Renal Supportive Care

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Renal Supportive Care

• Karen Jenkins Consultant Nurse
• Julie Daniels Renal Social Worker
• Department of Renal Medicine
• East Kent Hospitals University NHS Trust

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Aims of Session

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

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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

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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

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Definition of 5 Stages of CKDNICE Sept 2008
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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

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Renal Palliative Options
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Withdrawal from Treatment

• Dialysis
• Transplantation

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Impact of Dialysis
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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

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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

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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 thats
  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

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Withdrawing from treatment

• Patient numbers 2006 8 200719 200820
• Average survival 1- 30 days from stopping
  dialysis
• Influencing factors age, co-morbidity, quality
  of life, ADL, sustainability of dialysis

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Average Age
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Time Frame in service 2004-2005
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Place of death withdrawal from treatment
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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

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Analgesia in Advanced CKD
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Is stopping dialysis a form of suicide or a
choice to cease medical intervention?
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Supportive Care

• Not having dialysis

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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

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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

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Factors affecting decision making

• Religious beliefs
• Cultural background
• Personal relationships (single/married/partnership
  s)
• Recent bereavement
• Family circumstances close/estranged
• Fear of the unknown
• Age
• Distance to travel
• QOL
• Co-morbidities

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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 Guys,
  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 lt 15 ml/min
  and 75 or over
• Exclusions eGFR lt 15 ml/min at presentation
  /advanced incurable solid organ malignancy

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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

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Supportive Care Numbers

• Patient numbers 200685 2007124 2008150
• 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

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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

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Place of death supportive care
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Symptom Control

• Pain
• Dyspnoea
• Pruritis
• Nausea
• Restless legs
• Agitation
• Fluid overload

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Causes of pain

• Often from co-morbid conditions
• Ischaemic pain from peripheral vascular disease
• Neuropathic pain from peripheral neuropathy
• Bone pain from e.g. osteoporosis or renal bone
  disease
• Musculo-skeletal pain
• Angina
• Murtagh et al Journal of Pain and PalliativeCare
  Pharmacotherapy, 2007 21 (2) 5-16
• Davison 2003

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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

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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

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0
20
40
60
80
100
Fatigue
Pruritus
Drowsiness
Dyspnoea
Poor concentration
Pain
Loss of appetite
Level of distress
Swelling legs
Dry mouth
severe
Constipation
quite a lot
Nausea
Cough
somewhat
Poor sleep
little
present but no distress
missing data
Prevalence and severity of symptoms in month
before death (n 49)
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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

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Quality of Life
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Service Evaluation

• Audit of Practice 2005

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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

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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)

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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

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Outcome Data
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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

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Summary

• Education patients/carers/HCPs
• Support patients 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

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Any Questions