1. Alvin H. Moss, MD, FACP, FAAHPM
Nephrology Care at the End of Life: New Guideline on Withholding and Withdrawing Dialysis
Alvin H. Moss, MD, FACP, FAAHPM
Section of Nephrology
West Virginia University School of Medicine

2. Alvin H. Moss, MD has disclosed no relevant financial relationships.

3. Objectives
Employ appropriate goals and management strategies for patients who are unable to proceed with rehabilitative renal replacement therapy
Describe the 2nd edition of the Shared Decision-Making in the Appropriate Initiation of and Withdrawal from Dialysis guideline
Apply the guideline recommendations to cases
Explain an evidence-based approach to prognostication in dialysis patients

4. Differing Goals for Care
Mr. Higgins (not his real name) is a 67 year-old man who has been on CCPD for several years for ESRD from diabetic nephropathy. His long-standing diabetes has been complicated by severe autonomic and peripheral neuropathy, gastroparesis, blindness, and peripheral vascular disease. Over the past two years he has had multiple prolonged hospitalizations. He is severally malnourished with a serum albumin of He is bedridden due to the diabetic involvement of his nervous system. He becomes lightheaded on sitting and cannot stand. Multiple interventions have been tried to improve his appetite and energy level with no success.

5. He has been offered TPN and hospitalization for rehabilitation, but the patient has declined most interventions. He wants to stay at home. His care is exhausting to his wife. The home health agency feels they have little to offer him. He has stopped coming for patient dialysis visits because transportation is so difficult. The patient, his wife, and the nephrology team all know that the patient is slowly dying. He wants to die at home. He does not want to stop dialysis even though he knows his health is rapidly declining. What can be done to help Mr. Higgins and family?

6. Three Points
Mr. Higgins’ goals for care are different than those of most dialysis patients.
Patient-centered care for him would look different than for another dialysis patient.
There is an available approach to achieve his goals for treatment, but it is not yet widely used in dialysis units.

7. Evidence-based
10 adult recommendations
9 pediatric recommendations
Rationales and strategies for
implementation for each
Tool kit of validated instruments
Available from RPA online store

8. Different Treatment Goals for ESRD Patients
New in the guideline is the identification of distinctly different treatment goals for ESRD patients based on their overall condition and preferences:
Patients who choose aggressive therapy with dialysis w/o limitations on other treatments-rehabilitative RRT
Patients with a poor prognosis who choose dialysis but with limitations on other treatments such as CPR, intubation, and mechanical ventilation because they want to balance life prolongation and comfort
Patients who decline dialysis and prefer that the primary goal of care be their comfort-active medical management

9. Providing Effective Palliative Care
Recommendation No. 9
To improve patient-centered outcomes, offer palliative care services and interventions to all AKI, CKD, and ESRD patients who suffer from burdens of their disease.
Recommendation No. 10
Use a systematic approach to communicate about diagnosis, prognosis, treatment options, and goals of care.

10. End-of-Life/ Hospice Care
Alvin H. Moss, MD
April 8, 2009
Relationship between
Palliative Care and EOLC
Palliative Care
Hospice is a subset of palliative care – Palliative care is the discipline, hospice is a way of delivering palliative care to patients who are acknowledged to be dying and to their families. In the US, hospice care is most often delivered in the home.
End-of-Life/ Hospice Care
End-of-Life Care

11. What’s New in the Guideline
The poor prognosis of some elderly stage 4 & stage 5 chronic kidney disease patients, many of whom are likely to die prior to initiation of dialysis or for whom dialysis may not provide a survival advantage over medical management without dialysis
An online calculator to estimate prognosis in ESRD patients
The identification of distinctly different treatment goals for ESRD patients based on their overall condition and preferences
The frequent prevalence of cognitive impairment in dialysis patients

12. What’s New in the Guideline
Recognition of advance care planning as the preferred approach for decision-making for patients who lose decision-making capacity
The under treatment of pain in dialysis patients
The underutilization of hospice in dialysis patients
Strategies to assist nephrologists with communication challenges regarding prognosis and treatment options
Recommendations with regard to pediatric dialysis decision-making

13. 10 GUIDELINE STATEMENTS: 6 TOPICS#1
Establishing a shared decision-making relationship
#2,#3
Informing patients #4
Facilitating advance care planning
#5,#6
Making decisions about initiating and discontinuing dialysis
#7,#8
Resolving conflicts about which dialysis decisions to make
#9,#10
Providing effective palliative care

14. A 40 year-old woman with ESRD from diabetic nephropathy who had started dialysis 3 months earlier was found down and unresponsive at home. EMS was called. They noted a blood sugar of zero. The patient was given D50 but did not respond. She was transported to the local ED where a repeat blood sugar was undetectable. The patient was again given an amp of D50 and started on a D10W drip. Despite the drip, over the next 24 hours the patient required additional boluses of D50 to raise her low blood sugar. The patient did not awaken. Neurology consultants diagnosed an anoxic encephalopathy from prolonged hypoglycemia.

15. Workup for the patient’s coma included a CT scan which did not show an acute intracranial process and an EEG which showed diffuse generalized slowing with no response to photic, auditory, and tactile stimuli. EEG findings were suggestive of a diffuse encephalopathic pattern due to hypoxia, hypoglycemia, metabolic disturbance, or a toxic or infectious etiology. Despite her mother’s coma, the daughter who was appointed her healthcare surrogate continued to request all possible treatment including dialysis and wound care for large necrotic ulcers on both legs from calciphylaxis.

16. The patient’s exam did not change over the subsequent six weeks nor did the EEG findings. The neurology service thought the patient had a very poor prognosis but said it could take up to six months or longer to be sure that patient would not wake up. The treating nephrologist did not think that dialysis should be continued because of the patient’s “profound neurologic impairment such that she lacked signs of thought, sensation, purposeful behavior, and awareness of self and environment.”

17. Despite a series of meetings in which the patient’s diagnosis and prognosis were explained in complete detail to the daughter and family by the nephrologist and the palliative care consultant, the daughter insisted that her mother continue to be dialyzed. Other family members thought that the patient would not want to continue on dialysis in her present condition, but the daughter became quite emotional and said that it was up to her to fight for her mother. No other nephrologist in the hospital was willing to assume care of the patient and continue dialysis.

18. Audience Response Slide
Should you…
Continue dialysis as the daughter requests
Stop dialysis because the patient is comatose
Request an ethics consultation
Seek a court order to stop dialysis

19. An ethics consultation was requested, and the ethics committee agreed with the recommendation to discontinue dialysis. When the daughter was given a week’s notice and informed that the dialysis would be discontinued at the end of the seventh week of hospitalization because the patient remained in a coma, she contacted an attorney. What should the treating nephrologist do?

20. PATIENT SAYS “NO” DIRECTLY PATIENT SAYS “NO” INDIRECTLY
Recommendation No. 5 If appropriate, forgo (withhold initiation or withdraw ongoing) dialysis for patients with AKI, CKD, or ESRD in certain, well-defined situations:
APPROPRIATE TO SAY “NO”
PATIENT SAYS “NO” DIRECTLY
Patients with decision-making capacity, who being fully informed and making voluntary choices, refuse dialysis or request that dialysis be discontinued
PATIENT SAYS “NO” INDIRECTLY
Patients who no longer possess decision-making capacity who have previously indicated refusal of dialysis in an oral or written advance directive
PROXY SAYS “NO”
Patients who no longer possess decision-making capacity and whose properly appointed legal agents/surrogates refuse dialysis or request that it be discontinued
PROVIDERS SAY “NO”
Patients with irreversible, profound neurological impairment such that they lack signs of thought, sensation, purposeful behavior, and awareness of self and environment.1,2
1J Am Soc Nephrol 1994;4(11):
2N Engl J Med 1990;322(14):

21. Resolving Conflicts about Which Dialysis Decisions to Make
Recommendation No. 8
Establish a systematic due process approach for conflict resolution if there is disagreement about what decision should be made with regard to dialysis.

22. Systematic Approach to Resolving Conflict between Patient/Family and Kidney Care Team
RPA guideline for Shared Decision-Making , 2nd ed. 2010

23. Systematic Approach to Resolving Conflict between Patient/Family and Kidney Care Team
RPA guideline for Shared Decision-Making , 2nd ed. 2010

24. Audience Response Slide
What should the nephrologist do now?
Just keep dialyzing the patient
Attempt to transfer care within the hospital
Attempt to transfer care to another hospital
Stop dialysis without further discussion

25. Conflict Resolution
In following the process, the treating nephrologist contacted
nephrologists throughout the state. No other nephrologist and hospital
was willing to accept the patient and dialyze her.
The daughter’s attorney sought a court order to force the hospital
to continue dialyzing the patient. The judge ruled that the hospital only
needed to continue dialysis for one more week to see if the family could
find a nephrologist to dialyze the patient. He was influenced in his ruling by
1) the clinical practice guideline recommending against dialysis for a person
in the patient’s condition, and 2) there was no other
nephrologist who could be found who was willing to dialyze the patient.

26. Predictors of Poor Prognosis for ESRD Patients
Age
Functional ability
Nutritional status
Comorbid Illnesses–eg, DM, PVD
RPA. Shared Decision-Making in the Appropriate Initiation of and Withdrawal from Dialysis. 2nd

27. “Would I be surprised if this patient died in the next year?”
The “Surprise” Question: A Trigger for Palliative Care Evaluation and Advance Care Planning
“Would I be surprised if this
patient died in the next year?”
Moss A., et. al. Utility of the “Surprise” Question to Identify Dialysis Patients
with High Mortality. Clin J Am Soc Nephrol 2008;3:

28. http://touchcalc.com/calculators/sq Mortality Prediction for
Mr. Higgins
Cohen LM, Ruthazer R, Moss AH, Germain MJ. Predicting six-month mortality for patients
who are on maintenance hemodialysis. Clin J Am Soc Nephrol Jan;5(1):72-9.

29. French Renal Epidemiology and Information Network
6 Month Mortality Score Prediction
Risk Factors
Points
BMI
≥ 18.5
< 18.5 2
Diabetes
Absence
Presence 1
CHF III/IV
PVD III/IV
Dysrhythmia
Risk Factors
Points
Active malignancy
Absence
Presence 1
Severe behavioral disorder 2
Totally dependent for transfers 3
Initial context
Planned
Unplanned
Couchoud C., et. al. Renal Epidemiology and information Network (REIN) registry. A clinical score to predict 6-month
prognosis in elderly patients starting dialysis for end-stage renal disease. Nephrol Dial Transplant 2009; 24(5):

30. French REIN Six-Month Mortality Rates by Risk Score in the Derivation and Validation Samples
Derivation Sample %
Validation Sample %
0 Point 8
1 Point 10
2 Points 14 17
3-4 Points 26 21
5-6 Points 35 33
7-8 Points 51 50
≥ 9 Points 62 70
All 19
Mr. Higgins’ score was 6 points!
Couchoud C., et. al. Renal Epidemiology and information Network (REIN) registry. A clinical score to predict 6-month
prognosis in elderly patients starting dialysis for end-stage renal disease. Nephrol Dial Transplant 2009; 24(5):

31. High
Mortality
Score
6 or 7
27%
1-yr

32. Reason to Consider Age > 75
“Most older members of this cohort [209,622 VA patients with stage 3 to 5 CKD], especially those ≥ 75 years, were far more likely to die than develop ESRD, even when their eGFR was severely reduced (15 to 29 ml/min per 1.73 m2).”
O’Hare AM, et al. Age affects outcome in chronic kidney disease.
J Am Soc Nephrol 2007;18:

33. Incident counts & adjusted rates, by age Figure 2.5 (Volume 2)
Incident ESRD patients; rates adjusted for gender & race. 33

34. Comparative Survival of CKD Patients over 75 Years With and Without Dialysis
Retrospective survival comparison
N=129 > 75
1st and 2nd year survival better in dialysis group except in those with greatest comorbidity score
Kaplan-Meier survival curves for those with high comorbidity (score=2), comparing 5 dialysis and conservative groups (log rank statistics <0.001, df 1, P=0.98).
Murtagh. Nephrol Dial Transplant. 2007; 22(7):

35. Independent Predictors
Study N
Dialysis
MM*
Median survival
Independent Predictors
Age (yrs)
GFR (ml/min)
Smith 2003
321
258 63
RRT MM
8.3 vs. 6.3 mo=NS
Age KPS Diabetes
Mean 61.5
< 15 CG
Joly 2003
144
107 37
RRT MM
28.9 vs. 8.9 months P<.001
KPS Social Isolation Late Referral
Diabetes Low BMI
Mean 83
Cut off ≥ 80
<10 CG
Carson 2009
202
173 29
RRT MM vs months P<.001
Age
≥70
Cut off
≤30
Murtagh 2007
129 52 77
RRT MM
MM 18 months
No survival advantage for RRT patients with high comorbidity score or ischemic heart disease.
Age Comorbidity Ischemic
Heart Disease
>75 yrs
< 15
Stage 5
Wong 2007 73 --
MM 23.4 months
1-yr survival 65%
Comorbidity
Median 79 yrs
Median 12
Range (4-31)
Ellam 2009 69
MM 21 months
Serum albumin ≤3.5 g/dL
Late referral
Median 80
<15 MDRD
*MM indicates active medical management without dialysis. Yrs indicates years. GFR indicates estimated glomerular filtration rate in milliliters per minute. RRT indicates renal replacement therapy. KPS indicates Karnofsky Performance Status score. CG indicates Cockcroft-Gault estimate. BMI indicates body mass index. MDRD indicates Modified Diet in Renal Disease study estimate. In the Smith 2003 study, survival of 10 patients who chose dialysis over medical management was not statistically significantly better than that of the 26 patients who chose medical management .

36. 2 or more  Poor prognosis1,2,3
Recommendation No. 3: Informing patients All patients with AKI, stage 5 CKD or ESRD should receive patient-specific estimates of prognosis.
2 or more  Poor prognosis1,2,3
> 75 years
High comorbidity scores (“No” to “Surprise” Question)
(e.g., modified Charlson Comorbidity score > 8)
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).
Diagnosis
Options
prognosis
Patients in this population should be informed:
Dialysis may not confer a survival advantage or improve functional status over medical management without dialysis
Dialysis entails significant burdens which may detract from their quality of life.
1 Arnold RM, Zeidel ML. Dialysis in frail elders--a role for palliative care. N Engl J Med 2009;361(16):
2 Murtagh FE, Marsh JE, Donohoe P, Ekbal NJ, Sheerin NS, Harris FE. Dialysis or not? A comparative survival study of patients over 75 years with chronic kidney disease stage 5. Nephrol Dial Transplant 2007;22(7):
3 Halstenberg WK, Goormastic M, Paganini EP. Validity of four models for predicting outcome in critically ill acute renal failure patients. Clin Nephrol 1997;47(2):81-6.

37. Informed Consent for Elderly CKD Patients SHOULD INCLUDE:
Dialysis may not confer a survival advantage
Patients with this level of illness more likely to die than live long enough to progress to ESRD 1
The majority of patients in their condition die or succumb to significant functional decline during their first year on dialysis 2
Life on dialysis entails burdens likely to detract from their quality of life
Surgery and complications for vascular access or peritoneal access placement
Adverse physical symptoms on dialysis --dizziness, fatigue, and cramping, and a feeling of “unwellness” after dialysis.
Travel time and expense to and from dialysis
Long hours spent on dialysis  reduction in the time available for physical activity.
Unnecessary “medicalization of death”
Invasive and costly tests, procedures, and hospitalizations.
1 J Am Soc Nephrol 2007;18(10):
2J Am Soc Nephrol 2003;14(4):

38. Think Mr. Higgins 50.6.1.4 – Coverage Under the Hospice Benefit
Alvin H. Moss, MD
April 8, 2009
– Coverage Under the Hospice Benefit
(Rev. 1, )
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.
Think Mr. Higgins
End-of-Life Care

39. Underutilization of Hospice in ESRD
2009 Dialysis Deaths
Patients
Number (%)
Number (%) Using Hospice
Withdrew from Dialysis
20,854 (26)
13,502 (65)
Continued Dialysis
59,032 (74)
3,410 (6)
TOTAL
79,886 (100)
16,912 (21)
As this chart shows, 65% of patients who withdrew from dialysis in 2009 used hospice, compared to just 6% of patients who continued dialysis through death and used hospice. Overall, only 21% of all dialysis patients who died in 2009 used hospice.
Standard Information Management System [Network database]. Midlothian, VA:
Mid-Atlantic Renal Coalition; 2010.

40. Pain and ESRD A common and severe symptom Impairs quality of life
Undertreated in 75% of ESRD patients*
Lack of knowledge in nephrology community
*Davison SN. Am J Kidney Dis, 42: , 2003
*Barakzoy & Moss. J Am Soc Nephrol. 2006;17:
*Bailie GR, et al. Kidney Int 2004:65:

42. Alvin H. Moss, MD
April 8, 2009
8.1
7.4
P < .001
P=0.110
1.5
1.8
Barakzoy & Moss. Efficacy of the WHO Analgesic Ladder
to Treat Pain in ESRD. J Am Soc Nephrol 2006;17:
End-of-Life Care

43. Tool kit in guideline with a number of validated instruments
30 symptoms
Weisbord SD, et al. J Pain Symptom Manage 2004;27:

44. Contact the Kidney End of Life Coalition at kidneyeol@nw5.esrd.net
For additional information, including
resources for patients and families,
visit
Advance care planning information
Do not resuscitate orders in the dialysis unit
Access to hospice
Clinician educational resources
Contact the Kidney End of Life Coalition at

45. Conclusions
There is a new 2nd edition of the RPA guideline on initiation and withdrawal of dialysis
The guideline contains recommendations for adult and pediatric dialysis decision-making
There is accumulating evidence to assist in prognosis prediction for ESRD patients
There is a recognition that patients’ goals for care may differ and that palliative care and hospice may assist clinicians treating some AKI, CKD and ESRD patients
Pain and symptoms can be adequately treated in dialysis patients but many nephrologists lack knowledge