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How To Communicate Bad News
Élie AZOULAY MD PhD, Medical ICU, Saint-Louis Hospital,
ESICM Barcelona, September 2006
End-Of-Life in the ICU
• About 20% of patients requiring organ support fail to
improve and remain dependent on life-sustaining treatments.
The question about the appropriateness of continuing life
support often arises.
• Most deaths in the ICU are preceded by EOLD and the
incidence of EOLD may be increasing over time.
Sprung et al. JAMA 2003;290(6):790-7.
• In patients discharged alive from the ICU, EOLD taken in the
ICU influence hospital survival.
Azoulay et al. Crit Care Med 2003;31(2):428-32.
Communication at the End-Of-Life
• Intensivists must take on the task of accepting and
managing death.
• This task requires
– 1) identification of situations where all hope of recovery is lost and
where treatments should be withdrawn or withheld,
– 2) prompt initiation of a continuous process of family care based on
sensitive and straightforward information and communication,
– 3) improvements in the ability to manage death, and continuing
education aimed at honing the information and communication
skills of all ICU professionals.
Framework of the presentation
1) General considerations
2) Families looking back after patient’s death
3) Interventions designed to improve end-of-life care
4) The End-Of-Life Family Conference: how to
communicate bad news
5) Research agenda
Framework of the presentation
1) General considerations
2) Families looking back after patient’s death
3) Interventions designed to improve end-of-life care
4) The End-Of-Life Family Conference: an evidence-based
heritage
5) Research agenda
2. Families looking back after patient’s death
Author
Year
Participants
Measurements
Results
Covinsky
(SUPPORT)
1994
5 centers,
2129 families
Adverse caregiving
Economic burdens
Family
members
assisted
patients in 1/3 of the cases.
Malacrida
1998
1 center,
123 families
Family
satisfaction
Unclear information (17%). No
information on causes of death.
Keenan
2000
1 center
33 families
Family
satisfaction
Satisfaction with information.
Family voice concerns
Cuthbertson 2000
1 center
99 families
Family satisfaction
Family burden
Poor communication. Financial
difficulties. Sleep disturbance,
2001
1 center
48 bereaved families
Sources of conflict
Family support
Conflicts (46%).
Need
for
pastoral
care,
discussion
of
preferences.
Conversation in quiet space.
Heyland
2002
6 centers, 624
Family satisfaction
Patients 166 families
Dissatisfaction: waiting room,
Satisfaction:
information
respect/compassion
Heyland
2003
6 centers,
256 families
Family satisfaction
Good communication, good dec.
making, respect/compassion.
2005
21 centers, 284
Patients 56 families
Increased PTSD in family with
PTSD. Symptoms of
Non effective communication
anxiety/depression
and who shared decisions.
Abbott
Azoulay
(Famiréa)
How are they doing?
I.
They suffer high levels of burden





Insomnia,
Anxiety,
Stress,
Guilt,
Financial problems
II. They have regrets on how death occurred
 Suddenly, without having time to speak with the patient of
his/her preferences and values
 Without presence of religion/faith/chaplain
 With guilt from having decided / shared decisions
 Without certainty that symptom control was optimal
 Care was not exactly as announced
How are they doing?
III. They report bad communication during EOL care








Not enough information time
Visitation policies were inadequate
Staff behaviors were unprofessional
Need for clear and easy-to-understand information
provided in a quiet space (conference room)
Still have many questions to ask (cause of death!!!)
Want to voice concerns and to ventilate emotions
Want to be supported/reassured by “doctors in charge”
Decisions not shared by all family members
Make the decision
Negotiations and communication skills
Good communication
collaboration
Framework of the presentation
1) General considerations
2) Families looking back after patient’s death
3) Interventions designed to improve end-of-life care
4) The End-Of-Life Family Conference: an evidence-based
heritage
5) Research agenda
Thirteen trials reporting interventions
designed to improve communication
• RCT or before / after studies. Single or multicenter studies
• Various interventions
–
–
–
–
–
Staff information,
Family brochure,
Proactive communication
Ethics consultation
Nurses’ and social workers’ intervention
• Outcome measures
–
–
–
–
Satisfaction and conflicts
Agreement with WH/WD life-sustaining therapies
Use of non beneficial (futile) care
Economic burden (LOS, duration of mechanical ventilation…)
• Results: In general, positive impact on bereaved families
Author
Participants
Intervention
Outcomes
Impact
SUPPORT
US, 1995
27 centers
9105 pts
Nurse enhancing the
patientfamily/physici
an relationship
Communication
Symptom control
None
Holloran
US, 1995
1 center
SICU pts
Clinical ethics
program with case
conference (LST)
Decrease in LOS
Reduction in cost
Decrease in LOS
Communication
LOS
- Improving
communication and
decision-making
- Decrease in LOS
Dowdy
US, 1998
1 center
99 High-risk pts
Proactive ethics
consultation
Azoulay
France, 2002
34 centers
175 pts
Family information
leaflet (FIL) at ICU
admission
Effectiveness of the
information
Better comprehension
Better satisfaction if…
Moreau
France 2004
21 centers
200 patients
Information given by
junior versus senior
No difference in the
effectiveness
of information
Junior = Senior
Schneiderman
US, 2003
7 centers,
476 pts at
risk of conflict
Ethics consultation
with center’s
consultants
Decrease in LOS/VM
Positive views of
consultations
Decrease in non
beneficial treatments
Schneiderman
US, 2000
2 centers
70 pts
Ethics consultations
Agreement with
consultations
Reduction in LOS/LST
Decrease in non beneficial treatments.
Stable mortality
Author
Participants
Intervention
Outcomes
Impact
Burns
US, 2003
7 centers,
873 patients
Social worker
identify conflict
and patient’s
preferences
Increased use of
palliative care,
and WH/WD
Increase in
communication
helps for decision
making
Robinson
UK, 1998
1 center
25 pts (CPR)
Witnessed
resuscitation
Grief questionnaire
Relatives were satisfied
to remain with the pts
Lilly
US, 2000
1 center
530 MV pts
Intensive
communication
with therapeutic
goals
Decrease in LOS
Earlier WD LST
Decrease in LOS
Lilly
US, 2003
1 center, 4y
follow-up 2891 pts
Intensive comm
with therapeutic
goals
Durable reduction
in LOS / mortality
Durable reduction in
LOS and mortality
Earlier WD
Campbell
US, 2003
1 center,
81 MOSF pts
Proactive interv.
to agree upon
treatment goals
Decrease
LOS/costs
Earlier pall. care
Decrease in the use
of non beneficial
resources, LOS/cost
Campbell
US, 2004
1 center, 52
dement pts
Proactive
palliative
care interv.
Decrease in LOS
Decrease in non
beneficial treatments
SUPPORT: decrease futile care at the end of life
Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments
•
•
•
•
•
Poor communication, Aggressive interventions
Poor knowledge of patient wishes
Half the DFLSTs were made within 48 h before death
38% of patients who died spent > 10 days in the ICU
Half the family members perceived evidence of pain
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 Not influenced
Th isbyouinformation on prognosis, preferences ...
and by a specifically
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 NEED FOR PROACTIVE MEASURES
JAMA 1995, 274(20):1591-1598.
Proactive process of communication:
just an example of intervention
• An initial formal multidisciplinary meeting was held within 72h
including the physician, nurse, house officer and the family.
• The meeting had four primary objectives:
– 1) to review the medical facts and options for treatment;
– 2) to discuss the patient’s perspectives on death and dying, dependence,
loss of function, and the acceptability of the risks and ICU discomforts
– 3) to agree on a care plan;
– 4) to agree on criteria of success of this care plan.
• The timing of subsequent meetings was “a-la-carte”.
• A weekly multidisciplinary case review was held.
Number (%) or Median (ranges) No leaflet Leaflet
P
n=88
n=87
value
Poor comprehension
36 (40.9)
10 (11.5) <0.0001
 diagnosis
13 (14.7)
3 (3.4)
0 . 02
 prognosis
11 (12.5)
7 (8)
0 . 20
 treatment
31 (35.2)
6 (6.9)
<0.0001
CCFNI
23 (19-27) 21 (18-26) 0.08
Framework of the presentation
1) General considerations
2) Families looking back after patient’s death
3) Interventions designed to improve end-of-life care
4) The End-Of-Life Family Conference: an evidence-based
heritage
5) Research agenda
5. The End-Of-Life family Conference:
an evidence-based heritage
• EOL family conferences are the best means of emphasizing
family needs during end-of-life care: a hand reaching out to
family members to say “We know what you feel, you are not
alone, we can hear you, just let us help and support you.”
• EOL family conferences provide




Additional information
Close relationship between relatives and the ICU team
Intimacy in the conference room with the ICU-team
Relatives with the opportunity to understand, to let go of false hopes,
to voice concerns, to ventilate emotions.
 Clinicians with the opportunity to listen to family members, to
provide compassion and to alleviate guilt
 … to respect patient's preferences and values
 EOL family conferences restore the sanctuary of the patientfamily-physician relationship.
Preparing the conference
1. consider what is known by the
team about patients/families
2. resolve conflicts between
physicians and within the ICU
team
3. acknowledge clinicians’ anxiety to
allow them to become comfortable
when discussing dying and death
4. identify gaps in clinicians’
knowledge
5. plan where the discussion will
take place and who will attend (no
machine, no medical diagram,
quiet and private room, avoid
being interrupted)
6. let the family know they can write
down questions before
7. consult staff members about
whether they should be present
8. all parties should be sitting at the
same level around a table or with
chairs in a circle
9. review what family knows about
the patient (diagnosis,
treatments, outcomes)
10. identify areas of uncertainty and
disagreement between the family
and the team.
Plan for the Family Conference
1. introduce everyone (so that
everyone knows each person’s
role)
2. frame the discussion by saying that
it is commonly held for severely ill
patients
3. make the family as comfortable as
possible about discussing dying
and death
4. find out what the family
understands. Give them the
opportunity to describe the
patient's life and medical history.
5. avoid technical jargon, use the
terms “dying” or “death”
6. avoid to give too much detail about
pathophysiology as a way to deal
with our own discomfort
7. provide honest and meaningful
information about the prognosis
without discouraging hope: talk
about quality time with patients,
for a comfortable death without
pain and with dignity.
8. align the clinicians' and the families'
view of what the goals of care
should be
9. listen to what families have to say
10. stress the specific palliative
treatments that can be offered
when the goals of care change from
cure to comfort
Ending the conference
1. repeat what patients or families
have said as a way to show that
clinicians heard them
2. don’t describe all possible
treatment options as equally
reasonable: make
recommendations.
3. Don’t let the family like if they
have decided to pull the plug on a
loved one
4. spend time exploring the family's
reactions to what was said.
5. acknowledge strong emotions
(e.g., anger, anxiety, sadness)
6. show empathy and encourage
discussion about the emotion.
7. tolerate silences that can precede
questions or emotions
8. family should understand that care
is maintained even when
treatments are limited: separate
LST from comfort care.
9. before finishing, summarize the
major points and ask for
questions (tolerate silences, wait
for questions).
10. ensure that there is an adequate
follow-up plan: when you will
meet again and how the family
may reach you if questions arise
before the next meeting.
Framework of the presentation
1) General considerations
2) Families looking back after patient’s death
3) Interventions designed to improve end-of-life care
4) The End-Of-Life Family Conference: an evidence-based
heritage
5) Research agenda
To improve global visit
satisfaction, communication
skills training programs may
need to be longer and more
intensive, teach a broader
range of skills, provide
ongoing performance feedback.
• Many patients, when they fear that their prognosis is poor,
do not ask for precise information and do not hear it if it is
provided by the doctor
• Study of patients with untreatable small cell lung cancer
shows that doctors and patients collude in behavior that
fosters a false optimism about recovery
• By focusing on the "treatment calendar" patients ignore the
issue of prognosis
• Patients' false optimism:
– doctors withholding information
– lack of communication skills
• Are patients victims of doctors' behaviors ?
Beside oral communication:
provision of written materials
Damian and Tattersall. Lancet. 1991 Oct 12;338(8772):923-5
• Letters provide a permanent record of the consultation,
which can be kept for future reference, and encourage
greater patient involvement in their care.
• RCT in Australia: to assess the role of personal letters to
patients outlining their consultation.
• Patients receiving letters were more satisfied with the
amount of information given, and tended to have greater
and more accurate recall of the consultation.
• A survey of referring doctors revealed general support for
the idea of sending to cancer patients letters.
Only
Training!!!
Fallowfield and Jenkins. Lancet. 2004 Jan 24;363(9405):312-9
In conclusion:
striving for excellent end-of-life care
• Critical care clinicians have increased opportunities to
communicate on “bad news” and to perform better on the
basis of a rich literature
– Epidemiological studies have identified specific needs surrounding
end-of-life care and domains as possible targets for interventions.
– Interventional studies that demonstrated effectiveness of proactive
interventions in communication, ethics consultation and enhanced
autonomy.
• It is time to move forward and to apply the results of these
interventions in daily practice.
• Improving our communication skills, in general and at the
end-of-life, remains a challenging objective.
Thank you for your attention