1. Care in Last Days of Life East Lancashire Hospice
Dr Elizabeth Bailey
Medical Director
East Lancashire Hospice
WL/July 2013

2. Learning Outcomes To be more confident in recognising dying
To increase knowledge of management of common symptoms at end of life
To increase understanding of the clinical scenarios where using a syringe pump is helpful
To increase knowledge of factors to consider when using a syringe pump
To know about complications from using a syringe pump and how these can be managed
To be able to plan care for a dying person guided by the 5 priorities for care in the last days of life

3. North West End of Life Care Model
‘care in last days of life
5 priority areas
Last Days of Life
First Days after Death
1 year
1 year and beyond
Advancing disease
Bereavement
6 months 1 2 3 5
The North West End of Life Care Model 4
Death
Increasing decline
‘Rapid Discharge Pathway’ (RDP)
Advance Care Planning
‘Preferred Priorities for Care’
‘Gold Standards Framework’ (GSF)
End of
Life Care
Tools

4. Recognising dying Is very difficult!
Important to exclude potentially reversible causes of the patient’s deterioration – sepsis, spinal cord compression, hypercalcaemia, pathological fracture etc – clues are in the history and your assessment of the patient
Recognising the key signs and symptoms of dying is an important clinical skill – can mimic potentially reversible problems e.g. drug side effects
The dying phase for cancer patients can sometimes be precipitous—eg massive haemorrhage—but is usually preceded by a gradual deterioration in functional status
This predictability of the dying phase is not always as clear in other chronic incurable diseases

5. Recognising dying Deterioration in overall clinical condition
Reduced fluid and food intake
Weakness and fatigue
Spending more time in bed
Needing more help
Changes in consciousness levels
Extent of disease (scan reports, oncology letters etc)
Some assessment tools may help – Australia Modified Karnofsky Performance Status (AKPS)

6. AUSTRALIA MODIFIED KARNOFSKY PERFORMANCE STATUS (AKPS)
AKPS Score
Description of performance status
100%
Normal, no complaints, no evidence of disease
90%
Able to carry on normal activity, minor signs or symptoms of disease
80%
Normal activity with effort, some signs or symptoms of disease
70%
Cares for self but unable to carry on normal activity or to do active work
60%
Able to care for most needs but requires occasional assistance
50%
Considerable assistance and frequent medical care required
40%
In bed more than 50% of time
30%
Almost completely bed bound
20%
Totally bedfast and requiring considerable nursing care by professionals and/or family
!0%
Comatose or barely arousable, unable to care for self, requires equivalent of institutional or hospital care, disease may be progressing rapidly 0%
Dead

7. Recognising dying Ask yourself:
In the context of this patients underlying disease and co-morbidities, is what I am seeing now expected?
YES
What information do I have to support this?
History from patient, family, EMIS record, Colleague observations/discussion, Palliative Care CNS etc NO
Is there a potentially reversible cause for what I am seeing? E.g. sepsis, MSCC, pathological fracture
Is transfer to hospital appropriate?

8. Recognising dying
The most important element in recognising dying is that the members of the multi-professional team caring for the patient agree that the patient is likely to die soon (GP, DN, CNS etc)
Disagreement may result in mixed messages and opposing goals of care resulting in poor patient management and confused communication
Communication with the patient and his/her family is important
WL/July 2013

9. Recognising dying
Serious consequences of not talking about imminent death:
Family is in shock
Missed opportunities to say goodbye
Complicated grief
Patient may be admitted to hospital inappropriately
Patient’s wishes not met

10. Important Decisions to Make
Is there a potentially reversible cause of the deterioration for which active treatment (at home or in hospital) is appropriate?
Preferred place of death
Who is providing care?
What support do they need?
Who can give it?
DNA CPR if not already made
Wishes regarding tissue donation if not already discussed as part of advance care plan

11. DNACPR
DNACPR decision when a person is in the last days of life is a medical decision
The patient (if able) and family must be informed of the decision – the reasons why it has been made
The patient and the family do not have a choice about the decision because there is certainty that CPR would not work
Conversations around DNACPR need to be sensitive – it’s like breaking bad news
Stress that we are aiming for a peaceful natural death

12. Tissue Donation
People with long term conditions including cancer can donate tissue after their death
Skin, eyes, bone, heart valves, tendons can all be donated
People registered as organ donors are automatically also registered as tissue donors
People can register at any time
Encourage person to inform their relatives and document in their advance care plan
Referral centre will ask for information about age, diagnosis and brief history – they will tell you if the person is suitable and what can be donated – rare to be turned down

13. Tissue Donation
After death, relatives must give consent even if the person was on the register or previously expressed an interest
It is very important families are given the opportunity of donation at a time where everything else seems to have been taken out of their hands and they have no control
Donation is a positive act of giving during an otherwise tragic situation
Families should feel able to say ‘YES’ or ‘NO’ (and this is perfectly ok)

15. Care in Last Days of Life
Overview
Patients thought to be in their last hours/days of life are cared for with kindness, compassion and competence in a way that is focused around the individual, in line with their needs and preferences and developed with them, wherever possible and /or their family

16. delivered with compassion

17. NICE Guidance “Care of dying adults in the last days of life” December 2015
Very similar recommendations
Regular review
Individualised care
Anticipatory medications (individualised)
Communication emphasised
Hydration specifically covered

18. Care in Last Days of Life
Maintain excellent basic care - frequent assessment, action and review
Regular mouth care and assessment of hygiene needs
Turning for comfort as appropriate
Encourage and support oral food/drink as patient is able
Check bladder and bowel function - consider catheterisation

19. Care in Last Days of Life
Re-evaluate daily
No improvement - patient assessed as still imminently dying
Continue care as above
Patient's condition has improved - patient assessed as no longer dying
Explore patient's understanding and wishes for treatment and care
Redefine ceiling of care if appropriate

20. Care in Last Days of Life
Only medicines which will control or prevent distressing symptoms should be prescribed
Discontinue medicines no longer essential
Prescribe medication for new symptoms which may arise
Consider route of administration when patient unable to take oral medication:
Prn subcutaneous injections
Syringe pump
Rectal

21. Use of Syringe Pump
Discuss with patient (if able) and carers before syringe pump might be needed
If this is not done, families may blame the syringe pump for a rapid deterioration
Explain that using syringe pump is just switching to an alternative route of medicine administration – not a way to escalate dose
Not all dying people need a syringe pump – if thought to be within hours of death, intermittent prn sc injections may be sufficient

22. Use of Syringe Pump Effective method of drug administration
Less invasive than IV (or rectal)
Not just for symptom control in last days of life
For patients who:
Are unable to take medications orally as a result of persistent nausea, vomiting, dysphagia, severe weakness or unconsciousness, head and neck surgery, bowel obstruction
Are unable to absorb oral medications
Are unwilling to take medicines by mouth

23. Syringe pump: advantages
Increased comfort as repeated injections are not required
Control of multiple symptoms with a combination of drugs
Round-the-clock comfort because plasma drug concentrations are maintained without peaks and troughs, giving constant therapeutic drug levels over a 24-hour period

24. Syringe pump: advantages
Mobility maintained because the device is lightweight and can be worn in a holster under or over clothes
Generally needs to be loaded only once every 24 hours

25. Syringe pump: disadvantages
Staff training
Possible inflammation and pain at the infusion site and potential source of infection
In emaciated patients or those on long-term infusions skin-site availability may become a problem
Lack of reliable compatibility data for some mixtures of medications
Daily visits from district nurses and other health professionals might be too intrusive for some patients and family

26. Prescribing csci The prescription should specify:
The dose of each drug to be administered over the infusion period (usually 24 hours)
The diluent
The final volume of the infusion
Compatibility of the drugs to be used should be confirmed before the pump is set up

27. Syringe Pump – when to start
It takes a few hours for the drugs are sufficiently absorbed for an effect to be seen
If symptoms are uncontrolled, set up the pump immediately
It may be necessary to cover the lag time with stat doses of the relevant drugs

28. Syringe Pump – when to start
If patient on MR opioid, start syringe pump up to 4 hours before the oral dose would be due
If pump needed to control other symptoms and patient has taken MR opioid, start the pump with other drugs and refill with the opioid when next oral dose due

29. Syringe Pump Drugs
For most drugs, this route of administration is ‘off label’
Extensive documented clinical experience of csci with many drugs used in palliative care
The injectable formulation must be of a suitable concentration to deliver the required dose in a relatively small volume
The risk of local irritation is increased when injectable formulations have a pH <2 or >11

30. Syringe Pump Drugs
Drugs in syringe pumps are generally prepared with a diluent - commonly water for injection, or sodium chloride 0.9%
This dilutes the drug to minimise site reactions and enables it to be given over a set period
The diluent used should be compatible with the drug e.g cyclizine needs water, octreotide needs saline
The diluent may change depending on the dose/concentration of the drug

31. Syringe Pump Drugs
If a patient needs more than one drug for symptom control, the drugs need to be compatible with the diluent and with each other
If compatibility is an issue, two syringe pumps may be required
Generally no more than 3 drugs should be used in the same syringe pump
In exceptional circumstances 4 drugs can be used – seek advice from Palliative Care Helpline

32. Syringe Pump Drugs: Compatibility
Information about drug compatibilities is available in the Palliative Care Formulary and The Syringe Driver Book by Dickman
You can phone the Palliative Care Helpline and we will check for you
Also from
Click on syringe drivers in main menu on left hand side – takes you to the drug compatibility database
Click on search
Pick the drug combination from the drop down boxes
Result will show in red if reports of incompatibility
Result will show in green if reports of compatibility
Strength of evidence also shown – referenced reports/tests, single report of use
Also gives you diluent to use

33. Syringe Pump Drugs: Compatibility
Some common drugs known incompatibility:
Cyclizine and oxycodone and hyoscine butylbromide; midazolam, hyoscine butylbromide and ketorolac, midazolam and dexamethasone
If adding dexamethasone to a syringe pump always add it last
Protect the contents of the syringe from light – exposure to light can affect stability
If concerns about compatibility, consider giving long acting drugs by intermittent sc injection once or twice daily e.g dexamethasone, levomepromazine

34. Syringe Pump Drugs: Precipitation
Precipitation when mixing drugs is a sign of incompatibility
Occasionally a mixture that has been used successfully will suddenly precipitate in the middle of an infusion
It may be related to a reaction occurring in the subcutaneous tissue - once it has happened, it tends to recur in the same patient
Cyclizine is most frequently the problem

35. Syringe Pump Drugs: Precipitation
What to do:
Change the site and the whole giving set – not just the syringe
Consider different diluent
Consider alternative antiemetic/drugs, some drugs are too irritant for SC use – diazepam, stemetil, largactil
Keep away from direct sunlight or heat
Separate the drugs being given into two syringe drivers
Consider once or twice daily SC drugs

36. Syringe Pump Needle sites
The best sites to use for continuous subcutaneous infusions are:
The upper chest wall below the
clavicle
The upper arm and thigh
The abdomen
Occasionally the back

37. Syringe Pump Needle Sites
Sites to avoid are:
Lymphoedematous limbs – the subcutaneous tissues are ‘waterlogged’ with lymph fluid, which would affect absorption. There would also be increased risk of leakage or infection
Any site over a bony prominence or near a joint
The upper abdomen in a patient with an enlarged liver – there is a risk of puncturing the liver capsule
The upper chest wall in very cachectic patients – there is a risk of causing pneumothorax
Previous irradiated skin area

38. Syringe Pump Needle Site Irritation
Absorption of drugs may be impaired causing poor symptom control
Ensure needle tip is not too shallow
Try sof-set
Try a different diluent
Change irritant drugs to an alternative (e.g. cyclizine  haloperidol)
Give irritant drugs by alternative route (e.g. rectal)
Add dexamethasone 1mg to pump or hydrocortisone cream to site
GTN patch over site

39. Use of Syringe Pump
Consider what drugs need to go in the syringe pump:
Analgesic?
Antiemetic?
Sedative?
Replacement for antiepileptic drugs?
Add midazolam 10mg to syringe pump (can increase up to 60mg if necessary)
Ensure prn midazolam 5-10mg IM is also prescribed for fitting – can be repeated after minutes if required

40. Stopping the syringe pump
If the patient’s condition has stabilised and syringe pump no longer required switch back to oral medication
Take out the csci antiemetic first and give equivalent oral doses – keep the csci of other drugs going for hours
If no vomiting, switch to oral opioid:
Stop the csci at the same time as starting MR opioid
Stop the csci 12 hours after starting fentanyl or buprenorphine patch

41. Care in Last Days of Life
Common symptoms at end of life
Noisy breathing
Pain
Restlessness and agitation – terminal restlessness
Urinary incontinence/retention
Breathlessness
Dry, sore mouth
Sweating
Nausea and vomiting
Jerking, twitching
Confusion
Extreme fatigue

42. Terminal Restlessness or anxiety?
A thorough assessment is required in
order to manage this effectively.
Is the patient afraid?
Are there unresolved issues?
Is there spiritual anguish?
Are there physical causes which may be reversible?

43. Reversible Causes Hypercalcaemia Full bladder Faecal impaction
Opioid toxicity
Steroids
Hypoxia
Infection
Emotional / spiritual anguish?

44. Terminal restlessness: management
Quiet well lit room
Familiar objects
Presence of family
MDT support
Clock/calendar
Consider drug therapy
Sedation does NOT change survival time. Terminal restlessness is an indicator of impending death, sedation to manage this is not a cause of premature death

45. Terminal restlessness: management
Agitation, restlessness without confusion
Midazolam 2.5mg or 5mg sc injection 2 hourly prn
Consider syringe pump if more than 3 prn doses needed in 24 hours
Midazolam 10mg csci via syringe pump – initial 24 hour dose
Titrate dose upwards depending on response
Seek advice from palliative care helpline when 24 hour syringe pump dose reaches 30mg
Alternating prn Midazolam with prn Levomepromazine can work well in patients not settling

46. Terminal restlessness: management
Agitation, restlessness with confusion
Levomepromazine 6.25 – 12.5mg by sc injection prn CPS says 4 hourly, PCF says can give 1 hourly
mg by csci in syringe pump over 24 hours – titrate up according to response
Seek advice from palliative care helpline
Can go up to 200mg if necessary!
Midazolam and Levomepromazine together in syringe pump work well if patient not settled on one drug

47. Noisy Breathing
Due to a build up of secretions in the back of the throat which the patient is too weak to clear
Not distressing for the patient but upsets family and friends
Reassure patient’s family and friends
Give glycopyrronium 200micrograms sc stat and start csci or hyoscine hydrobromide 400micrograms sc stat
Remember that drugs used to dry up secretions will only affect the build up of new secretions not those already there so consider drug treatment early – don’t wait until secretions really bad

48. Noisy Breathing Glycopyrronium 200micrograms sc stat
600micrograms csci
Usual maximum dose 1200micrograms in 24 hours but can go up to 2400 micrograms if necessary
Does not cause agitation
Hyoscine hydrobromide
400micrograms sc stat
1200micograms csci
Maximum dose 2400micrograms in 24 hours
Can cause agitation as crosses blood/brain barrier

49. Pain in Last Days of Life
Patient often already on analgesics for pain associated with underlying illness
When patient unable to take usual oral analgesics, convert to appropriate 24 hour sc dose and deliver via csci
Add up total dose of regular (not prns) opioid in 24 hours
Divide by 2 to get the equivalent sc 24 hour dose
If pain controlled, put this dose in the pump to start when the next oral dose would be due (or within 4 hours)
If pain not controlled, increase the dose by 25-50% and put this new dose in the pump

50. Pain in Last Days of Life
Example 1: patient on morphine sulphate MR 100mg bd
= 200mg/24hours oral
Divide by 2 = 100mg sc dose in 24 hours
If patient’s pain is controlled put 100mg morphine in syringe pump
If patient in pain, increase dose by 25-50% depending on how many prn doses used
Start syringe pump with morphine sulphate at the time the oral MR dose is due
Recalculate the prn sc morphine dose (1/6 of 24 hour dose)

51. Pain in Last Days of Life
Patient already on Fentanyl or Buprenorphine patch for pain associated with underlying illness
When patient in pain and needing to take frequent prn doses of IR morphine or oxycodone, increasing the patch dose will take too long to ‘kick in’
Deliver additional regular opioid via a syringe pump
Keep the patch on and remember to change it when due
Put 25-50% of the patch morphine or oxycodone equivalent dose in the pump depending on how many prn doses needed in 24 hours
Recalculate the IR opioid prn dose (patch sc equivalent dose + pump dose divided by 6 = prn sc dose x 2 for oral dose)

52. Pain in Last Days of Life
Example 2:
Patient is on fentanyl ‘25’ patch and prn oral morphine IR 10mg
If pain controlled, morphine in syringe pump not needed – continue with fentanyl patch and prn sc morphine (half of oral dose)
If pain not controlled, keep the fentanyl patch on, calculate the equivalent dose of sc morphine and put 25-50% of this dose in the syringe pump
Recalculate the prn dose of morphine

53. Pain in Last Days of Life
Fentanyl ‘25’ patch = 60mg oral morphine in 24 hours
Divide by 2 = 30mg sc morphine in 24 hours
Patient needed 3 prn doses in previous 24 hours
Therefore put approx. 1/3 of 24 hours sc dose of morphine in the syringe pump = 10mg
New prn dose of morphine sc is = 40 divided by 6 = 5-7.5mg (round down or up to a sensible measurable dose)

54. Pain in Last Days of Life
Neuropathic analgesics will not be replaced by opioids in the syringe pump
Observe for signs of pain
Take care not to mistake moaning due to terminal restlessness and agitation for pain
If muscle spasm may be contributing to pain, midazolam in syringe pump may help
If pain difficult to control seek advice from palliative care helpline (consider clonazepam in syringe pump instead of midazolam – this has a neuropathic analgesic effect separate from its sedative muscle relaxant properties)

55. Breathlessness in last days of life
Breathlessness may be a feature of the patient’s underlying condition
Manage in same way as breathlessness before the patient is in last days of life:
Opioids
Anxiolytics
Oxygen if gives comfort
Convert oral medication into appropriate 24 hour sc dose for syringe pump when patient unable to take oral medication
If patient very distressed by breathlessness, consider sedation with midazolam – explain rationale to patient and family

56. Vomiting in last days of life
If nausea and vomiting is a feature of the patient’s underlying condition, continue the same antiemetic if this is effective in controlling symptoms
If not already on sc antiemetic, consider adding antiemetic to syringe pump when patient no longer able to take oral
Don’t forget to check compatibility of antiemetic with other drugs in syringe pump
If patient needs a drug for terminal restlessness and vomiting, consider switching to leveomepromazine which will cover both symptoms

57. Referral to others
Don’t forget how helpful discussion with colleagues can be at this time
It’s OK to phone the Palliative Care Helpline
Consider referral to hospice if symptoms difficult to manage (as long as patient consents and is fit to transfer)

58. Core drugs at end of life
Core drugs to alleviate commonest symptoms
Put in place so they are readily available when needed – important for people at home
Morphine for pain and breathlessness (oxycodone if this is the patient’s usual regular and/or prn opioid)
Levomepromazine for nausea and vomiting (alternatives are cyclizine and haloperidol)
Midazolam for restlessness and agitation (alternative is Levomepromazine)
Glycopyrronium for excessive respiratory tract secretions (alternative is Hyoscine Hydrobromide)

59. Anticipatory prescribing
Take home the ‘Anticipatory Prescribing for the Dying Person’ chart for future reference

60. Care after Death
Ensure patient’s family know what to do and who to call when the patient dies – telephone numbers etc
Timely verification and certification of death
If person is a tissue donor, gain consent from family and contact National Referral Centre
Consider family/carer involvement in care after death procedures e.g washing and dressing of deceased person
Provide practical and written information about what to do after someone has died
Inform involved clinicians
Inform family/carers of bereavement support services e.g Hospice Bereavement Support service

61. References Palliative Care Formulary 6th edition BNF
Clinical Practice Summary, North West Coast Strategic Clinical Networks, August 2017
Symptom Management in Advanced Cancer 3rd Edition by Robert Twycross and Andrew Wilcock
The Syringe Driver fourth edition by Andrew Dickman