1. Jacquie Upton Hospice at Home Lead
Priority 5 - Plan & Do. Individual plan of care delivered with compassion
Jacquie Upton
Hospice at Home Lead

2. Planning Care
Early opportunity to discuss, record and update patients wishes and preferences as apart of individualised care planning
Extent of dying persons, their families/carers wishes for involvement
Views, beliefs and values respected
Remember a person is deemed to have capacity unless proven otherwise
Individual plan of care “agreed, communicated, adhered to and regularly reviewed” by all involved

3. Assessment
Undertake a holistic assessment for end of life needs and preferences in partnership with the patient, family/carers.
Integrated approach with other health and social care professionals involved

4. Assess and respond sensitively to:
Physical needs
Emotional
Social
Psychological
Spiritual needs
Cultural and religious

5. Continual Assessment Assessment never stops!
Assessing
Assessment never stops!
Subtle changes are significant and important
Need to listen to family and carers they know their loved one
Communicate, share, record and document changes and actions taken with clear rationale so all involved have an understanding
Explanation to patient and family crucial

6. Food and Drink
There will come a point when a patient will not safely be able to eat or drink.
Informed choice - The patient may continue to try eating and drinking and risk aspiration, choking if they have capacity this needs to be respected
Family and friends understanding benefits and burdens around dehydration at the end stages of life
General Medical Council 2010 guidance – Treatment and care towards the end of life: good practice in decision making and relevant clinical guidelines.

7. Symptom Control
Southern Health and Solent NHS have medicines administration orders for Syringe drivers and PRN medication
These are supposed to be universal across the areas to minimise drug administration error
A clear rationale needs to be assessed and recorded prior to administration
Honouring of DNACPR by professionals
Referring to SPCT as needed

8. Anticipatory medications at End of Life
Anticipatory –foresee, act in advance of
Generally -only drugs needed are:
Analgesics for pain
Anti-emetics for nausea & vomiting
Anti-cholinergics for resp secretions or ‘death rattle’
Sedatives/anti-convulsants for agitation
Explain to patient and family
Important Conversations

9. Indications for a syringe driver:
Patient unable to take oral medication and has been symptomatic
Nausea and vomiting
Unable to swallow
Weakness
Confusion
Coma
Poor alimentary absorption
Medication more effective given by alt. route
Bowel obstruction

10. IMPORTANT !!!!!!
Medications need to be regularly reviewed and adjusted to give optimum effect and alleviate risk of toxicity.

11. A Symptom
Is a subjective and abnormal feeling or sensation which the patient experiences.
Is a feeling of something being 'not quite right' about one's body and is usually uncomfortable or, at least, unwanted.
May occur suddenly or be present for a while.
May occur intermittently or may become progressively worse.
A patient may experience several symptoms at the same time.
The symptom (including its severity) is something that only the patient can truly know

12. Underlying Symptoms
Several symptoms may be inter-related and by treating one you may well relieve others
A patient may be in such pain that he or she is unable to move around, and needs to take regular codeine for pain relief.
Constipation (if a laxative is not taken at the same time.)
The patient’s pain allowing them to move around more freely, thus improving their bowel movements

13. Most commonly reported symptoms…
Pain (often several types simultaneously)
Breathlessness
Nausea/vomiting
Respiratory secretions
Noisy breathing
Pressure area damage
Confusion
Agitation/restlessness
Elimination problems-Urinary incontinence/retention
Dry/sore mouth
Fatigue

14. Importance of accurate assessment
Unrelieved pain causes unnecessary harm and suffering
Pain diminishes activity, appetite, sleep and quality of life
Pain further debilitates already weakened patients
Full pain assessment/ using a pain tool validates the patients pain, helps patient to describe pain more accurately, increases the reporting
Provides understanding of the personal experience of
pain and the impact that pain
Measuring severity of pain helps to understand the effectiveness of our intervention

15. How would you assess or recognise a persons pain?

16. Assessment of Pain TOTAL PAIN Physical: Other symptoms
Adverse effects of treatment
Insomnia and chronic fatigue
Psychological:
Anger at delay in diagnosis
Anger at therapeutic failure
Disfigurement
Fears of pain
Fears of helplessness
TOTAL PAIN
Social:
Worry about family
Job + prestige loss
Loss of social status
Family role loss
Isolation
Abandonment
Spiritual:
Why has this happened to me?
Why has God allowed this?
What’s the point of it all?
Is there any meaning or purpose to this?
Can I be forgiven for past wrongdoing?
Source: Twycross & Wilcock
(2001)

17. Difficulty in going to the toilet Painful joints Painful sores
Physical
Sore mouth
Earache
Difficulty in going to the toilet
Painful joints
Painful sores
Uncut fingers or toes
Being in same position for a long time
Being moved uncomfortably
Social
Where are my family
Where are my friends
Loss of independence
Loss of confidence
Loss of social networks
Loss of role or job
Spiritual
How do I belong here?
Loss of abilities in relation to activities I love
Why me?
Emotional
Loss of home
Loss of self esteem
Loss of loved ones
Anger and frustration

18. Pain Tools
There are a variety of pain assessment tools to choose from. Here are a few
Visual Analogue Scale: patient is asked to mark a point on the line to represent the intensity of the pain from none to worst pain
Numerical Rating Scale: patient is asked to score the pain from 0 to 10 where 0 represents no pain and 10 represents worst pain
Descriptive Words Scale: a patient is asked to use a list of adjectives to describe pain intensity ranging from none to worst

19. Pain Tools The Pain Assessment in Advanced Dementia (PAINAD) Dolopus 2
A Faces Rating Scale
Abbey pain tool
Disdat

20. PPQRST Pain Assessment Tool-
Factors….
So ask…
So consider… P
Palliative
What makes it better? What improves it?
Heat pads, distraction etc.
Provokes
What makes it worse?
Movement, deep breathing. Q
Quality
What is it like? Be descriptive
Sharp, stabbing, dull, ache. R
Radiation
Does it spread? Where?
Referred pain. S
Severity
How bad is it?
How does it affect your life? T
Timing
Is there a pattern, time the pain comes on? What makes it worse
Can we change an activity to help?

21. Pain Assessment Tools

22. Pain assessment tools

24. Example

25. Summary of pain assessment
Good pain management requires the patient to give a good history of their pain
Try to optimise the patient’s own ability to report and describe pain
Take collateral histories from carers if necessary

26. Things that lower the pain threshold
Insomnia
Fatigue
Anxiety
Fear
Anger
Boredom
Sadness
Depression
Social isolation
Social abandonment

27. Pain-
Not all patients will experience pain, so be mindful of creating an expectation!

28. The WHO Analgesic Ladder

29. Starting Opioids – To gain control of the pain
Usually start with immediate release morphine Every 4 hours, 2.5mg -10mg, with the prn equal to the 4hrly dose
If using modified release morphine, give 10mg-30mgbd, depending on previous weak opioid,

30. General Principles of using Strong Opioids
Start low and titrate up
Regular dose of IR (immediate release) preparation and PRN (1/6th of total)
Prescribe a laxative – opioids nearly always cause constipation!
Watch for nausea/vomiting (usually wears off after a few days)drowsiness, confusion/hallucinations

31. Strong Opioids Morphine Diamorphine Oxycodone Fentanyl Buprenorphine
Immediate Release
Modified Release
Morphine
Liquid (Oramorph)
Tablet (Sevredol)
Injection (Morphine Sulphate)
Usually capsules but some preparations are tablets
Diamorphine
Injection
None available
Oxycodone
Liquid (Oxynorm)
Capsule (Oxynorm)
Injection (Oxynorm)
Tablets (Oxycontin)
Fentanyl
Lozenges (Actiq)
Buccal and sublingual preps
Patch – dose expressed in mcg/hr, changed every 72 hours
Buprenorphine
Sub lingual tablets
Patch – dose expressed as mcg/hr, some patches changed every 72 hours, others every week
Methadone
Liquid, tablets, Injection. Due to different pharmacokinetic properties, as stored in fat cells, no immediate release preparation

32. Oral morphine to sc morphine
Calculate daily dose of oral morphine
Divide total oral dose by 2
Sub cut morphine is 2x as strong as oral morphine
This is the equivalent daily (24hr) dose of morphine HB 32

33. Reasons for Switching Opioids
Insufficient analgesia
Cognitive impairment
Sedation
Nausea
Constipation – fentanyl and buprenorphine are less constipating
Renal impairment – morphine is excreted by the kidneys, so may accumulate in renal failure
Pruritus
Myoclonus

34. Myths about Morphine Respiratory depression
almost never a problem in cancer pain if used sensibly
Addiction
almost never a problem in cancer pain
Only for the terminal phase
definitely has a role for severe pain at any stage in the disease trajectory
Hastens death
– NOT if used appropriately and sensibly

35. signs of toxicity Drowsiness Confusion Pin point pupils
Myoclonic jerks
Nausea/vomiting
Hallucinations (auditory/visual)
Respiratory depression

36. Other Approaches Complementary therapies Acupuncture Touch/massage
Reflexology
Aromatherapy
Art therapy/music therapy
Psychological support
Reassurance
Good communication
Spiritual counselling

37. Case Scenario What happened?
Think about a time when you have witnessed someone struggling with a symptom.
What happened?

38. Agitation
What symptoms or factors can cause agitation?

39. Agitation Look for reversible cause and treat if appropriate Pain
Urinary retention
Drugs
Infection
Constipation
Haemorrhage
Anxiety
Terminal agitation
What are causes of agitation?

40. Management of Terminal Agitation
Multi-professional approach if terminal agitation need to work together as a team to manage this affectively
Assess the patient rule out what factors are exacerbating the agitation i.e. place a catheter in for retention
Listen to patients and relatives is there an opportunity to discuss anger, fear or guilt issues. Can the chaplain or their own religious leader facilitate?
Drug therapy assess which medication would be beneficial for their agitation. Rule out other symptoms such as pain or breathlessness first.

41. What medications help with terminal agitation/restlessness?
Midazolam a short acting benzodiazepine which helps to reduce anxiety and aggression, relaxes muscles, suppresses seizures and sedates.
Levomepromazine an antipsychotic which has a longer action for sedation in terminal agitation. It can act as an anti-emetic
Haloperidol an antipsychotic for agitated delirium. Also acts as a anti-emetic

42. Non-Pharmaceutical Interventions
Aromatherapy: there are certain essential oils which can aid grief and distress for both patient and family
Soothing music: enquire from patient or relatives what kind of music they like
Environment: is the room too hot or cold?
Spiritual care: does the Chaplain or Vicar need to come in to perform a religious intervention or does a figure head from another religion need consulting? “Unfinished business”
Reassurance: touch, voice, calmness, need to talk

43. Nausea & Vomiting - Key points on management
Identify the cause of nausea and vomiting
Treat the cause if possible and appropriate
Target the antiemetic to the specific cause
Use the oral route if mild nausea
Use the subcutaneous route with severe nausea, or if vomiting

44. What medications help with Nausea & Vomiting (EOL)
Haloperidol as an anti emetic (Also acts as a antipsychotic for agitated delirium) May cause jerking
Review dosage after 24hours. If two or more PRN doses given, then consider syringe driver
Levomepromazine as an anti emetic (Also acts as a antipsychotic) May cause hypotension, drowsiness, dry mouth and other anticholinergic effects
Cyclizine antihistamine with anticholinergic action (Avoid in heart failure) Can irritate the skin needs to be mixed with WATER and not Saline

45. Don’t forget… Mouth – coated tongue, candida etc
Environment – sights, smells, bad tastes, tablet burden
Anxiety - ?use of lorazepam esp. if anticipatory N&V
Memory, fears

46. Breathing - Secretions ‘Death rattle’
Try repositioning patient
Stop infusion or NG feed
Anticholinergics can reduce volume of secretions if given in time
Hyoscine Butylbromide 20mg – 120mg via syringe driver over 24 hrs, 20mgs upwards PRN
Hyoscine Hydrobromide (sedation effect) 400mcg – 2.4mg via syringe driver over 24 hrs, 400mcg sc prn
Breathlessness mg of immediate release oral morphine 4 hourly prn & titrate upwards
Explain to family – Be clear about what the “noise is”

47. Medications to consider with sensation of Breathlessness (EOL)
Environment–room temp, ventilation, reassurance
Consider whether patient is already taking oral morphine for breathlessness
If the patient is not already taking morphine ensure prn morphine Sulphate 5-10mgs or diamorphine mgs prn is prescribed
If patient is already taking morphine ensure appropriate prn dose sc morphine prescribed
Convert to syringe driver with appropriate dose morphine/diamorphine
Lorazepam 0.5-1mg S/L(quick acting)
for acute crisis and panic attacks

48. Summary : Symptoms at End of Life
Potential symptoms are multiple
Assess and ensure PRN meds available
Identify and plan care
Rule out reversible causes
Include spiritual & social assessment
Evaluate effect of any interventions
Communicate plan with Next of Kin
Always document and record rationale

49. Thank you