End of life care

1. End of life care Dr Maelie Swanwick Consultant in Palliative Medicine Derby Hospitals NHS Foundation Trust

2. Principles of palliative care • Regards death as a normal process • Neither hastening nor postponing death • Provides relief from pain and other symptoms • Integrates psychological and spiritual aspects of pain • Offers a support system for the patient and family during the illness and in the family’s bereavement

3. How do you recognise a palliative patient ? • Disease trajectories less predictable with chronic organ failure compared with cancer • Clinical indicators • General eg weight loss, physical decline, reduced performance status seen in all • Specific • The surprise question • Patient choice or need

4. How do we recognise the dying patient • Indicators of irreversible decline, gradual but progressive • Profound weakness • Drowsy and disorientated • Diminished oral intake, difficulty taking medication • Poor concentration • Skin colour and temperature changes

5. Why is it important to recognise the palliative patient • To allow the doctor and patient to make appropriate decisions • Treatment • Place of death • Most of the final year of life is spent at home yet most people are admitted to hospital to die • Most dying people would prefer to die at home, around 25% do so • More than 50% cancer patients die in hospital

6. Principles of management • Relieve physical symptoms promptly • Consider multifactorial nature of symptoms • Remember the psychosocial/spiritual • Avoid unnecessary medical intrusion • Stop unnecessary drugs • Continuity of care • Anticipate problems

7. Common symptoms at the end of life • Symptom burden in the last year of life remarkably similar despite diagnosis • Fatigue • Pain • Breathlessness • Nausea and vomiting • Principles of palliative care are not restricted to cancer patients nor to the last few days of life

8. Types of pain • Visceral Dull, aching, diffuse, continuous, colicky eg liver capsular pain, bowel spasm • Bone Localised, bone tenderness eg bony metastases, fractures, arthritis • Nerve Burning, prickling, shooting Allodynia, hyperalgesia, hyperpathia eg nerve root infiltration, post-herpetic neuralgia • Myofascial Localised muscle pain

10. Types of pain • Visceral Dull, aching, diffuse, continuous, colicky eg liver capsular pain, bowel spasm • Bone Localised, bone tenderness eg bony metastases, fractures, arthritis • Nerve Burning, prickling, shooting Allodynia, hyperalgesia, hyperpathia eg nerve root infiltration, post-herpetic neuralgia • Myofascial Localised muscle pain

12. Types of pain • Visceral Dull, aching, diffuse, continuous, colicky eg liver capsular pain, bowel spasm • Bone Localised, bone tenderness eg bony metastases, fractures, arthritis • Nerve Burning, prickling, shooting Allodynia, hyperalgesia, hyperpathia eg nerve root infiltration, post-herpetic neuralgia • Myofascial Localised muscle pain

14. Analgesia • Consider the cause • WHO analgesic ladder • Step 1 Paracetamol +/- NSAIDS +/- adjuvant • Step 2 Weak Opioids + Step 1 • Step 3 Strong Opioids + Step 1 • Adjuvant drugs • Antidepressants – amitriptyline • Anticonvulsants – carbamazepine, gabapentin • Antiarrhythics – mexilitine • Dexamethasone

15. Morphine • The opioid of choice in the UK • Pre-empt common S/Es including constipation, sedation, N&V and visual hallucinations • Renally excreted so start with low dose in renal impairment or the elderly • Give preferably PO but can be given SC • Long and short-acting preparations • Adequate breakthrough analgesia

16. Morphine conversion • 3mg PO morphine = 1mg sc diamorphine • Eg 30mg MST bd for pain control In 24 hours = 60mg morphine. Equivalent dose of sc diamorphine 60/3 = 20mg diamorphine

17. Pain problems at home • Pain may worsen • New pains may emerge • Route of administration may not be effective • Adequate supplies of breakthrough analgesia • Alternative analgesia

18. Nausea & vomiting • Tailor anti-emetic to presumed cause • Clear instructions on administration • Appropriate route and formulation • 2nd line anti-emetic

19. Breathlessness • Very common problem • Causes varied, both malignant and non-malignant • Holistic management • drug measures • non-drug measures

20. “Death rattle” • Retained secretions in the upper airway • Distressing for carers to hear, usually not bothering patient • Postural drainage • “Drying” agents • Anticholinergic drugs

21. Terminal agitation • Up to 75% patients develop delirium or agitation during the last few days of life • Is it reversible, treat cause if possible • Reassurance to family

22. Drugs for sc use

23. Dosage guidelines

24. 64 yr old man with recurrent bowel cancer • Complained of: • Lower back and left buttock pain • Pain radiates down left leg with altered sensation • Intermittent abdominal colicky pain with constipation and vomiting • On examination: • Prolapsed stoma with empty stoma bag • Distended tympanic abdomen • Painful non-erythematous swelling of left buttock

26. Problems • Pain • From pelvic tumour invading ilium • Neuropathic pain down left leg from pelvic tumour invading sacral plexus • Bowel colic from intermittent partial bowel obstruction • Body image • Large herniated stoma and buttock swelling • Intermittent partial bowel obstruction • Nausea and vomiting • Constipation

27. Treatment • Pain • Radiotherapy tried initially • Oral morphine titrated upwards for tumour pain • Amitriptyline initially caused too many S/E, so tried carbamazepine • Bowel obstruction • Stool softeners and avoided stimulant laxatives or prokinetic antiemetics • Dexamethasone to relieve partial obstruction • Cyclizine for nausea • Body image • Multidisciplinary approach with stoma nurses, DN’s & Macmillan nurses providing practical and emotional support

28. Progress • Initially some improvement in pain but not fully pain controlled • S/E’s limited opiate dose, switch to oxycontin had a similar effect • NSAID added • Increasing weakness • Frequent vomits of partially digested food, nil from stoma • Difficulty taking anything orally • Became drowsy, confused with myoclonic jerks

29. Renal impairment secondary to the reduced intake and vomiting led to opiate toxicity • Started on the LCP • Oral medication stopped • Syringe driver was used with a reduced dose of opiate • Hyoscine butylbromide and cyclizine added to reduce the vomits • Additional sc opiate, midazolam, buscopan prescribed and left at the house for the DN’s to administer • Died at home

30. Out of hours palliative care – the C’s • Communicate • Co-ordinate • Control symptoms • Continuity • Carer support • Care in the dying phase • Continued learning

31. Out of hours palliative care • Anticipate problems • Adequate supplies of medication • Advice to patient and carers • Are they in the picture ? • What might they expect • What they can do • Who to call in an emergency, what to do in an emergency

32. Starting a syringe driver at home • FP10 – quantity of diamorphine in 15ml WFI “via syringe driver over 24 hrs” • Number of syringes to be prescribed • Total quantity of diamorphine • Syringes ordered from Derby City Hospital pharmacy • Taxied to the patients home

33. 84yr old man with end-stage heart failure • Lives with elderly wife • Frequent admissions after waking in the night very dyspnoeic • Admitted to MAU, transferred to cardiology ward • Only home for 1 - 5 days before readmission

34. Events leading to admission.. • Slips off pillows • Increasing breathlessness panics him and wife • “Nothing to try” at home to ease dyspnoea • Wife calls NHS Direct, ambulance sent as “cardiac patient” • Treated as “acute heart failure” by paramedics and medical team on MAU • Reverts back to usual meds on cardiol ward

35. What may help.. • Conversation with patient about end of life issues • Low dose oramorph 1-2mg qds for dyspnoea • Recliner chair to keep him higher at night • Home oxygen to try initially if wakes, with instructions to try a dose of oramorph • GP spoken to directly, helpfully informed out of hours Doctors service • Community support from GP, DN and Macmillan nurse

36. Wife and son had written instructions regarding treatment plan during the night • Telephone numbers to contact clearly written and left by the phone • Regular contact from the DN, GP and Macmillan nurse to support her

37. And did it help.. • Remained at home for 8 weeks before being readmitted to a palliative care bed where he died with his family around him.