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1 Delivering Palliative Care Delivering Palliative Care to End-Stage Renal Disease to End-Stage Renal Disease Patients Patients Alvin H. Moss, MD Center for Health Ethics and Law Section of Nephrology West Virginia University

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Delivering Palliative CareDelivering Palliative Care to End-Stage Renal Disease Patientsto End-Stage Renal Disease Patients

Alvin H. Moss, MDCenter for Health Ethics and Law

Section of NephrologyWest Virginia University

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ObjectivesObjectives

Describe the special relevance of end-of-life care for chronic kidney failure patients ;

Explain the barriers to making end-of-life care more available to chronic kidney disease patients; and

Discuss the recommendations of the Robert Wood Johnson Foundation Promoting Excellence ESRD Peer Work for improving end-of-life care for dialysis patients.

At the completion of this call, participants should be able to:

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ESRD End-of-Life DemographicsESRD End-of-Life Demographics

Rising median age of dialysis population48% > 65 yrs old

Over 72,000 dialysis patients die per year ~20% die after decision to withdraw High percentage with comorbidities High in-hospital death (61% in one study) Unknown but low % die with hospice

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ESRD Peer Work GroupESRD Peer Work Groupof Robert Wood Johnson Foundationof Robert Wood Johnson Foundation

“Most patients with ESRD, especially those who are not candidates for renal transplantation, have a significantly shortened life expectancy.”

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Expected Remaining Years of Life Expected Remaining Years of Life For 1996 Dialysis PopulationsFor 1996 Dialysis Populations

Age Black Male

Black Female

White Male

White Female

20-24 16.8 15.9 14 13

30-34 12.7 12.5 9.4 9.3

40-44 10 9.8 6.9 7.1

50-54 7.3 7.1 5.2 5.2

60-64 5.2 5.3 3.7 3.9

70-74 3.5 3.7 2.7 2.9

85+ 2.1 2 1.7 1.7

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ESRD Patient Probability of SurvivalESRD Patient Probability of Survival

Patient Population Survival (%)

1-yr for all incident patients, unadjusted 78

1-yr for incident patients >65 yrs, unadjust 66

2-yr for all incident patients, unadjusted 63

2-yr for all incident patients >65 yrs, unadj 48

5-yr for all incident patients, unadjusted 33

5-yr for incident patients >65 yrs, unadj 18

10-yr for all incident patients, unadjusted 9

10-yr for incident patients >65 yrs, unadj 3

USRDS, 2002 Annual Data Report

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USRDS 1995 -- Life Expectancy Among USRDS 1995 -- Life Expectancy Among Selected Chronic DiseasesSelected Chronic Diseases

29.9

9.66.9

2.7

21.6

9.8

5.32.6

0

5

10

15

20

25

30

est remaining yrs

45-54 55-64

patient age

US residentscolon cancerESRDlung cancer

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Expected remaining lifetimes in patients with Expected remaining lifetimes in patients with increasing morbidity, by age increasing morbidity, by age

figure 9.25, chronic kidney disease & diabetes, figure 9.25, chronic kidney disease & diabetes, prevalent dialysis patients, 2000prevalent dialysis patients, 2000

65-74 75-84 85+Exp.

rem

aini

ng li

fetim

e (y

rs)

0

5

10

15

20

DialysisGeneral Medicare: CKD, DMGeneral Medicare: CKD, NDMGeneral Medicare: No CKD, DMGeneral Medicare: No CKD, NDM

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Frequency of Death in Dialysis UnitsFrequency of Death in Dialysis Units

Average of 17 deaths per dialysis unit/yr 78% of units withdrew at least 1 patient (1990) Mean # withdrawn: 3 (0-20) Most nephrologists withdraw at least one

patient/yr Mean # withdrawn/nephrologist/yr: 3 (0-10)

(1995)

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Reasons for WithdrawalReasons for Withdrawal

Unacceptable quality of life (failure to thrive)Acute complicationDementiaStrokeCancerOther

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Symptoms during Last 24 HoursSymptoms during Last 24 HoursN=79N=79

Symptom % present

Pain 42

Agitation 30

Myoclonus/twitching 28

Dyspnea/agonal breathing 25

Fever 20

Diarrhea 14

Dysphagia 14

Nausea 13

Cohen et al. AJKD, 2000;36:140-144

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BarriersBarriers

Lack of education, especially of nephrologists Unwillingness of dialysis corporations to respect

dialysis patients’ preference for DNR order Patient/family denial of permanent nature of ESRD Lack of patient awareness of life-limiting nature of

ESRD resulting in many not wanting to discuss end-of-life issues

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RPA/ASN Statement on Quality Care at RPA/ASN Statement on Quality Care at the End of Lifethe End of Life

6. Nephrologists should explicitly include in their advance care planning…information about the outcomes of CPR for patients with ESRD and a discussion of patients’ preferences regarding CPR if cardiac arrest were to occur while patients are undergoing …dialysis… The RPA/ASN encourages dialysis facilities to develop policies and procedures for respecting the wishes of dialysis patients with regard to CPR in … the dialysis unit.

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Robert Wood Johnson FoundationESRD Peer Workgroup

Recommendations to the Field

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MethodologyMethodology of the Education Subgroup of the Education Subgroup

A review of the literature, including identification of articles, book chapters, and the extensive evidenced-based literature search by the RPA/ASN committee that drafted “Shared Decision-Making in the Appropriate Initiation of and Withdrawal from Dialysis;”

Consensus among the group based on expert opinion; Informal surveys of nephrology colleagues and of the

nephrology training programs; and

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FindingsFindings of the Education Subgroup of the Education Subgroup

A lack of ESRD specific books or chapters on palliative care

A gap in the curriculum for nephrology training programs

A culture of denial in dialysis units among nephrologists, staff, patients and families

The need for a modification of the EPEC program for nephrologists

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Survey Results Survey Results Second Year Nephrology FellowsSecond Year Nephrology Fellows

Survey conducted April 2002

173 fellows participated

63% response rate

Assessment of Medical Educationin End-of-Life Care

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DemographicsDemographicsNephrology fellows compared to other specialtiesNephrology fellows compared to other specialties

Geriatrics Critical Care Nephrology

N 188 96 173

Response Rate 64% 87% of audience, 9% nationally

63%

Male 45% 74% 67%

Average Age NA

White 46% 64% 46%

Christian 38% 46% 38%

FMG 53% NA 43%

Social/ Emotional 26% 66% 73%

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Exposure to Palliative CareExposure to Palliative Care

Geriatrics Critical Care

Nephrology

Completed a Rotation Focused on Palliative Care

71% 2% 1%

Had Contact with Palliative Care Specialist

80% 46% 45%

Quality of teaching with respect to end-of-life care rated ‘very good’ or ‘excellent’

53% 34% 15%

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Teaching and Preparedness of Nephrology FellowsTeaching and Preparedness of Nephrology Fellowsto manage Patients on dialysis, with RTA, and at the end-of-lifeto manage Patients on dialysis, with RTA, and at the end-of-life

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

0-3 4-7 8-10

Teaching

Preparedness

End-of-Life Care

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

0-3 4-7 8-10

Teaching

Preparedness

Distal RTA

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

0-3 4-7 8-10

Teaching

Preparedness

Hemodialysis

0 = no teaching or completely unprepared, 10 = a lot of teaching or completely prepared

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Figure 2Figure 2

0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%

Treat pain

Tell patient he/she is dying

Assess and manage depression at eol

Help with reconciliation and goodbyes

Respond to request to stop dialysis

Determine when to refer to hospice

% fellows who received explicit teaching on topic

During your fellowship, were you explicitly taught to:

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Comparison of Experience of Nephrology FellowsComparison of Experience of Nephrology FellowsRenal Biopsies Performed with Observation versus Family MeetingsRenal Biopsies Performed with Observation versus Family Meetings

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

% f

ello

ws

never 1-2 3-6 7-10 >10

# family meetings performed

Family Meetings Conducted

Family Meetings ConductedWhile Observed

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

% f

ello

ws

never 1-2 3-6 7-10 >10

# biopsies performed

Biopsies Performed

Biopsies Performed WhileObserved

Renal Biopsies PerformedFamily Meetings Conducted

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Amount of Training to Manage a Dying Patient

0%

10%

20%

30%

40%

50%

60%

0-3 4-7 8-10

0=No Training 10=A Lot of Training

GeriatricsPulmonary/ Critical CareNephrology

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Renal EPECRenal EPEC

Why Talk about End-of-Life Care in ESRD Communicating Bad News Advance Care Planning Pain Management Common Physical Symptoms Incorporating End-of-Life Care into Your

Dialysis Unit

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ESRD Peer WorkgroupESRD Peer Workgroup

Alvin H. Moss, MD, ChairBarbara Campbell, MSW Lewis M. Cohen, MD William R. Coleman, Esq. Helen Danko, RN, CNNRichard Dart, MD Lesley Dinwiddie, MSN, RN Michael Germain, MD Cathy Greenquist, RN Jean Holley, MDPaul Kimmel, MDKarren King, MSW

Jenny Kitsen Lori Lambert, MS, RD, CDE John E. Leggat, Jr., MD Sharon McCarthy, RN, FNP John Newmann, PhD, MPH Marilyn Pattison, MD Erica Perry, MSW Susan Pfettscher, DNSc, RNDavid Poppel, MD, M. Abed Sekkarie, MD Dale Singer, MHA Richard Swartz, MD

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Recommendations from Recommendations from the ESRD Peer Workgroupthe ESRD Peer Workgroup

Centers for Medicare and Medicaid Services Governmental policy makers should update

"Conditions of Participation" for dialysis units to include requirements for advance care planning and the provision of palliative care.

CMS should collect data on hospice utilization on the 2746 form.

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Recommendations from Recommendations from the ESRD Peer Workgroupthe ESRD Peer Workgroup

Centers for Medicare and Medicaid ServicesAllow application of Medicare hospice benefit

to ESRD patients certified to be terminally ill but who choose to continue dialysis

Improve coordination and linkage of dialysis and hospice care for ESRD patients

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Recommendations from Recommendations from the ESRD Peer Workgroupthe ESRD Peer Workgroup

Dialysis Units Dialysis units should educate patients/families about

end-of-life care. Dialysis units should institute palliative care programs

that include pain and symptom management, advance care planning, and psychosocial and spiritual support for patients and families.

Dialysis units should adopt policies regarding CPR in the dialysis unit that respect patients’ rights of self-determination, including the right to refuse CPR.

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Recommendations from Recommendations from the ESRD Peer Workgroupthe ESRD Peer Workgroup

Dialysis Units

Dialysis units should support the development of peer mentoring in their facilities.

Dialysis units should implement bereavement programs.

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Recommendations from Recommendations from the ESRD Peer Workgroupthe ESRD Peer Workgroup

Nephrology health care professionals

Nephrologists and other members of the renal care team should refer dying ESRD patients to hospice and/or adopt a palliative care approach to their management.

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Robert Wood Johnson FoundationRobert Wood Johnson FoundationESRD Peer Workgroup ReportESRD Peer Workgroup Report

www.promotingexcellence.org/esrd/

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ConclusionsConclusions

Because of shortened life expectancy, end-of-life care is particularly relevant for ESRD pts.

The knowledge and skills to provide palliative care for ESRD patients are available but not in widespread use.

The recommendations in the RWJF ESRD Workgroup report provide a “road map” for improving end-of-life care for ESRD patients.

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Take-Home MessageTake-Home Message

Because of the nature of ESRD, end-of-life care needs to be

part of the continuum of

qualityquality patient care patient care for ESRD patients.