Transcript Changing Patterns of End-of

Decision making at the End of Life
XXXVII ACP Annual Chapter Meeting
Panama City, Republic of Panama
February 28, 2015
Thomas J. Prendergast, MD
Clinical Professor of Medicine, OHSU
Senior Scholar, Center for Ethics in Healthcare
Section Chief, PCCM, Portland VAMC
Director, Respiratory Care and PFT Lab
Decision making at the End of Life, c. 1877
The Doctor by Luke Fides. Tate Gallery, London
Decision making at the End of Life, c. 1952
Why is Aug 27 1952 relevant to today’s talk?
Decision making at the End of Life, c. 1952
Dr.
Bjørn
Aage
Ibsen
Dr.
Henry
C. A.
Lassen
Polio
Epidemic
Copenhagen
Summer,1952
West JB.
J Appl Physiol.
2005;99(2):424
Decision making at the End of Life, c. 2015
Communications in the ICU
Three key observations about Critical Care:
1.
There is uncertainty regarding patient outcomes
Ante-mortem median 6 month
predicted survival
One day
One week
7%
35%
CHF
42%
62%
COPD
21%
41%
COMA
11%
27%
MOSF & malignancy
5%
26%
All deaths – SUPPORT
Lynn J et al. New Horizons 1997;5(1):56-61
Communications in the ICU
Three key observations about Critical Care:
1.
There is uncertainty regarding patient outcomes
2.
Patients are often unstable and, therefore, decisions
need to be made quickly
Retrospective chart and EMR review
Total ICU Admissions
Total ICU Deaths
Death occurring
<24 hours
>24 hours
DHMC
3,953
793 (20%)
222 (28%)
571 (72%)
Project Impact
11,239
3,446 (31%)
7,793 (69%)
Data from April 1, 2001 through June 30, 2005
Communications in the ICU
Three key observations about Critical Care:
1.
There is uncertainty regarding patient outcomes
2.
Patients are often unstable and, therefore, decisions
need to be made quickly
3. Time-pressured decisions under conditions of
uncertainty lead naturally to differences of opinion
Conflict among providers/patients/families
• There is disagreement between providers and
surrogates over goals of treatment in 10-20% of dying ICU
patients.1
• Multiple studies find conflict among providers in 3070% of patients, principally between MDs and RNs2-4
1Prendergast
and Luce, AJRCCM 155:15, 1997
2Azoulay E et al. Am J Respir Crit Care Med 2009; 180:853.
3Frick S et al. Crit Care Med 2003; 31:456.
4Breen C et al. J Gen Intern Med 2001; 16:283.
Communications in the ICU: A challenge
•
The ICU is a complex and difficult communications
environment.
•
Disagreement over management recommendations is not
an aberration; it is natural to the ICU.
•
To be effective, the physician must to anticipate,
recognize and manage disagreements to prevent conflict.
End-of-life care in 131 ICUs, c. 1995
PRENDERGAST TJ
et al. Am J Respir
Crit Care Med 1998,
158, 1163-1167.
DOI: 10.1164/ajrccm
158.4.9801108
© 1998
The American
Thoracic Society
End-of-life care in 131 ICUs, c. 1995
Total ICU admissions
Total ICU deaths
Brain deaths
Patients facing end-of-life decisions
Full resuscitation
Withholding of resuscitation
Withholding of life support
Withdrawal of life support
74,502
6,303 (8.5% mortality)
393 (6.2% of deaths)
5,910
1,544
1,430
797
2,139
(26%, 4-79%)
(24%, 0-83%)
(14%, 0-67%)
(36%, 0-79%)
PRENDERGAST TJ et al. Am J Respir Crit Care Med 1998, 158, 1163-1167.DOI: 10.1164/ajrccm 158.4.9801108
© 1998 The American Thoracic Society
Research to guide best practice
What do patients want?
Research to guide best practice: patients
What do patients want?
1. They may not know.
2. You will not know unless you ask.
3. They want loved ones to weigh their expressed wishes
with what family/surrogate thinks is best in the situation.
Sulmasy DP et al. JAGS 2007;55:1981
Research to guide best practice: family
What do family and surrogates want?
•
Timely, clear, compassionate communication
• Clinical decision making focused on patient preferences, goals
and values
•
Patient care, maintaining comfort, dignity, personhood
•
Open access of families to patients
• Interdisciplinary support of families during and (for deceased
patients) after the ICU stay
Nelson JE et al. Crit Care Med 38:808, 2010
Research to guide best practice: family
How do families respond to shared decision making?
•
They find the burden of responsibility heavy, with
high rates of anxiety (71%) and depression (50%).1
•
They need time for cognitive processing and
emotional adaptation.2, 3
•
They need and seek guidance in this process.4
1.
2.
3.
4.
Furmis RRL. Intensive Care Med 2009;35:899
Barry LC et al. Am J Geriatr Psych 2002;10:447
Sinuff T et al. Crit Care Med 2009;37:154
Apatira L et al. Ann Intern Med 2008;149:861
What guidance do family/surrogates want?
•
Acknowledgement of their emotional distress1
•
Effective sharing of prognostic information2, 3, 4
Respect for the dynamics of their communications style in a
shared decision making process5
•
1.
2.
3.
4.
5.
Selph RB et al. JGIM 2008;23:1311
Apatira L et al. Ann Intern Med 2008;149:861
Evans LR et al. AJRCCM 2009;179:48
Zier LS et al. Crit Care Med 2008;36:2341
Shanawani H et al. Chest 2008;133:775
Research to guide best practice: prognosis
A.
Many families don’t want prognostic information
B.
Nearly all families want to hear a MD’s recommendation
C.
A majority of families respect intensivists’ predictions at
the same time they don’t believe them
D.
Once a decision to withdraw life support is made,
families want the process to proceed promptly.
WHICH STATEMENT IS CORRECT?
Research to guide best practice: prognosis
A.
Many families don’t want prognostic information
B.
Nearly all families want to hear a MD’s recommendation
C.
A majority of families respect intensivists’ predictions at
the same time they don’t believe them
D.
Once a decision to withdraw life support is made,
families want the process to proceed promptly.
Prognosis

A. Many families don’t want prognostic information.
In fact, 93% of surrogates of ICU pts reported that avoiding
discussions about prognosis was unacceptable1, and 87% wanted
physicians to disclose prognosis2.
Only 3% would refuse prognostic information.1
1Apatira
L et al Ann Intern Med 2008;149:861
2Evans LR et al. AJRCCM 2009;179:48
Prognosis

B. Nearly all families want to hear a MD’s recommendation
In fact, families/surrogates have a range of preferences about
physician recommendations to withdraw life support:


56% preferred to receive a recommendation
42% did not want a physician’s recommendation
White D et al. AJRCCM 2009;180;320
Prognosis
D. Once a decision to withdraw life support is made,
families want the process to proceed promptly.

In fact, most families need time: perceived lack of preparedness for a
loved one’s death associated with complicated grief (OR 1.78) and MDD (1.93)
at 9 months.1
In families of 584 pts who died in the ICU, longer duration (>1d) of
withdrawal was associated with increased family satisfaction with care.2
1Barry
LC et al Am J Geriatr Psychiatry 2002;10:447
2Gerstel E et al. AJRCCM 2008;178:798
Prognosis
C. A majority of families respect intensivists’ predictions
at the same time they don’t believe them

87% of 179 surrogates (for 142 ICU patients) wanted physicians to disclose
prognosis even while they admitted that they did not trust the accuracy of those
predictions.1
1Evans
LR et al. AJRCCM 179:48, 2009
Prognosis
 C. A majority of families respect intensivists’ predictions
at the same time they don’t believe them
Surrogates interpret prognostic information in light of






Lack of specific information from medical staff
Their assessment of the patient’s physical appearance
The patient’s personal history of overcoming adversity or illness
Their assessment of the patient’s ‘will to live’
The power of their presence at the bedside to help the patient
Non-linear (“magical”) thinking
1Boyd
EA et al. Crit Care Med 38:1270, 2010
Research to guide best practice: Communication
A.
When a patient and family/surrogate together receive a cancer diagnosis,
the patient takes longer to understand than the surrogate.
B.
Early palliative care offered to patients with advanced NSC lung cancer
improves QOL and does not affect survival.
C.
Helping your cancer patient to understand his/her true prognosis is
associated with improved patient satisfaction.
D.
ICU pt surrogates demonstrate systematic bias towards optimism when
interpreting physician predictive statements.
WHICH STATEMENT IS CORRECT?
Research to guide best practice: Communication
A.
When a patient and family/surrogate together receive a cancer diagnosis,
the patient takes longer to understand than the surrogate.
B.
Early palliative care offered to patients with advanced NSC lung cancer
improves QOL and does not affect survival.
C.
Helping your cancer patient to understand his/her true prognosis is
associated with improved patient satisfaction.
D.
ICU pt surrogates demonstrate systematic bias towards optimism when
interpreting physician predictive statements.
Research to guide best practice: Communication

B. Early palliative care offered to patients with advanced
lung cancer improves QOL and does not affect survival.
In fact, in a cohort of 151 patients with metastatic non-small-cell lung cancer
randomized to standard oncologic care v standard oncologic care integrated with
early palliative care.
Intervention group had
 Improved QOL
 Reduced depressive symptoms
 Less frequent aggressive EOLC
 Improved survival (11.6 v 8.9 months, p = 0.02)
Temel JS et al, NEJM 363:733, 2010
Research to guide best practice: Communication

C. Helping your patient to understand true prognosis is
associated with improved patient satisfaction.
In fact, a US study of 1193 patients who received chemotherapy for metastatic
lung or colorectal cancer reported that a clear understanding of the lack of
curative potential of treatment was strongly associated with unfavorable ratings
of their provider’s communication skills.1
1Weeks
JC et al, NEJM 367:1616, 2010
Research to guide best practice: Communication

D. Surrogates demonstrate systematic bias towards
optimism when interpreting MD’s predictive statements.
In fact, surrogates correctly interpret prognostic statements that suggest a low
risk of patient death, but demonstrate bias toward optimism when presented
statements predicting a high risk of death.
Therefore, the cause of optimism in high-mortality patients is less likely to be
innumeracy or misunderstanding and more likely to be cognitive bias.
Zier LS et al Ann Intern Med 156:360, 2012
Research to guide best practice: Communication
A. When a patient and family/surrogate together receive
a CA dx, pt takes longer to understand than the surrogate.

28 patients recently diagnosed with hematologic malignancies were asked to describe the
day they learned of their diagnosis. Surrogates described feeling the full force of the diagnosis
almost immediately. Patients tried to make sense of the info first, which they did through
placing the disclosure into a narrative of prior interactions around health care.
The emotional impact often emerged gradually, catalyzed by an innocuous event such as
realizing that the other patients in the waiting room have cancer.
The level of trust in providers was strongly influenced by prior encounters with the health
care system.
Schaepe KS. Soc Sci & Med 73:912, 2011
Research to guide best practice: Communication
Giving families a leaflet that explains your ICU reduced the
proportion of family members with poor comprehension from 40.9% to 11.5%
(p < 0.0001).1
367 consecutive trauma ICU patients in a prospective, observational
pre-post study of a structured palliative care intervention2:




More discussion of pt goals on rounds
Fewer ICU days
Shorter time to DNR
Mortality
36% v 4%
6.1d v 7.6d
7d v 20d
no change
1 Azoulay
E. AJRCCM 2002;165:438.
2Mosenthal AC et al. J Trauma 2008;64:1587
Withdrawal Principles 2015
 Anything can be withdrawn – except care.
 There is broad consensus in NA and Europe that withholding
and withdrawal are morally acceptable and legally equivalent.
 Withdrawal of life support is common in NA and Europe.
 There is scant evidence to guide best practices and many
relevant studies are >10 years old.
 The objective in withdrawal is to stop unwanted and/or
ineffective treatments.
Is it necessary in all circumstances to have recourse to all possible remedies?
It is permitted, with the patient's consent, to interrupt [the most advanced medical
techniques] where the results fall short of expectations.
One cannot impose on anyone the obligation to have recourse to a technique already in use
but which carries a risk or is burdensome. Such a refusal is not the equivalent of suicide; on the
contrary, it should be considered as an acceptance of the human condition, or a wish to avoid the
application of a medical procedure disproportionate to the results that can be expected, or a
desire not to impose excessive expense on the family or the community.
When inevitable death is imminent in spite of the means used, it is permitted in conscience to
take the decision to refuse forms of treatment that would only secure a precarious and
burdensome prolongation of life, so long as the normal care due to the sick person in similar
cases is not interrupted. In such circumstances the doctor has no reason to reproach himself with
failing to help the person in danger.
DECLARATION ON EUTHANASIA
SACRED CONGREGATION FOR THE DOCTRINE OF THE FAITH
His Holiness Pope John Paul II
May 5, 1980
Research to guide best practice: Mechanics
A.
B.
C.
D.
You should always reduce FIO2 and RR before taking the
patient off the ventilator.
Patients should be given an opioid and a sedative (BZD)
prior to withdrawal
Institutional protocols improve the quality of patient
deaths, as measured by nurse assessment.
When implementing orders to withdraw life support, one
objective is to slow the process to allow families to adjust.
WHICH STATEMENT HAS BEEN SHOWN FALSE IN A CLINICAL STUDY?
Research to guide best practice: Mechanics
A.
B.
C.
D.
You should always reduce FIO2 and RR before taking the
patient off the ventilator.
Patients should be given an opioid and a sedative (BZD)
prior to withdrawal
Institutional protocols improve the quality of patient
deaths, as measured by nurse assessment.
When implementing orders to withdraw life support, one
objective is to slow the process to allow families to adjust.
Research to guide best practice: Mechanics
A.
You should always reduce FIO2 and RR before taking the
patient off the ventilator.
EXPERT RECOMMENDATON. NO RESEARCH DATA.
B.
Patients should be given an opioid and a sedative (BZD)
prior to withdrawal
EXPERT RECOMMENDATON. NO RESEARCH DATA.
D.
When implementing orders to withdraw life support, one
objective is to slow the process to allow families to adjust
SURVEYS SHOW THAT FAMILIES NEED TIME TO PREPARE FOR
DEATH BUT NO TRIALS COMPARING DIFFERENT PACES OR
STRATEGIES.
Research to guide best practice: Mechanics
Institutional protocols improve the quality of patient deaths,
as measured by nurse assessment.

Pre-post assessment of a clinical intervention (a specific ICU
order form for withdrawal of life support) led to:
High levels of MD/RN satisfaction
 Increased doses of opioids and BZD
 No change in time from DMV to patient death
 No change in nurse-assessed QODD scores

Treece PD et al. Crit Care Med 2004;32:1141
Usefulness of Protocols

Standardize management

Facilitate appropriate sedation/analgesia practice

Opportunity to develop an alliance with nursing and RT

Convey institutional support for bedside caregivers who
may have reservations

Facilitate continuing *QI*: essential in a minimal data
environment, including surveying clinicians (M&M, QODD)
and families (satisfaction with care).
Recommendations
(in a context of little research data)
•
Treat the process as any other medical procedure but
use care with language.
•
Be very clear about objectives, expectations and process
with pt/surrogate. Document this in the EMR.
•
Establish an order sheet, checklist or protocol to
standardize the process of withdrawal (see link below)
http://www.capc.org/ipal/ipal-icu
Standardized process
1.
Prepare the space: silence all alarms, turn off bedside monitors, remove
lines/tubes/devices, d/c all previous orders not directed at pt comfort (NMB!).
2.
Write a DNR/DNI order if not already completed.
3.
Ensure the presence of a physician at the onset of withdrawal. Seek assistance from
others: social work, chaplaincy, palliative care, bereavement counselors.
4.
Establish sedation (midazolam or lorazepam 1-5 mg IV) and analgesia (morphine 2-10 mg or
fentanyl 25-100 μg IV) as indicated. Titrate to RR≤25, HR<100.
5.
Turn FIO2 to 0.21, PEEP to zero. Reduce IMV rate or PSV level to 5 over a short interval (5-15
min). Adjust sedation to meet HR and RR goals.
6.
Attend to symptoms while setting specific measurable goals for administration of
analgesia and sedation.
7.
When the patient appears comfortable, either extubate (preferred) or disconnect the
ventilator leaving ETT in place (“t-piece”). Adjust sedation.
8.
Attend to families during and AFTERWARDS.