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

2. 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

3. 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)

4. 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,
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

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

6. 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?

7. 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:

9. 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:

10. Life Expectancy for Elderly Patients with High Comorbidity
Murtagh F E; Nephrol Dial Transplant 2007;22:

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

12. 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:

13. 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:

14. 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:

15. 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:

16. What happens when dialysis is not initiated?
Murtagh F E J Palliat Med 2007;10:

17. 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

18. 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

19. 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

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

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

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

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

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

25. 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