PRESCRIBING IN THE LAST DAYS OF LIFE Peter Nightingale Macmillan GP

The Seven C’s Communication Palliative Care Register/MDT meetings Co-ordination Key person Control of Symptoms Assessment, Treatment and Patient Centred care Continuity Handover to out-of-hours/protocol. Information to patients/carers Continued Learning Practice-based learning/reflection on experiences. Carer Support Practical, Emotional, Bereavement Care of the Dying Liverpool Integrated care pathway (Dying Phase)

Diagnosing the Terminal Phase BEDBOUND ONLY ABLE TO TAKE SIPS OF FLUID SEMI COMATOSE NO LONGER ABLE TO TAKE ORAL MEDICATION 2 out of four required for Liverpool Care Pathway

Last Days Of Life- Anticipating and planning for common problems at home  Loss of mobility and ability to transfer safely Loss of ability to drink Loss of ability to eat Pain Vomiting Dyspnoea Excess secretions Delerium and agitation

Loss of mobility Unable to transfer safely Generally safer and more manageable to nurse in bed Consider loan of hospital bed/monkey pole/cot sides/commode/urine bottles Assess for pressure area care and implement appropriate strategy Indwelling urinary catheter/sheath for men if more acceptable if incontinent/unable to transfer to commode Bowel care

Methylnaltrexone (relistor) SC methylnaltrexone is approved for use in patients with 'advanced illness' suffering from opioid-induced constipation despite usual laxative therapy. Constipation is common in advanced disease, even in patients not taking opioids. Thus, so-called 'opioid-induced constipation' is often multifactorial in origin; and methylnaltrexone will normally augment laxatives rather than replace them. It is important that laxative therapy is optimized before using methylnaltrexone. About 1/2 patients defaecate within 4h of a dose without impairment of analgesia or the development of withdrawal symptoms. Common undesirable effects include abdominal pain, diarrhoea, flatulence, and nausea. Initially give a single dose on alternate days. If there is no response, a second dose can be given after 24h, but not more often.

Loss of ability to drink Prepare family and patient for this happening Explain it is a natural process and may aid comfort by reducing secretions/gastric secretions and chance of vomiting/urine output Encourage sips/mouth care In the occasional situation, if still distressed by thirst consider S/C fluids (N.saline 1l over 12h via a butterfly into anterior abdominal wall or thigh)

What can we conclude? Parenteral hydration in palliative care context: probably improves mucous membrane hydration status sedation and ?myoclonus probably worsens peripheral oedema, ascites and pleural effusions is unlikely to affect delirium and hallucinations agitation bronchial secretions fatigue can produce a significant placebo effect

Loss of ability to eat Prepare family and patient for this happening Explain it is a natural process Forcing food may create discomfort if too weak to swallow/digest

Pain Morphine or Diamorphine SC prn in proportion to overall opioid requirement Consider leaving pre drawn-up syringes :possibly leave an indwelling butterfly needle SC OTFC Fentanyl increasingly considered

Vomiting Levomepromazine is a useful broadspectrum antiemetic for the end of life. 6.25mg SC Cyclizine 50mg tds SC or other antiemetic targeted at likely cause

Dyspnoea Common and frightening Morphine/Diamorphine preferably SC (or sublingual) titrated up as for pain. Midazolam 2-10mg S.C. or sublingual prn or 5-30mg SC/24h for breathlessness/fear or Diazepam

Excess respiratory secretions (note Cochrane rev 2008) Positioning important Antimuscarinics Glycopyrronium Hyoscine hydrobromide 0.4mg sublingual or SC 4h prn or Hyoscine butylbromide 20mg SC

Delirium and agitation Common at the end of life· Distressing and frightening for everyone involved Haloperidol 5-30mg/24h/sc and/or midazolam5-60mg/24h(if agitation only)

Changing breathing pattern Explanation to family "He may appear to stop breathing for a time, then draw another breath"

The Pathway in Today’s Health Care System There must be continuous improvement in the delivery of health care and the care of the dying patients must improve to the level of the best (DOH 1998, NHS Cancer Plan 2000) Patients want to die in the place of their choice and be assured that their carers will be supported throughout their illness and in bereavement (Commission for health improvement/Audit Commission 2002) There is a need to describe and transfer best practice in Hospice care into hospital and other care settings (Bonick 2004) How has it arisen? Well, it was recognised in 2000 in the NHS cancer plan that care of the dying pt needed to improve nationally and the audit commission identified that patients want to die at home and they want to feel assured that their carers will be supported throughout their illness and in bereavement hence the preferred place of care document evolved and there has been a general acceptance that the standards of care for the dying in hospices should be adopted in other care settings.

What Is The LCP and How Does It Work? ICP is a multidisciplinary document which provides a template for managing patient centred care, it acts as a flow chart for the care being given It Describes Care It Tracks Care It Monitors Care It Evaluates Care The idea of an integrated care pathway originally came from American engineering industry and was later adopted as a health care initiative. An ICP is a template of managing care, it acts as a flow chart for the care being given. It describes care, it tracks care, it monitors and evaluates care

3 Sections To The LCP Initial assessment and care Ongoing assessment and care Care after death

Goals Of Patient Care Encompassed By The LCP Physical Psychological Religious/Spiritual Social

GP’s Involvement Diagnose that the patient is dying Discontinue oral medication/syringe driver if required Prescribe 4 core drugs Liaise with nursing staff, relatives and out of hours/put the pt on pathway Sign documentation So what are the potential pitfalls? Well, I think to try and roll this out in the mass would be a recipe for disaster I do not think many would take this on board however, if it is addressed in small groups and well supported and evaluated and found to work it won’t be long before word gets around that this is a good way of working. In hospital I think resistance may come as a result of nursing rituals. With the notion that we’ve always done it this way, it’s ok why should we change now which I think that is why it is important to identify key links with staff who are enthusiastic about it. In the community I think the resitance will come from the Gp’s in terms of why should they adopt this when they have no financial incentives and they also have not taken on the GSF. We need to promote the quality of service they will be providing and highlight the benefits of the LCP in terms of it’s evaluation and how it can improve practice and pt care. (review medication)

What Are The Benefits of Using The Pathway? It organises the process of caring It is multisectoral (community/hospital) Multi-professional/aids communication It can influence ethical decision making Incorporates guidelines, evidence based practice and clinical effectiveness What are the benefits? Well it organises the process of caring. It can be adapted to any setting including, residential and nursing homes. It can be used by many professionals. It guides practice and is evidence based. It integrates education and practice. It is outcome focused in that we know that it is often difficult to prove what we do is right the pathway gives us the capacity to do that. It replaces and reduces documentation and is a legal record which can be written or used electronically. And the great advantage of variances allows us to record why care has not been carried out.

Benefits Outcome focused (clinical supervision) Replaces and reduces documentation Legal record (written or electronic) Variances (allow staff to justify non-actions) Flexibility (pts can come off the pathway) Quality of care In hospital we need to identify key areas, where people die in hospital ie, unlikely to use in opthalmic ward or outpatients We need to emphasis that it can be used on all dying pts not just those dying with cancer. And then I think we need to ask the staff what they feel about how pts die in their area and listen to their Scenarios and respect their perspectives. We need to identify nurses who are keen and enthusiastic about it, then provide them with the education programme and introduce the document. Set up a pilot study on two or three of the most appropriate wards. Evaluate how it’s gone and listen to staff and how they’ve found it and then repeat the process on other wards.

PLANNING NO LONGER ABLE TO TAKE ORAL MEDICATIONS:- Discontinue unnecessary drugs Review medication required Plan for what medication may be required

Discontinuing Drugs Stop Non Essentials e.g. statins Probably continue diuretics –furosemide can be given subcutaneously Review steroids

Steroids in Palliative Care Used to improve quality of life after risk/benefit assessment for:- 16mg Dexamethasone in emergencies 12mg for inflammation in brain, liver or after chemotherapy 4mg to temporarily help appetite But taper down quickly because of:-

Side effects of steroids Hyperglycaemia Thrush GI bleeding Agitation and restlessness Muscle loss Bed sores Bacterial infection

P A I N Is patient already taking oral morphine? Yes No Convert to 24hr s/c infusion of DIAMORPHINE For conversion divide the total daily dose of MORPHINE by 3 ( eg MST 90mg bd orally = DIAMORPHINE 60mg via syringe driver) Make available subcutaneous DIAMORPHINE dose PRN for breakthrough pain PRN dose equals total daily dose divided by 6 (eg if DIAMORPHINE 60mg subcutaneous in syringe driver PRN dose equals 10mg subcutaneously) Make available DIAMORPHINE 2.5mg – 5mg prn s/c After 24 hours review medication. If 2 or more doses required PRN then consider a syringe driver. Starting dose would be the total requirements over the previous 24 hours. The PRN dose may then need to be recalculated If the patient is still in pain after 12 hours consider increasing the infusion by 30 – 50%

TERMINAL RESTLESSNESS & AGITATION Present Absent Make available MIDAZOLAM 2.5mg-5mg s/c 4hrly PRN Make available MIDAZOLAM 2.5 – 5mg s/c 4hrly PRN Review the medication after 24hrs If two or more PRN doses have been required then consider a syringe driver. Starting dose would be the dose required over the previous 24 hours Review the medication after 24hrs If two or more PRN doses have been required then consider a syringe driver Starting dose would be the dose required over the previous 24 hours Continue to give PRN dosage accordingly

RESPIRATORY TRACT SECRETIONS Present Absent Glucopyrronium 200 microgram SC stat then 1200mcg over 24 hours Glycopyrronium 200mcg s/c 8 hrly PRN should be made available Continue to give 200microgram PRN dosage 8 hourly If two or more doses of PRN Glycopyrronium required then commence syringe driver s/c over 24 hrs Increase total 24hr dose to 1.2 mg after 24 hours if symptoms persist

NAUSEA & VOMITING NB. If patient is already on an effective Absent Present Levomepromazine 6.25 s/c 8 hrly PRN Levomepromazine 6.25mg s/c 8rly PRN Review dosage after 24hrs. If 2 or more PRN doses required, then consider use of syringe driver. Starting dose 12.5-25mg s/c over 24 hours NB. If patient is already on an effective Antiemetic then switch to parental route and continue

Fentanyl at the end of Life Almost always better to leave the patch on in the last days of life and add in other drugs via a syringe driver if necessary, because:- Fentanyl reservoir active for up to 17hrs Opioid requirements vary greatly at this time of life, they can decrease due to renal failure or increase due to disease progression

THE SYRINGE DRIVER IN PALLIATIVE MEDICINE GRASEBY MS26 GREEN FRONTED RATE = mm/24 hours

INDICATIONS Dysphagia Swallowing difficulties mouth/throat lesions Intestinal obstruction Severe weakness Nausea & vomiting Poor alimentary absorption Semi comatose/comatose

ADVANTAGES Steady drug levels Avoids repeat injections Loaded once a day Does not limit mobility Can be used to control >1 symptom

DISADVANTAGES Seen as a panacea Irritation or swelling can limit absorption-Normal Saline is the preferred diluent unless cyclizine is being used

THE BOOST BUTTON There is no “lock out” period The dose of analgesia is less than the prn dose All drugs will be boosted The driver will run out more quickly

COMMONLY USED DRUGS Drug Action Analgesic Antiemetic Agitation Anticonvulsant Excessive Secretions Smooth muscle spasm Steroids Drug Morphine/Diamorphine Cyclizine Haloperidol Levomopromazine Metoclopramide Midazolam Hyoscine hydrobromide Glycopyrronium Hyoscine butylbromide Dexamethasone 24 Hour Dose Starting dose 5 – 10mgs 50 – 150mgs 1.5 – 5mgs 2.5 – 12.5mgs 30-60mgs 2.5 – 5mgs 6.25 – 25mgs(up to 150mgs) 5 – 30mgs 10 – 40mgs 40 – 1200mcgms 600 – 1200mcgms 20 – 120mgs 4 – 16mgs

CAUTION Cyclizine precipitation occurs when mixed with Diamorphine if either one exceeds 20mgs/ml-needs water as diluent Metoclopramide extrapyramidal reactions can occur with higher doses or if used with Haloperidol or Levomopromazine Levomopromazine exessive sedation and skin irritation can occur with higher doses or when used with other D2 receptor antagonists, eg Haloperidol or Metoclopramide Dexamethasone should not be mixed with any other drug-very small doses occasionally used for site reactions

The verification of death Dr Hong Tseung Macmillan GP Adviser

Definitions verifying death certifying death registering a death confirming death has actually occurred – 'fact of death' certifying death written confirmation of cause of death registering a death formal notification to authorities (Registrar of births and deaths) of fact of death and its cause

Who does what? verification of death certification of death doctor (GMC registered) registered nurse certification of death doctor (GMC registered) only must have seen the patient alive in preceding two weeks before death registration of death by 'the informant' – carer, relative, family member who takes death certificate to the Registrar

The coroner’s involvement when the cause of death is not known eg sudden death when there is a suspicious cause of death eg bullet wounds, knife wounds, strangulation, asphyxiation, overdose, suicide when no medical practitioner has seen patient alive within the last two weeks before death

The signs of human life breathing pulse/heart beat pupil reaction responsiveness auditory, sensation (pain), reflexes

The signs of dying (impending death) not always easy to 'diagnose dying' bed-bound comatose/semi-comatose taking sips of fluids only no oral intake irregular breathing (Cheyne Stokes, shallow)

What happens when death has occurred? no organs work no brain activity, heart stops, lungs stop, liver and kidneys stop, muscles stop tissues start to breakdown rigor mortis (several hours later), blood pools, decomposition

The signs of death looks pale (blood pooling) no breathing no pulse no heart sounds pupils fixed and unreactive to light no response to sensory stimuli (eg pain) no reflexes (no brainstem activity)

What to do None of the above present? = death confirmed look feel for skin colour (pink) for chest movement (breathing) feel for a MAJOR pulse: carotid listen for breath sounds for heart sounds test for BOTH pupil reflexes to light None of the above present? = death confirmed

Don’t get it wrong very embarrassing distressing for relatives