1. Dr Helen Morrison Beatson West of Scotland Cancer Centre
Communicating Dying
Dr Helen Morrison
Beatson West of Scotland Cancer Centre

2. Objectives Why good communication of dying is necessary
When things go wrong
Current guidance on EOLC
Recognising Dying
Communication around the process of dying
Symptom management

3. Consequences of Poor Communication
Patients Confusion & indecision
Unrealistic expectations
Missed opportunities
Poorer quality of life
Inadequate symptom relief
Relatives Impact on Bereavement
Guilt
Professionals Depersonalised care
Burnout

6. What went wrong? NICE
Recognition of dying not always supported by an experienced clinician, and not reliably renewed.
Patients unduly sedated as a result of injudiciously prescribed symptom control medication.
Perception that hydration and some essential medication was withheld or withdrawn leading to negative effects.

8. More Care Less Pathway 2013
LCP worked well for many – clinicians would prefer such an approach for themselves
Reports of poor treatment especially in the acute sector
LCP became a “tick box exercise” where care already poor
Communication a major issue for relatives – felt “rail-roaded”
Need to treat patients with respect
Need for a national conversation about dying

9. More Care Less Pathway Diagnosis of Dying Decision Making
Involvement in care plan
Hydration & Nutrition
Sedation & Pain Management
CPR
Ethical issues
Care with Compassion
End of Life Care Plan – documented & individualised
Communication

11. Dying Without Dignity 2015 Key themes
Failure to recognise people are dying and respond to their needs
Poor symptom control
Poor communication
Inadequate out of hours services
Poor care planning
Delays in diagnosis & referral for treatment

13. 5 Priorities of Care
Possibility a person may die in the next few hours/ days is recognised and communicated, decisions made and action taken in accordance with needs.
Sensitive communication with patient about what is important to them.
Dying person and those important to them are involved in decision making.
Needs of families and important others identified
Individual plan of care

15. Communication Establish communication needs
Identify the most appropriate team member to explain prognosis
Discuss prognosis, if recognised to be in last days, unless they don’t want to.
Provide accurate information on prognosis, explaining uncertainty but avoiding false optimism.
Explore understanding and preferences about care.
Discuss with the multi-professional team

17. National Statement Scotland December 2013
Informative, timely and sensitive communication as an essential component of each individual’s care.
Significant decisions , including diagnosing dying, are made on the basis of a multidisciplinary discussion.
Each person’s physical, psychological, social and spiritual needs are recognised and addressed.
Consideration given to the wellbeing of relatives/ carers.

19. Barriers to communication at End of Life
Uncertainty about prognosis
Late discussions
Worry about removing hope/ relationships with patients
Death seen as a failure
Societal issues
Education
Undergraduates and junior doctors
Nursing
AHP

20. National Conversation
Majority don’t have significant conversations
83% public uncomfortable discussing dying
51% unaware of EOLC wishes of a partner
36% have written a will
6% have written preferences for funerals
1 in 4 GPs never initiated conversation about EOLC wishes

21. National Conversation
Dyingmatters.org
Guardian
BMJ
More Care Less Pathway
King’s Fund
Church of England

22. Recognising Dying More than half a million die in the UK each year
Most deaths in hospital
Most deaths predictable after a period of chronic illness
Need for involvement of senior clinician and multidisciplinary team.
Recognise uncertainty so plan to review.

24. Recognising Dying Sleepiness Not eating/ drinking
Little or no swallow reflex
Breathing changes
Skin colour changes
Agitation/ Restlessness
Continence

25. EOL Communication
Open, honest and consistent communication with relatives and patient if possible
Acknowledge uncertainty
Where there is uncertainty plan to review situation
Address
DNACPR
Preferred Place of Care
Advanced Care Planning
Will / Power of Attorney

28. EOL Communication
Address physical, psychological, social and spiritual needs.
Symptom management
Hydration & Nutrition
Assess well-being of relatives/ carers
Regular discussion and review of decision making
Keep relatives updated about changes in patient’s condition or management plan.

29. Communicating Changes
Sleepiness
Progression to unconsciousness
Eating/ Drinking
Loss of appetite
Not needing nutrition
Balance risks & benefits of giving food/ fluids
Assess hydration needs
Swallow reflex
Fluids/ Medication

30. Communicating Changes 2
Breathing
Shallower, pauses, secretions
Skin changes
Cyanosis / mottling/ clamminess
Agitation/ restlessness
Calmness & reassurance
Acknowledge distress caused
Explain use of sedation

31. Communicating Changes 3
Continence
Loss of control
Reduced urine volumes & dark urine
Assess need for catheter
End of Life
Body relaxes & jaw may open
Last breath may sound like a sigh

32. Communication at end of life Hospital/ Hospice
Little things matter
Make families/ relatives feel welcome
Encourage them to create familiar environment
Assume patients can hear everything
Consider access, parking and food out of hours
Carers/ Relatives don’t have the burden of providing care.

33. Supporting carers/ Relatives Home
Prepare to put life on hold
Feel like you are walking in a bubble
Talk about how you are feeling
Accept help
Be prepared for family dynamics
Discuss who to contact
Emergency situations

34. Symptom Management

35. Pain Opioid Naive – prescribe PRN Morphine 2mg SC
Commence Syringe driver if needing more than 2-3 doses in 24 hours (10mg)
If on opioids convert to syringe driver (half the oral dose)
Ensure sufficient morphine in house for as required doses

36. Terminal Agitation Can be distressing for relatives and staff
Reassurance and explanation required
Generally sedation is required
May need to escalate doses rapidly
Midazolam
5mg stat doses and can increase to 10mg
10mg via CSCI and titrate
Can give 60 – 80mg via CSCI

37. Terminal Agitation Levomepromazine PRN doses 5 – 25mg CSCI 10 – 200mg
Phenobarbitone
Specialist advice
Stat dose 200mg IM
800 – 1600mg via CSCI
Requires 1: 5 dilution so may need second CSCI

38. Secretions 30 – 50 % patients Can be distressing for relatives
Secretions in hypopharynx
Reassurance
Positional change
Suction
Medication

39. Secretions - Medication
Hyoscine Butylbromide
20 mg SC PRN
CSCI 60 – 120 mg
Glycopyrronium
0.2 – 0.4 mg SC PRN
CSCI 0.6 – 1.2mg

40. Assisted Hydration Regarded in law as medical treatment
Viewed by public as part of basic nurture
Need to listen to views of patients/ carers
Potential benefits
Potential burdens/ risks
If not thought clinically appropriate don’t have to provide it
Treatment and care towards the end of life, GMC

41. Questions ?