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Nephrology Care at the End of Life: New Guideline on Withholding and

Withdrawing Dialysis

Alvin H. Moss, MD, FACP, FAAHPMSection of Nephrology

West Virginia University School of Medicine

amoss@hsc.wvu.edu

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

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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

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Differing Goals for CareMr. 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 2.0. 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.

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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?

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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.

Evidence-based 10 adult recommendations9 pediatric recommendationsRationales and strategies forimplementation for each Tool kit of validated instruments

Available from RPA online storewww.renalmd.org

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:1.Patients who choose aggressive therapy with dialysis w/o limitations on other treatments-rehabilitative RRT2.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 comfort3.Patients who decline dialysis and prefer that the primary goal of care be their comfort-active medical management

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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.

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Palliative Care

End-of-Life/ Hospice Care

Relationship between Palliative Care and EOLC

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 http://touchcalc.com/calculators/sq

• 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

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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

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10 GUIDELINE STATEMENTS: 6 TOPICS

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.

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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.

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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.”

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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.

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Audience Response Slide

Should you…1.Continue dialysis as the daughter requests2.Stop dialysis because the patient is comatose3.Request an ethics consultation4.Seek a court order to stop dialysis

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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?

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Recommendation No. 5 If appropriate,appropriate, forgo (withhold initiation or withdraw ongoing) dialysis for patients with AKI, CKD, or ESRD in certain, well-defined situations:

1J Am Soc Nephrol 1994;4(11):1879-83. 2N Engl J Med 1990;322(14):1012-5.

APPROPRIATE TO SAY “NO”

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.

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Systematic Approach to Resolving Conflict between Patient/Family and Kidney Care Team

Possible Rem aining Options

Ÿ Request local ESRD network toassist with arrangem ents fordialysis.

Ÿ Involve a m ediator or anextram ural ethics com m ittee.

Ÿ Inform the patient/legal agentthat dialysis will be withheld orstopped unless a courtinjunction to the contrary isobtained.

Ÿ Provide treatm ent contrary toprovider's professional values totruly respect the diversity ofvalues in our society.

Involve consultants(m edical, ethical, religious,ethnic, or adm inistrative)

Do the patient and provider nowagree on the course of care?

Shared Decision-M aking:

Patient: Personal history,values, preferences, andgoals.

Provider: D iagnostic,prognostic, and m anagem entexpertise, values, and goals.

No

Involve ethics com m ittee

Do the patient and provider nowagree on the course of care?

Attem pt to transfer carew ithin institution

Is this a possible solutionto the problem?

No

No

No

Attem pt to transfer to another institution

Is this a possible solutionto the problem?

No

Yes

Do the patient and provider agreeon the course of care?

Yes

Yes

Pursue careagreed to by the

new attendingphysician.

Pursue agreed-upon care.

Yes

Yes

RPA guideline for Shared Decision-Making , 2nd ed. 2010 22

Possible Rem aining Options

Ÿ Request local ESRD network toassist with arrangem ents fordialysis.

Ÿ Involve a m ediator or anextram ural ethics com m ittee.

Ÿ Inform the patient/legal agentthat dialysis will be withheld orstopped unless a courtinjunction to the contrary isobtained.

Ÿ Provide treatm ent contrary toprovider's professional values totruly respect the diversity ofvalues in our society.

Involve consultants(m edical, ethical, religious,ethnic, or adm inistrative)

Do the patient and provider nowagree on the course of care?

Shared Decision-M aking:

Patient: Personal history,values, preferences, andgoals.

Provider: D iagnostic,prognostic, and m anagem entexpertise, values, and goals.

No

Involve ethics com m ittee

Do the patient and provider nowagree on the course of care?

Attem pt to transfer carew ithin institution

Is this a possible solutionto the problem?

No

No

No

Attem pt to transfer to another institution

Is this a possible solutionto the problem?

No

Yes

Do the patient and provider agreeon the course of care?

Yes

Yes

Pursue careagreed to by the

new attendingphysician.

Pursue agreed-upon care.

Yes

Yes

Systematic Approach to Resolving Conflict between Patient/Family and Kidney Care Team

RPA guideline for Shared Decision-Making , 2nd ed. 2010 23

Audience Response Slide

What should the nephrologist do now?1.Just keep dialyzing the patient2.Attempt to transfer care within the hospital3.Attempt to transfer care to another hospital4.Stop dialysis without further discussion

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Conflict Resolution

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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 personin the patient’s condition, and 2) there was no other nephrologist who could be found who was willing to dialyze the patient.

Predictors of Poor Prognosisfor 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. 2010.

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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;3:1379-1384

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Cohen LM, Ruthazer R, Moss AH, Germain MJ. Predicting six-month mortality for patientswho are on maintenance hemodialysis. Clin J Am Soc Nephrol. 2010 Jan;5(1):72-9.

MortalityPrediction

forMr. Higgins

http://touchcalc.com/calculators/sq

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Risk Factors PointsBMI

≥ 18.5

< 18.5 2

Diabetes

Absence

Presence 1

CHF III/IV

Absence

Presence 2

PVD III/IV

Absence

Presence 2

Dysrhythmia

Absence

Presence 1

French Renal Epidemiology and Information Network 6 Month Mortality Score Prediction

Risk Factors Points

Active malignancy

Absence

Presence 1

Severe behavioral disorder

Absence

Presence 2

Totally dependent for transfers

Absence

Presence 3

Initial context

Planned

Unplanned 2

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): 1553-61.

French REIN Six-Month Mortality Rates by Risk Score in the Derivation and

Validation SamplesRisk Score Derivation Sample % Validation Sample %

0 Point 8 8

1 Point 8 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 19

30Couchoud 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): 1553-61.

Mr. Higgins’ score was 6 points!

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC545968/

HighMortalityScore6 or 727%1-yrMortality

Reason to Consider Age > 75

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“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;18:2758-2765.

USRDS 2009 ADR

Incident counts & adjusted rates, by age Figure 2.5 (Volume 2)

Incident ESRD patients; rates adjusted for gender & race.

Comparative Survival of CKD Patients over 75 Years With and Without Dialysis

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):1955-62 34

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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

AgeKPSDiabetes

Mean 61.5 < 15 CG

Joly 2003 144 107 37 RRT MM

28.9 vs. 8.9 months P<.001

KPSSocial IsolationLate Referral

DiabetesLow BMI

Mean 83

Cut off ≥ 80

<10 CG

Carson 2009 202 173 29 RRT MM37.8 vs. 13.9 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.

AgeComorbidityIschemic

Heart Disease

>75 yrs < 15

Stage 5

Wong 2007 73 -- 73 MM 23.4 months

1-yr survival 65%

Comorbidity Median 79 yrs

Median 12

Range (4-31)Ellam 2009 69 -- 69 MM 21 months Serum albumin

≤3.5 g/dL

Late referral

Median 80 <15 MDRD

Stage 5

*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 .

Recommendation No. 3: Informing patientsAll patients with AKI, stage 5 CKD or ESRD should receive patient-patient-specific estimates of prognosisspecific estimates of prognosis.

2 or more Poor prognosis1,2,3

1. > 75 years

2. High comorbidity scores (“No” to “Surprise” Question)

A. (e.g., modified Charlson Comorbidity score > 8)

3. Marked functional impairmentA. (e.g., Karnofsky performance status score < 40)

4. Severe chronic malnutrition A. (e.g., serum albumin level < 2.5 g/dL using the

bromcresol green method).

Patients in this population should be informed:

1.Dialysis may not confer a survival advantage or improve functional status over medical management without dialysis

2.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):1597-8.

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):1955-62.

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.

Informed Consent for Elderly CKD Patients SHOULD INCLUDE:

1 J Am Soc Nephrol 2007;18(10):2758-2765. 2J Am Soc Nephrol 2003;14(4):1012-21.

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50.6.1.4 – Coverage Under the Hospice Benefit(Rev. 1, 10-01-03)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

2009 Dialysis Deaths

Underutilization of Hospice in ESRD

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)

Standard Information Management System [Network database]. Midlothian, VA: Mid-Atlantic Renal Coalition; 2010.

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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, 42:1239-1247, 2003*Barakzoy & Moss. J Am Soc Nephrol. 2006;17:3198-3203 *Bailie GR, et al. Kidney Int 2004:65:2419-2425

www.kidneyeol.org/painbrochure9.09.pdf

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2

3

4

5

6

7

8

9

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Neuropathic Pain Nociceptive PainType of Pain

Comparison of Initial and Post-Treatment Pain Scores

Initial Pain Score

8.1

1.5

7.4

1.8

P=0.110

P < .001

Barakzoy & Moss. Efficacy of the WHO Analgesic Ladder to Treat Pain in ESRD. J Am Soc Nephrol 2006;17:3198-3203.

Tool kitin guideline

with a number of validated

instruments

• 30 symptoms

Weisbord SD, et al. J Pain Symptom Manage 2004;27:226-240.

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Contact the Kidney End of Life Coalition atkidneyeol@nw5.esrd.net

For additional information, including resources for patients and families,

visit

Advance care planning informationDo not resuscitate orders in the dialysis unitAccess to hospiceClinician educational resources

www.kidneyeol.org

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 knowledge45