GP ST 1&2
PALLIATIVE CARE & ETHICS
Niall Cameron
Rosalie Dunn
Carolyn Mackay
Euan Paterson
Palliative Care and Ethics
09:00
Palliative care – Planning in an uncertain world
11:30
Coffee / Tea
12:00
Symptom Relief in Palliative Care
12:45
Dining with death!
13:30
End of Life Ethics
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!
Who are we talking about?
• What cohort of patients do YOU think we are talking
about?
Who is WHO talking about?
‘Palliative care is an approach that improves the quality of life of
patients and their families facing the problem associated with
life-threatening illness, through the prevention and relief of
suffering by means of early identification and impeccable
assessment and treatment of pain and other problems, physical,
psychosocial and spiritual.’
World Health Organisation
Who is Chuck talking about?
’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
Who are we talking about?
• Probability / possibility
• Uncertainty
• What about…
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Renal failure / dialysis
Advanced lung cancer
COPD
93 year old / multi-morbidity / dementia
Who are we talking about?
• Probability / possibility
• Uncertainty
• What about…
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Renal failure / dialysis / decision taken to stop dialysis
Advanced lung cancer / semi-conscious / no fluids
COPD / chest infection
93 year old / multi-morbidity / dementia / UTI
How do we decide?
• Consider ‘dying’ as a possibility!
• What primary disease do they suffer from?
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
• Personal trajectory
– How are they at this moment?
– How were they?
– How rapidly are they changing?
• Would you be surprised…?
Who are we talking about?
• Patients with supportive / palliative care needs
• Whoever YOU feel should be included!
• And consider:
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Palliative care register
GSF register
SPICT / GSFS prognostication guidance?
Chronic disease registers?
Care Home patients??
Housebound patients???
The 9 Cs
C1
C2
C3
C4
C5
C6
C7
C8
C9
Consider dying as a possibility
Competence
Compassion
Capacity
Communication
Care planning
Ceilings
Current needs
Care in the last stages of life
C 1 – Consider dying as a possibility
• The last dozen slides…
C 2 – Competence
• Your own!
• Do you have enough knowledge & skills?
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Diagnostic accuracy
Knowledge of condition, natural history, interventions
Communication skills
• Do you have enough experience?
• Do you need help?
• Who can you get help from?
C 3 – Compassion
• Show that you care!
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Be polite and courteous
Make it personal
Show interest
Add ‘little touches’ / Unbidden Acts of Human Kindness(!)
Give your time (even when you have very little!)
Empathy & Compassion
C 4 – Capacity
• Does the patient have capacity?
• If not do they have a legally appointed
representative e.g. PoA or Guardian?
• Other medico-legal aspects
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Consent (KIS / ePCS)
Advance decision to refuse treatment
C 5 – Communication
• Who needs to know?
• What do they need to know?
• How?
C 5 – Communication
• Who needs to know?
- Patient / family / loved ones
- Colleagues e.g. Partners, Nurses, OOH, SAS, Acute,
Specialists
• What do they need to know?
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Possibility / probability of death
Prognostic uncertainty
What the plans are
That you care!
• How?
- In person, telephone, KIS
C 6 – (Anticipatory) Care Planning
• Plan A
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Active treatment aimed at recovery
• Plan B
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Active treatment aimed at a good and dignified death
C 7 – Ceilings of treatment / intervention
• What are the ceilings? E.g.
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Transplant
Admission / transfer
Dialysis / ventilation / cardiac devices(!)
CPR
Surgery / drug therapy
Antibiotics (and route)
Nutritional support
Hydration (including S/C fluids)
C 8 – Current needs
• Physical
- Symptom relief
- Bowel / bladder care
- Oral care
• Psychological
• Personal
- Social
- Spiritual (the inner self)
C 6 – (Anticipatory) Care Planning
• Plan B
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Probable / Possible
Prescribing
• Rationalise medications
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What is essential
What is not needed
What to do with those in between
Just in Case
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What might be needed / Route of administration
- Processes
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DN VoED
DNACPR
End of Life Care Plan
DNACPR
DNACPR – Fundamentals
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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
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
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
Introducing the subject of DNACPR
• Communication
• Breaking bad news
– Narrowing the information / knowledge gap
– We know something we think they need to know!
• E.g. CPR futile or CPR not futile and do they want it
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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
Discussing DNACPR
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Know the patient and their context
Be clear about benefit/burden balance of CPR (Rx)
Consider benefit/burden balance of discussion
Consider who should discuss
Consider when to discuss
Discussion on CPR should be part of wider discussion
Often less difficult earlier in disease
Small chunks and check… (BBN)
Aim is to Allow a Natural Death
Compassion!
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 (in the course of a discussion)
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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?
C 9 – Care in the Last Stages of Life
• Care checklist
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Review ceilings of treatment / intervention
Review medication
Review hydration
Review current needs
Plan for death
• Communication
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Does everyone know that now just Plan B?
• Compassion (yet again!)
C 6 – (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
KIS / ePCS
DN Verification of
Expected Death
End of Life Care Plan
(LCP)
Anticipatory Care Planning
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
ACP Process
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When should this be done?
Who should do it?
How should it be done?
How can 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?
– KIS / (ePCS)
– Other communication
Which patients is KIS for?
• Not just palliative care!
• 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???
What is KIS for?
• Information transfer
– In Hours GP to OOH GP
– Primary Care to A&E / Acute Receiving Units
– Primary Care to 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 KIS contain?
0 : Consent
1 : Demographics
2 : Current situation
3 : Care & Support
4 : Resuscitation & Preferred Place of Care
ePCS
What does KIS contain?
0 : Consent
• KIS Upload decision
• Patient consented?
These two are essential for data upload
• Apply Special Note
• KIS Review date
What does KIS contain?
1 : Demographics
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Patient Details
Practice Details
Usual GP
Patients Emergency Contact Number
Carers
Next of Kin
Access Information
Agency Contacts
What does KIS contain?
2 : Current Situation
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Medical History
Self Management Plan
Anticipatory Care Plan
Single Shared Assessment
Oxygen
Additional Drugs Available at Home
Catheter and Continence Equipment at Home
What does KIS contain?
3 : Care & Support
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Moving and Handling Equipment at Home
Adults with incapacity Form
Guardianship with Welfare Decision Making Powers
Power of Attorney
What does KIS contain?
4 : Resuscitation & Preferred Place of Care
• Preferred Place of Care
• DNACPR
• Form in place
What does KIS contain?
ePCS
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Consent for Electronic Transfer to ePCS Services
Care at Home (basically presence of syringe pump)
OOH arrangements
GP OOH Contact Number(s)
Patient’s Understanding
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 (KIS/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…
Knowledge
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Skills
K
S
Attitudes
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A