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Why the Nephrology Community Why the Nephrology Community Should Should CareCare about End-of-Life Care about End-of-Life Care

Alvin H. Moss, MDCenter for Health Ethics and Law

Section of NephrologyWest Virginia University

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A Role for Palliative CareA Role for Palliative Care

The patient is a 56 year old female with ESRD from Type I DM who was admitted from the NH with altered mental status occurring over the preceding 24 hours. The patient has been on dialysis for three years and is transported by ambulance for her treatments. Her other medical problems include retinopathy with limited vision, CVA with left hemiplegia, and peripheral vascular disease with bilateral LE amputations.

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A Role for Palliative CareA Role for Palliative Care

She is incontinent of urine and has severe difficulties with constipation. She is unable to walk or transfer herself from chair to stretcher. The patient is noncompliant with diet and meds. Her serum albumin is 2.2. She is listed as a full code. The patient sometimes cries during hemodialysis treatments, especially when asked questions. She admits she is depressed. Her memory is relatively good but she has problems with expressive aphasia, and her behavior during dialysis treatments is sometimes inappropriate.

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A Role for Palliative CareA Role for Palliative Care

The patient had been in the hospital one week earlier for a cholecystectomy. On this admission, an MRI of the brain showed chronic microvascular ischemic changes with volume loss and an acute infarct in the left parietal-occipital region. She also developed fever with leukocytosis, and an abdominal CT scan revealed fluid in the gallbladder fossa and a possible fistulous tract in the RLQ; surgery thought she was not a surgical candidate. The patient now lacks decision-making capacity, but she has completed a living will and medical power of attorney. She is grimacing in pain. What should be done?

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ObjectivesObjectives

Explain why end-of-life care is especially appropriate for dialysis patients;

Define palliative care and its role for dialysis patients; Discuss the RPA/ASN Statement on Quality Care at

the End of Life; and Describe the recommendations of the RWJF ESRD

Peer Workgroup on End-of-Life Care.

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

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ESRD End-of-Life DemographicsESRD End-of-Life Demographics Rising median age of dialysis population

48% > 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 1330-34 12.7 12.5 9.4 9.340-44 10 9.8 6.9 7.150-54 7.3 7.1 5.2 5.260-64 5.2 5.3 3.7 3.970-74 3.5 3.7 2.7 2.985+ 2.1 2 1.7 1.7

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Expected remaining lifetimes (years), Expected remaining lifetimes (years), by age, gender, & raceby age, gender, & race

Table 8.1, period prevalent patients, 1999Table 8.1, period prevalent patients, 1999Dialysis Transplant

White Black Nat. American Asian White Black Nat. American AsianAge M F M F M F M F M F M F M F M F0 -14 17.9 15.9 19.3 16.8 21.6 22.1 29.3 27.0 47.3 46.9 40.6 40.3 50.4 50.8 51.8 54.515-19 16.3 14.8 19.0 16.6 18.9 19.1 24.3 23.3 36.3 36.2 33.1 33.0 38.6 39.0 39.5 42.020-24 13.6 12.3 16.4 14.3 16.3 16.2 20.8 20.1 32.2 32.3 29.8 29.8 34.4 34.8 35.2 37.625-29 11.3 10.2 14.2 12.5 13.8 13.5 17.9 17.5 28.3 28.4 26.5 26.5 30.2 30.6 31.0 33.330-34 9.2 8.6 12.1 10.7 11.1 11.4 14.9 14.9 24.3 24.4 23.0 23.2 26.0 26.3 26.7 28.935-39 7.9 7.5 10.3 9.4 9.4 9.8 12.6 12.6 20.6 20.9 19.6 19.9 21.9 22.4 22.6 24.640-44 6.9 6.6 9.1 8.3 8.1 8.3 10.5 10.9 17.1 17.6 16.4 16.8 18.1 18.5 18.6 20.545-49 5.9 5.7 7.7 7.2 6.8 7.2 8.6 9.0 13.9 14.4 13.3 13.7 14.4 14.9 14.9 16.450-54 5.0 4.9 6.6 6.2 5.8 6.2 7.1 7.3 10.8 11.3 10.2 10.6 10.8 11.2 11.3 12.555-59 4.3 4.3 5.6 5.4 4.9 5.3 5.9 6.1 7.7 8.0 7.4 7.8 7.7 8.1 7.9 8.660-64 3.6 3.6 4.6 4.7 4.1 4.6 4.9 5.1 4.3 4.4 4.2 4.3 4.3 4.4 4.3 4.565-69 3.1 3.1 3.9 3.9 3.4 3.9 4.1 4.370-74 2.7 2.7 3.3 3.3 2.9 3.4 3.4 3.775-79 2.3 2.3 2.8 2.8 2.4 2.8 2.8 3.080-84 1.9 2.0 2.3 2.3 1.9 2.3 2.3 2.585+ 1.6 1.6 1.8 1.9 1.5 1.8 1.8 2.1

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ESRD Patient Probability of SurvivalESRD Patient Probability of SurvivalPatient Population Survival (%)

1-yr for all incident patients, unadjusted 781-yr for incident patients >65 yrs, unadjust 662-yr for all incident patients, unadjusted 632-yr for all incident patients >65 yrs, unadj 485-yr for all incident patients, unadjusted 335-yr for incident patients >65 yrs, unadj 1810-yr for all incident patients, unadjusted 910-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 55-64patient 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.

remain

ing lif

etime

(yrs)

0

5

10

15

20DialysisGeneral 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 WithdrawalUnacceptable quality of life (failure to thrive)Acute complicationDementiaStrokeCancerOther

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

Symptom % presentPain 42Agitation 30Myoclonus/twitching 28Dyspnea/agonal breathing 25Fever 20Diarrhea 14Dysphagia 14Nausea 13

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

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Aspects of Palliative CareAspects of Palliative Care

Pain and symptom management Advance care planning

– DNR– Advance Directives

Psychosocial and spiritual support

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DefinitionDefinition

Palliative care is comprehensive, interdisciplinary care of patients and families facing a chronic or terminal illness focusing primarily on comfort and support.

Billings JA. Palliative Care. Recent Advances. BMJ2000:321:555-558.

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HospiceHospicePalliative CarePalliative Care

Curative / Remissive TherapyCurative / Remissive Therapy

Start Dialysis Death

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Would you be surprised if the Would you be surprised if the patient died in the next year?patient died in the next year?

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Advances in End-of-Life CareAdvances in End-of-Life Care Better management of chronic cancer pain Improved management of other symptoms Increasing use of advance care planning Improved understanding of the role of artificial

hydration and nutrition for dying patients General consensus on the acceptability of

withholding and withdrawing life support

Billings JA. BMJ 2000;321:555-558

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End-of-Life ChoiceIf you had to choose between being kept alive as long as possible even if you were experiencing pain & suffering or living a shorter time to avoid pain… and being put on machines, which would you pick?

11%

76%

13%

0%

20%

40%

60%

80%

Being kept aliveLive shorter/ avoid machinesDk/ Na

* Follow-up Phase Only

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Patient’s ConcernsPatient’s ConcernsRegarding End-of-Life CareRegarding End-of-Life Care

Receiving adequate pain and symptom control Avoiding inappropriate prolongation of dying Achieving a sense of control Relieving burden on loved ones Strengthening relationships with loved ones

Singer PA, et al. Quality end-of-life care: patients’ perspectives.JAMA 1999; 281:163-168.

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Top 5 Attributes of a Good DeathTop 5 Attributes of a Good Death

Freedom from pain At peace with God Presence of family Mental awareness Treatment choices followed

Steinhauser, et al. Factors considered important at the end of life by patients, family, physicians, and other health care providers. JAMA 2000:284:2476-2482.

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Major Components of a Good Death Major Components of a Good Death

Pain and symptom managementClear decision makingPreparation for deathLife CompletionContributing to othersAffirmation of the whole person

Steinhauser. Ann Intern Med 2000;132:825-832.

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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

RecommendationsRecommendations

1. All members of the renal health care team including nephrologists, nephrology nurses, nephrology social workers, and renal dietitians should obtain education and skills in the principles of palliative care to ensure that ESRD patients and families receive multidimensional, compassionate, and competent care at the end of life.

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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

2. In responding to an ESRD patient/surrogate decision to forgo dialysis, the nephrologist is obligated to determine, if possible, why the patient/surrogate has decided to forgo dialysis … Once the nephrologist is satisfied that the patient’s decision to forgo dialysis is informed and uncoerced, the nephrologist should respect the wishes of the patient/surrogate.

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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

3. After a decision is made to forgo dialysis, the renal team should refer the patient to a hospice or adopt a palliative care approach to patient care. In either case, the nephrologist and other members of the renal team should remain active in the patient’s care to maintain continuity of relationships and treatment.

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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

4. Nephrologists and other members of the renal team should obtain education and skills in advance care planning so that they are comfortable addressing end-of-life issues with their patients.

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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

5. Dialysis facilities should develop protocols, policies, and/or programs to ensure that advance care planning is conducted with their patients.

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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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The workgroup created an education subgroup because they believed that lack of knowledge was a key barrier to change in the dialysis community. Knowledge in palliative care was felt to be very limited among nephrologists, trainees, dialysis staff, and patients and their families. Beyond a lack of specific knowledge, it was felt there is a culture of death denial in dialysis units that needed to be addressed.

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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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MethodologyMethodology of the Education Subgroup of the Education Subgroup

Identification of the intended audience for end-of-life care educational interventions: Nephrologists, fellows, nurses, social workers, dietitians, and othersGovernment agencies responsible for ESRD including CMS;Corporations owning multiple dialysis units;Individual dialysis units; andPatients and families

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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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Renal EPECRenal EPEC Gaps in End-of-Life Care 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

NIH, NIDDK

In their annual reports, USRDS should provide more data on deaths, including when dialysis is withdrawn and hospice utilization.

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Recommendations from Recommendations from the ESRD Peer Workgroupthe ESRD Peer Workgroup

ESRD Networks ESRD Networks should, as part of their

educational outreach efforts, incorporate end-of-life care/palliative care concepts into their educational programs.

ESRD Networks should conduct educational sessions for dialysis providers on the medical, ethical, and legal issues surrounding CPR in the dialysis unit.

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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 need to incorporate effective interventions into practice in individual dialysis units to enhance ESRD patient QOL.

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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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Components of a Components of a Renal Palliative Care ProgramRenal Palliative Care Program A Palliative Care Focus

-Educational activities (in-services)-QI activities (M & M conferences)-“Would you be surprised…?”

Pain & Sx Assessment & Management Protocols Systematized Advance Care Planning Psychosocial and Spiritual Support (peer counselors) Terminal Care Protocol (includes hospice) Bereavement Program (includes memorial service)

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ConclusionsConclusions

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

Palliative care offers the treatment most pts and families want but is a new way of thinking.

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

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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.