Terminal Care - Royal Brompton & Harefield NHS Foundation Trust

The Great Ormond Street Hospital palliative care team is able to offer 24-hour advice and symptom management support for professionals and families. This includes supporting end-of-life care outside hospital, in liaison with local and tertiary centre services (see referral information below).

Do-not-resuscitate (DNR) recommendations must be discussed with the family (and when appropriate the child as well) by the consultant. Conclusions of the discussion must be documented clearly in the notes. Please refer to the Royal Brompton & Harefield NHS Trust policy document - "Do not attempt to resuscitation order in children and young people, the policy for the use of advanced statements and policy for the obtaining of consents" available on the Trust Intranet.

Should the family have decided to care for their child at home, the local paediatric & community team, as well as the general practitioner will take the lead role in the care. We would of course offer our full support, including liaison through our CF community team.

The following discusses how we handle terminal care and death at our own hospital. Please also refer to the Royal Brompton & Harefield NHS Trust policy document - "Guidelines for the management of patients and families during death and bereavement" available on the Trust Intranet.

The GP and local paediatric consultant must be informed if a child is dying on our ward.

The child and his or her family are given support from the medical, nursing and other members of the CF team as required. We endeavour to allow time for the family to be alone together if required - as much as essential nursing care will allow. The individual cultural and religious needs are respected at all times.

The Hospital Pain Control Team should be involved at an early stage.

Venepuncture and other painful or uncomfortable procedures are avoided if at all possible. Intravenous access is usually unnecessary, although sometimes intravenous fluids are needed to avoid thirst if a child can not tolerate anything enterally.

Gentle physiotherapy may be continued if it is giving symptomatic relief. It is such a way of life for most families that they may wish to continue it so that the child does not feel abandoned.

Some of the medications will be continued, although only those that offer symptomatic relief e.g. bronchodilators, enzymes supplements. Clearly drugs such as antibiotics, vitamins, calorie supplements etc are usually inappropriate.

Humidified oxygen may be required.

Medication for symptom relief
See also ‘Prescribing in palliative care’ in British National Formulary for Children (BNFc).

1. Analgesia
Paracetamol - oral / rectal.
20mg/kg regularly every 6 hours (maximum 1g qds).

Ibuprofen – oral.
5 mg/kg (max 400 mg) regularly every 8 hours, can be given with paracetamol.

Oral morphine.
Starting dose is 0.1 mg/kg 4 hourly available as standard release oral solution (Oramorph) or standard release tablets (Sevredol). Dose is titrated according to response with extra doses given when necessary in addition for break through pain.

Once requirements established, usually after 24 hours, this can be converted to MST (SUSTAINED release oral morphine) by dividing the total daily morphine requirements (regular + PRN) into 2 divided doses. In addition MST dose continues to be titrated to response using the standard release preparations (Oramorph or Sevredol) for break through pain. Ensure constipation is avoided by a regular laxative.

An alternative is to start straight on MST, in which case starting dose is 1 mg/kg 12 hourly for those > 1year old, and 0.5 mg/kg for under 1 year olds, available as suspension or tablet.

Diamorphine – subcutaneous / intravenous.
If no longer tolerating oral MST, move on to this at a dose of one-third the total daily dose of MST per day. Dose is then titrated according to response. If starting straight on to diamorphine, starting dose is 0.67 mg/kg/day. When given subcutaneously, use syringe driver and a small subcutaneous needle.

Morphine – subcutaneous/intravenous
Used if diamorphine not available. Starting dose for SUBCUTANEOUS use is HALF the total daily dose of oral morphine. For intravenous use the dose is ONE THIRD of the daily oral dose.

Fentanyl patches or BuTrans patches should be considered. The GOSH palliative care team are able to advise on this.

2. Anxiolytic

Diazepam – oral / rectal. Oral 2-12 years: 2-3mg tds; Oral >12 years: 2-10mg tds; Rectal >12 years: 10mg tds.

Midazolam - subcutaneous / intravenous. Sedating and amnesic effect as well. Can be mixed with diamorphine & cyclizine (see BNFc). Initial dose for >1 year is 250 – 1000 mcg/kg/day. Adult dose is 20-100mg / 24 hours.

MST or morphine should also offer relief (see above for dose).

Methotrimeprazine (levopromazine) – oral / subcutaneous (see below for dose).

3. Anti-emetic
Cyclizine – oral / IV
May be 1st line if central element to nausea. Dose (same for oral & IV) is 25 mg 8 hourly aged 6-12 years, 50 mg 8 hourly if > 12 years. Under 6 years use 1 mg/kg 8 hourly (not licensed). It may also be given as a subcutaneous infusion using the total daily dose over 24 hours.

Ondansetron – oral / IV
Dose for <12 years is 100mcg/kg 8-12 hourly (maximum 4mg). Maximum dose >12 years is 8mg.

Domperidone – oral
Dose for <12 years is 200-400mcg/kg every 6-8 hours. >12 years: 10-20mg every 6-8 hours.

Methotrimeprazine (levopromazine) – oral / subcutaneous
If no response to cyclizine, but useful as can be given subcutaneously, and has additional anxiolytic effect. May cause some sedation as well. Initial dose for subcutaneous infusion is 0.1 mg/kg/day then dose range 0.35-3 mg/kg/day. Adult dose is 5-200mg/day. Oral dose for 1-12 years is 0.25 – 1mg/kg every 6 hours; >12 years old: 12.5-50mg every 6-8 hours. Lower doses may be as effective but cause less sedation. Can be mixed with diamorphine.

Dexamethasone may help with nausea as well.

4. Cough
MST or diamorphine may relieve intractable cough as given above.

5. Dyspnoea
Humidified oxygen may help.

MST or morphine/diamorphine may also help with dyspnoea as given above.

Nebulised morphine has been reported as useful in a case report (Ped Pulmonol 2000;30:257-9). They used 2 mg preservative-free morphine sulphate added to 2 mg dexamethasone and 2.5 mls normal saline 4 hourly, the only adverse effect being headaches.

Diazepam has also been used.

Dexamethasone may help bronchospasm / airway obstruction. IV/oral dose for 2-12 years is 2mg tds and for >12 years 4mg tds.

6. Respiratory secretions
Hyoscine patches can help but a dry mouth is unpleasant, so good mouth care is essential.
Oral glycopyrronium may also be useful. Dose is 40-100 mcg/kg 3-4 times a day (tablets available on a named patient basis).

7. Restlessness / confusion / hallucinations
Haloperidol – subcutaneous/oral.
Can be mixed with diamorphine if lower doses used. Subcutaneous doses for 1-12 years are 25-50 mcg/kg/24 hours. Adult dose is 5-15 mg/24 hours. Oral doses for 1-12 years are 12.5-25 mcg/kg bd. Adult dose is 1-3 mg tds.

Methotrimeprazine (levopromazine) – subcutaneous.
See above.

8. General tonic
Oral steroids may be useful (prednisolone 10mg or dexamethasone in an equivalent dose).

9. Syringe driver mixing and compatibility
See BNFc for more details.