Who decides? For thousands of years, doctor knew best, but recently respect for patient autonomy has emerged as a key ethical principle in decision making. This has led to the suggestion that decisions should be shared between patients, families and the medical team. An international consensus conference embraced this model for end of life decision making in ICU. But what is shared decision making, does it improve outcomes and is it legally safe? This podcast suggests that the answer so far is a definite maybe.

1. Shared Decision Making
Peter Saul

2. End of life has high prevalence:
- 1 in 100 of us
- 1 in 3 ward patients
- 8 out of 10 oncology inpatients
Getting out of ICU alive doesn’t mean you aren’t at end of life

3. “If end of life discussions were
an experimental drug, the FDA
would approve it”

4. ..and require the same skill as a
surgical procedure

5. The Plan
• Prologue..
• How to..
• References/resources

6. The Prologue
1. What is it?
2. Does it matter?
3. Can we do it?
4. Are we doing it?
5. Should we do it?
6. Do I need to know about it?

7. The Prologue (spoiler alert)
1. What is it? mmm
2. Does it matter? probably
3. Can we do it? not yet
4. Are we doing it? no
5. Should we do it? I think so
6. Do I need to know about it? yes

10. Doctor decides ------------------------------------------------------------Patient decides
You are here Or maybe here

11. “It takes at least two to tango”
Cathy Charles 1997
Doctor decides ------------------------------------------------------------Patient decides
You are here Or maybe here

12. Patient
values/wishes
Medical team “family”
Tango for three

14. Is it “ethical”

15. Not the usual
suspects

16. Truth
NFR
Informed
consent
POA
Shared
decisions
Autonomy

17. “Respect for autonomy is not a mere
ideal in health care; it is a professional
obligation. Autonomous choice is a right
not a duty of patients.”
Tom Beauchamp and James
Childress 2001

19. Is it legal?

20. The law recognises:
- surrogate decision makers
- prior statements by patients
- that “best interests” should always include the wishes
of the patient, if known

22. Poor communication & information =
patient dissatisfaction
Defensive medicine = doing more
regardless

24. Things are changing very quickly – the decisions we have to make and
the way we make them
SDM is ethical and legal, but not proof against litigation
SDM is politically encouraged but poorly defined or researched
Best practice?

26. 1. Nature of decision
2. Treatment alternatives
3. Pros and cons
4. Uncertainty
5. Understanding
6. Patient’s values
7. Family’s role
8. Need for input from others
9. Context of decision
10. Family’s opinion about the decision

27. 1. Nature of decision
2. Treatment alternatives
3. Pros and cons
4. Uncertainty
5. Understanding
6. Patient’s values
7. Family’s role
8. Need for input from others
9. Context of decision
10. Family’s opinion about the decision
< 2%

29. Hajizadeh 2016

30. However…
• Less PTSD, depression, CGD (?)

32. What to say
How to say it

34. Here goes….
• Preparation
– Get trained (use a tool)
– Medical “facts”
• Set the stage
– Who is here?
– What do you know?
– How does your family make decisions like these?

36. Here goes….
• Preparation
– Get trained (use a tool)
– Medical “facts”
• Set the stage
– Who is here?
– What do you know?
– How does your family make decisions like these?

37. ..and then…
• What options are we going to talk about?
• Keep referencing the patient
– What would she be prepared to go through?
– What outcomes would she accept?
• Decision
– Do we all understand this?
• Closure
– When do we meet again?

41. Thank you

42. $2.4
billion
$2.3
billion
$77m
Hospital
RACF
Community