End Stage Renal Disease and End of Life

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 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) % Change from previous year Adjusted rate (per million/year) % Change from previous year 1996 77, 018 n/a 278 n/a 328 n/a 1997 82, 116 6. 6 293 5. 3 343 4. 4 1998 87, 353 6. 4 308 5. 3 360 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 3. 5 336 2. 6 380 1. 8 2002 100, 233 2. 3 340 1. 3 381 0. 1 2003 102, 770 2. 5 345 1. 5 382 0. 3 2004 104, 560 1. 7 349 1. 2 382 -0. 1 2005 106, 662 2. 0 353 1. 2 382 0. 0 2006 110, 342 3. 5 362 2. 5 387 1. 4 2007 110, 381 0. 0 359 -0. 9 379 -2. 1 2008 111, 899 1. 4 360 0. 3 375 -1. 0 2009 115, 508 3. 2 369 2. 5 379 1. 1 2010 115, 920 0. 4 367 -0. 6 372 -2. 0 2011 113, 796 -1. 8 358 -2. 5 358 -3. 8 2012 115, 602 1. 6 360 0. 7 355 -0. 8 2013 118, 119 2. 2 366 1. 7 355 0. 2 2014 120, 688 2. 2 370 1. 1 354 -0. 3 Data Source: Reference Tables A. 1, 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 4

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 Holley J L CJASN 2012; 7: 1033 -1038

Life Expectancy of Elderly Patients 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 nonrenal 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