Trust Guideline/Protocol/Procedure template TW15
North Tees and Hartlepool NHS Foundation
Section B: Guideline for completion of Caring for the Dying patient (CFDP) Section A
Contents
Section B (i): Explanatory notes
1.
2.
3.
4.
5.
6.
7.
8.
9.
10.
11.
Introduction (Page 1)
Information about use of CFDP documents (Page 2)
Examples of how to document clinical decision-making regarding diagnosis of dying and
commencement of end-of-life care plan (Pages 2-3)
Documentation of specific concerns or requests from family regarding patient’s
care (Page 3)
DNACPR documentation (see Trust (NTH) Cardiac Resuscitation Policy C23 (based on
BMA/RC/RCN guidelines and Deciding Right) (Page 3)
Mental Capacity Act (MCA) (2005) (Pages 3-4)
Review of patient’s usual medications (Page 4)
Nutrition and hydration (Pages 4-5)
Summary of medical care plan (Pages 5-6)
Discharging patients home to die (Pages 6-7)
Glossary of terms/abbreviations in this document/Palliative Care practice (Page 8)
Section B (ii): CFDP Clinical Guidelines (page numbers in brackets)
1.
2.
3.
4.
5.
6.
7.
8.
9.
10.
11.
12.
Family’s Voice (Page 9)
Breathlessness at End of Life (Page 10)
Breathlessness at end of life (renal failure present) (Page 11)
Nausea and/or vomiting at the end of life (Page 12)
Pain at the end of life (Page 13)
Pain at the end of life in patients with renal failure (Page 14)
Pain at the end of life – supplemental information (Page 15)
Strong opioids used as alternatives to morphine (Page 16)
Restlessness / agitation at the end of life (Page 17)
Respiratory tract secretions at the end of life (Including guidance in renal failure) (Page 18)
Diabetes management at the end of life (Page 19)
References (Page 20)
1.
Introduction
This document has been developed by the North Tees and Hartlepool NHS Foundation
Trust’s Task and Finish Group for the Care of the Dying Patient. The Neuberger Report
in July 2013 (‘More Care, Less Pathway’), was a Government-commissioned, independent
review of the Liverpool Care Pathway (LCP). The ultimate outcome of the report was that,
from July 2014, the LCP should no longer be used in any healthcare setting.
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North Tees and Hartlepool NHS Foundation
Section B (i): Caring for the Dying Patient (CFDP) Explanatory notes
2.
Information about use of CFDP documents
The group has developed a comprehensive set of documents to enhance the care of dying
patients:
2.1
This CFDP document
2.2
The “When Someone is Dying” leaflet for relatives (to be given out in conjunction with the
Family’s Voice diary)
2.3
The Palliative Care Medication Chart.
2.4
The drug chart has been designed so that it can be used for palliative patients at any stage
of their illness, in both hospital and community settings.
2.5
The diagnosis of dying, and the decision to commence use of the CFDP document should
be a multi-disciplinary decision, led by a senior clinician.
2.6
See Algorithm: Diagnosing dying and supporting care in the last hours or days of life.
(Caring for the Dying Patient: Section A: Page 2)
3.
Examples of how to document clinical decision-making regarding diagnosis of dying
and commencement of end-of-life care plan
Making a diagnosis of dying is not an exact science, and there exists a degree of uncertainty
whenever we do so. For this reason, it is essential that as much information as possible be
taken into consideration when making the diagnosis, and that those caring for the patient
ensure that all reversible causes have been addressed where appropriate. It is also of
paramount importance that this uncertainty is communicated to patients and/or families,
whilst being as precise and open as possible.
Example 1
“Despite treatment of sepsis with IV antibiotics and IV fluids, patient has continued to
deteriorate”
Example 2
“Patient has deteriorated rapidly over last 36 hours. No evidence of sepsis or abnormalities
on blood tests to explain deterioration. Patient felt to be dying of disease burden”
Example 3
“Patient with end-stage motor neurone disease with worsening type 2 respiratory failure.
Patient has Advanced Decision (ADRT) which specifies refusal of invasive or non-invasive
ventilation”
Example 4
“Patient has end-stage cardiac/renal/hepatic failure and is deteriorating despite maximal
medical therapy and/or is not suitable for/declines/is discontinuing intervention (e.g. dialysis)”
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Section B (i): Caring for the Dying Patient (CFDP) Explanatory notes
Example 5
“Patient has life-threatening acute condition (e.g. ruptured abdominal aortic aneurysm, bowel
perforation/obstruction) and surgery is either not possible/appropriate, or patient has
declined surgery”.
4.
Documentation of specific concerns or requests from family regarding patient’s care
This section should include any particular worries the family may have about previous or
ongoing care, or specific requests for their future care, i.e. preferred positioning, limiting
frequency of turns/personal care if they cause patient distress, etc.
5.
DNACPR documentation (see Trust (NTH) Cardiac Resuscitation Policy C23 (based on
BMA/RC/RCN guidelines and Deciding Right)
For the overwhelming majority of patients who are thought to be in the final days of life
(unless there is potentially reversible pathology), cardiopulmonary resuscitation will not be
appropriate, as it would be medically futile.
There is sometimes a misconception that all DNACPR decisions must be discussed with
patients and/or their families. It is clearly good practice to be open and honest with patients
and their families, and as part of advising patients/families about their overall condition and
prognosis, it may be appropriate to discuss with them the DNACPR decision. If the DNACPR
form is not discussed the reason should be documented in the notes e.g. “family not
present/patient extremely anxious and discussion felt inappropriate”.
If it is thought that, in the event of a cardiorespiratory arrest, there is a reasonable chance of
successful resuscitation (e.g. localised disease/good performance status), then it may be
appropriate to discuss this with the patient, and ascertain their views and wishes. However,
the clinician should approach discussions sensitively and carefully, and not pursue
conversations with which patients or their relatives are not comfortable.
DNACPR forms do have to be discussed with patients (or their families if the patient
lacks capacity) if the patient is to be discharged home, as it can only be sent home if
there is consent from the patient (or family).
6.
Mental Capacity Act (MCA) (2005)
The Mental Capacity Act was introduced in 2007. It provides a clear and comprehensive
legal framework to guide clinical decision-making for people who lack mental capacity, and is
governed by five key principles:
6.1
6.2
6.3
Presumption of capacity (unless proved otherwise)
Supported decision-making (all reasonable efforts to be made to enhance capacity)
Acceptability of unwise decisions
A patient with capacity has the right to make ‘the unwise or seemingly eccentric decision’,
The requirement of best interests
Any action or decision made on behalf of a person who lacks capacity must be in their best
interests.
6.4
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Section B (i): Caring for the Dying Patient (CFDP) Explanatory notes
6.5
Least restrictive interventions
“A person lacks capacity on an issue if, because of their brain or mind dysfunction,
they cannot understand, retain and use the relevant information to reach and then
communicate their decision on that specific task at that time”.
For further information please refer to the Trust Policy: Mental Capacity Act
Policy/Deprivation of Liberty Safeguards (DoLS): C53.
7.
Review of patient’s usual medications
When a patient is thought to be in their last days of life, it is essential to review their usual
medications, as certain drugs should continue to be given or an alternative sought (e.g.
analgesia, anticonvulsants, anxiolytics). It is essential to review the potential benefits of
each drug in turn, and where possible, to continue those that will provide benefit in
terms of symptom control/quality of life. Transdermal patches (e.g. fentanyl,
buprenorphine, or patches for neurological conditions etc) should usually be continued. If the
patient has diabetes, please refer to the Diabetes in Palliative Care guidelines (see
Section B (ii): CFDP clinical guideline 11. Page 19).
Please contact the Specialist Palliative Care Team for advice if you are uncertain about
how best to rationalise the patient’s medications.
8.
Nutrition and hydration
8.1
Oral Nutrition and hydration
Many patients who are nearing the end of life will experience decreased interest in eating
and drinking. As they become more unwell, the muscles involved in swallowing become
weaker, and so patients may potentially be at risk of aspiration. However some patients may
wish to eat and drink, even if there may be a risk of aspiration. Provided all reasonable
attempts are made to communicate to the patient/family what the risks are, and provided that
these risks (e.g. distress to the patient) do not outweigh the benefits, patients should not
be prevented from eating and drinking if they wish to.
8.2
Clinically-assisted nutrition
For patients who are unable to eat for mechanical (eg head and neck or upper GI tumours)
or neurological reasons, it is essential to consider (and discuss with patient and family)
whether continuing or starting clinically assisted nutrition/hydration is appropriate. In a
patient with a good performance status, or where patients are feeling hungry, it would
generally be inappropriate to withhold/withdraw interventions such as PEG/PEJ feeding. For
a patient who has been receiving total parenteral nutrition (i.e. via a central line, TPN),
weighing up whether this should be continued is a decision that needs extremely careful
consideration. It is an invasive intervention, requiring monitoring of blood tests, and with risks
of complications such as infected central lines and fluid overload, and may have more
burdens than benefits.
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Section B (i): Caring for the Dying Patient (CFDP) Explanatory notes
8.3
Clinically-assisted hydration
For patients who have become too sleepy to manage oral fluids, or to sustain an adequate
fluid intake, it is understandable that their families may be concerned about them becoming
dehydrated, and the suffering this may cause. Many families may request that their relative
is given intravenous (IV) or subcutaneous (SC) fluids as they near the end of life. If a patient
has become unconscious, they will not be aware of thirst, although careful attention to
meticulous mouth care remains a priority at all times. In addition, for a patient whose urine
output is reducing as part of the dying process, giving fluid parenterally (IV or SC) may lead
to fluid overload, resulting in limb oedema and excess respiratory secretions. A careful and
sensitive explanation of the risks and benefits of parenteral hydration should be offered to
the family.
However, if a patient is unable to manage fluids for physical/mechanical reasons (e.g. head
and neck malignancy, bowel obstruction) and is feeling thirsty, then it may be appropriate to
give intravenous or subcutaneous fluids. This should be monitored, however, and stopped if
there is no symptomatic benefit or the risks start to outweigh the benefits. Please refer to the
Trust Policy C27: Hydration Management and the Administration of Fluid Therapy in
Adults.
9.
Summary of medical care plan
Whilst predicting life expectancy is not an exact science, the recognition that a patient is
approaching the end of life should be considered a diagnosis in its own right. Therefore, it
requires a specific management plan, tailored to the needs of the patient, in much the same
way as a patient being admitted to hospital with an acute/serious medical or surgical
condition would require a management plan.
Completing this document requires the recording of a large amount of information. It is
helpful to summarise the overall plan for each patient, so that those not familiar with the
patient (e.g. an on-call doctor), can, at a glance, access the key points with regards the
patient’s management plan.
Please see the example on the following page (Section B (i): CFDP Explanatory notes.
Page 6) of the types of issues that it would be helpful to summarise when the initial medical
assessment has been completed (clearly, this will vary depending on the individual patient’s
clinical condition and circumstances).
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Section B (i): Caring for the Dying Patient (CFDP) Explanatory notes
SUMMARY OF MEDICAL CARE PLAN
Key issues:

Pain (opiate-responsive)

Agitation/confusion

Marked renal impairment (eGFR 11)

Urinary retention

Type 1 (insulin-dependent diabetes)

On long-term steroids

Bowel obstruction with symptomatic dehydration
Specific management plan for this patient

Commence syringe driver with midazolam and haloperidol

Continue fentanyl patch, but add alfentanil to syringe driver in line with prn requirements

Switch to long-acting once-daily insulin (as per guidelines/Diabetes Specialist Nurse advice)

Catheterise

Give steroids by alternative route (syringe driver/subcutaneous injection) to avoid steroid
withdrawal

Continue IV/SC fluids for symptom control, but review frequently and stop if patient becomes
unconscious/fluid-overloaded.
10.
Discharging patients home to die
For some patients who know they are nearing the end of life, with no active treatment
options, they and their families may wish for them to go home to die. Facilitating this requires
the focused input of the whole multi-disciplinary team in order to make the process as
efficient and speedy as possible, but still addressing the full range of their holistic needs.
This includes:
10.1
10.2
10.3
10.4
10.5
Ordering relevant regular medications and anticipatory injectable drugs (including water
for injection), and ensuring that these are prescribed on a separate Palliative Care
Medication chart for discharge
Ordering equipment.
Assessing whether a care package is needed; and how this will be funded
Advising patients and families of what to expect (as far as can be anticipated)
Ensuring that patients and their families are given clear information about whom to contact
in the event of needing urgent help.
It is crucial that the community team is made aware of the rapid discharge. A referral should
be faxed to the Single Point of Access, but this needs to be accompanied by a verbal
referral.
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Section B (i): Caring for the Dying Patient (CFDP) Explanatory notes
The patient’s GP should be notified by telephone of the discharge, and asked to visit as soon
after discharge as possible. It is important that the GP is always in a position where they
have seen the patient within the last fortnight, as if they have not, it may lead to delays in
getting the death certification paperwork done. Furthermore, it may mean that the Police and
Coroner have to be involved, adding to the distress of a grieving family.
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Section B (i): Caring for the Dying Patient (CFDP) Explanatory notes
11. Glossary of terms/abbreviations in this document/Palliative Care practice
ADRT
Advance Decision to Refuse Treatment
BMA
British Medical Association
CSCI
Continuous subcutaneous infusion (syringe driver)
CFDP
Caring for the Dying Patient (this document)
DNACPR
Do not Attempt Cardiopulmonary Resuscitation
DN
District Nurse
eGFR
Estimated glomerular filtration rate (the lower the
number, the worse the renal function)
EHCP
Emergency Health Care Plan
GP
General Practitioner
IMCA
Independent Mental Capacity Advocate
LPA
Lasting Power of Attorney (two parts – Finances and
Health and Welfare – one does not automatically
confer possession of the other, but a person may be
both)
MCA (2005)
Mental Capacity Act 2005
NSAIDS
Non-steroidal anti-inflammatory drugs
O2
Oxygen
PCF
Palliative Care Formulary
PPC (1)
Preferred Priorities for Care (a document in which
patients can identify and write down a range of
information regarding their wishes about their medical
care)
PPC (2)
Preferred Place of Care (refers specifically to where
the patient wants to die); more correctly should be
Preferred Place of Dying
RC
Resuscitation Council
RCN
Royal College of Nursing
SC
Subcutaneous (refers to injections in this document)
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Section B (ii): Caring for the Dying Patient (CFDP) Clinical Guidelines
CFDP Clinical Guideline 1: Family’s Voice
1.
When introducing the Family’s Voice, staff must explain the purpose of the diary.
2.
When starting to use the Caring for the Dying Patient folder nurses should ensure that the
Family's Voice Survey is given to family members or friends after 4 hours, earlier if relatives’
adjustment to the situation is evident.
3.
Please spend 5 minutes explaining to the relative how to complete the Family’s Voice
ensuring the relative has a copy of the information sheet.
4.
Please write in the multidisciplinary notes that you offered a diary and the relative’s reaction:
its use or non use.
5.
Please write on the 'handover sheet' if family members are using the diary and state if the
diary has been reviewed daily.
6.
Every time a nurse enters the room of the patient please review the diary (at least once per
shift).
7.
Nurses should observe the score ratings and any comments made by family members and
resolve any issues.
8.
When the Family's Voice is completed offer family members a photocopy before sending it to
the palliative care team.
9.
Choose an appropriate time to explain the back page using such words as: In order to help
others in this situation we want to monitor the value of the Family’s Voice. At a later date we
may want to contact you and discuss the diary. This is the only reason for requesting your
contact details.
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Section B (ii): Caring for the Dying Patient (CFDP) Clinical Guidelines
CFDP Clinical Guideline 2: Breathlessness at End of Life
Breathlessness Present
General measures
Reassurance and support.
Gentle air flow with fan.
Cool room.
Give hourly mouth care.
Oxygen if helpful.
Specific management:
In heart failure consider giving a diuretic by
appropriate route (SC or IV).
Patient not already on opioid for pain
 Give morphine 2.5mg SC stat.
 Also prescribe morphine 2.5mg SC hourly for use
as needed.
 Start morphine 10mg/24hours by syringe driver.
Patient already on opioid
 Give midazolam 2.5mg SC stat.
 Also prescribe midazolam 2.5mg SC hourly for
use a needed.
 Start midazolam 10mg/24hours by syringe driver.
Risk of Breathlessness
Planning ahead
Patient not on opioid: Prescribe
morphine 2.5mg SC hourly prn.
Patient on opioid analgesics
Prescribe midazolam 2.5mg SC hourly
prn.
Review within 24 hours
If 2 or more doses needed, manage
as for breathless patient.
Review within 24 hours
If 1 – 2 rescue doses needed in 24 hours, increase
syringe driver dose by 50%.
If 3 or more rescue doses needed in 24 hours,
double syringe driver dose of drug in use and
increase rescue dose to 5mg. Continue to allow
rescue doses hourly as needed.
Ongoing review is essential.
Severe frightening breathlessness
Severe frightening breathlessness is an emergency and may be a terminal situation. Therapeutic
sedation is the appropriate treatment in this emergency situation.
Explain that only sufficient sedation to relieve the frightening sensation will be given.
Administer MIDAZOLAM 5mg subcutaneously.
Repeat at 30 minute intervals until the patient is calm (for some this will mean being asleep).
When the patient is calm set up a syringe driver with MIDAZOLAM.
Start at 20mg/24 hours and prescribe 5mg SC doses every 15 – 30 minutes for frightening symptoms.
Review every few hours and further titration is necessary to maintain good symptom control
In some patients doses of midazolam up to 100mg/24 hours may be needed.
Treatment with an opioid may also be appropriate to reduce sensation of breathlessness.
If symptoms persist contact the Specialist Palliative Care Team:
(North Tees Ext: 01642 383895) or the local Hospice or Macmillan Team,
(or if out of hours, the on-call Palliative Care Consultant or Hospice advice line)
North of England Cancer Network (NECN) Palliative Care Guidelines - Review date : 2016
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Section B (ii): Caring for the Dying Patient (CFDP) Clinical Guidelines
CFDP Clinical Guideline 3: Breathlessness at end of life (renal failure present)
Breathlessness Present
General measures
Calm environment.
Reassurance and support.
Gentle air flow with fan.
Cool room.

Give hourly mouth care.
 Oxygen if helpful.
Specific management
Consider giving a diuretic by appropriate route
(SC or IV).
Patient not on opioid for pain
 Give alfentanil 250 micrograms SC stat.
 If effective prescribe and start alfentanil 500
micrograms/24 hours by syringe driver.
 Prescribe 1/10th of syringe driver alfentanil dose
to be given sub-cut for breathlessness to be
given up hourly if needed.
Patient on opioid already
 Give midazolam 2.5mg SC stat.
 Prescribe the same hourly as needed.
 Start midazolam 10mg/24hours by syringe driver.
Risk of Breathlessness
Planning ahead
Patient not on opioid: Prescribe
alfentanil 250 micrograms SC hourly prn.
Patient on opioid analgesics
Prescribe midazolam 2.5mg SC hourly
prn.
Review within 24 hours
If 2 or more doses needed, manage
as for breathless patient.
Review regularly.
Syringe driver doses should be
adjusted as indicated by need for
rescue medication.
Review within 24 hours
If 1 – 2 rescue doses needed in 24 hours, increase
syringe driver dose by 50%.
If 3 or more rescue doses needed in 24 hours,
double syringe driver dose of drug.
Consider increasing rescue doses accordingly and
continue to give hourly as needed.
Severe frightening breathlessness
Severe frightening breathlessness is an emergency and may be a terminal situation. Therapeutic
sedation is the appropriate treatment in this emergency situation.
Explain that only sufficient sedation to relieve the frightening sensation will be given.
Administer MIDAZOLAM 2.5mg subcutaneously.
Repeat at 30 minute intervals until the patient is calm (for some this will mean being asleep).
When the patient is calm set up a syringe driver with MIDAZOLAM.
Start at 10mg/24 hours and prescribe 2.5mg SC doses every 15 – 30 minutes for frightening symptoms.
Review every few hours and further titration is necessary to maintain good symptom control
In some patients doses of midazolam up to 100mg/24 hours may be needed.
Treatment with an opioid may also be appropriate to reduce sensation of breathlessness.
If symptoms persist contact the Specialist Palliative Care Team:
(North Tees Ext: 01642 383895) or the local Hospice or Macmillan Team,
(or if out of hours, the on-call Palliative Care Consultant or Hospice advice line)
North of England Cancer Network (NECN) Palliative Care Guidelines - Review date : 2016
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Section B (ii): Caring for the Dying Patient (CFDP) Clinical Guidelines
CFDP Clinical Guideline 4: Nausea and/or vomiting at the end of life
This guideline for management of nausea/vomiting in the last days of life should be read in conjunction
with the general guideline on nausea/vomiting in palliative care.
Patients on an oral anti-emetic who enter the terminal phase should have the route of administration of
the anti-emetic changed to subcutaneous to ensure continued symptom control.
This may require a drug change (Domperidone to Metoclopramide; Prochlorperazine to Cyclizine).
New nausea/vomiting at end of life although rare is difficult to investigate and may be multi-factorial.
Evidence points to cyclizine + haloperidol in combination as the most effective treatment.
To avoid using two drugs, some specialists recommend levomepromazine because of its broad spectrum
of action and because its anxiolytic properties may be useful in end stage care.
In patients with renal failure AVOID CYCLIZINE and use haloperidol and/or levomepromazine as
described below.
New nausea/vomiting in a patient not currently using an anti-emetic
ASK:
Is a chemical cause likely?
If YES prescribe Haloperidol 1.5-3mg daily by SC injection (syringe driver if preferred). Also prescribe
Cyclizine 50mg prn SC, maximum 150mg/24hrs.
If NO prescribe Cyclizine 150mg/24hrs via syringe driver.
Also prescribe Haloperidol 1.5mg SC prn, maximum 3 doses in 24hrs.
If anxiolytic/sedative effects likely to be helpful consider levomepromazine as first line anti-emetic
prescribed as below.
REVIEW AFTER 24hrs:
If symptoms are controlled, continue as before.
If either nausea or vomiting persists change anti-emetic to levomepromazine as below and/or contact the
Specialist Palliative Care Team.
Uncontrolled nausea/vomiting in a patient already on an anti-emetic.
Review the possible causes but do not delay changing the anti-emetic regime or arrange burdensome
investigations in an end of life care situation.
If a combination of cyclizine and haloperidol fails to control nausea/vomiting replace them with
levomepromazine 12.5mg/24hrs SC via syringe driver.
Also prescribe levomepromazine 6.25mg SC prn up to 4 doses/24hrs.
Nausea/vomiting already controlled
Continue existing anti-emetic but switch to the subcutaneous route (this may require a change of agent if
prochlorperazine or domperidone is in use).
Also prescribe levomepromazine 6.25mg SC prn up to 4 doses/24hrs.
REVIEW SYMPTOMS ON A REGULAR BASIS
Notes on Levomepromazine
The effects of this drug may last up to 24hrs – once daily SC dosing may be an alternative to infusion via
syringe driver.
The maximum anti-emetic effect may be achieved at doses of 25-50mg/24hrs.
Doses above 25mg/24h (or lower in patients who are sensitive) have a sedative effect.
The sedative effect may be clinically useful - this drug is also used in the management of terminal agitation
and restlessness (see relevant flowchart for more information).
If symptoms persist contact the Specialist Palliative Care Team:
(North Tees Ext: 01642 383895) or the local Hospice or Macmillan Team,
(or if out of hours, the on-call Palliative Care Consultant or Hospice advice line)
North of England Cancer Network (NECN) Palliative Care Guidelines - Review date : 2016
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Section B (ii): Caring for the Dying Patient (CFDP) Clinical Guidelines
CFDP Clinical Guideline 5: Pain at the end of life (for patients with renal failure, see Section B
(ii): CFDP Clinical Guideline 6)
Unless specifically indicated, morphine is the injectable first-line opioid of choice. Reasons for choosing an
alternative include renal failure and previous morphine intolerance. You should ask for specialist advice if you
consider that an alternative is indicated.
YES
Is patient already on opioid drugs?
For patient on morphine, follow guidance below.
For patients on other opioids, seek advice from
Specialist Palliative Care Team.
Patient on morphine sulphate
 Divide 24 hour total dose of current oral
opioid (regular + prn) by 2 and prescribe
this as morphine (mgs) by syringe driver
over 24 hours.
 Prescribe 1/6th morphine syringe driver dose
for breakthrough/rescue medication to be
given SC up to hourly if needed.
 Start syringe driver 4 hrs before next oral
opioid dose would have been due (or
immediately if a dose has been missed).
 Discontinue oral opioid.
Review within 24hrs .
If extra medication has been needed for pain:
 Increase syringe driver dose by total
amount of rescue morphine given or by
50%, whichever is less.
 Adjust rescue/breakthrough dose to 1/6th of
syringe driver morphine dose to be given
SC up to hourly if needed.
If pain is controlled, make no changes.
Continue to review regularly.
NO
Scenario 1: “planning ahead”
Patient not in pain
 Prescribe morphine 5mg SC hourly
if needed.
 If patient later develops pain,
proceed to next box.
Scenario 2: “act now”
Patient in pain
 Give morphine 5mg SC stat.
 If effective prescribe and start
morphine 20mg/24h by syringe
driver.
 Prescribe morphine 5mg SC for
rescue/breakthrough pain to be
given up to hourly if needed.
Review within 24 hours
If extra medication has been needed
for pain:
 Increase syringe driver dose by
total amount of rescue medication
given or to 30mg / 24 hours,
whichever is less.
 Increase rescue / breakthrough
dose of morphine to 5mg SC to be
given up to hourly if needed.
Patient on weak opioid
(Codeine, Tramadol, Dihydrocodeine)



Stop oral weak opioid.
Start morphine 20mg / 24 hours by syringe
driver soon after last oral dose.
Prescribe morphine 5mg SC hourly if
needed for rescue / breakthrough pain.
Patient
patches
painas
relief
Review with
regularly
andfor
adjust
above.
(Fentanyl, Buprenorphine)
 See CFDP Clinical Guideline 8)
Review within 24hrs
If extra medication has been needed for
pain:
 Increase syringe driver dose by total
amount of rescue morphine given or
by 50%, whichever is less.
 Adjust rescue/breakthrough dose to
1/ th of syringe driver morphine dose
6
to be given s-c up to hourly if needed
If pain is controlled, make no changes.
Continue to review regularly
If symptoms persist contact the Specialist Palliative Care Team:
(North Tees Ext: 01642 383895) or the local Hospice or Macmillan Team,
(or if out of hours, the on-call Palliative Care Consultant or Hospice advice line)
North of England Cancer Network (NECN) Palliative Care Guidelines - Review date : 2016
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Section B (ii): Caring for the Dying Patient (CFDP) Clinical Guidelines
CFDP Clinical Guideline 6: Pain at the end of life in patients with renal failure
YES
Is patient already on opioid drugs?
Patient already on strong opioids
 See conversion chart to calculate dose of SC
alfentanil.
 Prescribe 1/10th alfentanil syringe driver (24
hour)
dose
for
breakthrough/rescue
medication to be given SC up to hourly if
needed.
 Start syringe driver 4 hrs before next oral
opioid dose would have been due (or
immediately if a dose has been missed).
 Discontinue oral opioid.
Review within 24hrs .
If extra medication has been needed for pain:
 Increase syringe driver dose by total amount
of rescue alfentanil given or by 50%,
whichever is less.
 Adjust rescue/breakthrough dose to 1/10th of
syringe driver alfentanil dose to be given SC
up to hourly if needed.
If pain is controlled, make no changes.
Continue to review regularly.
Patient on weak opioid
(Codeine, Tramadol, Dihydrocodeine)
 Stop oral weak opioid.
 Start alfentanil 1mg / 24 hours by syringe
driver soon after last oral dose.
 Prescribe alfentanil 250 micrograms to be
given SC hourly if needed for
rescue/breakthrough pain
 Review and titrate further as needed
 Seek advice if uncertain
Review regularly and adjust as above.
Patient with patches for pain relief
(Fentanyl, Buprenorphine): see CFDP Clinical
Guideline 8)
NO
Scenario 1: “planning ahead”
Patient not in pain
 Prescribe alfentanil 250 micrograms SC
hourly if needed.
 If patient later develops pain, proceed
to next box.
Scenario 2: “act now”
Patient in pain
 Give alfentanil 250 micrograms SC stat.
 If effective prescribe and start alfentanil
1mg by syringe driver.
 Prescribe alfentanil 250 micrograms SC
for rescue/breakthrough pain, to be
given up to hourly if needed.
Review within 24 hours
If extra medication has been needed for
pain:
 Increase syringe driver dose by total
amount of rescue alfentanil given or
by 50%, whichever is less.
 Increase rescue/breakthrough dose to
1/ th of syringe driver alfentanil dose
10
to be given SC up to hourly if needed
(with a minimum rescue dose of
alfentanil 250micrograms)
Review within 24hrs
If extra medication has been needed for
pain:
 Increase syringe driver dose by total
amount of rescue alfentanil given or
by 50%, whichever is less.
 Adjust rescue/breakthrough dose to
1/ th of syringe driver alfentanil dose
10
to be given SC up to hourly if needed.
If pain is controlled, make no changes.
Continue to review regularly
If symptoms persist contact the Specialist Palliative Care Team:
(North Tees Ext: 01642 383895) or the local Hospice or Macmillan Team,
(or if out of hours, the on-call Palliative Care Consultant or Hospice advice line)
North of England Cancer Network (NECN) Palliative Care Guidelines - Review date : 2016
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North Tees and Hartlepool NHS Foundation
Section B (ii): Caring for the Dying Patient (CFDP) Clinical Guidelines
CFDP Clinical Guideline 7: Pain at the end of life – supplemental information
Fentanyl patches in the dying/moribund patient





It is recommended to continue fentanyl patches in these patients.
Remember to carry on changing the patch(es) every 72hrs.
If pain occurs, give rescue doses of morphine or whichever injectable opioid has been
recommended by the specialist palliative care team.
Consult the chart in Clinical Guideline 8 to calculate the correct rescue dose.
If morphine is not appropriate seek advice about an alternative injectable opioid.
Adding a syringe driver to a patch




If 2 or more rescue doses are needed in 24hrs, start a syringe driver with morphine (or other
opioid) and continue the patch(es).
The morphine (or other opioid) dose in the syringe driver should equal the total rescue doses given
in previous 24hrs up to a maximum of 50% of the existing regular opioid dose.
Continue to apply this rule when reviewing pain control daily.
Remember to use the dose of the patch and the dose in the syringe driver to work out the new
rescue dose each time a change is made.
Breakthrough or rescue dose calculation for patients on end of life care pathway requiring
subcutaneous medication
Patients on Diamorphine, Morphine, Oxycodone or Hydromorphone via syringe driver
Calculate the breakthrough or rescue dose as 1/6th of the 24hr dose
For convenience prescribe to the nearest 5mg for doses over 10mg
Patients on alfentanil via syringe driver:
Calculate the breakthrough or rescue dose as 1/10th of the 24 hour dose.
Patients on fentanyl via syringe driver:
Calculate the breakthrough or rescue dose as 1/8th of the 24 hour dose.
Patients with a fentanyl patch:
Use the opioid dose conversion chart in CFDP Clinical Guideline 8 to calculate the appropriate dose.
When managing a patient with renal failure and alfentanil is unavailable, please seek specialist
advice. Alternative options include fentanyl, hydromorphone and sometimes oxycodone.
If symptoms persist contact the Specialist Palliative Care Team:
(North Tees Ext: 01642 383895) or the local Hospice or Macmillan Team,
(or if out of hours, the on-call Palliative Care Consultant or Hospice advice line)
North of England Cancer Network (NECN) Palliative Care Guidelines - Review date : 2016
Page 15 of 20
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North Tees and Hartlepool NHS Foundation
Section B (ii): Caring for the Dying Patient (CFDP) Clinical Guidelines
CFDP Clinical Guideline 8: Strong opioids used as alternatives to morphine (i.e. WHO ladder Step 3: nearest practicable doses are given)
Dose conversion ratios are used when switching between opioids but these changes require clinical judgement as well as a calculator.
When the opioid is changed because of poor pain control or unacceptable side-effects, start with a dose lower than the calculated amount and then adjust the dose according to patient
response. Read the notes below the table before deciding on the new opioid dose.
Specialist advice is strongly advised in these opioid dose switches and you should follow the guidance of your local experts.
Route
Oral opioid
Dose in mg per 24 hours
Opioid
Morphine
Conversion
calculation rule
20
30
60
120
180
240
300
360
480
600
720
840
Oxycodone
Subcutaneous opioid infusion
Morphine is first line injectable opioid of choice
Doses are for medication in syringe driver in mg given over 24hrs
Morphine
Diamorphine
Oxycodone
Alfentanil
Divide oral morphine
dose by 1.5 (Note a)
Divide oral
morphine dose by 2
~15
20
40
80
120
160
200
240
320
400
480
560
10
15
30
60
90
120
150
180
240
300
360
Use diamorphine
Divide oral morphine
dose by 3
Divide oral oxycodone
dose by 2: (Note b)
1/30th oral morphine
equivalent dose
280
7.5
10
20
40
60
80
100
120
160
200
240
280
0.5
1
2
4
6
8
10
12
16
20
24
28
Opioid by patch
(micrograms/hr patches)
Fentanyl
(72hrly)
(Note c)
Buprenorphine
N/A
12
25
50
75
100
125
150
200
250
300
350
10 (7 day)
15 (7 day)
35 (4 day)
70 (4 day)
105 (4 day)
140 (4 day)
(Note d)
Note (a): Morphine and Oxycodone. Latest evidence (graded ‘strong’: EAPC 2012) advises a ratio of morphine: oxycodone = 1.5:1 (as in table above). These doses are in the table above. In
practice when switching FROM morphine TO oxycodone divide the morphine dose by 2 to derive the oxycodone dose, and then retitrate according to patient response. When switching
FROM oxycodone TO morphine, multiply the oxycodone dose by 1.5 to derive the morphine dose and titrate.
Note (b): When changing oxycodone route from oral to subcutaneous, PCF4 advises oral:subcut = 1.5:1 (manufacturer suggests oral:subcut = 2:1). The switch is likely to be because the oral
absorption has been poor, so in practice you should halve the dose when switching to subcutaneous (these doses are in the table).
Note (c): PCF4 advises morphine:fentanyl = 100:1 based on extensive clinical experience & consensus. (BNF states 150:1). To follow PCF4 conversion multiply 24hr oral morphine dose in mg
by 10 to derive the 24hr fentanyl dose in micrograms. Divide this figure by 24 to derive the microgram/hr patch strength.
Note (d): Detail in the PCF4 reflects differing opinions on relative potency of fentanyl and buprenorphine. Doses in the table are based on buprenorphine being less potent than fentanyl.
North of England Cancer Network (NECN) Palliative Care Guidelines - Review date : 2016
Page 16 of 20
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Section B (ii): Caring for the Dying Patient (CFDP) Clinical Guidelines
CFDP Clinical Guideline 9: Restlessness / agitation at the end of life
Consider common causes of restlessness, e.g. urinary retention, faecal impaction and pain.
Manage these appropriately. Also consider whether sedation is acceptable or not.
Patients on regular or long term benzodiazepines who enter the last days of life should continue to receive a
benzodiazepine. Give as midazolam by subcutaneous infusion to prevent rebound agitation/withdrawal.
The doses given here are a guide. In complex situations, seek specialist advice.
If sedation is clinically indicated, choose MIDAZOLAM
Where there is Delirium or to avoid excess sedation, choose HALOPERIDOL
LEVOMEPROMAZINE may be preferable where there is paranoia/psychosis
MIDAZOLAM is preferred first-line option in renal failure
Patient is restless / agitated
Immediate management
(use lower doses range if frail/elderly)
Give medication SC stat:
Midazolam 2.5mg - 5mg
OR
Haloperidol 1.5mg – 2.5mg
Start syringe driver:
Midazolam 10-20mg/24h
OR
Haloperidol 2.5 - 5mg/24h
Prescribe rescue doses SC up to hourly:
Midazolam 2.5mg - 5mg
OR
Haloperidol 1.5mg – 2.5mg
Review within 24 hrs
Midazolam:
Increase syringe driver dose by the equivalent
of the extra doses given. Seek specialist
advice if dose increases over 50% appear to
be needed.
Also continue rescue doses of 5mg SC prn.
If midazolam driver dose > 30mg/24hrs,
consider addition of levomepromazine or
haloperidol.
Common dose range midazolam 30 – 60mg
/24hrs
Haloperidol:
If extra doses are given and effective, increase
driver dose by the same amount.
Consider addition of midazolam if doses need
to be increased above 10mg/24hrs or there is
limited effect.
Patient is not restless / agitated
Plan ahead
Prescribe SC up to hourly as needed
Either Midazolam 2.5 mg - 5mg
Or Haloperidol 1.5mg – 2.5mg
Review within 24 hrs
If 2 or more doses needed and are effective,
start syringe driver of same drug (see left).
If 2 or more doses tried but are not effective,
switch to the other drug or consider
levomepromazine (see below)
Persistent symptoms
Levomepromazine is an effective
sedative.
It may be added to midazolam (if
midazolam partially effective) or used to
replace haloperidol or midazolam.
Start syringe driver at 25mg/24h.
Use rescue dose 12.5mg SC hourly as
needed – no limit.
Sometimes very high doses are needed.
Although hourly doses are advised,
repeated doses without effect should
prompt specialist advice whatever time of
day or night.
If symptoms persist contact the Specialist Palliative Care Team:
(North Tees Ext: 01642 383895) or the local Hospice or Macmillan Team,
(or if out of hours, the on-call Palliative Care Consultant or Hospice advice line)
North of England Cancer Network (NECN) Palliative Care Guidelines - Review date : 2016
Page 17 of 20
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North Tees and Hartlepool NHS Foundation
Section B (ii): Caring for the Dying Patient (CFDP) Clinical Guidelines
CFDP Clinical Guideline 10: Respiratory tract secretions at the end of life (Including
guidance in renal failure)
Secretions (‘death rattle’) are easier to control early than late. Treat promptly.
Hyoscine salts are commonly prescribed to try to control secretions in the last days of life.
Hyoscine butylbromide is non-sedating and should therefore be considered in a conscious patient.
(NB Hyoscine butylbromide is incompatible with cyclizine in a syringe driver).
Hyoscine hydrobromide has sedative effects which may be useful, but occasionally causes agitation.
Some palliative care services use Glycopyrrolate as the preferred anti-secretory agent to avoid sedation.
Avoid hyoscine hydrobromide in renal failure.
If in doubt, seek advice.
Secretions present
General management
 Give explanation and reassurance to
relatives.
 Alter position to shift secretions.
 Consider stopping parenteral fluids.
 Give hourly mouth care.
Specific management – 3 actions
Give stat dose SC
Either Hyoscine butylbromide 20mg
Or Hyoscine hydrobromide 400micrograms
Start syringe driver
Either Hyoscine butylbromide 60mg/24h
Or Hyoscine hydrobromide 1.2 mg/24h
Ensure rescue doses up to hourly SC as
needed.
Either Hyoscine butylbromide 20mg
Or Hyoscine hydrobromide 400 micrograms
Secretions absent
Anticipatory prescribing is crucial to
allow early and better control of this
symptom.
When a patient starts on the caring for the
dying patient documentation always
prescribe hyoscine up to hourly SC as
needed.
Use either Hyoscine butylbromide 20mg or
Hyoscine hydrobromide 400 micrograms.
Review after no longer than 24hrs.
If 2 or more doses needed, manage as for
‘secretions present’.
Review after 24hrs or sooner
If rescue doses needed, increase 24hr
dose
Either Hyoscine butylbromide 120mg/24h
Or Hyoscine hydrobromide 2.4mg/24h
Continue rescue medication up to hourly
as needed.
Difficult cases
In heart failure, pulmonary oedema may
cause a rattle. Consider giving diuretic by an
appropriate route.
Do not hesitate to seek specialist advice if
needed.
If symptoms persist contact the Specialist Palliative Care Team:
(North Tees Ext: 01642 383895) or the local Hospice or Macmillan Team,
(or if out of hours, the on-call Palliative Care Consultant or Hospice advice line)
North of England Cancer Network (NECN) Palliative Care Guidelines - Review date : 2016
Page 18 of 20
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Section B (ii): Caring for the Dying Patient (CFDP) Clinical Guidelines
CFDP Clinical Guideline 11: Diabetes management at the end of life
Discuss changing the approach to diabetes management with patient and/or family if not already
explored. If the patient remains on insulin ensure the Diabetes Specialist nurses (bleep: 24618 or via main
switchboard: 01642 617617) are involved and agree monitoring strategy.
Type 2 diabetes
Diet controlled
Type 2 diabetes on tablets
and / or insulin
Type 1 diabetes
Stop monitoring blood sugars.
Stop oral hypoglycaemics
Consider stopping insulin
depending on dose (a)
Continue once daily long acting
insulin analogue Glargine
(Lantus®) with reduction in
dose (b)
Either
If insulin stopped:
 Urinalysis for glucose
daily.
 If over 2+ positive check
capillary blood glucose .
 If glucose over 20mmols/l
give 6 units Aspart insulin
(Novorapid®).
 Recheck capillary blood
glucose after 2 hours.
If insulin to continue:

Prescribe once daily long
acting insulin analogue
Glargine (Lantus®) giving
dose in morning with 25%
reduction in total daily
insulin dose.
Check blood sugar once a day
at teatime:
 If below 8 mmols/l reduce
insulin.
 If above 20 mmols/l
increase insulin to reduce
risk of symptoms or
ketosis.
 Alter dose by 2 units if
daily dose below 50 units.
 Alter dose by 4 units if
daily dose 50 units or
more.
If require Aspart more than
twice consider daily insulin
Glargine (Lantus®)

a.
Keep invasive tests to a minimum. It is necessary to perform some tests to ensure unpleasant
symptoms do not occur due to low or high blood sugars.
It is very difficult to identify symptoms due to hypo- or hyperglycaemia in a dying patient. If
observed symptoms could be due to blood glucose levels a urine test should be performed,
if possible, and/or followed by a blood glucose check if necessary.
Patients on over 48 units of insulin daily are likely to develop symptoms without insulin.
b.
Reduce insulin Glargine dose by 25% as well as discontinuing short-acting insulin.

Contact the diabetes nurse specialists or specialist palliative care team if advice required.
If symptoms persist contact the Specialist Palliative Care Team:
(North Tees Ext: 01642 383895) or the local Hospice or Macmillan Team,
(or if out of hours, the on-call Palliative Care Consultant or Hospice advice line)
Page 19 of 20
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Section B (ii): Caring for the Dying Patient (CFDP) Clinical Guidelines
12. References, key resources and further information
12.1
12.2
12.3
12.4
12.5
12.6
Mental Capacity Act 2005: Chapter 9 (Parts 1-3); www.legislation.gov.uk
Watson M, Lucas C, Hoy A and Back I. (2005) Oxford Handbook of Palliative Care. Oxford
University Press, Oxford.
North Tees and Hartlepool NHS Foundation Trust Cardiac Resuscitation Policy C23 v8
(incorporating 2007 BMA/RC/RCN Joint Statement on CPR; Clinical Medicine, 2005; 5: 35460; and A Guide to Symptom Relief in Palliative Care, 6th ed. Radcliffe Medical Press, 2010)
North of England Cancer Network Palliative Care Guidelines for cancer and non-cancer
patients, third edition: 2012.
Neuberger, J (Chair): More Care, Less Pathway. A Review of the Liverpool Care Pathway.
Independent Review of the Liverpool Care Pathway:
https://www.gov.uk/government/uploads/system/uploads/
attachment_data/file/212450/Liverpool_Care_Pathway.pdf
Twycross R, Wilcock A (2011). Palliative Care Formulary. 4th Edition. Palliativedrugs.com
Ltd., Nottingham.
Issue date:
Guideline Reference and
Version Number:
Date for next review:
Authors and Job Title:
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