Care Decisions for the Last Days of Life

Please use this document to record the decisions of the clinical team and the priorities of the ADULT patient and those important to them.

This document forms part of the patient’s confidential clinical record.

GUIDANCE ON USING THIS DOCUMENT
  • It is recommended that, wherever possible, medical and nursing staff should carry out a joint clinical assessment. A senior clinician should be involved in initial decision making.
  • Discuss resulting care decisions with the patient (where practical) and those important to them.
  • Record clinical decisions / discussions on Page 2, 3 & 4.
  • Nursing care decisions should be recorded on page 4.
  • Document the agreed plan of care briefly in this document and, if needed, more fully in the patient record.
  • Refer to the Symptom Control Guidance and other supporting resources if needed.
  • Prescribe all medications in the appropriateprescription charts, as used locally.
  • Record all further decisions and progress in the patient’s clinical notes.
  • This document should be filed in the current section of the clinical case note.
  • Complete a Case Review sheet for ALL patients - see page 13.

IMPORTANT INFORMATION RELEVANT FOR THIS PATIENT
Note any key medical, nursing, social, or other information which may affect individual patient care.
IDENTIFY RESPONSIBLE CLINICIANS
Consultant/Registrar/GP responsible for the patient’s care:
Print Name:Signature:Date:
Role:
Registered Nurse responsible for the patient’s care:
Print Name:Signature:Date:
Role:
Health Care Professional (HCP) Completing the Document to sign Below
Print Name:Signature:Date:
Role:
CLINICAL ASSESSMENT Clinical team to complete
Do the clinical team agree that the patient is in the last days of life?
Please document how you reached this decision.
Have reversible causes of deterioration been considered? Yes  No 
Document agreed medical management plan, particularly with regard to further investigations, escalation of care and interventions which may be considered.
HYDRATION DECISIONS
Document any discussions and decisions regarding hydration (including the use of parenteral fluids) with the patient / those important to the patient.
NUTRITION DECISIONS
Document any discussions and decisions aboutnutrition (including artificial feeding via PEG/NG tube) with the patient / those important to the patient.
OTHER CLINICAL DECISIONS Refer to Symptom Control Guidance
Document decisions on the following:
  • Monitoring of vital signs (e.g. NHS Early Warning Scores in hospital setting)
  • Regular blood tests  Appointments or investigations
  • Management of Implantable Cardiac Device  Other
Review the Need for Current Regular Medication
Prescribe anticipatory medication - Remember the 4 As - Analgesic, Anti-emetic, Anxiolytic, Anti-secretory
CPR STATUS – NATURAL ANTICIPATED and ACCEPTED DEATH
Document any discussion with patient and those important to them about allowing natural death to occur, and complete appropriate forms (refer to fuller entries in patient record if necessary).
CORONER Clinical team to confirm
Are there any circumstances for which you need to refer to the Coroner? Yes  No 
Are other health care professionals aware of how this affects care?
Document reason and discussions with team and nominated next of kin:
VERIFICATION OF EXPECTED DEATH Clinical team to confirm
Can verification of death be carried out by a suitably trained health care professional (other than a GP or hospital doctor) according to the management of an ‘expected death’? Yes  No 
PREFERRED PLACE OF CARE
Where is the preferred place of care for this patient in the last days of life?
Is this currently being achieved? Yes No Don’t know 
If no, please comment:
ADVANCE CARE PLANNING
Has the patient expressedwishes and preferences in an Advance Care Plan (ACP) including an Advance Decision to Refuse Treatment (ADRT)? Yes  No  Don’t know 
Details:
Has the patient expressed a decision on the organ donor register? (Can check on: 0117 9757580) Yes No 
Has the patient opted in  or opted out? 
If the patient hasn’t opted out please discuss tissue donation with patient / NOK. If tissue donation is a possibility please refer to national Referral Centre for tissue donation on 0800 432 0559
Action:
PATIENT UNDERSTANDING AND PRIORITIES
Document any discussions with the patient about their awareness of dying.
Record any priorities or concerns they have/are known to have had.
UNDERSTANDING AND PRIORITIES OF THOSE IMPORTANT TO THE PATIENT
Document discussion held with those important to the patient.
What are their needs and concerns at this time? Are they aware of the facilities and support available to them?
Are they aware of what to do when death occurs?
Name of individual:
Relationship:
INDIVIDUAL PLAN OF NURSING CARE Update existing nursing care plans and risk assessments
Document agreed nursing plan.
Update existing nursing care plans and risk assessments, and consider the following:
 Communication  PRN medication  Elimination
 Symptom assessment  Mouth care Environment / Single room
 Vital signs Pressure area care  Other
CULTURAL , SPIRITUAL AND RELIGIOUS SUPPORT
Consider individual needs of the patient and those important to them.
Document actions that need to be taken.
ONGOING REVIEW Update existing nursing care plans and risk assessments
Refer to Symptom Assessment Chart
Continue to monitor symptoms such as pain, agitation, nausea and respiratory secretions.
Document nursing assessments and care plans in nursing documentation. Liaise with doctor if any concerns.
  • Identify responsible clinician to complete page 1.
  • Complete a Case Review sheet for all patients – see page 13.
  • Complete regular symptom review.
  • Discuss patient progress with the multi-disciplinary team.
  • Consult your local Specialist Palliative Care Team for further advice if required.
If the clinical situation improves and these decisions are no longer appropriate, then the clinical team should discuss an alternative medical management plan.

Care Decisions in the Last Days of Life Patient Symptom Assessment Sheet

Use this chart to record patient symptoms at the time of your assessment (at least daily). Mark each symptom ‘score’ in the appropriate section: 0 - None, 1 - Mild, 2 - Moderate, 3 - Severe, 4 – Overwhelming.

Contact doctor to review medication if symptoms severe and/or persisting.

Year: ( ) / dd/mm
Use 24 Hour Clock / Time
Alert
Drowsy/Sleepy
Difficult to rouse
Unrousable
Pain / 4
3
2
1
0
Agitation / Distress / 4
3
2
1
0
Nausea
(Score 0 if unrousable) / 4
3
2
1
0
Vomiting / Yes
No
Respiratory “rattle” / 4
3
2
1
0
Add other symptoms below to monitor
4
3
2
1
0
4
3
2
1
0
4
3
2
1
0
Initials

Care Decisions in the Last Days of Life
Patient Symptom Assessment Sheet

Use this chart to record patient symptoms at the time of your assessment (at least daily). Mark each symptom ‘score’ in the appropriate section: 0 - None, 1 - Mild, 2 - Moderate, 3 - Severe, 4 – Overwhelming.

Contact doctor to review medication if symptoms severe and/or persisting.

Year: ( ) / dd/mm
Use 24 Hour Clock / Time
Alert
Drowsy/Sleepy
Difficult to rouse
Unrousable
Pain / 4
3
2
1
0
Agitation / Distress / 4
3
2
1
0
Nausea
(Score 0 if unrousable) / 4
3
2
1
0
Vomiting / Yes
No
Respiratory “rattle” / 4
3
2
1
0
Add other symptoms below to monitor
4
3
2
1
0
4
3
2
1
0
4
3
2
1
0
Initials

Care Decisions Guidance v9 June 2018. Review June 2019Page 1 of 13

CARE DECISIONS COMMUNITY MEDICATION ADMINISTRATION RECORD

If starting a syringe driver, use the All Wales Syringe Driver Chart

Prescribe anticipatory end of life medication on this chart

Remember the 4 A’s: Analgesic, Anti-emetic, Anxiolytic, Anti-secretory

AS REQUIRED MEDICINES / DATE / TIME GIVEN / DOSE/
ROUTE / GIVEN BY / DATE / TIME GIVEN / DOSE/
ROUTE / GIVEN BY / DATE / TIME GIVEN / DOSE/
ROUTE / GIVEN BY
INDICATION
PAIN / MEDICINE (Approved name)
DOSE / ROUTE / FREQUENCY / MAX DOSE IN 24 HRS
PRESCRIBER’S SIGNATURE / DATE
INDICATION
NAUSEA /
VOMITING / MEDICINE (Approved name)
DOSE / ROUTE / FREQUENCY / MAX DOSE IN 24 HRS
PRESCRIBER’S SIGNATURE / DATE
INDICATION
ANXIETY /
DISTRESS / MEDICINE (Approved name)
DOSE / ROUTE / FREQUENCY / MAX DOSE IN 24 HRS
PRESCRIBER’S SIGNATURE / DATE
INDICATION
SECRETIONS
/ MEDICINE (Approved name)
DOSE / ROUTE / FREQUENCY / MAX DOSE IN 24 HRS
PRESCRIBER’S SIGNATURE / DATE

CARE DECISIONS COMMUNITY MEDICATION ADMINISTRATION RECORD

PATIENT’S NAME…………………………………………..

OTHER AS REQUIRED MEDICINES / DATE / TIME GIVEN / DOSE/
ROUTE / GIVEN BY / DATE / TIME GIVEN / DOSE/
ROUTE / GIVEN BY / DATE / TIME GIVEN / DOSE/
ROUTE / GIVEN BY
INDICATION / MEDICINE (Approved name)
DOSE / ROUTE / FREQUENCY / MAX DOSE IN 24 HRS
PRESCRIBER’S SIGNATURE / DATE
INDICATION / MEDICINE (Approved name)
DOSE / ROUTE / FREQUENCY / MAX DOSE IN 24 HRS
PRESCRIBER’S SIGNATURE / DATE

REGULAR MEDICATION THAT IS STILL REQUIRED IN THE LAST DAYS OF LIFE

ENTER DOSE AGAINST TIME REQUIRED. USE ONE ROUTE
ONLY FOR EACH ENTRY / REGULAR MEDICINE / MONTH / YEAR
DATE
DATE / MEDICINE (Approved Name) / SPECIAL INSTRUCTIONS / PRESCRIBER’S SIGNATURE
ROUTE /
SPECIFY TIME IF REQUIRED / DOSE / SIGN
DOSE CHANGE
Morning /
Midday
Evening
Bedtime
DATE / MEDICINE (Approved Name) / SPECIAL INSTRUCTIONS / PRESCRIBER’S SIGNATURE
ROUTE
SPECIFY TIME IF REQUIRED / DOSE / SIGN
DOSE CHANGE
Morning /
Midday
Evening
Bedtime
DATE / MEDICINE (Approved Name) / SPECIAL INSTRUCTIONS / PRESCRIBER’S SIGNATURE
ROUTE
SPECIFY TIME IF REQUIRED / DOSE / SIGN
DOSE CHANGE
Morning
Midday /
Evening
Bedtime

All Wales Guidance to

Support Carein the Last Days of Life:

Symptom Control Guidance

Commonly used PRN medicines and doses for end-of-life care

Indication / Drug / Dose / Frequency / Route
Pain / Morphine / * / 2-4 hrly / SC
Diamorphine / * / 2-4 hrly / SC
Nausea / Vomiting / Cyclizine / 50mg / 4hrly
(max 150mg/24hr ) / SC
Haloperidol / 1.25 - 1.5 mg / 4hrly / SC
Levomepromazine / 6.25 mg / 4 hrly / SC
Anxiety / Distress / Midazolam / 2.5 or 5mg / 2hrly / SC
Respiratory Secretions / Hyoscinehydrobromide / 400 micrograms / 4hrly
(max 2.4mg / 24hr) / SC
Glycopyrronium / 200 micrograms / 4hrly
(Max 1.2mg / 24hr) / SC

* Opioid prescriptions should be tailored according to the patient’s circumstances:

For a patient on regular opioid analgesics: calculate one sixth of the 24-hour dose for PRN use.

Some patients will be able to continue with oral morphine liquid.

If the oral route is no longer possible, use subcutaneous (SC) opioid analgesics. Morphine ordiamorphine can be used. Note that although similar starting doses are suggested, the two medicines are not interchangeable as they have different potency. (See conversion chart below). The choice of medicine may depend on prescriber preference or availability from the local pharmacy.

Check whether a prescription is also needed for ‘Water for injection’ for SC medications.

If a patient is opioid-naïve:
Prescribe starting dose of morphine or diamorphine 2.5mg or 5mg SC PRN 2-4 hrly. Assess effect over next 24 hours. Consider starting a syringe driver once opioid needs known. You do not need to start a syringe driver with morphine or diamorphine unless your patient has previously taken regular opioids.

To change from regular oral to SC medication

SC morphine is half the amount of oral morphine. SC diamorphine is one third the amount of oral morphine.

  • First, calculate the total dose of oral morphine (regular and PRN doses) used in previous 24 hr.
  • Then, convert to SC equivalent / 24 hours
    (eg 30mg oral morphine = 15mg SC morphine or 10mg diamorphine in 24 hours).
  • Prescribe this 24 hour SC dose to start a syringe driver (CSCI)

To calculate appropriate PRN dose: Divide the 24 hr syringe driver dose by 6.
eg: 15mg SC morphine in syringe driver over 24 hrs ÷ 6 = 2.5mg SC PRN morphine. You may need to ‘round’ up or down the PRN dose (eg 10mg SC diamorphine /24 hr ÷ 6 = 1.67, so prescribe 2.5mg SC PRN).

Always use caution when switching from one opioid to another. It can be helpful to check dose conversions with colleagues.

For patients on regular Oxycodone, use the same principles to calculate the total daily dose of oral oxycodone, then convert to the appropriate SC dose equivalent to start a syringe driver.

Calculate the PRN dose in exactly the same way as for morphine or diamorphine:

Use half to two thirds the amount of oral oxycodone for SC oxycodone. If you do not have access to oxycodone injection, use diamorphine instead. Contact your palliative care team for advice if needed.

Approximate opioid equivalent doses over 24hr

CSCI = continuous subcutaneous infusion over 24 hours

Fentanyl / Buprenorphine patches and Syringe Drivers

Fentanyl or buprenorphinetransdermal patches can continue to be used in the last few days of life.

If patient’s pain is under control:

Continue current medication i.e. fentanyl or buprenorphine patch, refreshing the patch at the prescribed frequency as previously. Prescribe diamorphine SC PRN for breakthrough pain.

If patient requires additional pain control:

Do not alter the dose of the patch, as there will be a delay before the changes are clinically apparent.

Instead, continue the same strength patch and start a syringe driver with diamorphine.

NB. Always leave the patch in situ when commencing a syringe driver.

  • Continue patch at its current dose, and add diamorphine CSCI via syringe driver.
  • Calculate syringe driver dose based on the previous 24 hr PRN requirements:
    e.g. 2 doses of oral morphine 30mg given in the last 24 hr = 60mg oral morphine / 24 hr
    = 20mg diamorphine / 24 hr CSCI via syringe driver.

Calculating breakthrough doses for patients with Fentanyl patches and syringe drivers:

  • The PRN SC diamorphine dose should be 1/6th of the total daily (24 hr) opioid used.
  • Note the approximate daily oral morphine equivalence of patch and convert this to diamorphine.
  • Add calculated diamorphine patch equivalence to diamorphine used in syringe driver for total daily opioid dose.
  • Divide the total daily opioid dose by 6 for appropriate diamorphine SC PRN breakthrough dose.

If in any doubt, contact the local Specialist Palliative Care Team for advice

Approximate opioid equivalence – Morphine/Diamorphine and Fentanyl patches

Oral morphine / SC diamorphine
(24-hour daily dose) / Fentanyl patch
(change every 72 hr)
Oral morphine 30 mg / Diamorphine SC 10mg / Fentanyl‘12’ patch
Oral morphine 60 mg / Diamorphine SC 20mg / Fentanyl‘25’ patch
Oral morphine 120 mg / Diamorphine SC 40mg / Fentanyl‘50’ patch
Oral morphine 180 mg / Diamorphine SC 60mg / Fentanyl‘75’ patch
Oral morphine 240 mg / Diamorphine SC 80mg / Fentanyl‘100’ patch

Further details available in BNF and LHB Formulary.

Nausea and Vomiting

  • Prescribe PRN medication:cyclizine 50mg SC bolus 4hrly to maximum 150mg/24hrs or

haloperidol 1.25 or 1.5mg SC PRN 4 hrly to maximum 5mg / 24 hrs or

levomepromazine 6.25mg SC PRN 4 hrly to maximum 25 mg / 24 hrs.

If patient has congestive heart failure, use haloperidol or levomepromazine, rather than cyclizine.

  • If nauseous or vomiting:

Prescribe syringe driver over 24hr with cyclizine 150mg, or haloperidol up to 5mg.

  • If problem persists:

Combine haloperidol up to 5mg with cyclizine 150mg via syringe driver over 24h or

Replace above drugs with levomepromazine 12.5mg via syringe driver over 24 hr.

Contact Specialist Palliative Care Team

  • If bowel obstruction present: contact Specialist Palliative Care Team for advice.

Restlessness, Agitation, Anxiety

  • Prescribe PRNmidazolam 2.5 or 5mg SC 2 hrly
  • If patient is restless:

Add 10mg midazolam to syringe driver over 24 hr

Give midazolam up to 5mg SC 2 hourly PRN

  • The dosage in the syringe driver can be increased if needed in 50% increments to a maximum of 30mg

in 24 hours. If patient remains restless, review for reversible causes, contact Palliative Care Team.

Noisy Breathing due to Respiratory Tract Secretions

  • Prescribe hyoscinehydrobromide 400 micrograms SC 4-hourly or glycopyrronium 200 micrograms

SC PRN 4 hourly.

  • If symptoms present:

Give hyoscinehydrobromide 400 micrograms SC bolus

Add hyoscine hydrobromide 1.2mg SC to syringe driver over 24h.

  • Alternative: Use glycopyrronium 200 micrograms SC bolus and glycopyrronium 600 micrograms SC to syringe driver/24hr.
  • If symptoms persist:

Increase hyoscine to 2.4mg (in 24h) or glycopyrronium to 1.2mg (in 24 hours).

Contact Specialist Palliative Care Team for advice.
Renal Impairment / Renal Failure and End of Life Care

Many of the medicines used for symptom control in end of life care are eliminated by the kidney to a greater or lesser degree. Morphine and diamorphine (or their active metabolites) accumulate in even modest degrees of renal impairment; great care is needed to avoid toxicity.

Renal Impairment:

  • Oxycodone is often used as an alternative to morphine/diamorphine in mild to moderate renal impairment.
  • NSAIDs can worsen renal impairment.
  • Most other drugs (used for symptom control in end of life care) can be used in renal impairment as long as the patient is regularly reviewed; consider starting with smaller doses and /or longer intervals between doses (e.g. 50% normal recommended dose).

Renal Failure:

Prescribing for end of life care in patients with end stage renal failure is complex and advice should usually be sought from the renal/palliative care specialists.

  • Consider Oxycodone 1-2mg SC PRN 4 hrly for pain.
  • Seek advice if starting syringe driver and/or pain remains a problem.
  • If treatment needs to be started for excess respiratory secretions or ‘rattle’, glycopyrronium 200 micrograms stat SC is recommended.
    If glycopyrronium is not available, consider hyoscinehydrobromide 200-400 micrograms SC.
  • For midazolam, haloperidol and levomepromazine, administer half of the usual dose subcutaneously stat.
  • Repeat doses on a PRN basis, to allow for negligible elimination of the drug.

For more information:

  • see Dr I.N.Back, Palliative Medicine Handbook , or
  • contact your local specialist palliative care team for advice:

In hours contact details:

Out of Hours Specialist Palliative Medicine Telephone Advice Line:

North Wales:01978 316800

South East Wales:02920 426000

South West Wales: 01792 703412

Shropdoc (for Powys):08444 068888

Care Decisions Guidance v9 June 2018. Review June 2019Page 1 of 13

Please complete and return this sheet for all deceased patients

This sheet is used to evidence the quality of care provided at the end

of life in Wales (with or without the use of Care Decisions guidance).

*Please complete and tick all answers that are relevant. (If no evidence exists, ‘No’ should be ticked.)

Last Days of Life Care in Wales: Individual Case Review Sheet
Health Board area:…………………………………………….
Name of org/establishment/ team reporting: ………………………………………………………………
Location/base/areateam covers (for attributing data):…………………………………………………………
Patient’s Care Setting: Own home  Residential Home  Nursing Home
 Community Hospital  Acute hospital  SPC IPU / Hospice other……………….. / About the deceased:
 Male  Female
Age or DOB:…………………
Primary diagnosis: Cancer
Non- cancer Unknown
Priority 1:The possibility that a person may die within the coming days and hours is recognised and communicated clearly, decisions about care are made in accordance with the person’s needs and wishes, and these are reviewed/revised regularly.
Recognising the dying phase:
  • Was the patient seen by a senior clinician/GP in their last days?
  • Was it documented that the team agreed the patient is likely to be in the last days or hours of life?
  • Was the CPR decision documented in notes using All Wales DNCPR form?
Recognising the patient’s needs and wishes in their last days of life:
  • Was there evidence that the patient was asked about their needs and wishes?
/  Yes  No
 Yes  No
 Yes  No
 Yes  No
Priority 2: Sensitive communication takes place between staff and the person who is dying and those important to them.
Was there documented evidence of discussions with the patient about the last days of life?
If No, was the patient unable to discuss (e.g. Dementia, confused, lacked capacity, no communication)
OR was the patient clearly stating that they did not want to discuss the issue
  • Was there documented evidence of discussion with those important to the patient regarding last days of life? If No, were there no important people identified by patient
/  Yes  No
Yes
Yes
 Yes  No
Yes
Priority 3:The dying person, and those identified as important to them,are involved in decisions about treatment and care.
  • Was the patient where they wished to be cared forin the last days of life?
If not, why not? ......
  • Were there any unplanned unscheduled admissions / ward transfers during the final days?
/  Yes  No
 Yes  No
Priority 4:The people important to the dying person are listened to and their needs are respected.
  • Was it documented that those important to the patient were made aware of the facilities (e.g. quiet space, refreshments) and support (before and after death) available to them?
  • Was it documented that those important to the patient were informed as to what to do / who to contact when death occurred?
/  Yes  No
 Yes  No
Priority 5:Care is tailored to the individual and delivered with compassion – with an individual care plan in place.
  • Was there documented evidence of physical needs assessment and action planning?
  • Was there documented evidence of psychological needs assessment?
  • Was there documented evidence of cultural, spiritual and religious needs assessment?
  • Symptom management: were appropriate as-needed (PRN) medications available in anticipation of ALL of the following symptoms: pain, nausea/vomiting, agitation and respiratory tract secretion
Other: Documentation:Were any of the following documents used?
Care Decisions guidance(4 pages)
Symptom assessment sheet(1 page)
Symptom control guidance(4 pages) /  Yes  No
 Yes  No
 Yes  No
 Yes  No
 Yes  No
 Yes  No
 Yes  No
Any further commenton care or if any aspect not fulfilled, why? / Return completed sheets to:
  • Email:
  • Post:Einir Roberts, Care Decisions Manager, Palliative Care Department, Bodfan,Eryri Hospital, Caernarfon Gwynedd. LL55 2YE
  • Fax:FAO Care Decisions Team 01286 662792

Care Decisions Guidance v9 June 2018. Review June 2019Page 1 of 13