Department of Anesthesiology and
Critical Care Medicine
Hadassah Medical Center
End of life care around the world
Charles Sprung MD
OPTIONS AT THE END OF LIFE
FULL CONTINUED
CARE
ACTIVE LIFE ENDING
PROCEDURES
END OF LIFE DECISION MAKING
• Differences between America,
Europe and Israel
• Religious and regional differences
• Attitudes of patients, families,
physicians and nurses
• The Israeli Dying Patient Act, 2005
WHY STUDY ICU DEATHS?
• Approximately 20% of patients dying in
the United States die in ICUs
Angus DC, et al. Crit Care Med 2004; 32: 638-643
• Of patients who die in the hospital,
approximately half are cared for in an ICU
within 3 days of their death
Support Investigators. JAMA 1996;274:1591-1598
END OF LIFE DECISION MAKING
The majority of patients dying
in ICUs do so after the decision
to limit therapy
Levin PD. Crit Care Med 2003; 31:S1-S4
END OF LIFE DECISION MAKING IN
DIFFERENT COUNTRIES
• Majority of physicians withhold and withdraw
treatments in North America and Europe
Prendergast TJ. Am J Resp CCM 1998; 158:1163
Sprung CL. JAMA 2003;290:790
• Physicians in Holland and Belgium perform active
euthanasia
Hendin H. JAMA 1997; 277:1720
Dellens L. LANCET 2000; 356:1806
• Physicians withhold and do not withdraw therapies
Eidelman LA. Intensive Care Med 1998;24:162-166
END OF LIFE DECISION MAKING
• Wide variations between
countries, within countries, within
cities and even in the same ICU
• Explained by different physician
values
Cook DJ. JAMA 1995;273:703-708
END OF LIFE DECISION MAKING
• North American approach
Autonomy
• European approach
Paternalistic
END OF LIFE DECISION MAKING
FULL CARE + CPR
26% (4 - 79%)
FULL CARE - NO CPR
24% (0 - 83%)
TREATMENT WITHHELD
14% (0 - 67%)
TREATMENT WITHDRAWN 36% (0 - 79%)
Prendergast TJ. Am J Resp CCM 1998; 158:1163
END OF LIFE DECISION MAKING IN
DIFFERENT COUNTRIES
• Transatlantic divergence as to who has the final decision
if the patient is incompetent
• Whilst the views of those close to the patient are an
important factor..the treatment decision is not their right
…decision will be made by the clinician- Brit Med Assoc
• Family and relatives should be informed…the family has
no decision-making capability- Belgian CC Soc
• ACCP, ATS, SCCM support shared decision making
model and none advocate ultimate decision with doctor
Carlet J. Intensive Care Med 2004; 30:770-84
SERIOUS PROBLEMS WITH END OF LIFE CARE
• One half of dying patients had moderate or
severe pain during most of their final 3 days
• Communication between physicians and
patients was poor; only 41% of patients reported
talking to their doctors about prognosis or CPR
• Physicians misunderstood patient preferences
regarding CPR in 80% of cases
• Doctors did not implement patient desires; no
DNR in 50% of patients wanting CPR withheld
Support Investigators JAMA 10995; 274:1591
Department of Anesthesiology
and Critical Care Medicine
Hadassah Medical Center
ETHICUS: PROSPECTIVE,
OBSERVATIONAL STUDY
OF END OF LIFE DECISION MAKING
IN EUROPEAN
INTENSIVE CARE UNITS
Sprung et al. JAMA 2003;290:790
‫מדינת ישראל‬
STATE OF ISRAEL
STUDY POPULATION
Included: all consecutive patients who died or had limitation
of treatment (WH, WD, SDP) from 1.1.1999 - 30.6.2000
37 centres
17 countries
Screened patients
Total study patients
Excluded patients
Study patients
31,417
4,280
32
4,248
(13.5%)
GEOGRAPHICAL
REGIONS
NORTHERN
CENTRAL
SOUTHERN
END-OF-LIFE CATEGORIES
n (%)
RANGE (%)
CPR
832 (20)
7 - 48
BRAIN DEATH
330
(8)
0 - 15
WITHHOLD
1594 (37)
16 - 70
WITHDRAW
1398 (33)
5 - 69
SDP
TOTAL
94
(2)
4248 (100)
0 - 19
END OF LIFE DECISION MAKING
• Differences between America,
Europe and Israel
• Religious and regional differences
• Attitudes of patients, families,
physicians and nurses
• The Israeli Dying Patient Act, 2005
DOCTOR RELIGIONS
RELIGION
Catholic
None
Protestant
Jewish
Greek Orthodox
Islam
Unknown
Other
TOTAL
NUMBER (%)
1554 (37)
957 (22)
883 (21)
393 (9)
330 (8)
38 (1)
67 (1)
26 (1)
4248 (100)
Sprung CL. Intensive Care Med 2007: 33:1732
END OF LIFE DECISION BASED ON
DOCTOR’S RELIGION
RELIGION
CPR
WITHDRAWING
NUMBER (%) NUMBER (%)
CATHOLIC
317 (22)
648 (46)
PROTESTANT
84 (10)
390 (46)
GREEK ORTH 109 (39)
37 (13)
JEWISH
60 (16)
58 (16)
ISLAM
14 (37)
9 (24)
NONE
209 (24)
331 (38)
TOTAL
793 (21)
1473 (38)
WITHHOLDING
NUMBER (%)
450 (32)
380 (45)
131 (47)
251 (68)
15 (40)
338 (39)
1565 (41)
Sprung CL. Intensive Care Med 2007: 33:1732
MEDIAN TIME FROM ICU ADMISSION TO
FIRST LIMITATION BY DOCTOR RELIGION
RELIGION
MEDIAN TIMES (days)
CATHOLIC
4.0 (IQR:11.2)
PROTESTANT
1.3 (IQR:4.6)
GREEK ORTHODOX 7.6 (IQR:13.9)
JEWISH
3.6 (IQR:12.1)
ISLAM
4.1 (IQR:6.9)
NONE
2.4 (IQR:7.5)
TOTAL
2.9 (IQR:16.8)
p < 0.0001
Sprung CL. Intensive Care Med 2007: 33:1732
PATIENT WAS MENTALLY COMPETENT WHEN
END OF LIFE DECISION WAS MADE
No
Yes
Not Applicable
TOTAL
Number
3360
195
693
4248
%
79
5
16
100
Cohen S. Intensive Care Med 2005; 31:1215
INFORMATION RECIEVED
ABOUT PATIENTS’ WISHES
No
Yes
Not Applicable
TOTAL
Number
2702
850
694
%
64
20
16
4246
100
Cohen S. Intensive Care Med 2005; 31:1215
INFORMATION ABOUT PATIENTS’
WISHES BY RELIGION
RELIGION
CATHOLIC
PROTESTANT
GREEK ORTHODOX
JEWISH
ISLAM
NONE
TOTAL
INFORMATION
13%
28%
21%
22%
5%
24%
20%
p < 0.0001
Sprung CL. Intensive Care Med 2007: 33:1732
END-OF-LIFE DECISION DISCUSSED
WITH FAMILY
No
Yes
TOTAL
Number
974
2107
%
32
68
3081
100
Discussions Based on Physician Religion
• Prospective
study of deaths
in 37 ICUs in
17 countries
• 3086 patients
with limitation
of treatment
Sprung, ICM
2007; 33:1732
END OF LIFE DECISION MAKING
• Catholic physicians were less likely to withhold or
withdraw therapies
Vincent JL. Crit Care Med 1999; 27:1626
SCCM Ethics Committee. Crit Care Med 1992;20:320
• Jewish physicians reported more likely to withhold or
withdraw therapies
SCCM Ethics Committee. Crit Care Med 1992;20:320
• Descriptive Israeli study demonstrated that Jewish
physicians withheld and did not withdraw therapies
Eidelman LA. Intensive Care Med 1998;24:162-166
END OF LIFE DECISION MAKING
• Ethnic beliefs may slowly be altered
by exposure to different cultures
• Process of acculturation- ethnic origin
is tempered by the host society
Levin PD. Crit Care Med 2003; 31:S1-S4
END OF LIFE DECISION MAKING
• Differences between America,
Europe and Israel
• Religious and regional differences
• Attitudes of patients, families,
physicians and nurses
• The Israeli Dying Patient Act, 2005
END-OF-LIFE CATEGORIES BY REGION
1600
CPR
BRAIN DEATH
WITHHOLD
1200
WITHDRAW
SDP
800
400
Sprung CL.
JAMA
2003;290:790
0
NORTHERN
CENTRAL
SOUTHERN
TOTAL
MEDIAN TIME FROM ICU ADMISSION TO
FIRST LIMITATION BY REGION
REGION
MEDIAN TIMES (days)
NORTHERN
1.6 (IQR:4.8)
CENTRAL
3.3 (IQR:11.0)
SOUTHERN
5.7 (IQR:12.3)
TOTAL
2.8 (IQR:9.2)
p < 0.001
Sprung CL et al. JAMA 2003;290:790
MEDIAN TIMES FROM FIRST
LIMITATION TO DEATH
REGION
MEDIAN TIMES (HRS)
NORTHERN
11.4 (IQR: 12.2)
CENTRAL
22.0 (IQR: 74.2)
SOUTHERN
16.0 (IQR: 57.9)
TOTAL
14.7 (IQR: 51.0)
p < 0.0001
Sprung CL et al. JAMA 2003;290:790
WRITTEN ORDERS & DOCUMENTATION FOR DNR
BY REGION
REGION
NORTHERN
WRITTEN ORDERS
DOCUMENTATION
1029/1300- 79%
1141/1301- 88%
CENTRAL
702/898- 78%
689/897- 77%
SOUTHERN
260/883- 29%
304/881- 35%
1991/3081- 65%
2134/3079- 69%
TOTAL
p < 0.0001
p < 0.0001
Cohen S. Intensive Care Med 2005; 31:1215
INFORMATION CONCERNING PATIENT WISHES
BY REGION
REGION
NORTHERN
461/1505- 31%
CENTRAL
SOUTHERN
188/1209-16%
201/1534-13%
p < 0.0001
Cohen S. Intensive Care Med 2005; 31:1215
DISCUSSIONS WITH PATIENTS AND FAMILIES
BY REGIONS
REGION
NORTHERN
CENTRAL
SOUTHERN
TOTAL
PATIENT
FAMILY
58/1303- 5%
1093/1303- 84%
29/900- 3%
597/900- 66%
9/883- 1%
417/883- 47%
96/3086- 3%
2107/3086- 68%
p < 0.0001
p < 0.0001
Cohen S. Intensive Care Med 2005; 31:1215
RELIEVING SUFFERING OR INTENTIONALLY
HASTENING DEATH?
Findings in the Ethicus study that doses of opioids
and benzodiazepines reported for active SDP with
the intent to cause death were in the same range as
those used for symptom relief in earlier studies and
that times to death were similar for SDP and WD
patients, demonstrate that the distinction between
treatments to cause death and to relieve suffering in
dying patients may be unclear
Sprung CL. Crit Care Med 2008; 36: 8-13
OPTIONS AT THE END OF LIFE
FULL CONTINUED
CARE
ACTIVE LIFE ENDING
PROCEDURES
Therapeutic Limitations in SAPS3 Study
Azoulay E. Intensive Care Med 2009;35:623-630
Variations in Decisions to FLSTs
•
•
•
•
•
•
•
•
Personal physician characteristics
Case-mix and co-morbidities
Experience
Gender
Specialty or time working in ICUs
Religious beliefs and cultural background
Organizational factors
Presence of full time intensivist
Azoulay E. Intensive Care Med 2009;35:623-630
Therapeutic Limitations in SAPS3 Study
• FLST decisions more common in hospitals without
emergency departments, in smaller ICUs & ICUs with lower
nurse-to-patient ratios and more physicians per ICU bed.
• DFLSTs were more common when intensivists were
present only during weekdays, when multidisciplinary
meetings were held, and when nurses and intensivists
performed clinical rounds together.
• DFLSTs were less common in ICUs that had at least one
full time intensivist and in those with intensivists available
at night and over weekends.
Azoulay E. Intensive Care Med 2009;35:623-630
Therapeutic Limitations in SAPS3 Study
cancer patients
mechanical ventilation
FLST
mortality
Azoulay E. Intensive Care Med 2009;35:623-630
END OF LIFE DECISION MAKING
• Differences between America,
Europe and Israel
• Religious and regional differences
• Attitudes of patients, families,
physicians and nurses
• The Israeli Dying Patient Act, 2005
Department of Anesthesiology and
Critical Care Medicine
Hadassah Medical Center
ETHICATT: SYSTEMATIC STUDY OF
GENERAL ETHICAL PRINCIPLES INVOLVED
IN END OF LIFE DECISIONS FOR PATIENTS
IN EUROPEAN
INTENSIVE CARE UNITS
Sprung CL. Intensive Care Med 2007: 33:104
‫מדינת ישראל‬
STATE OF ISRAEL
ETHICATT STUDY
• Empirical study of the attitudes of doctors, nurses,
patients, and families involved in end of life decisions
in different European countries
• Performed in Czechia, Israel, the Netherlands,
Portugal, Sweden and the UK
• Criteria for inclusion: ICU doctors and nurses,
patients previously hospitalized in the ICU within the
last 12 months for more than 3 days and who could
complete the questionnaire, and family members who
were present most in the ICU during the patient’s
hospitalization
• Questionnaires completed 3-6 months after patient
was in ICU
ETHICATT STUDY
• Demographic data: country, age, sex,
marital
status,
children,
religion,
religiosity, income, years of practice and
types of practice for doctors and nurses
• 1899 questionnaires were completed by
528 doctors and 629 nurses who work in
ICUs, 330 patients who survived ICU, 412
families of patients dying or surviving
their ICU stay
END OF LIFE DECISIONS
• Do patients and families want to be in
ICUs, undergo CPR or mechanical
ventilation?
• Do patients or families want to have active
euthanasia?
• Do doctors want the same therapies for
themselves as they want for their patients?
Sprung CL. Intensive Care Med 2007: 33:104
TERMINAL ILLNESS: N (%)
DOCTOR
NURSE
FAMILY PATIENT
ICU
admission
98(19)
130(22)
219(55)
198(62)
CPR
30(6)
61(10)
173(54)
181(45)
Ventilator
37(7)
70(12)
156(49)
155(39)
Sprung CL. Intensive Care Med 2007: 33:104
TERMINAL ILLNESS: ACTIVE EUTHANASIA FOR PAIN
Number (%)
Country
Drs
Nurses
Patients
Families
Sweden
16(15)
26(21)
28(45)
50(59)
England
13(18)
39(36)
17(46)
16(52)
Holland
31(30)
40(35)
25(64)
41(67)
Czechia
49(56)
44(56)
7(35)
13(46)
Portugal
25(54)
54(59)
23(34)
51(51)
Israel
37(42)
41(53)
42(44)
47(48)
171(34) 244(41)
142(44)
218(54)
TOTAL
BIBLICAL ETHICS
• The value and sanctity of human life is infinite
and beyond measure
• Therefore, any part of life is of the same worth
• Active or passive euthanasia is prohibited
• The omission of life-sustaining therapies is
allowed
• An act that hasten’s a patients death, no matter
how laudable the intentions, is equated with
murder
THE DYING PATIENT ACT, 2005
• The new Israeli law is the first law
worldwide whose scope is the
regulation of medical care at the
end of life
• The law also contains novel
concepts and approaches to the
care of the terminally ill
Steinberg A. Intensive Care Med 2006;32:1234
Barilan YM. Perspect Biol Med. 2007;50:557-71
THE DYING PATIENT ACT, 2005
• The Law is based upon an expert consensus process
• The Law provides mechanisms for advance medical
directives, the appointment of surrogate decisionmakers and accepting family information
• A National bank of advance medical directives
• Palliative care as a citizen’s right
• Clear guidelines for physicians to know what is
permitted and prohibited
• The appointment of a senior physician with clear
directives of his responsibilities- documentation and
communication
• Dispute resolution with the establishment of local and
a National Ethics Committee to avoid the courts
THE DYING PATIENT ACT, 2005
• The Law prohibits stopping continuous lifesustaining therapies (ventilator) because this
is viewed as an act that shortens life
• The Law permits stopping intermittent lifesustaining therapies (intubation, dialysis,
chemotherapy)
• Terminating intermittent life-sustaining
treatments is viewed as an omission of the first
or next treatment rather than commission of an
act of withdrawal
Steinberg A. Intensive Care Med 2006;32:1234
THE DYING PATIENT ACT, 2005
BIBLICAL ETHICS OR HALACHA
• These decisions are founded in the Jewish
legal system (Halacha) where there is no
obligation to actively prolong pain and
suffering of a dying patient but any action that
intentionally and actively shortens life is
prohibited
• The withdrawal of a ventilator (a continuous
form of treatment) is considered an act that
shortens life and is therefore forbidden
Steinberg A. Intensive Care Med 2006;32:1234
THE DYING PATIENT ACT, 2005
• As continuing unwanted ventilatory
treatment would prolong suffering, the
Law allows the possibility of changing the
ventilator from a continuous form of
treatment to an intermittent form
• This is performed by connecting a timer
and allowing the ventilator to stop
intermittently
Steinberg A. Intensive Care Med 2006;32:1234
THE DYING PATIENT ACT, 2005
TIMER ATTRIBUTES
The “timer”, as a pragmatic
solution would enable doctors to
honor the wishes of patients and
families without termination of
continuous treatment of a dying
patient which may cause his
death !
Ravitsky V. BMJ 2005;330:415-417
THE DYING PATIENT ACT, 2005
• The Law is based on the Jewish legal concept that not
only the end has to be morally justified (the death of a
suffering terminally ill patient) but also that the means
to achieve the end must be morally correct
• This innovative approach of a timer on a ventilator is
also psychologically helpful to health-care providers
who have problems executing the wishes of the patient
and withdrawing ventilators
Steinberg A. Intensive Care Med 2006;32:1234
ETHICUS: PROBABILITY OF DEATH
OVER TIME
•
•
•
•
Withhold
24 Hours
50%
48 Hours
61%
72 Hours
68%
7 Days
77%
Withdrawal
80%
89%
93%
97%
Sprung et al. JAMA 2003;290:790
SDP
93%
97%
99%
100%
THE ISRAELI DYING PATIENT LAW
• The present Israeli solution is contrary to
most Western countries where no
distinctions are made between continuous
and intermittent therapies, actions and
omissions, withholding and withdrawing
treatments or nutrition and other treatments
Steinberg A. Intensive Care Med 2006;32:1234
CONCLUSIONS- 1
• End of life decisions commonly occur in
North American and European ICUs
• Limitations and variations appear similar in
North American and European ICUs
• Communication, decision making and
documentation are very different in North
America and Europe
• End of life practices are different for
physicians of different religions
CONCLUSIONS- 2
• More withdrawal for Catholic, Protestant or
physicians with no religions
• More CPR for Greek Orthodox and Muslim
doctors
• Less discussions for Greek Orthodox and
Muslim doctors
• Differences in religions in various studies may
relate to acculturation
• Regional differences are likely due to diverse
CONCLUSIONS- 3
• Distinction between treatments to cause
death and to relieve suffering in dying
patients may be unclear
• Patients and families desire more
aggressive therapies than doctors and
nurses
• Patients and families desire active
euthanasia for pain as do doctors and
nurses
CONCLUSIONS- 4a
• The Israeli Dying Patient Act contains
novel concepts and approaches to the care
of the terminally ill which were developed
by consensus and conform to Halacha
• Timers to change ventilators from a
continuous to an intermittent treatment
• Palliative care as a citizen’s right
• A National Bank of advance medical
WELPICUS
• Welpicus- Consensus Guidelines for
Worldwide End of Life Practice for
Patients in Intensive Care Units
• Worldwide ICU societies have
participated in bringing together
experts from at least 27 countries to
develop Worldwide consensus for
end of life practices
WHERE WAS YOUR ICU CARE?