis is appropriate Palliative care is appropriate for patients who choose to forego dialysis