UK Renal Registry 2012 Annual Audit Meeting October 9th 2012 Dr Aine Burns Consultant Nephrologist Centre for Nephrology Royal Free NHS Foundation Trust London

Conservative Kidney Management How and what can we audit? October 9th 2012 Dr Aine Burns Consultant Nephrologist Centre for Nephrology Royal Free NHS Foundation Trust London

Dr Aine Burns MD FRCP MSc Med Ed. Session 5: Which decision in elderly with CKD? International Seminar on Renal Epidemiology Dr Aine Burns MD FRCP MSc Med Ed. Consultant Nephrologist, Centre for Nephrology Royal Free Hospital Campus UCL London UK Paris 22-23May 2012

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"

Conservative Kidney Management: How and what can we audit?

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???

Conservative Kidney Management: How and what can we audit? First instance numbers Quality standards which deliver on their intent

Overview Where we have come from Where we are now Where we want to go MCM data set and Quality outcome measures

A remarkable journey! 1964: Prof. Robin Eady and “the lucky 13!”

A remarkable journey! 1964: Prof. Robin Eady and “the lucky 13!” 2012: Almost 100 and going strong!

Terminology :~ Conservative management Maximum conservative management Renal supportive care Residual renal support Conservative kidney care The non-dialysis option The no clearance clinic!!

A remarkable journey! 1964: Prof. Robin Eady and “the lucky 13!” 2002-2012: MCM  2012: Almost 100 and going strong! 

Mission :D Reverse the reversible Preserve residual renal function Treat inter-currant illnesses Identify and treat symptoms Maximize functional status Plan end of life care Support family and close persons Minimize futile interventions

Conservative Kidney Management: How and what can we audit?

Not easy :?? Frailty Dementia Cognition Depression Loneliness Bereavement Mobility Functional status Advance directives Capacity Co-morbidity Inter-currant illness Falls Difficult conversations Ceilings of care Family wishes Absent relatives Hospital visits Shared care Cost

Decision aids Trade offs Health literacy

Not easy :?? Frailty Dementia Cognition Depression Co-morbidity Lonleiness Bereavement Mobility Functional status Advance directives Capacity Co-morbidity Inter-currant illness Falls Difficult conversations Ceilings of care Family wishes Absent relatives Hospital visits Shared care Cost

Age and Survival Cum Survival Months on Dialysis 1.0 < 50 Years .9 .8 .7 50 - 65 65 -75 n = 77 n = 98 .6 P < 0.0001 Cum Survival .5 P = 0.0007 .4 > 75 Years .3 n = 48 It 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 .1 0.0 6 12 18 24 30 36 42 48 54 60 66 72 78 84 90 Months on Dialysis

Survival: Carson & Burns, CJASN 2008

Survival: The MCM group were on average 6 years older than the dialysis group. Co-morbidity identical (Charlston = 7.2) Carson & Burns, CJASN 2008

Survival: Hospital free days Carson & Burns, CJASN 2008

Symptoms in CKD 5 Murtagh et al. 2007

Symptom burden Dinneen & Burns, British Renal Association Abstract 2011

Performance status: 2002

Performance status End-Stage Renal Disease: A New Trajectory of Functional Decline in the Last Year of Life Fliss E.M. Murtagh PhD, Julia M. Addington-Hall PhD, Irene J. Higginson PhD. Journal of the American Geriatrics Society Volume 59, Issue 2, pages 304–308, February 2011

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.

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

Quality of death: MCM patients were 4 times more likely to die at home or in a hospice Final illness short 3-7 days eGFR ± 4ml/min Pulmonary oedema rarely an issue Carson & Burns, CJASN 2008

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 months a short final illness 4 times greater chance of dying at home or in hospice setting intervention free out of hospital days may not differ much from patients who choose dialysis

Will home assisted PD influence numbers choosing MCM?? What about un-captured patients?

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.

Merci!

Feedback invited

MCM data set??

Renal Modality Trend Analysis – Mar 2012

Renal Modality Age Analysis: LCC = eGFR<30 diabetic, <20 non-diabetic

Renal Modality Age Analysis: LCC = eGFR<30 diabetic, <20 non-diabetic

Conservative Kidney Management: How and what can we audit? Demographics Co-morbidity Survival Recorded cause of death Place of death Religion Post-code /deprivation score

Symptom burden Performance status/trajectories Survival & hospital free days Quality of death Decision making

Performance status/trajectories Survival & hospital free days Symptom burden Performance status/trajectories Survival & hospital free days Quality of death (preferred place of death) Decision making late changes in modality advanced care plans/advanced directives, will availability of home assisted PD influence patient/family choice

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!!

Decision making Shared 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

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.

Ethnicity N=259 N=24 N=43 Deceased MCMx Current MCMx Pop. LCC Pop.

Current MxCM patients: N= 43 Religious Beliefs Deceased MxCM patients: N = 24 Current MxCM patients: N= 43

Patient’s Anxieties What will happen if I don’t have What will the dialysis What will the Doctor think if I don’t have dialysis What will my death be like Where will I Die Will I still be followed up at clinic How will my family cope How long will it take Can I still contact you

Nephrologist’s Anxieties Will dialysis prolong life here? Nephrologist’s Anxieties If this were my grandma what would I/she want? What will happen if he/she don’t have Dialysis? How long will he/she survive? What will the Patient think if I don’t offer Dialysis? Will a hospice accept him/her? Will I still have to follow them up in clinic? Will he/she need frequent admissions ? How long will it take to explain the choices and make sure this Pt. Understands? We have no space! What is my Legal position?

Current MCMx patients: N= 43 Religious Beliefs Deceased MCMx patients: N = 24 Current MCMx patients: N= 43

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.

Renal Yr-Yr Trends – Mar 2011/12 Modality Type Mar 11 Mar 12 % Increase HD 690 707 2.40% Low 1127 1243 9.33% PD 80 96 16.67% Transplant 916 1022 10.37% 2813 3068 8.31%