1 UK Renal Registry 2012 Annual Audit Meeting October 9th 2012Dr Aine BurnsConsultant NephrologistCentre for Nephrology Royal Free NHS Foundation Trust London
2 Conservative Kidney Management How and what can we audit? October 9th 2012Dr Aine BurnsConsultant NephrologistCentre for Nephrology Royal Free NHS Foundation Trust London
3 Dr Aine Burns MD FRCP MSc Med Ed. Session 5: Which decision in elderly with CKD? International Seminar on Renal EpidemiologyDr Aine Burns MD FRCP MSc Med Ed.Consultant Nephrologist, Centre for Nephrology Royal Free Hospital Campus UCL London UKParis 22-23May 2012
4 Which decision in elderly with CKD. Dialysis withholding in CKD 5 Which decision in elderly with CKD? Dialysis withholding in CKD 5! "Maximum conservative management for elderly patients with renal failure stage 5"
5 Conservative Kidney Management: How and what can we audit?
6 Conservative Kidney Management: How and what can & should we audit? What is important to us and what is important to our patients and their close persons???
7 Conservative Kidney Management: How and what can we audit? First instance numbersQuality standards which deliver on their intent
8 Overview Where we have come from Where we are now Where we want to go MCM data set and Quality outcome measures
16 Mission :D Reverse the reversible Preserve residual renal function Treat inter-currant illnessesIdentify and treat symptomsMaximize functional statusPlan end of life careSupport family and close personsMinimize futile interventions
17 Conservative Kidney Management: How and what can we audit?
18 Not easy :?? Frailty Dementia Cognition Depression Loneliness BereavementMobilityFunctional statusAdvance directivesCapacityCo-morbidityInter-currant illnessFallsDifficult conversationsCeilings of careFamily wishesAbsent relativesHospital visitsShared careCost
20 Not easy :?? Frailty Dementia Cognition Depression Co-morbidity LonleinessBereavementMobilityFunctional statusAdvance directivesCapacityCo-morbidityInter-currant illnessFallsDifficult conversationsCeilings of careFamily wishesAbsent relativesHospital visitsShared careCost
21 Age and Survival Cum Survival Months on Dialysis 1.0 < 50 Years .9.8.765 -75n = 77n = 98.6P <Cum Survival.5P =.4> 75 Years.3n = 48It is however not that simple. These graphs are updated from our recently published retrospective study on factors affecting survival on dialysis. We included everyone entering our chronic dialysis programme. In the paper, the minimum follow up was 16 months but in these graphs it is now 3 years. This is a Kaplan Meyer survival curve. Each step represent a death and each triangle denote a survivor at the end of follow up.You can see that there is no obvious, or statistically significant, difference in survival in the young elderly (65 to 75 years group) and old elderly, i.e. over 75..2.10.061218243036424854606672788490Months on Dialysis
28 Performance statusEnd-Stage Renal Disease: A New Trajectory of Functional Decline in the Last Year of LifeFliss E.M. Murtagh PhD, Julia M. Addington-Hall PhD, Irene J. Higginson PhD.Journal of the American Geriatrics SocietyVolume 59, Issue 2, pages 304–308, February 2011
30 Patients were willing to forgo 7 months of life expectancy to reduce the number of required visits to hospital and 15 months of life expectancy to increase their ability to travel.Interpretation: Patients approaching end-stage kidney disease are willing to trade considerable life expectancy to reduce the burden and restrictions imposed by dialysis.
31 Treatment preferences (dialysis v Treatment preferences (dialysis v. conservative care) of 105 patients with end-stage chronic kidney disease.Treatment preferences (dialysis v. conservative care) of 105 patients with end-stage chronic kidney disease. For numeric variables (life expectancy, number of visits to hospital and number of hours of dialysis per treatment), odds ratios correspond to an increase of one unit (i.e., 1 year, 1 visit to hospital per week, 1 hour of dialysis). For ordinal qualitative attributes (travel restrictions, available subsidized transport and treatment flexibility), odds ratios correspond to an increase of one level (e.g., from no subsidized transport to partially subsidized transport, or from partially subsidized to fully subsidized). For the variable “time of day”, dialysis during the day was used as the reference group. CI = confidence interval, OR = odds ratio.Morton R L et al. CMAJ 2012;184:E277-E283
32 Quality of death:MCM patients were 4 times more likely to die at home or in a hospiceFinal illness short 3-7 dayseGFR ± 4ml/minPulmonary oedema rarely an issueCarson & Burns, CJASN 2008
33 MCM: A new phase in a remarkable journey Legitimate & positive treatment option chosen by approx 10% of our elderly patients which delivers:maintained functional status for many monthsa short final illness4 times greater chance of dying at home or in hospice settingintervention free out of hospital days may not differ much from patients who choose dialysis
34 Will home assisted PD influence numbers choosing MCM?? What about un-captured patients?
36 Key results During the period 2003–2007, there were nearly 21,500 new cases of ESKD in Australia, amounting to about 21 cases per 100,000 people. For every new case who receives dialysis or transplant, there is about one new case that does not.
44 Conservative Kidney Management: How and what can we audit? DemographicsCo-morbiditySurvivalRecorded cause of deathPlace of deathReligionPost-code /deprivation score
45 Symptom burdenPerformance status/trajectoriesSurvival & hospital free daysQuality of deathDecision making
46 Performance status/trajectories Survival & hospital free days Symptom burdenPerformance status/trajectoriesSurvival & hospital free daysQuality of death (preferred place of death)Decision makinglate changes in modalityadvanced care plans/advanced directives,will availability of home assisted PD influence patient/family choice
47 Decision making Shared decision making Why do patients choose MCM? How & when should we have these conversations?Do many patients change their minds?The time factor!!
48 Decision makingShared decision making (national shared decision making programme)Why do patients choose MCM? (don’t want to be a burden/ don’t want change/ all religions & ethnic groups more or less equally represented)How and when should we have these conversations? (? as early as possible)Do many patients change their minds? (not many)The time factor!! Value of trained nurse specialists
49 New method for estimating the total incidence of ESKD The number of non-KRT-treated cases is estimated using a defined set of cause of death codes in the national mortality data, with the aim of counting people who died with ESKD in the study period. This number can then be added to the already available number of dialysis and transplant cases recorded on a national register. Data linkage is used to ensure that people treated with dialysis or transplant who die during the study period are only counted once.
52 Current MxCM patients: N= 43 Religious BeliefsDeceased MxCM patients: N = 24Current MxCM patients: N= 43
53 Patient’s Anxieties What will happen if I don’t have What will the dialysisWhat will theDoctor think ifI don’t havedialysisWhat will mydeath be likeWhere willI DieWill I still befollowed upat clinicHow will myfamily copeHow longwill it takeCan I stillcontact you
54 Nephrologist’s Anxieties Will dialysisprolonglife here?Nephrologist’s AnxietiesIf this weremy grandmawhat would I/she want?What will happenif he/she don’t haveDialysis?How long willhe/she survive?What will thePatient think ifI don’t offerDialysis?Will a hospiceaccept him/her?Will I still haveto follow them upin clinic?Will he/she needfrequent admissions?How longwill it take to explain thechoices andmake sure thisPt. Understands?We have no space!What is myLegal position?
55 Current MCMx patients: N= 43 Religious BeliefsDeceased MCMx patients: N = 24Current MCMx patients: N= 43
56 Attention to the clinical trajectory is required to calibrate expectations and guide timely decisions, but prognostic uncertainty is inevitable and should be included in discussions with patients and caregivers.