Raising difficult issues
leading to
shared decision making
Assoc Prof W Silvester
Director, Respecting Patient Choices Program
Intensive Care Specialist, Austin Hospital
Medical Consultant, DonateLife Victoria
A regular question to doctors:
• Don’t you always have to save life?
• Don’t you have to swear the Hippocratic oath?
Hippocratic Oath: 12th century Byzantine manuscript
Hippocratic Oath
• I swear by Apollo the healer…….
• I will prescribe regimens for the good of my patients
according to my ability and my judgment
• and never do harm to anyone.
Beneficence
and
non-maleficence
What’s our duty of care as a doctor?
“To take reasonable steps
(as other reasonable doctors would)
to save or prolong life
or act in the patient’s best interests”
Prof Loane Skene
University of Melbourne
“Law and Medical Practice: Rights, Duties, Claims and Defences” 2008
End of life decision making
Can be difficult, but what are the realities?
1.
Decisions have to be made, whether we like it or not.
2.
Paternalism - “autonomy”  shared decision making
3.
Under Australian common law, the final decision is made by the doctor.
4.
The factors that influence the decision:
- the patient’s prognosis
- the patient’s preferences (outcome & treatment)
- the doctor’s own values & beliefs
Survey of US speech pathologists re PEGs in dementia
•56% recommended PEG for pts with advanced dementia and
dysphagia.
•58% did not think “PEG feeding improves QOL”
•11% would want a PEG for themselves
Sharp & Shega (2009).
Am J Speech-Lang Path, 2009;18: 222-30
Marik et al (1999) Resuscitation, 42(3):197-201
US study: 640
physicians
Why do doctors do bad stuff?
• “family demand it”
• “the patient demanded it” “I was hoping another doctor would say no”
• Fear of legal action
• Easier option to treat than to talk
• Not putting themselves in the patient’s or family’s shoes
Management of difficult decisions?
• Always act in the patient’s best interests, avoid doing harm
• Decide what treatment is medically indicated, if in doubt get second opinion
• Communicate your views
- listen more and talk less
- use the “D” word
- don’t say “futile care”
• Seek agreement or take the burden of the responsibility
• Don’t ask stupid questions
• If no agreement
- give the patient/family time to see for themselves
- consider a trial with time or treatment limits
• Carefully document, follow process
What about for the non-competent patient?
What’s in the patient’s best interests?
A substitute decision-maker must consider the best Interests:
(a) The wishes of the patient; and
(b) The wishes of any nearest relative or any other family members;
and
(c) The consequences to the patient if the treatment is not carried out;
and
(d) Any alternative treatment; and
(e) The nature and degree of any significant risks associated with the
treatment or any alternative treatment; and
(f) Whether the treatment to be carried out is only to promote and
maintain the health and well-being of the patient
Section 38 Guardianship & Administration Act 1986
What is advance care planning?
… ‘a process, whereby a patient, in consultation with
health care providers, family members and important
others, makes decisions about his or her future health
care, should he/she become incapable of participating
in medical treatment decisions’.
P Singer et al 1996
Most us will die after chronic illness, not from a sudden event
Nearly half of us are not in a position to make our own decisions when we
are near death
Our family have a significant chance of not knowing our views without
discussion
RPC: building the evidence
Randomised controlled trial
• English speaking, competent patients aged ≥ 80YO,
admitted to hospital
• Intervention – ACP using the RPC model
• Primary outcome
• compliance with patients EOL wishes
• Wishes known & respected
Randomised Controlled Trial (Aug 07 – Mar 08)
1044 files / patients reviewed
877 individual patients
309 patients - informed consent obtained (35%)
154 intervention, 155 control
Excluded patients
• not competent, NESB, Prior ACP,
• expected to be discharged or die ,
• no family, refused
Deceased patients
• 56 patients (18%) died within 6 months
• 29 intervention, 27 control patients
• Patient’s wishes known and respected
• Intervention 86%
• Control 30%
p < 0.001
• No difference in mortality between groups
• Location of death
• Acute hospital: 16 in both groups
• ICU: 0 intervention pt, 4 control pt (p = 0.03)
Impact of death on surviving relatives
•
Death of a relative can cause significant anxiety,
depression and post-traumatic stress
– Azoulay E, et al. Am J Resp CCM2005;171:987-94
– Lautrette A, et al. N Engl J Med 2007;356:469-78
– Wright AA, et al. JAMA 2008;300:1665-73.
•
How do you quantify the impact?
– IES: Impact of Event Score
– HADS: Hospital Anxiety & Depression Score
Deceased patients (56 patients)
IES score: median, IQR
Number of people with IES > 30
HADS depression: median, IQR
Number of people with HADS –
depression > 8
HADS anxiety: median, IQR
Number of people with HADS –
anxiety > 8
FM’s satisfaction with the quality
of death
Very satisfied: n, %
Satisfied: n, %
Not satisfied, n. %
FM’s perception of patient’s
satisfaction with the quality of
death
Very satisfied: n, %
Satisfied: n, %
Not satisfied, n. %
Intervention
Control
P value
5, 2-5.5
0
0, 0-1.5
15, 5-21
4
5, 0-9
<0.001
0.03
<0.001
0
8
0.002
0, 0-3.5
3, 0-6
0.03
0
5
0.02
0.02
24, 82.8%
2, 6.9%
3, 10.3%
13, 48.1%
8, 29.6%
6, 22.2%
<0.001
25, 86.2%
1, 3.4%
3, 10.3%
10, 37.0%
10, 37.0%
7, 25.9%
Deceased patients (56 patients)
IES score: median, IQR
Number of people with IES > 30
HADS depression: median, IQR
Number of people with HADS –
depression > 8
HADS anxiety: median, IQR
Number of people with HADS –
anxiety > 8
FM’s satisfaction with the quality
of death
Very satisfied: n, %
Satisfied: n, %
Not satisfied, n. %
FM’s perception of patient’s
satisfaction with the quality of
death
Very satisfied: n, %
Satisfied: n, %
Not satisfied, n. %
Intervention
Control
P value
5, 2-5.5
0
0, 0-1.5
15, 5-21
4
5, 0-9
<0.001
0.03
<0.001
0
8
0.002
0, 0-3.5
3, 0-6
0.03
0
5
0.02
0.02
24, 82.8%
2, 6.9%
3, 10.3%
13, 48.1%
8, 29.6%
6, 22.2%
<0.001
25, 86.2%
1, 3.4%
3, 10.3%
10, 37.0%
10, 37.0%
7, 25.9%
Deceased patients (56 patients)
IES score: median, IQR
Number of people with IES > 30
HADS depression: median, IQR
Number of people with HADS –
depression > 8
HADS anxiety: median, IQR
Number of people with HADS –
anxiety > 8
FM’s satisfaction with the quality
of death
Very satisfied: n, %
Satisfied: n, %
Not satisfied, n. %
FM’s perception of patient’s
satisfaction with the quality of
death
Very satisfied: n, %
Satisfied: n, %
Not satisfied, n. %
Intervention
Control
P value
5, 2-5.5
0
0, 0-1.5
15, 5-21
4
5, 0-9
<0.001
0.03
<0.001
0
8
0.002
0, 0-3.5
3, 0-6
0.03
0
5
0.02
0.02
24, 82.8%
2, 6.9%
3, 10.3%
13, 48.1%
8, 29.6%
6, 22.2%
<0.001
25, 86.2%
1, 3.4%
3, 10.3%
10, 37.0%
10, 37.0%
7, 25.9%
Deceased patients (56 patients)
IES score: median, IQR
Number of people with IES > 30
HADS depression: median, IQR
Number of people with HADS –
depression > 8
HADS anxiety: median, IQR
Number of people with HADS –
anxiety > 8
FM’s satisfaction with the quality
of death
Very satisfied: n, %
Satisfied: n, %
Not satisfied, n. %
FM’s perception of patient’s
satisfaction with the quality of
death
Very satisfied: n, %
Satisfied: n, %
Not satisfied, n. %
Intervention
Control
P value
5, 2-5.5
0
0, 0-1.5
15, 5-21
4
5, 0-9
<0.001
0.03
<0.001
0
8
0.002
0, 0-3.5
3, 0-6
0.03
0
5
0.02
0.02
24, 82.8%
2, 6.9%
3, 10.3%
13, 48.1%
8, 29.6%
6, 22.2%
<0.001
25, 86.2%
1, 3.4%
3, 10.3%
10, 37.0%
10, 37.0%
7, 25.9%
Patient / family feedback
• Discharge questionnaire
• Control patients- negative comments
•
•
•
•
the doctors don’t listen
I felt ignored and in the way
They don’t want me as I am too old
They wouldn’t speak to me, and kept discussing
things with my family
Survey of family of deceased patient
Intervention group
• He had a very peaceful death, just as it should have been, &
I would like to thank all staff for this.
• Even though we already knew what he wanted it was great
to be able to talk about it so openly.
_____________________________________________
Control group
• Mum didn’t want heroics. I was horrified to hear she
received 45 minutes of CPR. She didn’t want it. All anyone
had to do was ask.
• The doctors kept asking if dad should be resuscitated. I
didn’t think they should keep asking, as they also told us it
wouldn’t help him. It was obvious to us he was dying.
Benefits of ACP
•
ACP improves EOL care and patient satisfaction
•
Empowers the patient NOW, not just in the future
•
ACP assists family to:
1. know patient wishes, be involved in ACP discussions
• More able to make decisions
• Less burdened
2. Have less risk of stress, anxiety and depression
3. Be more satisfied with quality of patient’s death
433,985 patients (1992-2005) ---> 18.3% survived
Survival decreased with greater age or if from nursing home
• Test the hypothesis that changing the terminology from
the negative “Do Not Resuscitate”
to the positive “Allow Natural Death”
• J Med Ethics 2008
Do bad things occur?
• 95 year old with dementia admitted with pneumonia
• Deteriorating patient with severe ID being considered for a PEG
• 87 year old nursing home patient with dementia and OHCA
Want to know more?
• www.RespectingPatientChoices.org.au