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

UK Renal Registry 2012 Annual Audit Meeting

October 9th 2012Dr Aine Burns

Consultant NephrologistCentre for Nephrology Royal Free NHS Foundation

Trust London

Conservative Kidney Management How and what can we audit?

October 9th 2012Dr Aine Burns

Consultant NephrologistCentre for Nephrology Royal Free NHS Foundation

Trust London

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 UKParis 22-23May 2012

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 numbersQuality 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!

LC by Age - Mar 2012

40-497% 50-59

9%

80-8931%

70-7929%

60-6914%

90-997%

Under 301%

30-392%

No. of Patients: 1243

PD by Age - Mar 2012

40-49

13%

50-59

18%

60-69

19%

70-79

22%

80-89

15%

Under 30

8%

90-99

0%30-39

5%

No. of Patients: 96HD by Age - Mar 2012

30-396% 40-49

13%

50-5916%

70-7927%

80-8914%

60-6920%

90-991%

Under 303%

No. of Patients: 707Tx by Age - Mar 2012

30-3916%

40-4923%

50-5924%

60-6918%

Under 3010%

70-798%

80-891%

No. of Patients: 1022

MCM All Sites

40-49 , 0, 0%

50-59 , 1, 1%

70-79 , 22, 18%

80-89, 76, 60%

90-99, 21, 17%

Under 30 , 1, 1%

60-69 , 4, 3%

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• 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

Months on Dialysis

908478726660544842363024181260

Cum

Sur

viva

l1.0

.9

.8

.7

.6

.5

.4

.3

.2

.1

0.0

< 50 Yearsn = 67

50 - 65n = 77

65 -75n = 98

> 75 Yearsn = 48

P < 0.0001

P = 0.0007

Age and Survival

Survival:

Carson & Burns, CJASN 2008

Survival:

Carson & Burns, CJASN 2008

The MCM group were on average 6 years older than the dialysis group.Co-morbidity identical(Charlston = 7.2)

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 LifeFliss 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. conservative care) of 105 patients with end-stage chronic kidney disease.

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

0

200

400

600

800

1000

1200

1400

HD

CAPD

LC

TX

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

LC by Age - Mar 2012

40-497% 50-59

9%

80-8931%

70-7929%

60-6914%

90-997%

Under 301%

30-392%

No. of Patients: 1243

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

LC by Age - Mar 2012

40-497% 50-59

9%

80-8931%

70-7929%

60-6914%

90-997%

Under 301%

30-392%

No. of Patients: 1243

PD by Age - Mar 2012

40-49

13%

50-59

18%

60-69

19%

70-79

22%

80-89

15%

Under 30

8%

90-99

0%30-39

5%

No. of Patients: 96HD by Age - Mar 2012

30-396% 40-49

13%

50-5916%

70-7927%

80-8914%

60-6920%

90-991%

Under 303%

No. of Patients: 707Tx by Age - Mar 2012

30-3916%

40-4923%

50-5924%

60-6918%

Under 3010%

70-798%

80-891%

No. of Patients: 1022

Conservative Kidney Management: How and what can we audit?

Demographics Co-morbidity

SurvivalRecorded cause of death

Place of deathReligion

Post-code /deprivation score

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

• 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

LCC Pop.Deceased MCMx Current MCMx

Pop.

N=259 N=24 N=43

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

Religious Beliefs

Patient’s AnxietiesPatient’s Anxieties

What will happen if I don’t have

dialysis

What will the Doctor think if I don’t have

dialysis

How longwill it take

Where will I Die

Can I still contact you

Will I still be Will I still be followed up followed up

at clinicat clinic

What will my death be like

How will my family cope

Nephrologist’s AnxietiesNephrologist’s Anxieties

What will happen if he/she don’t have

Dialysis?What will the Patient think if I don’t offer

Dialysis?

How longwill it take to explain the

choices andmake sure this

Pt. Understands?

Will a hospice accept him/her?

What is my Legal position?

Will I still have to follow them up

in clinic?

How long will he/she survive?

Will he/she need frequent admissions

?

We have no space!

Will dialysis prolong life here?

If this were my grandma

what would I/she want?

Current MCMx patients: N= 43

COENoneJewishCatholicGreek OrthodoxBuddistBaptistChristianMuslimHindu

Deceased MCMx patients: N = 24

Religious Beliefs

• 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

0

500

1000

1500

2000

2500

3000

3500

Mar 11 Mar 12

Transplant

PD

Low

HD

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%