PALLIATIVE CARE PROTOCOL

We have a Palliative Care Register which includes all cancer patients with advanced disease in need of supportive/palliative care.  We hold 3 monthly multidisciplinary meetings including GP’s, District nurses and Macmillan nurses to record, plan and monitor patient care in accordance with level 1 of the Gold Standards Framework.

Palliative Care services in West Lothian have also produced a folder of guidelines, which offers clinical and practical advice. This protocol is a shortened version with specific relevance to Howden's team approach.

In Howden we offer a personal list system consequently patients are known well by one doctor. Ideally the named doctor would plan care and visit where possible but as only one doctor is available for urgent house calls each day there needs to be an efficient transfer of information regarding terminally ill patients.

Updated information from the MDT meetings in the form of an SCR2 form can be found in the Palliative care register and in the patients records at home, including the named GP, District Nurse and Macmillan nurse

Communication

TEAM AVAILABLE

Lead GP – Dr D McCutcheon /Dr C Hennessey               Lead DN -  Linda Yule

District Nurses

 Jean Little (Full Time) and Linda Yule (Mornings only)

·         Jean and Linda are involved in patient care at home. They are the key players once a patient is being cared for at home.

·         They are keen to be involved from an early stage to allow a trusting relationship to develop with the patient and family before there is an urgent need for nursing help.

·         They coordinate a team that provides basic nursing care and emotional support for the patient and importantly the family.

·         They may provide a bereavement service for the family, once the patient dies.

·         Communication is particularly important with the district nurses.

They can be found in their offices between 8.30am and 9am each morning, notes left in their pigeon holes in reception will also be picked up regularly, telephone extension 844 at the health centre or mobile ‘phone contact (if urgent) .  E-mail, at present, is not an efficient way of contacting them.

Dora Bennett, Susan Scott and Sheila Rae – Macmillan Nurses are available for advice. They are based at Dedridge Health Centre, their number is 01506 414 586.

Other GP Partners can offer advice and support. Where holiday or time off is planned the Partner should arrange for another named partner to be specifically aware of the terminally ill patient. The district nurses should be given this information.

Macmillan Day Centre- this offers a day centre for patients, in terms of symptom control and emotional support for the patient and the family. It is open Mon. -Fri. 9am- 4.30pm and there are often nurses or doctors who are able to give advice over the telephone 01506- 422 753.

Community Pharmacy network- this is a new scheme which will only run for a year in the first instance. It will guarantee certain palliative care drugs to be available in listed pharmacies. The nearest to Howden is Morrisons at the Almondvale Centre, Livingston. 8am-10pm Mon- Fri and 8am-8pm on Sat. NHS 24 has info. regarding out of hours supply. The list of drugs is in the Guideline folder and is likely to include whatever is needed.

For further specialist advice 24 hours a day:

Fairmile Mare Curie Centre 0131 470 2201

St Columba’s Hospice 0131- 551 1381.

Admission

There are no Palliative Care beds in West Lothian and so if needing admission the choice is St. John's as an acute medical admission or to one of the hospices in Edinburgh.

Patients and their families should have the choice. Often due to geography SJH is easier. During the day it would be sensible to contact Patricia Black (Palliative Specialist Nurse at St Johns), to inform her a palliative care patient is being admitted. Often she will be informed by the hospital doctors but it would be wise to check this.

House Calls

Try and speak to patient’s own doctor to elicit as much info as possible, also speak to Jean or Linda before house call. Clearly document in the notes any changes to drug regime. Write information for the patient and the family as often our instructions are misunderstood or forgotten. This is also most likely to be kept up to date and is useful to use in the house if the notes have been unavailable.

Control of Symptoms

West Lothian guidelines are excellent. A copy is on the communal doctors desk - use them.

ANALGESIA

See SIGN guideline 44 for control of cancer pain. Blue booklets are available for use in patients’ homes as appropriate.

·         Move up WHO ladder appropriately - only try one mild opiate before changing to morphine.

·         Prescribe regular laxatives immediately an opiate is started. A mixture of both stimulant and softener needed eg codanthramer.

·         Prescribe anti-emetics - but these can be on a PRN basis. Tolerance to opiate nausea usually develops in 5- 10 days.

·         As patient becomes more terminal they are likely to need LESS opiate.

Oromorph –

Good starting strong opioid,

·         It should be given 4 hourly-

·         If needing more than this then increase the 4 hourly dose rather than encouraging more frequent doses.

·         Increase daily dose of morphine by 30% until pain controlled.

·         Move onto controlled released morphine once pain controlled or side effects develop.

·         Prescribe regular analgesia and breakthrough cover.            

·         The breakthrough dose should be a sixth of the total daily regular dose.

Changing to parenteral route- convert to s/c diamorphine- calculate the total daily dose of morphine and divide by 3. This is total daily dose to be given in a syringe driver. Prescribe 1/6th of 24 hour daily dose for break through pain as a stat I/M or S/C dose. See Guidelines for drug compatibilities. 

Opiod toxicity

·         Subtle agitation, hallucinations, myoclonic jerks, nightmares, hyperalgesia (painful/ sensitive skin to even light touch)

·         Reduce or change morphine, ensure hydration- may need to set up s/c fluids overnight (speak to nurses), haloperidol better than benzodiazepines if drug therapy required.

·         May require change of opioid, most common at present is from morphine to oxycodone- (approximately half morphine to give oxycodone dose)

NSAIDS

Bone pain and opioid sparer. Often gastric protection will be necessary- PPI probably the best, with fewest side effects.

Neuropathic pain

Tricyclic anti-depressants e.g. Amitriptylline 25mg- 75mg (up to 100mg in large people), Anti-convulsants e.g. carbamezepine, phenytoin, clonazepam (especially if sedation required) and gabapentin (needs a very low dose and gradual increase to avoid side effects|). Steroids also sometimes helpful.

Bed sores

Diamorphine (e.g. 2.5mg) mixed with a little intrasite gel and smeared into bed sore.

LAXATIVES

·         Codanthramer

·         Movicol

·         Laxoberol 5- 10mls good for short, sharp shock

SUB-CUTANEOUS FLUIDS

These are becoming more popular and DN's should be happy to arrange. They are helpful in opioid toxicity, hypercalcaemia and dehydration.

500mls N/saline or 5% glucose in 6 hours via butterfly- site s/c in abdo; upper chest; scapula; MEDIAL thigh. No more than 10mmol of KCL per bag.

DEPRESSION