End of Life Care: 2009 Empirical Update

1. End of Life Care:2009 Empirical Update Steven Miles, MD Center for Bioethics Department of Medicine University of Minnesota

2. What % of US deaths are preceded by withholding or withdrawing life-sustaining treatment? • Less than 20% • Less than 40% • About half • 60 to 80% • More than 80%

3. Forgoing Treatmentat the End of Life • 2.2 Million US deaths/ year. • 2.0 Million deaths under health care. • Excludes homicides, car accidents, etc. • 1.8 Million deaths after decisions to withhold or withdraw life-sustaining treatment. • Court involvement/legal risks are small. • Since 1976: 60-80 appellate court decisions, two criminal cases (excluding euthanasia).

4. The Moral and Legal Consensus on Choices about Life Supporting Treatments • Patients have the right to refuse any medical treatment regardless of whether they are "terminal" or “curable.” • There is no difference between • not starting or • stopping a treatment or • using for a trial and then stopping it if is not not benefiting a patient. • Decisionally incapable persons do not lose the right to have any treatment decision made. • Tube feedings are a life-sustaining treatment.

5. Withholding ICU Treatment • Rationale in US for withholding treatment from ICU pts • 45% Imminent death • 50% Quality of life • 5% Disease precluded long-term survival. • 19% ICU patients died, 65% of these after withdrawing tx, 92% in ICU, 8% on ward. • Anaesthesia 1998;53:523-8. • See also Crit Care Med 2005;33:750-5. Observational, prospective, 4 academic and 7 community hospitals in France. Crit Care Med 1997; 25:1324-31 Retrospective cohort, 3 AHC ICUs, 419 pts deaths, 1 yr. Mayo Clin Proc 2006;81:896-901.

6. Diagnoses 19% Congenital heart disease 18% Trauma 14% Pneumonia/ sepsis 14% Anoxia/drown 9% SIDS 26% Other Mode of death 32% Discontinue support 26% DNR 23% Brain death 19% Failed CPR. (58% had limited tx) Crit Care Med 1993;21:1798-802. Withholding Pediatric ICU Tx

7. Medical Care for Old in Last Year of Life • Last year of life • 11% USA health $ • 27% M’care costs (flat x20y) • Health Aff 2001;20:188-95. • Universal use of • Advance directives • Hospice care • Futility guidelines would reduce medical costs 3.5%. NEJM 1993:1092 JAMA 2001;2861349-55.

8. Practice Variations Identify problems with care. Identify educational needs.

9. ICU Practice Variation • 4-79% (23%) received full tx + failed CPR. • 0-83% (22%) received full tx without CPR. • 0-67% (10%) had life support withheld. • 0-79% (38%) had life support withdrawn. • Variation unrelated to ICU or hospital type, number of admits, or ICU mortality. • 131 ICU, 110 hosp, 38 states, 5,910 non-brain dead pts. Amer J Resp Crit Care Med 1998;158:1163-7. • Similar variations across Europe. JAMA 2003;290:790-7 and Canada Chest 2000;118:1424-30.

10. Physician Factors Physician Psyschology Disclosing Prognosis

11. MD Death Anxiety and Terminal Care • MDs with  death anxiety • Treat more aggressively • Less tolerant of clinical uncertainty • Less like caring for elderly patients • Greater interest in medical specialties • 1/3 of MDs are uncomfortable discussing terminal care with patients -- 1/10 after discussing these issues with family. • Arch Int Med 1990:653 Psychol Rep 1998;83:123-8. • Neonatologists with more fear of being destroyed said that palliative care and allowing to die of seriously ill or disabled newborns was unacceptable. • Archives of Disease in Childhood Fetal & Neonatal Edition 2007; 92:F104-7.

12. Qualitative info. 80% want 66% ask. 88% given 20% do not want. 22% ask for it. 61% given!! Quantitative info. 53% want 66% ask for it 55% given. 46% do not want 2% ask for it. 4% given. Patient Preferences on Prognosis Educated, sicker, fearful, and acceptance of death want more information. Health Comm 2002;14;221-241. N=351 (a 24% return to a single mailing of pts registered with Mich Am Can Soc. Oversamples breast cancer.)

13. Disclosing Prognosis • 97% of pts, MDs were able to prognose. • 23% of MDs said they would not tell pt. • 37% would tell pt. • 40% would tell a different prognosis, (70% of these were longer) • Older MDs and less confident MDs favored less disclosure. • Ann Int Med 2001;134:1096-105. Prospective, 326 cancer, hospice pts.

14. Physicians and Prognosis • 26 of 37 patients were given no information about prognosis for palliative cancer chemotherapy. • 11 were given vague references (e.g. buy you some time, a few months extra) • BMJ 2008;337:a752. UK. Prospective, recordings, 37 patients with incurable cancer, 9 MDs, one hospital. Ann Int Med 2001;134:1096-105.

15. Prognosis for Newly Admitted Hospice Patients • MDs overestimate survival by 5.3 fold • 20% of prognoses were within 33% of survival • 63% were over optimistic • 17% were over pessimistic. • Ann Int Med 2001;134:1096-105. Prospective,5 outpatient hospices, 343 MDs, 468 terminally ill patients on admit, median survival: 24 days. • MDs in upper quartile of practice experience are the most accurate • BMJ 2003;327;195-200. BMJ 2000;320: 469-73. These errors occur during the time when most hospice, DNR, etc decisions are made.

16. Prognosis. Huh? • Patients and clinicians were more likely to agree that discussions about prognosis had taken place when patients were • poorer (odds ratio 2.3), • nonwhite (OR 2.6), or • 60 to 80 years old (OR 4.1) compared to pts who were wealthier, white or > 80. • J Pall Med  2005;8:998-1004. USA Cross-sectional survey in participants' homes. 214 patients >60 with serious CHF, COPD, or CA and their primary clinicians.

17. In–Pt CPR Survival to Discharge • 30% for pt’s with primary arrest 2o MI •  10% for med ward patients. • <4% for MICU patients • Arch Int Med 1995;155:1277-80/2001;161:1751-8 • J Gen Int Med 1998;13:805-16 • Resuscitation 1996;33:13-7/ 2001;48:111-6.

18. Public: discharge after hospital CPR is 65%. Acad Emerg Med 2000;7:48-53 N=269 Elderly: discharge after hospital CPR is 62% 41% for NH residents 40% in severe infection 28% in metastatic CA. Arch Int Med 1992;152: 578-82. N 248. All Chicago Hope, ER, and Rescue CPRs 94-95: 67% survive to discharge N Engl J Med 996;334:1578-82. The “Chicago Hope” Effect

19. Patient Factors in Decisionmaking Knowledge Psychology Values

20. Patients’ Knowledge of Advance Directives • 93% familiar with one or more ADs. • 43% claimed to have an AD; • 25% of these thought their MD had a copy. • Correlation between having AD and age, reading ability or education (all P < .001). • Am J Med 2006;119:1088.e9-13. Prospective, 508 adults, 4 academic IM clinics at four academic internal medicine clinical sites in NY, 2004. Multivariate regression.

21. Patient's Views on Life Support • Affirm doctor-led patient involvement... • 80-90% P'ts should be encouraged to discuss. • 60-80% P'ts should be involved. • 55-70% MD's recommendation should be important or decisive. • J Gen Int Med  2000;15:248-55.  

22. Many seriously ill, hospitalized adults want others to decide for them. • 78% (71% of elderly) prefer to have family and MD decide about CPR or forgoing treatment. • 29% (22% of elderly) prefer to have their own stated preferences followed if they lost decision-making capacity. • J Am Geriatr Soc 2000;48(5 Suppl):S84-90. 5 AHC, 2203 seriously ill adult inpatients and 1226 older inpatients with preferences about CPR. SUPPORT

23. Family more aggressive than patient. Family estimate of pt’s preference not improved by living will, improved by talk. Arch Int Med 2001;161:421-30. J Pain & Sympt Manag 2005;30:498-509. Patient and Relative Agreement on P'ts Treatment Preferences What are the implications of doctors feeling more comfortable talking with family than with patient? Circulation 1998;98:648-55.

24. Economic Hardship andPreferences for Life-Prolonging Care • Odds-ratio for desire to avoid life-prolonging care • Econ. hardship 1.3 • Pain 1.3 • Age 1.3 (per decade) • Depression 1.5 Seriously ill & > 65 • 24% loss of most or all of family savings • 11% change in major family plans • 27% with either have economic hardship. Arch Int Med 1996:156:1737

25. Religion andPreferences for Life-Prolonging Care • 88%: religion somewhat/very important. • 47%: spiritual needs minimally/not at all supported by religious community • 72%: spiritual needs minimally/not at all supported by medical system. • Spiritual support by religious communities or medical system associated with Quality of Life (P = .0003). • Religiousness associated with wanting all measures to extend life (OR 2.0 95% CI, 1.1-3.6). • J Clin Onc 2007;25:555-60. 230 CA pts. See also Palliat & Supportive Care 2006; 4:407-17.

26. Religious Coping and Use of Life-Prolonging Care • High level of religious coping compared to low was associated with • More use of respirators (11 vs 4%; P=.04) • More intensive care during last week of life (14 vs 4%; P=.03). • Same use of hospice (71 v 73%; P=.66) • JAMA 2009;301:1140-7. • Prospective mulitvariate analysis at 7 hospitals across US of 345 adults with advanced cancer followed to death, median survival 122 days. • Religious coping: I seek God’s love and care, etc.

27. Family Factors in Decisionmaking Psychology Values

28. ICU Family Stress • 69% relatives had symptoms of anxiety • 35% depressed • More anxiety for: • Acute illness • Absence of regular MD-RN meetings, • Lack of room reserved for meetings with relatives. Crit Care Med 2001;29:1893-7. Prospective study, 43 French ICUs (6 peds), 637 pts, 920 relatives.

29. ICU Family Stress • 46% Conflict with med staff (disregarding the primary caregiver in tx discussions, miscommunication, unprofessional behavior). • 48%: Valued clergy. • 27%: Wanted better space for meetings. • 48%: Preferred attending MD as info source. • Crit Care Med 2001;29:197-201. 6 AHC ICUs. Audiotape audit. See also Chest 2005;127:1775-83.

30. MDs, RNs and Families • RNs less likely than MDs to say • Families well informed about advantages and limitations of further therapy (89% vs. 99%; p < .003) • Ethics issues discussed well in the team (59% vs. 92%; p < .0003) • Ethical issues discussed well with family (79% vs. 91%; p < .0002) Crit Care Med 2001;29:658-64. Cross-section survey; 31 US peds hosp. See also Chest 2005;127:1775-83.

31. Family Neonatal ICU Stress • When a baby died swiftly, it confirmed wisdom of decision to stop tx otherwise doubts were raised. • 22% had concerns about length of dying reported as 3-36 hours. • Deaths that medical teams predicted would be quick took 1.5 to 31 hrs. • Arch Dis Childh’d:Fetal & Neonatal Ed 2001;85(1):F8-12. (Scotland) 59 sets of parents, 3 and 13 months after death. • Efforts to improve EOL decision making did not improve parents’ satisfaction with care of children. • Pediatric Critical Care Medicine. 5(1):40-7, 2004 Jan. USA

32. Working on Decisionmaking Psychology Values

33. Facing the Parodox With Caregivers • How do we remain faithful as we let go of a loved one who is dying. • This is why so many discussions of Do-Not orders break down. • Offer Goals, not limits. • Offer Alternatives, not this or nothing. • Offer Continuity, not abandonment.

34. The intergenerational gift between dying persons and their caregivers. On death

35. Family meeting tips • Be inclusive of large families • Be inclusive of family clergy in preference to hospital chaplains (consider pre-contact with clergy) • Minimize staff in room. • Sit down • Take time • Private space

36. Family Satisfaction with EoL Conferences • Mean meeting time 32 min SD=15 min). • Family spoke 30%, MDs 70% • % Family speaking time correlated with perceived quality of MD information, MD listening, MD understanding of issues, meeting needs, and conflict resolution. • Crit Care Med 2004;32:1284-88. Tapes of 51 meetings with 51 families, 214 relatives, 4 hospitals, 36 MDs. 111 potential meetings, 36 families excluded because of MD pref. 46% of approached families consented to taping. • Similar to study showng that understanding is poor and improves with longer meetings. J en In Med 1995;10:436-442.

37. The Effect of Discussing Planning to Forgo Life Support on Patients • Positive effects 75-80% • Increase sense of control, relief, enhance life satisfaction, sense of being cared for. • Decrease depression for internal controlled persons • Positive effects are very long lasting • Negative effects 10-15%: • Upsetting, saddening, resignation, fear about health. • J Gen Int Med 1988;322 Arch Int Med;146:1613 1990;150:653 1992;152:2317

38. Treatment, discussions and acceptance of death Number of Aggress Interventions • Family and pts having end of life discussions vs those not having discussions • Accept life as terminal (53 v 29% p .001) • Value comfort over life extension (84 v 74% .001) • Against death in ICU (63 v 28% .001) JAMA 2008;300:1665-73.

39. The best ICU experience is withdrawal over 2 days Dialysis, then Hydration then Tube feeding then Pressors then Lab tests then Respirator Stuttered Withdrawal Works Best Am J Resp Crit Care Med 2008;178:798-804. 15 hospitals, 584 patients

40. Ethics Consultations’ Effect on Patient Care

41. Admission ICU Goal/Prognosis Meetings • Multidiscip conf to discuss goals, expectations, milestones, & time frames for ICU tx. F/u to discuss palliative care when goals not met. • Reduced LOS from (2 to 11) days to (2 to 6) days, P>.01 [interquartile range]. • Earlier access to palliative care • No increased ICU mortality. • Amer J Med 2000;109:469-75. 530 consecutive adult med ICU AHC pts. • See also Eur J Cancer 2007;43:316-22.

42. Mid-Course ICU Ethics Consults • RNs could unilaterally ask for ethics consults if they saw unaddressed ethics issues •  Hospital days (-2.95, P = .01) •  ICU days (-1.44, P = .03) •  Vent days (-1.7 days, P = .03) • Mortality: no difference. • Consultations regarded favorably • Prosp, RCT, adult ICUs, 7 hospitals, N=551. JAMA 2003;290:1166-72. • Same as Peds/Adult ICU study Crit Care Med 2000; 28:3920-4.

43. Mid-Course ICU Ethics Consults • Mandatory ethics consultation after 96 hours of respirator treatment (v historical control or optional ethics consults) • More decisions to forgo life-support and reduced LOS. • Crit Care Med 1998;26:252-9. Prospective, controlled study, N=99. Recent historical control. Standard prompts on decisions and communication. Action strategies suggested.

44. Summary on ICU Ethics Consults • Mandatory or routine interventions better. • Lead to more effective use of palliative care plans without increasing mortality. • Financial impact: Some cost saving effect but primary value-added effect is increasing available ICU bed days by decreasing ICU use for non-survivors. • Health Affairs. 24(4):961-71, 2005

45. Palliative Care

46. Non-Hospice Prevalence 70+% Pain 70% Dyspnea 80% Dry Mouth 80% Delirium 85% Lack of energy Quality Benchmarks Pain <10% Dyspnea <20% Delirium ?? Agitation <10% Symptoms of New Hospice Patients(last month of life) Onc Nurs Forum 2002;29:1421-8. See also J Pain & Symptom Manage 2000;20:87-92. Prospective study. N=281 hospice patients

47. Jump WHO’s steps? • Jump I  III did better than I  II  III: •  % days with worst pain < .01. • Supp Care in Cancer 2005;13: 888-94, 54 adults, advanced CA, randomized, followed 90 days. • Jump to 0 to III: Fewer tx changes, greater  in pain,  satisfaction (P=.04). • No difference: QoL or performance. No tolerance. • J Pain & Sympt Manag 2004; 27:409-16. 100 CA pts with mild-moderate pain.

48. Pain (7.1-4.2) Fatigue (7.5-5.7) Nausea (7.1-2.) Depression (7.3-5.3) Dyspnea (7.1-3.9) Anxiety (7.1-5.1) Drowsiness (7.4-6.4) Anorexia (7.3-4.3) Well-being (6.8-3.8) J Pain & Sympt Manag 2005; 30:367-73. 314 hospital pts over 7 days, all .0001. Compliance with key practice measures correlates with improved clinical, LOS, and cost outcomes. J Pall Med 2007;10:86-98. See also Cancer 2002;87:733-9. J Clin Onc 2001;19:3884-94. Palliative Care Unit Effect

49. Opioid Escalation • Rapid opioid titration monitored 20 days. • Pain adequately controlled and opioid doses stable in 40 h. • Drowsiness, constipation and dry mouth , then flat then drowsiness . •  Euro J Pain 2006;10:153-9. • See also Pain 2005;117:388-95.

50. Dyspnea • 70% of CA patients, survival 12 weeks. • Clinical assessment is poor as the symptom of breathlessness is poorly correlated with hypoxia or tachypnea. Am J Hosp Palliat Care 2000, 17:259-264. • 20% obtain relief with O2, broncho-dilators, parenteral opiates, anxietyolytics. Cancer 1996;78:1314-9.