Regional Renal Training Palliative and End of Life Care Dr Clare Kendall North Bristol NHS Trust
Advanced Kidney Disease Dialysis/Transplant Conservative Management Deteriorating despite dialysis/failing transplant not returning to dialysis Recognition of End of Life Care Needs Kidney End of Life Care Last Days of Life
La Traviata final scene DOCTOR (feeling her pulse) Yes. How do you feel? VIOLETTA My body suffers, but my soul is in peace. Last evening a priest came to comfort me. Religion is a great consolation to the suffering. DOCTOR And during the night? VIOLETTA I slept quite peacefully. DOCTOR Courage, then. Your convalescence is not far off. VIOLETTA Oh, the little white lie is permissible in a doctor. DOCTOR (pressing her hand) Goodbye - I'll come back later. VIOLETTA Don't forget me. ANNINA (in a low voice, as she shows the doctor out) How is she, sir? DOCTOR She has only a few hours to live
Case History Young patient in 40s. End stage medical condition affecting lungs, kidneys. Complex social history. Home and family are not nearby. Recent dispute with partner. No money. Little social support. Rapid deterioration past few weeks. Symptomatic with SOB, haemoptysis, pain, fear, psychological distress. Unhappy in current place of care and desperately wants to be nearer family.
What are her palliative and end of life needs?
Holistic Assessment Information Needs Symptom Control Ask about all areas Psycho-spiritual Needs Social and Practical Needs
Information needs Check her understanding Use that to shape discussion about prognosis Establish her concerns Don't drop the DNACPR bombshell! Make it part of conversation about whole situation. Don't make families feel burden of decision-it's our decision in conjunction with them When might we start thinking about advance care planning?
Symptom Burden What is the symptom burden of people with ESRD? Do we ask them about their symptoms? What do they report?
Symptom burden on dialysis Fatigue 71% Itch 55% Anorexia 49% Pain 48% Sleep disturbance 43% Anxiety 38% Breathlessness 37% Nausea 33% Restless legs 30% Depression 28% Murtagh et al Adv Chr Kidney dis, 14 (1): 82-99
Symptom Burden in CKD 5 managed Lack of energy 86% Itch 84% Drowsiness 82% Dyspnoea 80% Poor concentration 76% Pain 73% Anorexia 71% Oedema 71% Dry mouth 69% Constipation 65% conservatively Nausea 59% Murtagh et al JPSM 2010
Symptom burden in last 24 hours after withdrawal from dialysis Pain 42% Agitation 30% Myoclonus 28% Breathlessness 25% Nausea 12% Cohen et al Am J Kidney Dis, 36(1): 140-4
How Are You?
Pain Any pain management must be with information gathered from detailed pain assessment. What are the common causes of pain? Primary renal: Eg Polycystic disease, Renal Bone Disease Calciphylaxis Pain secondary to treatment: Eg Steal syndrome, cramps, interdialytic headache Symptoms often derive from comorbidities: Eg Diabetic neuropathy, Peripheral vascular disease/ihd, Cancer ESRD constrains use of medication
Pain-pills, patches and pumps
Renal Analgesic Ladder STEP 3 Severe pain PAIN PERSISTS STEP 2 Moderate Pain PAIN PERSISTS STEP 1 Mild Pain
Renal Analgesic Ladder STEP 3 Severe pain STEP 2 Moderate Pain HYDROMOPRHONE/FENTANYL/ BUPRENORPHINE/ALFENTANIL PAIN PERSISTS TRAMADOL/BUPRENORPHINE PAIN PERSISTS STEP 1 Mild Pain PARACETAMOL &/OR NSAID
Step 1 Paracetamol 1 g qds?nsaids Change in dialysate Management of comorbidities
Step 2 Tramadol is least problematic but use with caution Active M1 metabolite Conservative egfr 15-30: Commence 50mg bd (Max 100mg bd) Conservative egfr <15 or Dialysis: 50mg bd maximum DO NOT use Codeine in this group
Step 3 Hydromorphone: Titrate slow and monitor closely Oxycodone: Immediate release reasonably safe if monitored carefully Fentanyl: No active metabolites. Not dialysed Buprenorphine: Has active metabolites. Monitor Methadone: No active metabolites but specialist use
Role of Transdermal Route Transdermal route Learning Points Buprenorphine Fentanyl Indications for use Limitations What to do at End of Life
Role of Transdermal Route Transdermal route Learning Points Buprenorphine 10mcg/hr patch equivalent to 10-20mg morphine/24 hours Fentanyl 25 mcg/hr patch equivalent to 60-90mg morphine/24 hours Indications for use Stable pain, oral route not available, compliance Limitations Slow to reach steady state, depot left in skin so slow to wear off, not flexible if needing to change dose What to do at End of Life Leave patch on and top up using syringe pump
Renal adjuvants Gabapentin 100-200mg post dialysis Amitriptyline 10mg nocte and titrate slowly Clonazepam250-500 micrograms nocte If using opioids remember laxatives and antiemetics
Other symptoms SYMPTOM Shortness of breath Itch Low mood, anxiety, depression Fatigue Restless legs MANAGEMENT Treat heart failure, opioids, benzodiazepines Emollients for dry skin, Gabapentin 100mg post HD and titrate Antidepressants, benzodiazepines Anaemia Keep Hb11-12, Epo Gabapentin, Pregabalin, Clonazepam Nausea Sleep disturbance Constipation Identify cause-delayed gastric emptying, uraemia, medications Metoclopramide, Haloperidol, Levomepromazine Try and identify cause Prescribe laxatives Symptom management in ESRD Renal Supportive Care Symposium Sydney August 11 2017. Frank Brennan, Palliative Care Consultant, Department of Nephrology, St George Hospital Sydney
End of life care Where? What needs? Timescale? Plan care in hospital to reflect destination What to expect-explain to patient and family Timing of last dialysis to help achieve goal
Mrs Bloggs 83 yo ESRD Withdrawal from dialysis Normally takes Hydromorphone 4mg bd for pain Becoming more sleepy and can t take tablets What would you do?
Mrs Bloggs 83 yo ESRD Withdrawal from dialysis Normally takes Hydromorphone 4mg bd for pain equivalent to 60mg Morphine orally /24 hours Becoming more sleepy and can t take tablets Rationalise drug chart What would you do?-prescribe syringe pump with 400-600 micrograms Fentanyl/24 hours Prescribe anticipatory medication for end of life care
Next day review.. More agitated Pain reasonably well controlled but 3 doses of prn What would you do?
Next day review.. More agitated Pain reasonably well controlled but 3 doses of prn What would you do? Increase Fentanyl to account for extra doses Add Midazolam 10mg over 24 hours Consider need for Levomepromazine for agitation Check whether she is fluid overloaded-if so use Hyoscine Butylbromide
If planning EoL discharge, Oversee process Check, check, check again making it happen It won't happen otherwise-oversee detail don't just write continue discharge planning! Call GP and handover in person including what has been said to whom Liaise with local hospice but don't promise to patient or family without discussion with palliative care team or hospice Remember some patients feel safe where they know team