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End of life care around the world Charles Sprung MD
Department of Anesthesiology and Critical Care Medicine Hadassah Medical Center End of life care around the world Charles Sprung MD
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OPTIONS AT THE END OF LIFE
WITHHOLDING TREATMENT WITHDRAWING TREATMENT FULL CONTINUED CARE ACTIVE LIFE ENDING PROCEDURES
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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
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Approximately 20% of patients dying in the United States die in ICUs
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: 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:
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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
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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:
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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:
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END OF LIFE DECISION MAKING
North American approach Autonomy European approach Paternalistic
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END OF LIFE DECISION MAKING
FULL CARE + CPR % (4 - 79%) FULL CARE - NO CPR % (0 - 83%) TREATMENT WITHHELD % (0 - 67%) TREATMENT WITHDRAWN 36% (0 - 79%) Prendergast TJ. Am J Resp CCM 1998; 158:1163
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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
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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
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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
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STUDY POPULATION 37 centres 17 countries 31,417 4,280 32 4,248 (13.5%)
Included: all consecutive patients who died or had limitation of treatment (WH, WD, SDP) from 37 centres 17 countries Screened patients Total study patients Excluded patients Study patients 31,417 4,280 32 4,248 (13.5%)
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GEOGRAPHICAL REGIONS CENTRAL NORTHERN SOUTHERN
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END-OF-LIFE CATEGORIES
CPR BRAIN DEATH WITHHOLD WITHDRAW SDP TOTAL n (%) 832 (20) (8) 1594 (37) 1398 (33) 94 (2) 4248 (100) RANGE (%) 7 - 48 0 - 15 5 - 69 0 - 19
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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
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Sprung CL. Intensive Care Med 2007: 33:1732
DOCTOR RELIGIONS RELIGION Catholic None Protestant Jewish Greek Orthodox Islam Unknown Other TOTAL NUMBER (%) 1554 (37) 957 (22) 883 (21) (9) (8) 38 (1) 67 (1) 26 (1) 4248 (100) Sprung CL. Intensive Care Med 2007: 33:1732
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END OF LIFE DECISION BASED ON DOCTOR’S RELIGION
RELIGION CPR WITHDRAWING WITHHOLDING NUMBER (%) NUMBER (%) NUMBER (%) CATHOLIC (22) (46) (32) PROTESTANT (10) (46) (45) GREEK ORTH (39) (13) (47) JEWISH (16) (16) (68) ISLAM (37) (24) (40) NONE (24) (38) (39) TOTAL (21) (38) (41) Sprung CL. Intensive Care Med 2007: 33:1732
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MEDIAN TIME FROM ICU ADMISSION TO FIRST LIMITATION BY DOCTOR RELIGION
RELIGION MEDIAN TIMES (days) CATHOLIC (IQR:11.2) PROTESTANT (IQR:4.6) GREEK ORTHODOX 7.6 (IQR:13.9) JEWISH (IQR:12.1) ISLAM (IQR:6.9) NONE (IQR:7.5) TOTAL (IQR:16.8) p < Sprung CL. Intensive Care Med 2007: 33:1732
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PATIENT WAS MENTALLY COMPETENT WHEN END OF LIFE DECISION WAS MADE
Number % No Yes Not Applicable TOTAL Cohen S. Intensive Care Med 2005; 31:1215
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INFORMATION RECIEVED ABOUT PATIENTS’ WISHES
Number % No Yes Not Applicable TOTAL Cohen S. Intensive Care Med 2005; 31:1215
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INFORMATION ABOUT PATIENTS’ WISHES BY RELIGION
RELIGION INFORMATION CATHOLIC % PROTESTANT 28% GREEK ORTHODOX 21% JEWISH % ISLAM % NONE % TOTAL % p < Sprung CL. Intensive Care Med 2007: 33:1732
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END-OF-LIFE DECISION DISCUSSED WITH FAMILY
Number % No Yes TOTAL
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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
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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 Descriptive Israeli study demonstrated that Jewish physicians withheld and did not withdraw therapies Eidelman LA. Intensive Care Med 1998;24:
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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
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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
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END-OF-LIFE CATEGORIES BY REGION
400 800 1200 1600 NORTHERN CENTRAL SOUTHERN TOTAL CPR BRAIN DEATH WITHHOLD WITHDRAW SDP Sprung CL. JAMA 2003;290:790
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MEDIAN TIME FROM ICU ADMISSION TO FIRST LIMITATION BY REGION
REGION MEDIAN TIMES (days) NORTHERN (IQR:4.8) CENTRAL (IQR:11.0) SOUTHERN (IQR:12.3) TOTAL 2.8 (IQR:9.2) p < 0.001 Sprung CL et al. JAMA 2003;290:790
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MEDIAN TIMES FROM FIRST LIMITATION TO DEATH
REGION MEDIAN TIMES (HRS) NORTHERN (IQR: 12.2) CENTRAL (IQR: 74.2) SOUTHERN (IQR: 57.9) TOTAL (IQR: 51.0) p < Sprung CL et al. JAMA 2003;290:790
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WRITTEN ORDERS & DOCUMENTATION FOR DNR BY REGION
REGION WRITTEN ORDERS DOCUMENTATION NORTHERN / % 1141/ % CENTRAL / % / % SOUTHERN / % / % TOTAL / % / % p < p < Cohen S. Intensive Care Med 2005; 31:1215
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INFORMATION CONCERNING PATIENT WISHES BY REGION
REGION NORTHERN CENTRAL SOUTHERN 461/ % / % / % p < Cohen S. Intensive Care Med 2005; 31:1215
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DISCUSSIONS WITH PATIENTS AND FAMILIES BY REGIONS
REGION PATIENT FAMILY NORTHERN / % / % CENTRAL /900- 3% / % SOUTHERN /883- 1% / % TOTAL / % / % p < p < Cohen S. Intensive Care Med 2005; 31:1215
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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
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OPTIONS AT THE END OF LIFE
WITHHOLDING TREATMENT WITHDRAWING TREATMENT FULL CONTINUED CARE ACTIVE LIFE ENDING PROCEDURES
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Therapeutic Limitations in SAPS3 Study
Azoulay E. Intensive Care Med 2009;35:
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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:
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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:
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Therapeutic Limitations in SAPS3 Study
cancer patients mechanical ventilation FLST mortality Azoulay E. Intensive Care Med 2009;35:
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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
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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
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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
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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
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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
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TERMINAL ILLNESS: N (%)
DOCTOR NURSE FAMILY PATIENT ICU admission 98(19) (22) (55) (62) CPR 30(6) 61(10) (54) (45) Ventilator 37(7) 70(12) (49) (39) Sprung CL. Intensive Care Med 2007: 33:104
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TERMINAL ILLNESS: ACTIVE EUTHANASIA FOR PAIN Number (%)
Country Drs Nurses Patients Families Sweden (15) 26(21) 28(45) (59) England (18) 39(36) 17(46) 16(52) Holland (30) 40(35) 25(64) 41(67) Czechia (56) 44(56) 7(35) 13(46) Portugal (54) 54(59) 23(34) 51(51) Israel (42) 41(53) 42(44) 47(48) TOTAL (34) 244(41) 142(44) (54)
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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
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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
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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 decision-makers 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
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THE DYING PATIENT ACT, 2005 The Law prohibits stopping continuous life-sustaining therapies (ventilator) because this is viewed as an act that shortens life The Law permits stopping intermittent life-sustaining 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
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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
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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
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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:
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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
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ETHICUS: PROBABILITY OF DEATH OVER TIME
Withhold Withdrawal SDP 24 Hours 50% 80% % 48 Hours 61% 89% % 72 Hours 68% % % 7 Days 77% % % Sprung et al. JAMA 2003;290:790
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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
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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
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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 religions
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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
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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 directives
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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
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WHERE WAS YOUR ICU CARE?
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