Renal Supportive Care

Karen Jenkins Consultant Nurse

Julie Daniels Renal Social Worker

Department of Renal MedicineEast Kent Hospitals University NHS Trust

Aims of Session

Overview of Renal Palliative care Patient pathways Symptom control Research/Statistics Renal LCP Service provision

Geography of Renal services Provides regional renal services across East & West Kent – covering 1.25 million

population Canterbury 39 inpatient beds mixture of use Haemodialysis (250 – 2007) 329 current - total capacity by Sept 2009 430 patients

Canterbury centre unit Satellite Units Margate Medway Maidstone Dover Ashford

Home therapies Peritoneal dialysis 71 Home haemodialysis 6

Transplantation 240 Conservative management – current active 98 Patients approaching ESRD circa 350

The Renal NSF: Part 2

Quality requirement 1: Prevention and early detection of chronic kidney disease (CKD)

Quality requirement 2: Minimising the progression and consequences of CKD

Quality requirement 3: Acute renal failure

Quality requirement 4: End of life care

Definition of 5 Stages of CKDNICE Sept 2008

Stage Description GFR (ml/min/1.73m²)

Action

At Increased risk

90 (with CKD

risk factors)

Screening CKD risk reduction

1 Kidney damage Normal or increased GFR

> 90

Diagnosis, treat co-morbid factors

2 Kidney damage mild decrease GFR

60-89

Estimate progression

3 A 3 B

Moderate decrease GFR

45-59 30-44

Evaluate & treat complications

4 Severe decrease GFR

15 -29

Prepare for RRT

5

Kidney Failure

< 15

RRT/Non RRT

The Need for Renal Palliative Care

People with CKD often have complex medical problems

Not all patients are suitable for dialysis/can tolerate dialysis

Patients choose not to have dialysis Dialysis is a life saving treatment, but can

sometimes be harrowing and futile Coping with the dependency of a permanent

treatment Importance of quality of life

Renal Palliative Options

Consultant Referrals

Withdrawal from treatment Dialysis

Failing Transplant

Not having treatmentSupportive Care/

Conservative Management

Withdrawal from Treatment

Dialysis

Transplantation

Impact of Dialysis

Decision Making

The patient has decided to cease ‘active’ treatment

Identifying issues which have influenced patients decision making

Acute medical episode may have determined future of permanent treatment

Inability to sustain dialysis – medical decision Quality of life

Mental Capacity Act 2007

Starts from the assumption that the person making the decision has capacity

Do they have all relevant information to make that decision

Are the HCP the best people to explain key issues around withdrawal

Is there a better day/time to speak about withdrawal e.g straight after dialysis or 24 hrs later

The 5 principles of the MCA

Plan of Care

Include all those involved in patients care needs Give realistic choice i.e. fit for transfer home/hospice Enable patients to stay on renal ward if that’s their wish

and support relatives/carers Assess care needs quickly to avoid delay in community

support if going home is an option Renal LCP in place DNAR in place GP involvement/DN /Hospice/Palliative Register

Withdrawing from treatment

Patient numbers: 2006: 8; 2007:19; 2008:20

Average survival 1- 30 days from stopping dialysis

Influencing factors: age, co-morbidity, quality of life, ADL, sustainability of dialysis

Average Age

HD Withdrawal PD Withdrawal

Mean 76 yrs ± 6

Median 76yrs

Range 62-89yrs

Mean 70 yrs ± 10

Median70yrs

Range 56-81yrs

Time Frame in service 2004-2005

HD Withdrawal PD Withdrawal

N= 43

Mean 12 days ±14

Median 7 days

Range 1-30 days

N=6

Mean 9 days ± 12

Median 5 days

Range 1-33 days

Place of death withdrawal from treatment

0

2

4

6

8

10

12

AH CH Hospice Home

Pa

tie

nt

Nu

mb

er

Location

Place of Death

2006

2007

2008

Symptom Control Stop most renal drugs Nausea/Vomiting :

- Haloperidol 0.5 -2.0mg daily, - Cyclizine 50mg tds - Metoclopramide 5-10mg tds

Agitation : Midazolam 50% of normal dose 2.5-5mg stat sc & then infusion 5-10mg over 24hrs via syringe driver

Secretions : Glycopyrronium 200-400mcg stat, 600-1200mcg/24hrs

Itching : Chlorpheniramine 4mg tds/qds; Aqueous cream with menthol

Analgesia in Advanced CKDDrug eGFR <10mls/min

Paracetamol Normal dose

NSAIDS Normal dose

Combined paracetamol 500mg &/or 30mg codeine/dihydrocodeine

4 tablets in 24hrs

Tramadol Avoid if possible but may use 50mg 12hrly

Morphine 1.25-2.5mg 6-8hrly

Hydromorph 1.3mg every 8hrs

Methadone 50% of normal dose

Fentanyl 50% of normal dose

Alfentanil Normal dose

Is stopping dialysis a form of suicide or a choice to cease

medical intervention?

Supportive Care

Not having dialysis

Considering the Options

Patients attend or have one to one education sessions to discuss treatment options: haemodialysis/peritoneal dialysis/ transplantation/conservative management

Conservative management viewed as an equal treatment option – recent in UK, not an option in the USA, just starting to be recognised in Europe

Thought Process

Opting not to have dialysis or to withdraw not an easy decision Implications need to be shared in a counselling process Many reasons and influencing factors why patients make this

choice Implications of decision need to be understood by both

patients and professionals No dialysis is NOT a ‘no treatment’ option Services needed to support these patients

Factors affecting decision making

Religious beliefsCultural backgroundPersonal relationships (single/married/partnerships)

Recent bereavementFamily circumstances – close/estrangedFear of the unknownAgeDistance to travelQOLCo-morbidities

Dialysis or Not?Survival in elderly patients with stage 5 CKD

Murtagh et al (2005) carried out a study to compare survival in elderly CKD Stage 5 patients managed with and without dialysis, and to identify which of several key variables might be associated with survival

Retrospective study across 4 Renal units – Guy’s, Kings, St Helier, St Georges, of patients aged 75yr+ known to each unit

Data collected – demographic, co-morbidity (using Davies co-morbidity score –malignancy, IHD, PVD, LV dysfunction, DM, Systemic collagen vascular disease

Inclusions all patients reaching eGFR < 15 ml/min and 75 or over

Exclusions eGFR < 15 ml/min at presentation /advanced incurable solid organ malignancy

F E Murtagh, N Sheerin J Marsh, P Donohoe et al ASN Abstract Nov 2005

Study Conclusions Patients with ESRD over 75yrs who currently

have dialysis have substantial survival advantage over those not dialysed

But much of this survival advantage is lost in those with high co-morbidity (Davies co-morbidity score)

Comment – consider co-morbidities when discussing dialysis

Supportive Care Numbers

Patient numbers: 2006:85; 2007:124; 2008:150 Mean age 81yrs ± 8, median 83yrs, Range 47-

98yrs Average time in service 2004-2007 206 days ±

202 Median 240 days, Range 1-805 days Mean eGFR 13ml/min/1.73m²

Plan of Care

Where seen – clinic/home Assessment of all care needs by all relevant HCP Joint domiciliary visits Collaborative working DN/Community matron/GP/

Hospice Acceptance of family and carers Time Frame Renal LCP Sept 2008 www.mpcil.org.uk DNAR

Place of death supportive care

05

1015202530354045

AH CH Hospice Home

Pa

tie

nt

nu

mb

er

Location

Place of death

2006

2007

2008

Symptom Control

Pain Dyspnoea Pruritis Nausea Restless legs Agitation Fluid overload

Causes of pain

Often from co-morbid conditions: Ischaemic pain from peripheral vascular

diseaseNeuropathic pain from peripheral neuropathyBone pain from e.g. osteoporosis or renal bone

diseaseMusculo-skeletal painAngina Murtagh et al Journal of Pain and PalliativeCare Pharmacotherapy, 2007: 21 (2); 5-16

Davison 2003

Fluid Overload

Increase diuretics - Frusemide, Bumetanide, Metolazone

Avoid Spironolactone - if have heart failure discuss with HF team

Tissue viability assessment – thin skin, weeping

Pulmonary oedema

Other Symptoms

Nausea/Vomiting : - Haloperidol 0.5 -2.0mg daily, - Cyclizine 50mg tds - Metoclopramide 5-10mg tds

Agitation : Midazolam 50% of normal dose 2.5-5mg stat sc & then infusion 5-10mg over 24hrs via syringe driver

Secretions : Glycopyrronium 200-400mcg stat, 600-1200mcg/24hrs

Itching : Chlorpheniramine 4mg tds/qds Hiccups – Chlorpromazine/Haloperidol

0% 20% 40% 60% 80% 100%

FatiguePruritus

DrowsinessDyspnoea

Poor concentrationPain

Loss of appetiteSwelling legs

Dry mouthConstipation

NauseaCough

Poor sleep

severe

quite a lot

somewhat

little

present but no distress

missing data Prevalence and severity of symptoms in month before death (n = 49)

Level of distress

Symptom prevalence

More than 1 in 3 conservatively-managed patients will have:poor mobility, fatigue/weakness, pain, pruritis,

poor appetite, dyspnoea, difficulty sleeping, drowsiness, constipation, feeling anxious, restless legs

End of life pain, agitation, myoclonus, dyspnoea, nausea

Quality of Life

Service Evaluation

Audit of Practice 2005

Service evaluation 2005

18 month period Demographics Primary renal diagnosis and co-morbidities Medications Haemoglobin (Hb) Glomerular filtration rate (eGFR) Decision making Hospice involvement Patient survey

Questionnaire results information

100% of patients stated that the information received was relevant when deciding to have supportive care

87% Information assisted in decision making Information received via:

• 60% clinic• 20% Home• 13% Education sessions• 7% Other (internet)

Support

80 % Choice of where they were seen 87% Supported by renal staff 27% Offered hospice support 53% Contact renal team 47% Contact Primary Care/Hospice team 67% Social Care Support 50% believed they did not have any dietary

restrictions

Outcome Data

Withdrawal

(18 pts)

CMT Initial

(56 pts)

CMT Final

(56 pts)

Age 72.8 yrs 81yrs 82yrs

Gender 10:8 32:24

eGFR - 11mls/min -

Hb - 10.6g/dl 11.2g/dl

Meds - 8 pp (0-17) 6 pp (2-19)

Place of Death 6:4:8 - 6:13:8

Study summary

Hb levels maintained Appropriate reductions made in medications Dietary restrictions not enforced Majority patients died in home or hospice

environment Feedback from patients positive Effective communication network

Summary

Education – patients/carers/HCP’s Support patient’s wishes Avoid acute admission/ choice in place of death End of Life pathway for patients with CKD Symptom control Collaborative working with allied healthcare

providers GP – palliative register Darzi report influence on service provision

Any Questions