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

2. 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

3. 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

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 numbers
Quality 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

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

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

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

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

16. 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

17. Conservative Kidney Management: How and what can we audit?

18. 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

19. Decision aids
Trade offs
Health literacy

20. 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

21. Age and Survival Cum Survival Months on Dialysis 1.0 < 50 Years.9 .8 .7
65 -75
n = 77
n = 98 .6
P <
Cum Survival .5
P = .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

22. Survival:
Carson & Burns, CJASN 2008

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

24. Survival: Hospital free days
Carson & Burns, CJASN 2008

25. Symptoms in CKD 5 Murtagh et al. 2007

26. Symptom burden
Dinneen & Burns, British Renal Association Abstract 2011

27. Performance status: 2002

28. 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

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 hospice
Final illness short 3-7 days
eGFR ± 4ml/min
Pulmonary oedema rarely an issue
Carson & 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 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

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.

37. Merci!

38. Feedback invited

39. MCM data set??

41. Renal Modality Trend Analysis – Mar 2012

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

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

44. 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

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

46. 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

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 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

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.

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

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

53. 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

54. 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?

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

57. 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%