North Tees and Hartlepool Hospitals NHS Foundation Trust



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Section B: Guideline for completion of Caring for the Dying patient (CFDP) Section A

Contents

Section B (i): Explanatory notes

1. Introduction (Page 1)

2. Information about use of CFDP documents (Page 2)

3. Examples of how to document clinical decision-making regarding diagnosis of dying and commencement of end-of-life care plan (Pages 2-3)

4. Documentation of specific concerns or requests from family regarding patient’s

care (Page 3)

5. DNACPR documentation (see Trust (NTH) Cardiac Resuscitation Policy C23 (based on BMA/RC/RCN guidelines and Deciding Right) (Page 3)

6. Mental Capacity Act (MCA) (2005) (Pages 3-4)

7. Review of patient’s usual medications (Page 4)

8. Nutrition and hydration (Pages 4-5)

9. Summary of medical care plan (Pages 5-6)

10. Discharging patients home to die (Pages 6-7)

11. Glossary of terms/abbreviations in this document/Palliative Care practice (Page 8)

Section B (ii): CFDP Clinical Guidelines (page numbers in brackets)

1. Family’s Voice (Page 9)

2. Breathlessness at End of Life (Page 10)

3. Breathlessness at end of life (renal failure present) (Page 11)

4. Nausea and/or vomiting at the end of life (Page 12)

5. Pain at the end of life (Page 13)

6. Pain at the end of life in patients with renal failure (Page 14)

7. Pain at the end of life – supplemental information (Page 15)

8. Strong opioids used as alternatives to morphine (Page 16)

9. Restlessness / agitation at the end of life (Page 17)

10. Respiratory tract secretions at the end of life (Including guidance in renal failure) (Page 18)

11. Diabetes management at the end of life (Page 19)

12. 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.

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)”

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 Presumption of capacity (unless proved otherwise)

6.2 Supported decision-making (all reasonable efforts to be made to enhance capacity)

6.3 Acceptability of unwise decisions

A patient with capacity has the right to make ‘the unwise or seemingly eccentric decision’,

6.4 The requirement of best interests

Any action or decision made on behalf of a person who lacks capacity must be in their best interests.

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.

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).

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 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

10.2 Ordering equipment.

10.3 Assessing whether a care package is needed; and how this will be funded

10.4 Advising patients and families of what to expect (as far as can be anticipated)

10.5 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.

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.

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) |

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.

Section B (ii): Caring for the Dying Patient (CFDP) Clinical Guidelines

CFDP Clinical Guideline 2: Breathlessness at End of Life

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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)

Section B (ii): Caring for the Dying Patient (CFDP) Clinical Guidelines

CFDP Clinical Guideline 3: Breathlessness at end of life (renal failure present)

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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

REVIEW SYMPTOMS ON A REGULAR BASIS

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)

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.

For patient on morphine, follow guidance below.

For patients on other opioids, seek advice from

Specialist Palliative Care Team.

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)

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

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)

Section B (ii): Caring for the Dying Patient (CFDP) Clinical Guidelines

CFDP Clinical Guideline 7: Pain at the end of life – supplemental 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)

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 |Subcutaneous opioid infusion |Opioid by patch |

| |Dose in mg per 24 hours |Morphine is first line injectable opioid of choice |(micrograms/hr patches) |

| | |Doses are for medication in syringe driver in mg given over 24hrs | |

Opioid |Morphine |Oxycodone |Morphine |Diamorphine |Oxycodone |Alfentanil |Fentanyl

(72hrly) |Buprenorphine | |Conversion calculation rule | |Divide oral morphine dose by 1.5 (Note a) |Divide oral morphine dose by 2 |Divide oral morphine dose by 3 |Divide oral oxycodone dose by 2: (Note b) |1/30th oral morphine equivalent dose |(Note c) |(Note d) | | |20 |~15 |10 | |7.5 |0.5 |N/A |10 (7 day) | | |30 |20 |15 | |10 |1 |12 |15 (7 day) | | |60 |40 |30 | |20 |2 |25 |35 (4 day) | | |120 |80 |60 | |40 |4 |50 |70 (4 day) | | |180 |120 |90 | |60 |6 |75 |105 (4 day) | | |240 |160 |120 | |80 |8 |100 |140 (4 day) | | |300 |200 |150 | |100 |10 |125 | | | |360 |240 |180 | |120 |12 |150 | | | |480 |320 |240 | |160 |16 |200 | | | |600 |400 |300 | |200 |20 |250 | | | |720 |480 |360 | |240 |24 |300 | | | |840 |560 |Use diamorphine |280 |280 |28 |350 | | |

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.

Section B (ii): Caring for the Dying Patient (CFDP) Clinical Guidelines

CFDP Clinical Guideline 9: Restlessness / agitation at the end of life

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)

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)

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)

Section B (ii): Caring for the Dying Patient (CFDP) Clinical Guidelines

CFDP Clinical Guideline 11: Diabetes management at the end of life

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)

Section B (ii): Caring for the Dying Patient (CFDP) Clinical Guidelines

12. References, key resources and further information

12.1 Mental Capacity Act 2005: Chapter 9 (Parts 1-3); .uk

12.2 Watson M, Lucas C, Hoy A and Back I. (2005) Oxford Handbook of Palliative Care. Oxford University Press, Oxford.

12.3 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: 354-60; and A Guide to Symptom Relief in Palliative Care, 6th ed. Radcliffe Medical Press, 2010)

12.4 North of England Cancer Network Palliative Care Guidelines for cancer and non-cancer patients, third edition: 2012.

12.5 Neuberger, J (Chair): More Care, Less Pathway. A Review of the Liverpool Care Pathway. Independent Review of the Liverpool Care Pathway: attachment_data/file/212450/Liverpool_Care_Pathway.pdf

12.6 Twycross R, Wilcock A (2011). Palliative Care Formulary. 4th Edition.

Ltd., Nottingham.

The Trust is committed to the fair treatment of all, regardless of age, colour, disability, ethnicity, gender, gender reassignment, nationality, race, religion or belief, responsibility for dependants, sexual orientation, trade union membership or non membership, working patterns or any other personal characteristic.  This Guideline/Protocol will be implemented consistently regardless of any such factors and all will be treated with dignity and respect. To this end, an equality impact assessment has been completed on this Guideline/Protocol/Procedure.

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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.

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.

General measures

Reassurance and support.

Gentle air flow with fan.

Cool room.

Give hourly mouth care.

Oxygen if helpful.

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.

Breathlessness Present

Risk of Breathlessness

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.

General measures

Calm environment.

Reassurance and support.

Gentle air flow with fan.

Cool room.

• Give hourly mouth care.

• Oxygen if helpful.

1)

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.

Review regularly.

Syringe driver doses should be adjusted as indicated by need for rescue medication.

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.

Breathlessness Present

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.

Risk 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)

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.

2)

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.

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).

NO

YES

Is patient already on opioid drugs?

Scenario 1: “planning ahead”

Patient not in pain

• Prescribe morphine 5mg SC hourly if needed.

• If patient later develops pain, proceed to next box.

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.

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 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.

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.

Review regularly and adjust as above.

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 s-c up to hourly if needed

If pain is controlled, make no changes.

Continue to review regularly

Patient with patches for pain relief

(Fentanyl, Buprenorphine)

• See CFDP Clinical Guideline 8)

NO

YES

Is patient already on opioid drugs?

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.

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.

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 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.

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 1/10th of syringe driver alfentanil dose to be given SC up to hourly if needed (with a minimum rescue dose of alfentanil 250micrograms)

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.

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 with patches for pain relief

(Fentanyl, Buprenorphine): see CFDP Clinical Guideline 8)

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.

a)

When managing a patient with renal failure and alfentanil is unavailable, please seek specialist advice. Alternative options include fentanyl, hydromorphone and sometimes oxycodone.

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 not restless / agitated

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

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)

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.

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.

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 absent

Secretions present

General management

• Give explanation and reassurance to relatives.

• Alter position to shift secretions.

• Consider stopping parenteral fluids.

• Give hourly mouth care.

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.

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

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.

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 on tablets and / or insulin

Type 2 diabetes

Diet controlled

Type 1 diabetes

Either

Stop oral hypoglycaemics Consider stopping insulin depending on dose (a)

Stop monitoring blood sugars.

Continue once daily long acting insulin analogue Glargine (Lantus®) with reduction in dose (b)

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®)

• 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.

a. 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.

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Guideline Reference and

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