Presentation on theme: "Alvin H. Moss, MD, FACP, FAAHPM"— Presentation transcript:
1 Alvin H. Moss, MD, FACP, FAAHPM Nephrology Care at the End of Life: New Guideline on Withholding and Withdrawing DialysisAlvin H. Moss, MD, FACP, FAAHPMSection of NephrologyWest Virginia University School of Medicine
2 Alvin H. Moss, MD has disclosed no relevant financial relationships.
3 ObjectivesEmploy appropriate goals and management strategies for patients who are unable to proceed with rehabilitative renal replacement therapyDescribe the 2nd edition of the Shared Decision-Making in the Appropriate Initiation of and Withdrawal from Dialysis guidelineApply the guideline recommendations to casesExplain 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 PointsMr. 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-based10 adult recommendations9 pediatric recommendationsRationales and strategies forimplementation for eachTool kit of validated instrumentsAvailable 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 RRTPatients 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 comfortPatients who decline dialysis and prefer that the primary goal of care be their comfort-active medical management
9 Providing Effective Palliative Care Recommendation No. 9To 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. 10Use a systematic approach to communicate about diagnosis, prognosis, treatment options, and goals of care.
10 End-of-Life/ Hospice Care Alvin H. Moss, MDApril 8, 2009Relationship betweenPalliative Care and EOLCPalliative CareHospice 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 CareEnd-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 dialysisAn online calculator to estimate prognosis in ESRD patientsThe identification of distinctly different treatment goals for ESRD patients based on their overall condition and preferencesThe 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 capacityThe under treatment of pain in dialysis patientsThe underutilization of hospice in dialysis patientsStrategies to assist nephrologists with communication challenges regarding prognosis and treatment optionsRecommendations with regard to pediatric dialysis decision-making
13 10 GUIDELINE STATEMENTS: 6 TOPICS #1Establishing a shared decision-making relationship#2,#3Informing patients#4Facilitating advance care planning#5,#6Making decisions about initiating and discontinuing dialysis#7,#8Resolving conflicts about which dialysis decisions to make#9,#10Providing 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 requestsStop dialysis because the patient is comatoseRequest an ethics consultationSeek 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” DIRECTLYPatients with decision-making capacity, who being fully informed and making voluntary choices, refuse dialysis or request that dialysis be discontinuedPATIENT SAYS “NO” INDIRECTLYPatients who no longer possess decision-making capacity who have previously indicated refusal of dialysis in an oral or written advance directivePROXY SAYS “NO”Patients who no longer possess decision-making capacity and whose properly appointed legal agents/surrogates refuse dialysis or request that it be discontinuedPROVIDERS SAY “NO”Patients with irreversible, profound neurological impairment such that they lack signs of thought, sensation, purposeful behavior, and awareness of self and environment.1,21J Am Soc Nephrol 1994;4(11):2N Engl J Med 1990;322(14):
21 Resolving Conflicts about Which Dialysis Decisions to Make Recommendation No. 8Establish 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 patientAttempt to transfer care within the hospitalAttempt to transfer care to another hospitalStop dialysis without further discussion
25 Conflict ResolutionIn following the process, the treating nephrologist contactednephrologists throughout the state. No other nephrologist and hospitalwas willing to accept the patient and dialyze her.The daughter’s attorney sought a court order to force the hospitalto continue dialyzing the patient. The judge ruled that the hospital onlyneeded to continue dialysis for one more week to see if the family couldfind a nephrologist to dialyze the patient. He was influenced in his ruling by1) the clinical practice guideline recommending against dialysis for a personin the patient’s condition, and 2) there was no othernephrologist who could be found who was willing to dialyze the patient.
26 Predictors of Poor Prognosis for ESRD Patients AgeFunctional abilityNutritional statusComorbid Illnesses–eg, DM, PVDRPA. 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 thispatient died in the next year?”Moss A., et. al. Utility of the “Surprise” Question to Identify Dialysis Patientswith High Mortality. Clin J Am Soc Nephrol 2008;3:
28 http://touchcalc.com/calculators/sq Mortality Prediction for Mr. HigginsCohen LM, Ruthazer R, Moss AH, Germain MJ. Predicting six-month mortality for patientswho 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 PredictionRisk FactorsPointsBMI≥ 18.5< 18.52DiabetesAbsencePresence1CHF III/IVPVD III/IVDysrhythmiaRisk FactorsPointsActive malignancyAbsencePresence1Severe behavioral disorder2Totally dependent for transfers3Initial contextPlannedUnplannedCouchoud C., et. al. Renal Epidemiology and information Network (REIN) registry. A clinical score to predict 6-monthprognosis 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 Point81 Point102 Points14173-4 Points26215-6 Points35337-8 Points5150≥ 9 Points6270All19Mr. Higgins’ score was 6 points!Couchoud C., et. al. Renal Epidemiology and information Network (REIN) registry. A clinical score to predict 6-monthprognosis in elderly patients starting dialysis for end-stage renal disease. Nephrol Dial Transplant 2009; 24(5):
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 comparisonN=129 > 751st and 2nd year survival better in dialysis group except in those with greatest comorbidity scoreKaplan-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 StudyNDialysisMM*Median survivalIndependent PredictorsAge (yrs)GFR (ml/min)Smith 200332125863RRT MM8.3 vs. 6.3 mo=NSAge KPS DiabetesMean 61.5< 15 CGJoly 200314410737RRT MM28.9 vs. 8.9 months P<.001KPS Social Isolation Late ReferralDiabetes Low BMIMean 83Cut off ≥ 80<10 CGCarson 200920217329RRT MM vs months P<.001Age≥70Cut off≤30Murtagh 20071295277RRT MMMM 18 monthsNo survival advantage for RRT patients with high comorbidity score or ischemic heart disease.Age Comorbidity IschemicHeart Disease>75 yrs< 15Stage 5Wong 200773--MM 23.4 months1-yr survival 65%ComorbidityMedian 79 yrsMedian 12Range (4-31)Ellam 200969MM 21 monthsSerum albumin ≤3.5 g/dLLate referralMedian 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 yearsHigh 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).DiagnosisOptionsprognosisPatients in this population should be informed:Dialysis may not confer a survival advantage or improve functional status over medical management without dialysisDialysis 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 advantagePatients with this level of illness more likely to die than live long enough to progress to ESRD 1The majority of patients in their condition die or succumb to significant functional decline during their first year on dialysis 2Life on dialysis entails burdens likely to detract from their quality of lifeSurgery and complications for vascular access or peritoneal access placementAdverse physical symptoms on dialysis --dizziness, fatigue, and cramping, and a feeling of “unwellness” after dialysis.Travel time and expense to and from dialysisLong 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 188.8.131.52 – Coverage Under the Hospice Benefit Alvin H. Moss, MDApril 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. HigginsEnd-of-Life Care
39 Underutilization of Hospice in ESRD 2009 Dialysis DeathsPatientsNumber (%)Number (%) Using HospiceWithdrew from Dialysis20,854 (26)13,502 (65)Continued Dialysis59,032 (74)3,410 (6)TOTAL79,886 (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, MDApril 8, 20098.17.4P < .001P=0.1101.51.8Barakzoy & Moss. Efficacy of the WHO Analgesic Ladderto 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 symptomsWeisbord SD, et al. J Pain Symptom Manage 2004;27:
44 Contact the Kidney End of Life Coalition at email@example.com For additional information, includingresources for patients and families,visitAdvance care planning informationDo not resuscitate orders in the dialysis unitAccess to hospiceClinician educational resourcesContact the Kidney End of Life Coalition at
45 ConclusionsThere is a new 2nd edition of the RPA guideline on initiation and withdrawal of dialysisThe guideline contains recommendations for adult and pediatric dialysis decision-makingThere is accumulating evidence to assist in prognosis prediction for ESRD patientsThere 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 patientsPain and symptoms can be adequately treated in dialysis patients but many nephrologists lack knowledge