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

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

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

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

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

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

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

Types of pain Visceral Bone Nerve Myofascial 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

Types of pain Visceral Bone Nerve Myofascial 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

Types of pain Visceral Bone Nerve Myofascial 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

Analgesia Consider the cause WHO analgesic ladder Adjuvant drugs 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

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

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

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

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

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

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

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

Drugs for sc use DRUG NAME Licensed Acceptable Diamorphine Y Cyclizine Metoclopramide Levomepromazine Haloperidol Midazolam

Dosage guidelines DRUG Dose range Comment Diamorphine Cyclizine 5mg + Pain Cyclizine 100 – 150mg Nausea & vomiting Haloperidol 2.5 – 5mg 5 – 10mg Restlessness or confusion Hyoscine butylbromide 20 – 60mg Secretions Levomepromazine 12.5- 50mg Low dose – antiemesis Higher doses for sedation Midazolam 10 – 60mg Anxiolytic, sedation

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

Problems Pain Body image Intermittent partial bowel obstruction 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

Treatment Pain Bowel obstruction Body image 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

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

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

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

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

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

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

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

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

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

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.