palliative care for the esrd

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Palliative Care Palliative Care for the ESRD Patientfor the ESRD Patient

Alvin H. Moss, MDCenter for Health Ethics and Law

Section of NephrologyWest Virginia University

Palliative Care

End-of-Life/ Hospice Care

Relationship between Palliative Care and EOLC

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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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Palliative Care ApproachPalliative Care Approach

Pain and symptom managementPain and symptom management Communication-Advance care Communication-Advance care

planningplanning• DNRDNR• Advance DirectivesAdvance Directives

Psychosocial and spiritual supportPsychosocial and spiritual support Hospice referralHospice referral

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HospiceHospicePalliative CarePalliative Care

Curative / Remissive TherapyCurative / Remissive Therapy

Start Dialysis Death

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Patient’s ConcernsPatient’s ConcernsRegarding End-of-Life Regarding End-of-Life CareCare Receiving adequate pain and symptom Receiving adequate pain and symptom

controlcontrol Avoiding inappropriate prolongation of Avoiding inappropriate prolongation of

dyingdying Achieving a sense of controlAchieving a sense of control Relieving burden on loved onesRelieving burden on loved ones Strengthening relationships with loved Strengthening relationships with loved

onesonesSinger PA, et al. JAMA 1999; 281:163-168.

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Relevance to ESRDRelevance to ESRD Shortened life expectancyShortened life expectancy High symptom burdenHigh symptom burden Aging populationAging population

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ESRD Patient Probability of ESRD Patient Probability of SurvivalSurvival

Patient PopulationPatient Population Survival Survival (%)(%)

1-yr for all incident patients, unadjusted1-yr for all incident patients, unadjusted 79791-yr for incident patients >65 yrs, 1-yr for incident patients >65 yrs, unadjustedunadjusted

6565

2-yr for all incident patients, unadjusted2-yr for all incident patients, unadjusted 65652-yr for all incident patients >65 yrs, 2-yr for all incident patients >65 yrs, unadjunadj

4848


1818


33USRDS, 2004 Annual Data Report

99

0.0%

10.0%

20.0%

30.0%

40.0%

50.0%

60.0%

70.0%

80.0%

90.0%

100.0%

Surv

ival

Rat

e (%

)

2 Year 5 Year 10 Year

Survival Rates for Cancer and ESRD Patients

CancerESRD

Data from USRDS and NCI

1010

High Symptom BurdenHigh Symptom Burden HD patients median # of symptoms=9HD patients median # of symptoms=9 Pain in over 50%Pain in over 50% Associated with impaired HRQoLAssociated with impaired HRQoL Associated with depressionAssociated with depression

Weisbord, et al. JASN 2005:16:2487-2494

11110%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

Perc

ent

Dry Skin Tired or Lack ofEnergy

Itching Bone or JointPain

Muscle Cramps

Prevalence of Individual Symptoms

Weisbord, JASN 2005;16:2487-2494

1212

Association Between Symptoms Association Between Symptoms and Quality of Life Measuresand Quality of Life Measures

138119

94.5

37.629 21.7

7.56.5 5.3

24.623.418.3

020406080

100120140160

MQOL TotalScore

MQOLPhysicalSubscale

QOL SingleItem Index

SWLS

no symptoms 1 symptom 2+ symptoms

Tot

al S

c ore

Tot

al S

c ore

Note: All results statistically significant, p values <.01Note: All results statistically significant, p values <.01

Kimmel, et al.AJKD 2003

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Aging PopulationAging Population Rising median age of dialysis populationRising median age of dialysis population

>50% over 65 yrs old>50% over 65 yrs old Over 79,000 dialysis patients die per yearOver 79,000 dialysis patients die per year ~20% die after decision to withdraw~20% die after decision to withdraw High percentage with comorbiditiesHigh percentage with comorbidities High in-hospital death-63%*High in-hospital death-63%*

* United States Renal Data System 2001-2002 cohort

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

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Prognostic Factor All (N=166)

"Yes" (N=130)

"No" (N=36) P value

McGill QOL Question 6.7±2.1 6.8±2.1 6.1±2.0 0.052

CCI Score 6.0±2.3 5.7±2.2 7.3±1.9 <0.001

Pain VAS Score 2.5±3.2 2.2±3.0 3.8±3.6 0.007

Karnofsky Performance Status 78.7±17.6 84.0±13.7 58.8±16.3 <0.001

Age (yrs) 65.9±15.8 63.4±16.2 75.1±9.8 <0.001

Kt/V 1.5±0.3 1.45±0.28 1.48±0.26 0.540

Hb (g/dL) 12.0±1.1 12.1±1.2 11.9±0.87 0.483

Serum Albumin 3.8±0.3 3.9±0.27 3.7±0.42 0.004

Male/Female 55/45 58/42 44/56 0.134

White/Non-white 90/10 76/94 24/6 0.072

Performance of “Surprise” Question in ESRD*

*Values are mean ± SD or %

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IncorporatingIncorporating Palliative Care Palliative Care into Your Dialysis Unitinto Your Dialysis Unit

Surprise question on rounds Educational in-services on palliative care topics Advance care planning Pain & symptom assessment and treatment protocols Communication of prognosis and changes in condition Referral to hospice when terminally ill QI with review of quality of death Memorial service

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Dialysis Withdrawal and Hospice Status of Deceased Patients USRDS 2001-2002 Cohort Dialysis Withdrawal and Hospice Status

Deceased Patients(N=115,239)

Percent Mean Age in Years

Hospice Yes 15,565 13.5 73.4 ± 11.0 *Hospice No 99,674 86.5 68.6 ± 13.4Withdrawal Yes 25,075 21.8 72.7 ± 11.8 ** Hospice Yes 10,518 41.9 73.9 ± 10.6 Hospice No 14,557 58.1 71.7 ± 12.3Withdrawal No 81,624 70.8 68.0 ± 13.4 Hospice Yes 2,751 3.4 71.7 ± 11.7 Hospice No 78,873 96.6 67.9 ± 13.5Withdrawal Status Unknown

8,540 7.4 71.1 ± 13.2

Murray and Moss, ASN 2004

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Death After Dialysis Withdrawal: Death After Dialysis Withdrawal: Are Patients Appropriate for Are Patients Appropriate for Hospice?Hospice?

StudyStudy YearYear NN MeanMean RangeRange

Neu & Neu & KjellstrandKjellstrand 19861986 155155 8.1 days8.1 days 1 - 291 - 29

Sekkarie & Sekkarie & MossMoss 19981998 6060 12 days12 days 0 - 1500 - 150

Cohen et alCohen et al 20002000 126126 8.2 days8.2 days 1 - 461 - 46

Ethical and Legal IssuesEthical and Legal Issues

Alvin H. Moss, MDCenter for Health Ethics and Law

Section of NephrologyWest Virginia University

ObjectivesObjectives

Present the recommendations of the RPA/ASN on when it is appropriate to withhold and stop dialysis

Discuss the ethical justifications Analyze 3 cases of dialysis patients at the end

of life in which decision-making is challenging

A Recent Case in Point A Recent Case in Point

Mrs. G is a 78 year old woman was referred by Mrs. G is a 78 year old woman was referred by her primary MD for evaluation of CKD with her primary MD for evaluation of CKD with worsening function. She had a 20 year history worsening function. She had a 20 year history of DM complicated by PVD, requiring toe of DM complicated by PVD, requiring toe amputation. She had multiple other comorbid amputation. She had multiple other comorbid illnesses including hypertension, cryptogenic illnesses including hypertension, cryptogenic cirrhosis with liver failure, pancytopenia, CHF, cirrhosis with liver failure, pancytopenia, CHF, and a history of massive GI bleeding from and a history of massive GI bleeding from esophageal varices a year ago. esophageal varices a year ago.

A Recent Case in Point A Recent Case in Point

The patient required assistance with all ADL except feeding and was residing in a NH. She had only a sister whom she named her medical power of attorney representative. She had decision-making capacity. Lab data revealed an estimated GFR of 15 ml/min, and a serum albumin of 2.8 mg/dl. It was obvious she would progress to ESRD soon. The patient made it clear that despite her poor prognosis, she wanted hemodialysis when needed.

When should we not start?When should we not start?When should we stop?When should we stop?

Clinical Practice Guideline #2

Shared Decision-MakingShared Decision-Making in the in theAppropriate Initiation ofAppropriate Initiation of and and Withdrawal from DialysisWithdrawal from Dialysis

Clinical Practice Guideline (CPG)Clinical Practice Guideline (CPG)

A systematically developed statement to assist practitioner and patient decisions about appropriate health care for specific clinical circumstances (IOM).

RPA/ASN GuidelineRPA/ASN Guideline

Nine recommendationsNine recommendations Rationale for each recommendationRationale for each recommendation 25 prognostic tables25 prognostic tables 302 references302 references Consensus of AAKP, RPA, ASN, ANNA,Consensus of AAKP, RPA, ASN, ANNA,

ASPN, NKF, NRAA, ESRD ForumASPN, NKF, NRAA, ESRD Forum

How Recommendations Were How Recommendations Were Developed?Developed?

The working group formulated specific The working group formulated specific guideline recommendations taking into guideline recommendations taking into account…account…– Ethical principlesEthical principles– Case and statutory lawCase and statutory law– Research Research

Peer review by stakeholdersPeer review by stakeholders

Ethical PrinciplesEthical Principles

Respect for patient autonomyRespect for patient autonomy BeneficenceBeneficence NonmaleficenceNonmaleficence JusticeJustice Professional integrityProfessional integrity

Topics to be ConsideredTopics to be Consideredin Ethical Analysisin Ethical Analysis

Medical IndicationsMedical Indications Patient PreferencesPatient Preferences Quality of LifeQuality of Life Contextual FeaturesContextual Features

Jonsen, Siegler, Winslade. Clinical Ethics, 5th ed.2002

Medical IndicationsMedical Indications

Diagnostic and therapeutic Diagnostic and therapeutic interventions (e.g., dialysis) are interventions (e.g., dialysis) are deemed to be indicated if the deemed to be indicated if the expected medical benefits justify expected medical benefits justify the risks.the risks.

Recommendation #1:Recommendation #1:Shared Decision-MakingShared Decision-Making

A patient-physician relationship that promotes shared decision-making is recommended for all patients with either ARF or ESRD. Participants in shared decision-making should involve at a minimum the patient and the physician. If a patient lacks decision-making capacity, decisions should involve the legal agent. With the patient’s consent, shared decision-making may include family members or friends and other members of the renal care team.

Recommendation #2:Recommendation #2:Informed Consent or RefusalInformed Consent or Refusal

Physicians should fully inform patients about their diagnosis, prognosis, and all treatment options, including: 1) available dialysis modalities, 2) not starting dialysis and continuing conservative management which should include end-of-life care, 3) a time-limited trial of dialysis, and 4) stopping dialysis and receiving end-of-life care. Choices among options should be made by patients or, if patients lack decision-making capacity, their designated legal agents. Their decisions should be informed and voluntary…

Recommendation #3Recommendation #3Estimating PrognosisEstimating Prognosis

To facilitate informed decisions about startingdialysis for either ARF or ESRD, discussions should occur with the patient or legal agent about life expectancy and quality of life.…All patients requiring dialysis should have theirchances for survival estimated, with the realization that the ability to predict survival inthe individual patient is difficult and imprecise.The estimates should be discussed with the patient or legal agent, patient’s family, and among the medical team.

Predictors of Poor PrognosisPredictors of Poor Prognosisfor ESRD Patientsfor ESRD Patients

AgeAgeFunctional abilityFunctional abilityNutritional statusNutritional statusComorbid Illnesses - diabetes, MI, PVDComorbid Illnesses - diabetes, MI, PVD

RPA/ASN. Shared Decision-Making in the Appropriate Initiation of and Withdrawal from Dialysis. 2000.

Nutritional StatusNutritional Status

Serum albumin < 3.5 g/dL Serum albumin < 3.5 g/dL ≈≈ 50% 1 yr mortality 50% 1 yr mortality Serum albumin < 2.5 g/dL vs > 4.0 g/dL confers Serum albumin < 2.5 g/dL vs > 4.0 g/dL confers

7.45 greater risk of early death7.45 greater risk of early death


Indicators of Poor PrognosisIndicators of Poor Prognosis

Severe functional impairment confers 3.46 times Severe functional impairment confers 3.46 times greater risk of early deathgreater risk of early death

Acute MI associated with 60% 1 yr mortalityAcute MI associated with 60% 1 yr mortality AKA associated with 73% 1 yr mortalityAKA associated with 73% 1 yr mortality


Charlson Comorbidity IndexCharlson Comorbidity Index1 point1 point MI, CHF, PVD, CVA, MI, CHF, PVD, CVA,

Dementia, COPD, PUD,Dementia, COPD, PUD,Mild liver diseaseMild liver disease

2 points2 points Mod-severe CKD, CA w/o metsMod-severe CKD, CA w/o metsDM with end-organ damageDM with end-organ damage

3 points3 points Mod-severe liver diseaseMod-severe liver disease6 points6 points Metastatic solid CAMetastatic solid CA

AIDSAIDS1 point1 point Each decade in age > 40 yearsEach decade in age > 40 years

Beddhu et at. Am J Med 2000;108:609-613

Calculated CCI for Mrs. GCalculated CCI for Mrs. G1 point1 point Congestive Heart FailureCongestive Heart Failure

1 point1 point Peripheral Vascular DiseasePeripheral Vascular Disease

2 points2 points Diabetes with end-organ damageDiabetes with end-organ damage

2 points2 points Severe kidney diseaseSevere kidney disease

3 points3 points Age correction (3 decades older than 40 yrs)Age correction (3 decades older than 40 yrs)

3 points3 points Severe liver diseaseSevere liver disease

TotalTotal 12 points12 points

Prognosis from CCIPrognosis from CCI

Low scoreLow score Mod ScoreMod Score High High ScoreScore

Very High Very High ScoreScore

CCI PointsCCI Points < or =3< or =3 4-54-5 6-76-7 = or >8= or >8

Mortality Mortality (per pt-yr)(per pt-yr)

0.030.03 0.130.13 0.270.27 0.490.49

Who Should Not Be DialyzedWho Should Not Be Dialyzed Patients (legal agents) who refuse dialysis Patients (legal agents) who refuse dialysis Patients with profound neurological impairmentPatients with profound neurological impairment Patients terminally ill from a non-renal causePatients terminally ill from a non-renal cause Patients whose condition precludes the technical Patients whose condition precludes the technical

process of dialysis-advanced dementia and process of dialysis-advanced dementia and severe mental disabilitysevere mental disability


Possible RecommendationsPossible Recommendationsto Mrs. Gto Mrs. G

Start dialysis without any limitationsStart dialysis without any limitationsTime-limited trial of dialysisTime-limited trial of dialysisRefuse to start dialysisRefuse to start dialysis

Recommendation #8Recommendation #8Time-Limited TrialsTime-Limited Trials

For patients requiring dialysis, but who have an uncertain prognosis, or for whom a consensus cannot be reached about providing dialysis, nephrologists should consider offering a time-limited trial of dialysis.

The Daughter Rescinded the DNR OrderThe Daughter Rescinded the DNR Order A 65-year-old widow with a history of DM, hypertension, and TIA was started on HD for DN. She was cognitively intact, cooperative, compliant, and able to deal with her diagnosis of ESRD. She used the Wheelchair Van Service because she did not want to be a burden. She had family support, primarily from her daughter. Two years after starting dialysis, she signed a DNR order and a Health Care Proxy, naming her daughter. About 2 weeks later, a CT scan done for mental status changes revealed multiple areas of infarction. Subsequently, she had numerous admissions to the hospital for fluid overload. Dialysis was increased to 4 times a week. Her mental status deteriorated further, and she was transferred to a NH.

Subsequently, she was noted to come from the NH to the dialysis facility very agitated. She would upset other patients. She became progressively problematic, and medications were tried to control her inappropriate yelling and screaming, to no avail. She was transferred to the hospital unit where she could be treated in isolation and observed more closely. She was starting to get out of her chair during treatments and pull out dialysis needles. Her daughter was repeatedly informed of her behavior, but her response was to rescind the DNR order.

The patient’s transfer to the hospital unit angered the daughter; she did not accept that it was in the patient’s best interest. The patient became more demented. She refused to eat; she lost 60 lbs down to 70 lbs. The daughter avoided meetings to discuss long-range planning. Yet she made it clear that she did not wish to stop dialysis. She asked about a feeding tube to increase the patient’s weight. The patient had no swallowing or GI problems to justify PEG placement. The patient continued to do poorly and died 5 years after starting dialysis and 14 months after becoming incapacitated.

Case Courtesy of Rocco C. Venuto, MD

The Daughter Rescinded The Daughter Rescinded the DNR Orderthe DNR Order

Medical IndicationsMedical Indications– Dialysis – Recommendation No. 7 appliesDialysis – Recommendation No. 7 applies– CPR - <5% chance of survival – ESRD, strokes, CPR - <5% chance of survival – ESRD, strokes,

dementia, malnutritiondementia, malnutrition Patient PreferencesPatient Preferences

– No CPR – failure to respect patient autonomyNo CPR – failure to respect patient autonomy– ADAD

• Daughter is proxyDaughter is proxy• Wishes re: withdrawal of dialysis unknownWishes re: withdrawal of dialysis unknown

Recommendation #7Recommendation #7Special Patient GroupsSpecial Patient Groups

It is reasonable to consider not initiating or It is reasonable to consider not initiating or withdrawing dialysis for patients with ARF withdrawing dialysis for patients with ARF or ESRD who have a terminal condition or ESRD who have a terminal condition from a nonrenal cause or whose medical from a nonrenal cause or whose medical condition precludes the technical process condition precludes the technical process of dialysis.of dialysis.

Recommendation #5Recommendation #5 Advance DirectivesAdvance Directives

The renal care team should attempt to The renal care team should attempt to obtain written advance directives from obtain written advance directives from all dialysis patients. These advance all dialysis patients. These advance directives should be honored.directives should be honored.

Failure of Advance Care Planning to Elicit Patients’ Preferences for

Withdrawal From Dialysis

Patients who had completed a living will and proxy were most likely to have discussed EOLC, but stopping dialysis was the least often discussed intervention, even in this patient subset. Sixty-nine percent had discussed MV; 55%, tube feedings; 43%, CPR; and only 31% had discussed stopping dialysis (all P < 0.001). Although withdrawal from dialysis is relatively common, it is rarely discussed in advance care planning by dialysis patients. Dialysis unit staff and nephrologists should address issues involving withdrawal from dialysis with their chronic dialysis patients. Am J Kidney Dis 1999; 33: pp 688-693

The Daughter Rescinded the DNR The Daughter Rescinded the DNR OrderOrder

QOLQOL– Multiple admissions for fluid overloadMultiple admissions for fluid overload– AgitationAgitation– Severe dementia with cachexiaSevere dementia with cachexia– Failure to thriveFailure to thrive

The Daughter Rescinded the DNR The Daughter Rescinded the DNR OrderOrder

ContextualContextual– Daughter ethically and legally ought not override Daughter ethically and legally ought not override

patient’s wishespatient’s wishes– NY lawNY law– Other patients in unit – use of sitter Other patients in unit – use of sitter – Daughter’s emotional and spiritual needsDaughter’s emotional and spiritual needs

Emotional and Spiritual IssuesEmotional and Spiritual Issues

“I am convinced that what really makes these decisions ‘hard choices’ has little to do with the medical, legal, ethical, or moral aspects of the decision process. The real struggles are emotional and spiritual. People wrestle with letting go. These are decisions of the heart, not just the head.”

Chaplain Hank Dunn, Hard Choices for Loving People, 4th ed., 2002

Spiritual Issues Spiritual Issues in Withdrawal of Dialysisin Withdrawal of Dialysis

Once the treatment is no longer medically indicated, the real issue is whether the patient or family (or physician) can “let go.”

“Those who choose such life-prolonging treatments for failing patients do so primarily out of an inability to let go and not out of moral necessity or medical appropriateness.”

Chaplain Hank Dunn, Hard Choices for Loving People, 4th ed.,2002

What should you do?What should you do?

Not allow the daughter to rescind the patient’s Not allow the daughter to rescind the patient’s DNR order to respect patient autonomyDNR order to respect patient autonomy

Require the daughter to sit with the patient during Require the daughter to sit with the patient during treatmentstreatments

Ask the daughter what the mother would want if Ask the daughter what the mother would want if she were able to sayshe were able to say

Instruct the daughter on her ethical and legal role Instruct the daughter on her ethical and legal role as durable power of attorney for health careas durable power of attorney for health care

Provide support to the daughterProvide support to the daughter

A 78 yr old woman presented with a 3 day hx of A 78 yr old woman presented with a 3 day hx of increasing SOB due to pulmonary edema. She had CKD increasing SOB due to pulmonary edema. She had CKD with a serum Cr of 12. CXR showed a large R hilar with a serum Cr of 12. CXR showed a large R hilar shadow suggestive of carcinoma of the lung. She shadow suggestive of carcinoma of the lung. She received hemodialysis pending work-up. Investigations received hemodialysis pending work-up. Investigations showed squamous cell carcinoma of the R lung; she was showed squamous cell carcinoma of the R lung; she was referred for radiotherapy. referred for radiotherapy.

With dialysis her dyspnea regressed, and she felt well. With dialysis her dyspnea regressed, and she felt well. There were no symptoms from the carcinoma. She There were no symptoms from the carcinoma. She requested to continue dialysis so that she could visit her requested to continue dialysis so that she could visit her extended family and tidy her affairs. She said she would extended family and tidy her affairs. She said she would wish to stop dialysis once she developed symptoms wish to stop dialysis once she developed symptoms from the cancer. After 7 wks of dialysis she developed from the cancer. After 7 wks of dialysis she developed dyspnea and pain related to her cancer. She withdrew dyspnea and pain related to her cancer. She withdrew from dialysis and received palliative care until her death.from dialysis and received palliative care until her death.

Short-term Benefit in a Terminally Ill Patient

Reasons to Dialyze Reasons to Dialyze Terminally Ill PatientsTerminally Ill Patients

Short-term benefit for competent patientShort-term benefit for competent patient Time-limited trial of dialysis to help patient and Time-limited trial of dialysis to help patient and

family understand burdens of treatmentfamily understand burdens of treatment

There is an option for ESRD patients There is an option for ESRD patients who choose to stop or not to start who choose to stop or not to start dialysis: dialysis: continuedcontinued palliative care. palliative care.

Recommendation #9 Recommendation #9 Palliative CarePalliative Care

All patients who decide to forgo dialysis (or for whom such a decision is made) should receive continued palliative care. With the patient’s consent, persons with expertise in such care, such as hospice health care professionals, should be involved in managing the medical, psychosocial, and spiritual aspects of end-of-life care for these patients. Patients should be offered the option of dying where they prefer including at home with hospice care. Bereavement support should be offered to patients’ families.

Shared Decision-Making Shared Decision-Making in the Appropriate Initiation ofin the Appropriate Initiation ofand Withdrawal from Dialysisand Withdrawal from Dialysis

[email protected] 301.468.3515

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

www.promotingexcellence.org/esrd/www.promotingexcellence.org/esrd/

Completing the Continuum of Nephrology Care

ConclusionsConclusions

Recent research enables us to predict more Recent research enables us to predict more accurately the patients for whom the burdens accurately the patients for whom the burdens of dialysis will likely outweigh the benefits.of dialysis will likely outweigh the benefits.

Dialysis decision-making should remain case-Dialysis decision-making should remain case-by-case.by-case.

New nephrology guidelines are helpful in New nephrology guidelines are helpful in decision-making.decision-making.

Professional integrity requires us to respect Professional integrity requires us to respect patients’ wishes even when families want to patients’ wishes even when families want to override them and to do no harm.override them and to do no harm.

palliative care for the esrd

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