GP ST 1

1
GP ST 12PALLIATIVE CARE ETHICS

• Rosalie Dunn
• Adam Hay
• Carolyn Mackay
• Euan Paterson

2
Palliative Care and Ethics

• 0845 Registration
• 0900 Palliative care Planning in an
  uncertain world
• 1015 Coffee / Tea
• 1030 Care in the Last Stages of Life
• 1145 Symptom Relief in Palliative Care
• 1245 Dining with death!
• 1330 End of Life Ethics
• 1445 Coffee / Tea
• 1500 The Good Death
• 1630 Feedback / Close

3
Some problems

• 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
• The failed attempt at CPR
• The weekend catastrophe
• The bad death
• and then 4 hours to confirm it happened!

4
Who are we talking about?

• What cohort of patients do YOU think we are
  talking about?

5
Who is WHO talking about?

• Palliative care is an approach that improves the
  quality of life of patients and their families
  facing the problems 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

6
Who is Chuck talking about?

• Marla doesnt have testicular cancer. Marla
  doesnt have Tb. She isnt dying.
• Okay in that brainy brain-food philosophy way,
  were all dying, but Marla isnt dying the way
  Chloe is dying
• Chuck Palahniuk - Fight Club

7
Who are we talking about?

• Probability / possibility
• Uncertainty
• What about
• Renal failure / dialysis
• Advanced lung cancer
• COPD
• 93 year old / multi-morbidity / dementia

8
Who are we talking about?

• Probability / possibility
• Uncertainty
• What about
• 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

9
How do we decide?

• Consider dying as a possibility!
• What primary disease do they suffer from?

10
Numbers and Trajectories
GP has 20 deaths per list of 2000 patients
per year
11
Diagnosing dying

• Personal trajectory
• How are they at this moment?
• How were they?
• How rapidly are they changing?
• Would you be surprised?

12
Who are we talking about?

• Patients with supportive / palliative care needs
• Whoever YOU feel should be included!
• And consider
• Palliative care register
• Gold Standards Framework register
• SPICT / GSFS prognostication guidance?
• Chronic disease registers?
• Care Home patients??
• Housebound patients???

13
(No Transcript)
14
The 10 Cs of Care of the Dying

• C 1 Consider dying as a possibility
• C 2 Competence
• C 3 Compassion
• C 4 Capacity
• C 5 Communication
• C 6 Current needs
• C 7 Ceilings of treatment and intervention
• C 8 Care planning
• C 9 Care in the last stages of life
• C 10 Continuing care

15
C 1 Consider dying as a possibility

• The last dozen slides

16
C 2 Competence

• Your own!
• Do you have enough knowledge skills?
• Diagnostic accuracy
• Knowledge of condition, natural history,
  interventions
• Communication skills
• Do you have enough experience?
• Do you need help?
• Who / where can you get help from?

17
C 3 Compassion

• Later!

18
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
• Consent (KIS / ePCS)
• Advance decision to refuse treatment

19
C 5 Communication

• Who needs to know?
• What needs to be known?
• How can we make communication better?

20
Who needs to know?

• Patient / family / loved ones
• Professionals
• e.g. Partners, Nurses, OOH, SAS, Acute,
  Specialists, Social Workers, Social Carers,
  Reception staff, Minister, Priest

21
What needs to be known by Professionals?

• Patient / family / loved ones views
• What is important to them?
• What do they want?
• What do they not want?
• Who else do they want involved?
• (Are these the same?)
• An Advance Statement

22
An Advance Statement

• Statement of values
• E.g. what makes life worth living
• What patient wishes
• E.g. aggressiveness of treatment, place of care,
  place of death, admission
• What patient does not want
• E.g. PEG feeding, SC fluids, CPR, non-admission
• Who they would wish consulted

23
What needs to be known by Professionals?

• Patient / family / loved ones views
• What is important to them?
• What do they want?
• What do they not want?
• Who else do they want involved?
• (Are these the same?)
• An Advance Statement
• All the other professional views!

24
What needs to be known by patient / family /
loved ones?

• Professional views
• Possibility / probability of death
• Prognostic uncertainty
• What we know or suspect
• What we are concerned about
• What the plans are
• (Are these the same?!)
• That you care!

25
How can we make communication better?

• Gathering
• Using our vast communication skills!
• My Thinking Ahead Making Plans (MTAMP)

26
The views and wishes of patient / carer

• My thinking ahead and making plans
• Whats 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

27
How can we make communication better?

• Gathering
• Using our vast communication skills!
• My Thinking Ahead Making Plans (MTAMP)
• Sharing
• Record it!
• In conversation telephone / face to face
• Letters / email
• Key Information summary (KIS)

28
What is KIS for?

• Information transfer
• In Hours GP to OOH GP
• Primary Care to AE / Acute Receiving Units
• Primary Care to Scottish Ambulance Service
• Primary Care to Specialist Palliative Care
• Prompts for proactive care
• Anticipatory Care Planning
• All data stored in one place
• Structure for lists / meetings / etc
• Palliative care DES

29
What does KIS contain?

• 0 - Consent
• 1 Demographics
• 2 Current situation
• 3 Care Support
• 4 Resuscitation Preferred Place of Care
• 5 Palliative Care

30
0 - Consent

• KIS Upload decision
• Patient consented?
• Apply Special Note
• KIS Review date

31
1 Demographics

• Patient Details
• Practice Details
• Usual GP
• Patients Emergency Contact Number
• Carers
• Next of Kin
• Access Information

32
2 Current Situation

• Medical History
• Self Management Plan(s)
• Anticipatory Care Plan
• Single Shared Assessment
• Oxygen
• Additional Drugs Available at Home
• Catheter and Continence Equipment at Home

33
3 Care Support

• Agency Contact
• Moving and handling Equipment at Home
• Syringe Driver (sic)
• Adults with Incapacity Form
• Power of Attorney
• Guardianship with Welfare Decision Making Powers

34
4 Resuscitation Preferred Place of Care

• Preferred Place of Care
• DNACPR
• CYPADM

35
5 Palliative Care

• Palliative Care Register
• OOH Arrangements
• Discussed with patient / carer
• GP sign death certificate
• GP should be contacted OOH / Contact Number(s)
• Patients / Carers understanding
• Diagnosis
• Prognosis
• Palliative care and Treatment

36
C 6 Current needs

• Physical
• Symptom relief
• Bowel / bladder care
• Oral care
• (Hydration)
• Psychological
• Personal
• Social
• Spiritual / Existential (the inner self)

37
C 8 Care Planning (Anticipatory)

• Plan A
• Active treatment aimed at recovery
• Plan B
• Active treatment aimed at a good and dignified
  death

38
Break!

• What are the similarities and differences between
  Plan A Plan B?

39
C 8 Care Planning (Anticipatory)

• Plan A
• Active treatment aimed at recovery
• Plan B
• Active treatment aimed at a good and dignified
  death
• What are the similarities and differences between
  Plan A Plan B?

40
Similarities Differences?

• Similarities
• Almost everything!
• Differences
• Seriousness of dying/death
• Ceilings of treatment / intervention
• Anything else?

41
C 7 Ceilings of treatment / intervention

• Some ceilings
• Transplant(!!)
• Dialysis ventilation cardiac devices(!)
• CPR

42
DNACPR 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

43
DNACPR Decision making

• Is CPR realistically likely to succeed?
• What do we mean by success?
• Sit up and have a cup of tea
• Population that we are considering
• Candidate for admission to HDU?
• Facilities available
• People available

44
Introducing the subject of DNACPR

• Communication
• Breaking bad news
• Narrowing the information / knowledge gap
• We know something we think they need to know!
• CPR would be futile or
• CPR would not be futile and so do they want it?
• 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

45
Discussing DNACPR

• 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
• Often less difficult earlier in disease
• Small chunks and check (BBN)
• Aim is to Allow a Natural Death
• Discussion on CPR should be part of wider
  discussion
• Compassion!

46
Getting CPR raised

• By patient and carer
• Spontaneously
• Prompted
• Another professional e.g. the hospital said
• My Thinking Ahead Making Plans

47
Getting CPR raised

• By us (in the course of a more general
  discussion)
• 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 youd like to avoid?
• Etc etc etc
• By us (more pushy)
• If youre 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

48
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

49
What DNACPR is not about

• Anything other than CPR
• Any other treatments e.g. antibiotics
• Feeding
• Fluids
• Highlight everything else that we can still do

50
DNACPR Practicalities

• Completing the DNACPR form
• Where should form be kept
• When to update form
• Patient transfer
• Communication
• Patients home
• Patient
• Family / loved ones
• OOH Services
• Scottish Ambulance Service
• Others?

51
DNACPR Fundamentals

• The decision to offer CPR is a medical one
• The decision has 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 needs to be discussed
• If success not anticipated patient needs to be
  informed
• Relatives should not be asked to decide unless
  patient lacks capacity legally empowered to do
  so

52
C 7 Ceilings of treatment / intervention

• Some ceilings
• Transplant(!!)
• Dialysis ventilation cardiac devices(!)
• CPR
• Surgery
• Chemotherapy / Radiotherapy
• Antibiotics I/V
• Admission or transfer
• Nutritional support
• Hydration / S/C fluids
• Blood tests (arterial, venous, capillary)
• Antibiotics oral
• Routine positional change

53
C 8 Care Planning

• Probable / what is likely to happen
• Possible / what might happen
• Review ceilings of treatment / intervention
• Review current needs
• Review prescribing
• Review processes
• (Plan for death)

54
C 8 Care Planning

• Plan A Active treatment aimed at improvement /
  recovery
• Plan B Active treatment aimed at a good and
  dignified death
• Acknowledge the uncertainty
• Gradual / sudden shift from possibility of
  improvement
• Death now inevitable
• Plan B is the only option
• Care in the Last Stages of Life

55
C 9 Care in the Last Stages of Life

• Care considerations
• Probable / what is likely to happen
• Possible / what might happen
• Review ceilings of treatment / intervention

56
C 9 Care in the Last Stages of Life

• Review ceilings
• Transplant(!!)
• Dialysis / ventilation / cardiac devices(!)
• CPR
• Surgery
• Chemotherapy / radiotherapy
• Antibiotics I/V
• Admission / transfer
• Nutritional support
• S/C fluids
• Blood tests (arterial, venous, capillary)
• Antibiotics oral

57
C 9 Care in the Last Stages of Life

• Care considerations
• Probable / what is likely to happen
• Possible / what might happen
• Review ceilings of treatment / intervention
• Review current needs

58
C 9 Care in the Last Stages of Life

• Review Current needs
• Physical
• Symptom relief
• Bowel / bladder care
• Oral care
• (Hydration)
• Psychological
• Personal
• Social
• Spiritual (the inner self)

59
C 9 Care in the Last Stages of Life

• Care considerations
• Probable / what is likely to happen
• Possible / what might happen
• Review ceilings of treatment / intervention
• Review current needs
• Review prescribing

60
C 9 Care in the Last Stages of Life

• Prescribing issues
• What is essential?
• What is not needed?
• What to do with those in between?
• What might be needed (Just in Case)?
• Route of administration (S/C?)

61
C 9 Care in the Last Stages of Life

• Care considerations
• Probable / what is likely to happen
• Possible / what might happen
• Review ceilings of treatment / intervention
• Review current needs
• Review prescribing
• Review processes

62
C 9 Care in the Last Stages of Life

• Review processes
• (DNACPR)
• RNVoED
• KIS

63
C 9 Care in the Last Stages of Life

• Care considerations
• Probable / what is likely to happen
• Possible / what might happen
• Review ceilings of treatment / intervention
• Review current needs
• Review prescribing
• Review processes
• Plan for death

64
C 10 Continuing care

• Bereavement support
• Ensure ALL practice staff know
• Consider
• Adding details to key relatives records
• Contacting bereaved relative(s)
• Informing other GP practices if bereaved not
  registered with practice
• Consider possible need for additional support

65
Knowledge
K
66
Skills
K
S
67
Attitudes
68
C 3 Compassion

• Show that we care!
• Be polite and courteous
• Make it personal
• Show interest
• Give your time (even when you have very little!)
• Add little touches
• Unbidden Acts of Human Kindness(!)
• Empathy Compassion