Palliative and End of Life Care in End Stage Renal Disease Palliative and End of Life Care Priority for Action Regional Consensus Workshop 30.06.2010 Neal Morgan Consultant Nephrologist SHSCT
Outline Introduction Illustrative cases Patient outcomes in ESRD Renal failure and end of life care National context Models of care Regional opportunities
44,000 people on RRT in UK Median age starting dialysis is 65yrs Remaining life years 65 69yr group 3.9 yrs on RRT 17.2yrs in general population 15% choose not to undergo dialysis
Case 1 86yr old male patient Advanced kidney failure GFR 15% (relatively static) Multiple co morbidities including inoperable aortic stenosis, baseline blood pressure poor Gradual decline in exercise tolerance over past 12months Renal staff consider conservative care a suitable option
Patient education + discussion of RRT options Discussed with patient Agreed dialysis not for him Next OPD review I would take it if it came to it Next OPD review I don t think dialysis would be for me Asked to bring other relevant family members to next discussion... Next OPD review discussed at length the pros and cons of HD in the context of co morbidities Patient and family agree that dialysis therapy not in best interests Discussed the potential for acute deterioration in renal function if inter currently unwell precipitating on to chronic dialysis programme Family tearful at prospect of non dialytic management in such an instance
Case 2 64yr HD patient Extensive co morbidities most notably occlusive coronary artery disease and peripheral vascular disease Historically very keen to remain on transplant list despite medical staff concerns re suitability Now clearly unsuitable for transplant patient not informed Medical staff would not be surprised if died within next 12months at present no plans to discuss this with patient
Case 3 55yr HD patient Intractable pain on account of peripheral vascular disease Multiple reviews by renal medical staff for analgesic control Discussed possibility of review by palliative care specialists for expert advice on analgesic control Very upset at mention of palliative care input refused to see
1940 2010
Progress 1. Dialysis as a procedure is considerably better Partly due to this success we now treat sicker patients 2. Dialysis patients as a group now carry a considerable burden of ill health
Outcome of patients with CKD stages 3 5 % with events at 5yr 50 45 40 35 30 25 20 15 10 5 0 Stage 3 Stage 4 Stage 5 Category of CKD Survivor cohort RRT Death Keith et al. Arch Int Med 2004; 164: 659 663
Figure 7.23: Cause of death for prevalent dialysis patients in 2007 Infection 18% Malignancy 7% Treatment withdrawal 14% Cerebrovascular disease 5% Other 8% Cardiac disease 25% Uncertain 23% UK Renal Registry 11th Annual Report
Regional data We re all the same...aren t we?
RRT modality at 90dy HD PD TX STOP Rx DIED AAH 67 11 0 11 11 BCH 77 15 3 0 5 DHH 59 29 0 6 6 TCH 87 10 0 3 0 UHD 64 29 0 0 7
Renal diagnosis at presentation 2008 80 70 60 50 40 30 20 10 0 AAH BCH DHH TCH UHD UK ALL DM GN UNCERT OTHER
Outcomes Conservative Care (15%) vs Dialysis (85%) Cohort study Matched in terms of co morbidity Conservative group 5yrs older Putative RRT start date calculated for conservative group (8mls/min) Survival Dialysis = 38 months Conservative = 14 months Almost every additional day of life was at the expense of a hospital visit or intervention Dialysis group >4times more likely to die in acute hospital setting Carson R et al CJASN 2009;4:1611 9
Palliative and End of Life Care in End Stage Renal Disease National context
First national service framework to talk about death and dying
Renal NSF NSF2 Quality requirement 4 1. Timely evaluation of prognosis 2. Information about choices available to them 3. For those near end of life a jointly agreed palliative care plan
End of Life Care in Advanced Kidney Disease: A Framework for Implementation NHS Kidney Care National End of Life Care Programme
Key themes 1. Involvement of patients and carers 2. Definitions 3. Commissioning 4. Coordination 5. Education and training
Terminology
Co ordination Register within kidney units to link with GP palliative care registers Local clinical leads Key workers identified within renal, palliative and community services Shared care planning Prevent unnecessary hospital admissions
Education and training Training in end of life care issues should form part of the curriculum for core medical training and specialist training in nephrology and for specialist renal nurse training Regional training days should be developed for renal, palliative care and primary care multidisciplinary teams Training for renal staff in advanced communication skills Educational resources should be developed (e learning)
Admissions of guilt......excuses
Starting a conversation with ESRD patients about end of life issues some barriers Staff (Paternalism is rife) No specific training in current renal curriculum Differing working practices across renal units in NI (corporate vs individual consultant responsibility) Patients Literature indicates patients do not view themselves as terminally ill and few choose DNAR order (typically a survivor cohort) Development of cognitive impairment can hamper discussion when if left to late in illness Unpredictable disease trajectory...when to initiate discussion??
Uncommon Uncommon Common Common
Models of care
At Risk patient groups Conservative kidney management Around decision to withdraw from dialysis Time of crisis e.g. recent CVA, cardiac event Deteriorating despite dialysis
EOL Care Renal specific tools
Regional Opportunities Kidney community is tight knit regionally (NINF) and nationally
emed Renal Regional renal IT system Patient identity via NHS no. Sample data entries Conservatively managed cohort Patient demographics (NOK etc) Co morbidities BMI Clinical chemistry (e.g. Serum Alb)
Data entries to a renal register Patient Demographics Name Hospital number, H+C no. Date of birth Contact details Next of kin details Baseline Medical/ Nursing assessment + ESAS symptom score* Davies co morbidity score* Baseline Functional assessment Karnofsky performance status* Baseline Dietetic assessment Nutritional status Baseline Social Work assessment Support network *Validated in ESRD emed Renal would not have the capability to run such a comprehensive report
Thank you
Useful web links + references National Service Framework for Renal Services Part Two End of Life Care in Advanced Kidney Disease: A Framework for Implementation www.kidneycare.nhs.uk UK Renal Registry www.renalreg.com Liverpool Care Pathway (LCP) for the Dying Patient National LCP Renal Steering Group. Guidelines for LCP Drug Prescribing in Advanced Chronic Kidney Disease Neal.Morgan@southerntrust.hscni.net
SHSCT Withdrawal from dialysis protocol
IS PATIENTS DECISION MAKING CAPACITY DIMINISHED COMPETENT ADULTS COMMENT DATE SIGN Is decision an attempt to gain control / attention? Conflict between patient and others? Would patient consent to counseling with a psychologist? Exclude depression INCOMPETENT ADULTS COMMENT DATE SIGN 2 ND opinion re capacity if unclear Exclude encephalopathy Exclude under dialysis WHY DOES THE PATIENT WISH TO STOP DIALYSIS INDICATION COMMENT DATE SIGN Functional decline General disease burden Patients expectations of dialysis Dialysis induced symptoms Transportation Timing of dialysis HAS THE PATIENT DISCUSSED WISHES WITH SIGNIFICANT OTHERS OUTCOME COMMENT DATE SIGN Advance directives BASELINE ASSESSMENT
Symptom burden (Modified ESAS score 0 100) Dialysis related symptoms Standard assessment completed Karnofsky performance status Multidisciplinary assessment Medical assessment Score Date Sign Dialysis nursing assessment Symptoms Date Sign Occupational therapy assessment Comments Date Sign Filed to chart Dietetics assessment Comments Date Sign Social work assessment Comments Date Sign
Stage 2 Meeting with patient/ relatives and conservative management team Discuss outcomes from assessment and clarify intent to withdraw from dialysis Discuss potentially reversible factors that may be influencing patient decision making (ie treatable symptoms, medication effects, psychologic factors) Stage 3 Jointly agreed Palliative Care Plan 1. Preferred place of care determined Home Hospice (discuss case with consultant in palliative care) Hospital 2. Advance directives formulated 3. Crisis planning 4. Commenced on Liverpool Care Pathway for the dying patient (Renal) Symptom control plan established
Stage 4 Communication 1. Educational material made available to a. Patients/ relatives b. General practitioner 2. Contact details of conservative care team to be made available to patients/ designated family contact/ general practitioner 3. All patients withdrawing from dialysis support fulfill the Gold Standards Framework (GSF) criteria. Communication of the renal management decision and any pertinent advance plans are to be made available to a. Patient (patient held information) b. General practitioner c. Out of hours primary care services
End of life care
Decision to withdraw usually follows months of increasing suffering as co morbid conditions progress despite dialysis ESRD patients approaching EOL often dying due to co morbid illnesses HD withdrawal certain knowledge of death in a defined time
Dialysis cessation Median time to death 8 9 days Shorter if non renal cause for withdrawal Deaths better if occurred at home Pain (42%) and agitation (30%) common
Local plans SHSCT register Conservatively managed patients Patients wishing to withdraw Patients progressing poorly on HD (patient informed or not?) Withdrawal from dialysis protocol Monthly review by multidisciplinary team (lead clinician, renal specialist nurse/lead dialysis nurse, renal social worker..)