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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. OPTIONS AT THE END OF LIFE. FULL CONTINUED CARE. WITHHOLDING TREATMENT. WITHDRAWING TREATMENT. ACTIVE LIFE ENDING PROCEDURES. END OF LIFE DECISION MAKING.

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End of life care around the world Charles Sprung MD

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  1. Department of Anesthesiology and Critical Care MedicineHadassah Medical Center End of life care around the worldCharles Sprung MD

  2. OPTIONS AT THE END OF LIFE FULL CONTINUED CARE WITHHOLDING TREATMENT WITHDRAWING TREATMENT ACTIVE LIFE ENDING PROCEDURES

  3. 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

  4. 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

  5. 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

  6. 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

  7. 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

  8. END OF LIFE DECISION MAKING • North American approach Autonomy • European approach Paternalistic

  9. 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MAKING FULL CARE + CPR 26% (4 - 79%) FULL CARE - NO CPR 24% (0 - 83%) TREATMENT WITHHELD 14% (0 - 67%) TREATMENT WITHDRAWN 36% (0 - 79%) Prendergast TJ.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

  10. 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

  11. 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

  12. Department of Anesthesiology and Critical Care MedicineHadassah Medical Center ETHICUS: PROSPECTIVE, OBSERVATIONAL STUDY OF END OF LIFE DECISION MAKING IN EUROPEAN INTENSIVE CARE UNITSSprung et al. JAMA 2003;290:790 מדינת ישראל STATE OF ISRAEL

  13. 31,417 4,280 32 4,248 STUDY POPULATION Included: all consecutive patients who died or had limitation of treatment (WH, WD, SDP) from 1.1.1999 - 30.6.2000 Screened patients Total study patients Excluded patients Study patients 37 centres 17 countries (13.5%)

  14. NORTHERN CENTRAL SOUTHERN GEOGRAPHICAL REGIONS

  15. n (%) 832 (20) 330 (8) 1594 (37) 1398 (33) 94 (2) 4248 (100) RANGE (%) 7 - 48 0 - 15 16 - 70 5 - 69 0 - 19 CPR BRAIN DEATH WITHHOLD WITHDRAW SDP TOTAL END-OF-LIFE CATEGORIES

  16. 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

  17. DOCTOR RELIGIONS NUMBER (%) 1554 (37) 957 (22) 883 (21) 393 (9) 330 (8) 38 (1) 67 (1) 26(1) 4248 (100) RELIGION Catholic None Protestant Jewish Greek Orthodox Islam Unknown Other TOTAL Sprung CL. Intensive Care Med 2007: 33:1732

  18. END OF LIFE DECISION BASED ON DOCTOR’S RELIGION RELIGION CPR WITHDRAWING WITHHOLDINGNUMBER (%)NUMBER (%)NUMBER (%) CATHOLIC 317 (22) 648 (46) 450 (32) PROTESTANT 84 (10) 390 (46) 380 (45) GREEK ORTH 109 (39) 37 (13) 131 (47) JEWISH 60 (16) 58 (16) 251 (68) ISLAM 14 (37) 9 (24) 15 (40) NONE 209 (24) 331 (38) 338 (39) TOTAL 793 (21) 1473 (38) 1565 (41) Sprung CL. Intensive Care Med 2007: 33:1732

  19. 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

  20. PATIENT WAS MENTALLY COMPETENT WHEN END OF LIFE DECISION WAS MADE Number% No 3360 79 Yes 195 5 Not Applicable 693 16 TOTAL 4248 100 Cohen S. Intensive Care Med 2005; 31:1215

  21. INFORMATION RECIEVED ABOUT PATIENTS’ WISHES Number % No 2702 64 Yes 850 20 Not Applicable 694 16 TOTAL 4246 100 Cohen S. Intensive Care Med 2005; 31:1215

  22. INFORMATION ABOUT PATIENTS’ WISHES BY RELIGION RELIGION INFORMATION CATHOLIC 13% PROTESTANT 28% GREEK ORTHODOX 21% JEWISH 22% ISLAM 5% NONE 24% TOTAL 20% p < 0.0001 Sprung CL. Intensive Care Med 2007: 33:1732

  23. END-OF-LIFE DECISION DISCUSSED WITH FAMILY Number % No 974 32 Yes 2107 68 TOTAL 3081 100

  24. Prospective study of deaths in 37 ICUs in 17 countries 3086 patients with limitation of treatment Discussions Based on Physician Religion Sprung, ICM 2007; 33:1732

  25. 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

  26. 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

  27. 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

  28. END-OF-LIFE CATEGORIES BY REGION 1600 CPR BRAIN DEATH WITHHOLD 1200 WITHDRAW SDP 800 400 0 NORTHERN CENTRAL SOUTHERN TOTAL Sprung CL. JAMA 2003;290:790

  29. MEDIAN TIME FROM ICU ADMISSION TO FIRST LIMITATION BY REGION REGION MEDIAN TIMES (days) NORTHERN 1.6 (IQR:4.8) CENTRAL3.3 (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

  30. 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

  31. WRITTEN ORDERS & DOCUMENTATION FOR DNR BY REGION REGION WRITTEN ORDERS DOCUMENTATION NORTHERN1029/1300- 79% 1141/1301- 88% CENTRAL702/898- 78% 689/897- 77% SOUTHERN260/883- 29% 304/881- 35% TOTAL1991/3081- 65% 2134/3079- 69% p < 0.0001 p < 0.0001 Cohen S. Intensive Care Med 2005; 31:1215

  32. INFORMATION CONCERNING PATIENT WISHES BY REGION REGION NORTHERN CENTRAL SOUTHERN 461/1505- 31% 188/1209-16% 201/1534-13% p < 0.0001 Cohen S. Intensive Care Med 2005; 31:1215

  33. DISCUSSIONS WITH PATIENTS AND FAMILIES BY REGIONS REGION PATIENT FAMILY NORTHERN58/1303- 5% 1093/1303- 84% CENTRAL29/900- 3% 597/900- 66% SOUTHERN9/883- 1%417/883- 47% TOTAL96/3086- 3% 2107/3086- 68% p < 0.0001 p < 0.0001 Cohen S. Intensive Care Med 2005; 31:1215

  34. 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

  35. OPTIONS AT THE END OF LIFE FULL CONTINUED CARE WITHHOLDING TREATMENT WITHDRAWING TREATMENT ACTIVE LIFE ENDING PROCEDURES

  36. Therapeutic Limitations in SAPS3 Study Azoulay E. Intensive Care Med 2009;35:623-630

  37. 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

  38. 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

  39. Therapeutic Limitations in SAPS3 Study cancer patients mechanical ventilation FLST mortality Azoulay E. Intensive Care Med 2009;35:623-630

  40. 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

  41. Department of Anesthesiology and Critical Care MedicineHadassah Medical Center ETHICATT: SYSTEMATIC STUDY OF GENERAL ETHICAL PRINCIPLES INVOLVED IN END OF LIFE DECISIONS FOR PATIENTS IN EUROPEAN INTENSIVE CARE UNITSSprung CL. Intensive Care Med 2007: 33:104 מדינת ישראל STATE OF ISRAEL

  42. 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

  43. 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

  44. 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

  45. TERMINAL ILLNESS: N (%) DOCTOR NURSE FAMILY PATIENT ICUadmission 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

  46. TERMINAL ILLNESS: ACTIVE EUTHANASIA FOR PAIN Number (%) CountryDrs 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) TOTAL171(34) 244(41) 142(44) 218(54)

  47. 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

  48. 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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