ST 2
PALLIATIVE CARE & ETHICS
www.palliativecareggc.org.uk
www.nhslanarkshire.org.uk/services/palliativecare/
Niall Cameron
Rosalie Dunn
Elayne Harris
Euan Paterson
Palliative Care and Ethics
09:00
Diagnosing dying / Anticipatory Care Planning
10:15
Do Not Attempt Cardio-Pulmonary Resuscitation – key issues & approach
11:00
Coffee / Tea
11:15
End of Life Ethics
12:30
Dining with death!
13:30
Symptom Relief in Palliative Care
14:45
Coffee / Tea
15:00
The ‘Good Death’
16:30
Feedback / Close
Some all too common problems…
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The ‘sudden’ deterioration
What does the patient know / think / want?
What do the family know / think / want?
Lack of medication
Blue light ‘999’ at end of life
Who knows what?
The weekend catastrophe
The ‘bad’ death…
…and then 4 hours to confirm it happened!
Anticipatory Care Planning (ACP)
• What is it?
• Why is it (possibly) more important in palliative care?
• Which patients is it for?
Which patients is it for?
’Marla doesn’t have testicular cancer. Marla doesn’t
have Tb. She isn’t dying.
Okay in that brainy brain-food philosophy way, we’re all
dying, but Marla isn’t dying the way Chloe is dying’
Chuck Palahniuk - Fight Club
Numbers and Trajectories
Function
High
Function
High
Cancer
Death
Low
Death
Low
Months or years
Weeks to years
Organ failure
GP has 20
deaths per
list of 2000
patients per
year
5
2
Acute
6
Function
High
7
Death
Low
Many years
Dementia, frailty and decline
Diagnosing dying
• What primary disease do they suffer from?
• How are they at this moment?
• How rapidly are they changing?
• Would you be surprised…?
Which patients is it for?
• Patients with supportive / palliative care needs
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Whoever YOU feel should be included!
Palliative care register
GSF register
SPICT / GSFS prognostication guidance?
Chronic disease registers?
Care Home patients??
Housebound patients???
Anticipatory Care Planning (ACP)
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What is it?
Why is it (possibly) more important in palliative care?
Which patients is it for?
What does it entail?
Anticipatory Care Planning
Advance Care Planning
Legal
Welfare Power of
Attorney
Advance Statement
Continuing Power of
Attorney
1 Statement of values
2 Preferences &
priorities
3 Advance decision to
refuse treatment
4 Who else to
consult
Guardianship
Medical
Personal
Thinking ahead &
making plans
SPAR
Potential Problems
DNA CPR
Lanarkshire
Home Care
SPAR
Pack
GSFS
Just in Case
ePCS
Liverpool Care
Pathway
DN Verification of
Death
Anticipatory Care Planning
Legal
• Capacity
– Welfare Power of Attorney
– Continuing Power of Attorney
– Guardianship
• Consent
– To record
– To transfer
• Advance decision to refuse treatment
Clinical
• Consideration of potential problems
- What is likely to happen to THIS patient
- What might happen to THIS patient
• DNACPR
• Just in Case
- Proactive prescribing
• DN Verification of Expected Death
• Liverpool Care Pathway for the Dying
• Bereavement
Patient / Personal
• Preferred priorities of care
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Place of care
Place of death
Admission?
Aggressiveness of treatment
• What is wanted
• What is not wanted
– Who is to be involved
The views and wishes of patient / carer
• ‘My thinking ahead and making plans’
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What’s important to me just now
Planning ahead
Looking after me well
My concerns
Other important things
Things I want to know more about e.g. CPR
Keeping track
Developed from work by Professor Scott Murray & Dr Kirsty Boyd, University of Edinburgh
Advance statement
• Statement of values
- E.g. what makes life worth living
• What patient wishes
- E.g. place of care, aggressiveness of treatment
• What patient does not want
- E.g. PEG feeding, SC fluids, CPR
• Who they would wish consulted
Anticipatory Care Planning (ACP)
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What is it?
Why is it (possibly) more important in palliative care?
Which patients is it for?
What does it entail?
What is the process?
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When should this be done?
Who should do it?
How should it be done?
How should it be shared?
ACP Process
• When should this be done?
– At any time in life that seems appropriate
– Continuously
• Who should do it?
– By anyone with an appropriate relationship!
• How should it be done?
– My Thinking Ahead & Making Plans
– Carefully
– Write it down
• How can it be shared?
– ePCS
– Other communication
What is ePCS for?
• Information transfer
– ‘In Hours’ GP > OOH
– Primary Care > A&E / Acute Receiving Units
– Primary Care > Scottish Ambulance Service
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Prompts for proactive care
Anticipatory Care Planning
All data stored in one place
Structure for lists / meetings / etc
Palliative care DES
What does ePCS contain?
• Information upload
– Palliative Care review date
– Consent to share information
• Current situation
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Diagnoses
Key personnel involved
Carer details
Current treatment
• Repeat
• Last 30 days Acute
– Patient & carer understanding
• Diagnosis & Prognosis
What does ePCS contain?
• Future Care Plan
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Patient wishes (VISION)
Preferred Place of Care
Resuscitation status
Additional drugs in house (Just in Case)
Advice for OOH GP e.g.
• Contact own GP OOH
• GP willingness to sign death certificate
– Additional OOH information (KEY section) e.g.
• Patient wishes
• Starting Liverpool Care Pathway
• Etc…
The ACP Checklist
• Capacity
– Power of Attorney / Possible future problems?
• Have we considered
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What is likely & what might happen to this patient?
Where the patient would like to be cared for?
CPR / DNACPR?
OOH information transfer (ePCS)
• Have we considered the possible need for
– Anticipatory prescribing (Just in Case)
– RN Verification of Expected Death
– The Liverpool Care Pathway for the Dying
• The patient / carer view
– My Thinking Ahead & Making Plans…
DNACPR
- Key Issues & Approach
DNACPR – Key Issues
• Consider
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The fundamentals
The framework
The decision making process
The patient / family view
Legal aspects
DNACPR – Fundamentals
• The decision to offer CPR is a medical one
• Nothing to do with ‘quality of life’
• If CPR is likely to be futile do not offer it
DNA CPR – Framework
• Is the patient at risk of a cardiopulmonary arrest?
• Decision making
- CPR is unlikely to be successful due to:
- The likely outcome of successful CPR would not be of
overall benefit to the patient
• decided with patient
• decided with legally appointed...
• ...basis of overall benefit...
– CPR is not in accord with a valid advance healthcare
directive/decision (living will) which is applicable to the
current circumstances
DNA CPR – Decision making
• Is CPR realistically likely to succeed?
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What do we mean by ‘success’?
Population that we are considering
Facilities available
People available
CPR – Decision
• What you think / what patient wants
– You think possible / patient doesn’t want CPR
• Simple
– You think possible / patient wants CPR
• Complicated
– You think futile / patient doesn’t want CPR
• Simple
– You think futile / patient wants CPR
• Complex
DNACPR – patient / family / legal issues
• Patient / family view is only relevant if CPR is a
treatment option
• If success anticipated – discussion needed
• If success not anticipated – inform patient
• Relatives should not be asked to ‘decide’ unless
patient lacks capacity & legally empowered to do so
• Communicate sensitively!
DNACPR – Approach
• Consider
– When you have done this
• What worked well?
• What didn’t?!
– How to raise the subject
– When to raise the subject
– Practicalities
Introducing the subject of DNACPR
• Communication
• Breaking bad news
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Narrowing the information / knowledge gap
We know something we think they need to know!
How much do they actually know?
How much more, if any, do they want to know
When do they want to know
Who do they want to tell them
The ‘bad’ news
• What we feel we need to cover
– Whether CPR should be offered or not
– If ‘futile’ patient / loved ones need to know this
– If ‘not futile’ then we need to know what patient wants
Getting CPR raised
• By patient and carer
– Spontaneously
– Prompted
• Another professional e.g. the hospital said…
• ‘My Thinking Ahead & Making Plans’
Getting CPR raised
• By us (vague…)
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How do you feel you are doing?
Where would you like to be cared for?
And if things got worse…?
How do you see the future?
Are there any things you’d like to avoid?
Etc etc etc…
Getting CPR raised
• By us (more pushy…)
– If you’re really keen to be kept at home then
• What to do if there was a sudden change in your
condition
• What to do if your heart was to stop
CPR – the subject matter
• General
– What it means
• Allow a natural death
– Likelihood of success
– Whether ‘people’ would wish it
• Individual
– In your case…
• ‘Fine line’
– Awareness raising, BUT
– Clinical decision has already been made
What DNACPR is not about
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Anything other than CPR
Any other treatments e.g. antibiotics
Feeding
Fluids
• Highlight everything else that we can still do
Patient centred supportive care
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What’s the most important thing in your life right now?
What helps you keep going?
How do you see the future?
What is your greatest worry or concern?
Are there ever times when you feel down?
If things get worse, where would you like to be cared
for?
Professor Scott Murray, University of Edinburgh
DNA CPR – Practicalities
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Completing the DNACPR form
Where should form be kept
When to update form
Patient transfer
DNA CPR – Practicalities
• Communication
– Patients home
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Patient
Family / loved ones
OOH Services
Scottish Ambulance Service
Others?
Discussion