End of Life Decisionmaking: 2010 Empirical Update

1. End of Life Decisionmaking:2010 Empirical Update Conflict of Interest Disclosure Neither the speaker nor any member of his immediate family has any personal or institutional or financial relationship with any health care lobbying group or insurance company or pharmaceutical or medical device manufacturer. I do not represent the position of such groups on a voluntary basis. I do not take honorariums or educational grants from such groups. The material for this talk was entirely gathered by independent scholarship. Steven Miles, MD; University of Minnesota

2. OVERVIEW • Epidemiology of end of life care • Physician Factors • Patient Factors • Family Factors • Clinician-patient-family communication • Ethics Consultation • Hospice • Grief

3. Epidemiology of End of Life Decisions

4. 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%

5. Death in the US Health Affairs 2004;23:194-200 Nursing Homes: 21% of deaths, ~65% lim tx plans, 90% of deaths have lim tx Eg. dementia Home Hospice: 21% of deaths, 100% lim tx plans, 100% of deaths have lim tx. Eg. Pancreas cancer Hospitals: 43% of deaths, ~15% of pts lim tx plans, 85% of deaths with lim tx plans

6. How Common are Limited Treatment Plans at the End of Life? • 2.4 Million US deaths/ year. • 2.1 Million deaths under health care. • Excludes homicides, car accidents, etc. • ~1.8 Million deaths/ year under a plan that includes decisions to withhold or withdraw life-sustaining treatment. • Court involvement/legal risks are small. • Since 1976: ~150 appellate court decisions, two criminal cases (excluding euthanasia).

7. 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 • stopping a treatment or • not starting 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.

8. Medicare Spending in Last Year of Life • Last year of life • 11% life time health costs. • 30% M’care $ go to 5% of beneficiaries in last year of life (flat x 20y). • From 1985 to 1999. • Hospital deaths ↓ from 44 to 39% of all deaths. • ICU use by decedents ↑ from 30% to 35%. • Health Serv Res 2004:39;363-75. • Primary care visits in last year of life, associated with: • ↓ hospital days (15.3 d for those with 0 visits vs. 13.4 for those with > 8 visits, P < 0.001), • ↓ costs ($24,400 vs. $23,400, P < 0.05), • ↓ in-hospital death (44% vs. 40%, P < 0.01) • J Gen Int Med 2008;23:1330-5. Retrosp mulitvar, 78,356 Medicare decedents in 2001. JAMA 2001;2861349-55.

9. Physician Psychology MDs who are uncomfortable with death are: less likely to plan with patients, less likely to effectively work with team members for end of life care and, treat dying patients more aggressively.

10. MD Death Anxiety and Terminal Care • MDs with  death anxiety • Treat more aggressively • Less tolerant of clinical uncertainty • Like elderly patients less • Greater interest in 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. • CMAJ 2000;163:1255-9. • Doctors, nurses, or social workers with higher personal fear of death less likely to • Disclose prognosis p.004 • Assist with seleecing a proxy decisionmaker .000 • Collaborate with a team on advance planning .003 • Death Studies 2007;31:563-572. N135, one institution • Neonatologists more afraid of being destroyed said palliative care or allowing seriously ill or disabled newborns to die is unacceptable. • Arch Dis Childhood Fetal & Neonatal Ed 2007;92:F104-7.

11. Patient Factors Knowledge Psychology Values

12. 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.

13. Preferences for Life-Prolonging CareEconomic Hardship and Affect • Odds-ratio for desire to avoid life-prolonging tx • Econ. hardship 1.3 • Pain 1.3 • Age 1.3 (per decade) • Depression 1.5 • Arch Int Med 1996:156:173 • Depression weakly assoc with life-sustaining tx choices but when financial impact added, more depressed subjects refused tx they had desired. • J Amer Ger Soc 2001;49: 153-61. Cross-sect, 1 hospital; 158 pts, >60 yo into depressed (n = 71) and non-depressed groups. Multivariate.

14. Religion and Preferences 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). (See also J Pall Med 2006;9:646-57.) • Religiousness associated with wanting all measures to extend life (OR 2., 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.

15. Religious Coping and Use of Life-Prolonging Care • High use of religious coping 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 multivariate analysis at 7 hospitals across US, 345 adults with advanced cancer followed to death, median survival 122 days. Religious coping: I seek God’s love and care, etc.

16. Family Factors in Decisionmaking

17. 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't’s Treatment Preferences What are the implications of doctors feeling more comfortable talking with family than with patient?

18. Distress in Relatives of Persons Dying of CA Patients with Advanced CA with dependent children • Major depression 4.5% - 27% • Generalized anxiety disorder 3.5% -10% • Panic disorder 8.0% - 10% • Complicated grief disorder 5%. • Post-traumatic stress disorder 4.0% • Crit Care Med 2008;36:1722-8. one teaching hospital N 41 caregivers. • J Clin Onc 2005;23:6899-907. 200 caregivers of advanced cancer pts . • ↑ panic disorder (OR=5.41) • ↑ desire for aggressive tx vs palliative care (OR=1.77) • ↓ advance care planning (e.g., DNR) (OR,=0.44) • ↓ quality of life in the last week of life (P=.007). • Spousal caregivers with dependent children had more major depression (OR, 4.53) and generalized anxiety disorder (OR, 3.95). • Cancer. 2009;115:399-409, 6 hospitals, prosp, 668 pts with advanced CA.

19. ICU Family Stress • 69% relatives had symptoms of anxiety. (Caregivers who saw loved one with delirium 2X as likely to have generalized anxiety (p < 0.04 after multi-variate adjust). J Palli Med 2007;10:1083-92. 200 caregivers of patients with terminal cancer.) • 35% depressed • More anxiety when: • Acute illness • Absence of regular MD-RN meetings, • Lack of room reserved for meetings with relatives. Crit Care Med 2001;29:1893-7. Prosp study, 43 French ICUs (6 peds), 637 pts, 920 relatives. Similar data in US, see. Crit Care Med 2008;36:1722-8.

20. 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.

21. Families experiencing ICU deaths have severe distress. • Depression: 18% • (14-24%) • PTSD: 14% • (95% CI=10-19%). Family traits • Knowing pt for shorter time • PTSD, P = .003 • Depression, P = .040) • Discord between relatives' prefs for DM v their DM roles • PTSD, P=.005 • Depression, P= .05 Chest 2010;137:280-7. Prosp, multivar, 226 families

22. Clinician-patient-family communication Disclosing Prognosis Family Meetings

23. 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. MDs Readily Provide Qualitative Terminal News; Withhold Quantitative Bad News 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.)

24. All Chicago Hope, ER, and Rescue CPRs 94-95: 67% survive to discharge N Engl J Med 1996;334:1578-82. Public: healthy hospital discharge after CPR: 65%. Acad Emerg Med 2000;7:48-53. Reality: Elderly discharge after inpatient CPR is 18%, less with comorbidities. (This number is increased by many who opt out of CPR by DNR.) New England Journal of Medicine. 361(1):22-31, 2009 The “Chicago Hope” Effect • Only 7% of living wills created with an MD. • 19% of pts knew prognosis after CPR. When informed, 37% of living wills were changed. • J Crit Care 2005;20:26-34. A 325-bed hospital 82 pts with living wills on admission.

25. Disclosing Prognosis • 97% pts, MDs able to make a prognosis. • 23% of MDs: 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. Patients given vague information, e.g., “buy some time.” BMJ 2008;337:a752. or J Clin Onc 2008;26:5988-93. 729 MDs.

26. Prognosis for New Hospice Admits • MDs overestimate survival by 5.3 fold • 20% of prognoses were within 33% of survival • 63% over optimistic • 17% 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 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.

27. Dr.: What would you do when this asymptomatic pt has 4-6 months to live? When would you discuss hospice? • 65%: discuss prognosis now. • 44%: discuss DNR (Most would wait for sx or no more tx to offer. • 26%: discuss hospice. • 21%: discuss preferred site of death. • Non-cancer specialists were more likely than cancer specialists to discuss DNR status, hospice, and preferred site of death now (all P < .001). • Cancer 2010;998-1006. Nat survey 4074 MDs txing CA pt. Multi var.

28. Patient with less than 6 months to live: What have you been told? • 53% had discussed hospice with MD. • Patients with more severe pain, dyspnea or a greater desire for palliative care were no more likely to have discussed hospice than those with less severe symptoms (23 v 19% p=.31) • Arch Int Med 2009;169:954-62. 1517 pt with stage IV (metastatic) lung CA, multicenter, multivar.

29. Treatment, discussions and acceptance of death • 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. Number of Aggress Interventions

30. Patient Preferences Affect End of Life TX J Gen Int Med 2007;22:1566-71. 118 terminally ill non institutionalized persons. See also J Crit Care 2009;24:311-5.

31. Stuttered Withdrawal Works Best P .009 P .01 • The best ICU experience is withdrawal over 2 days • Dialysis, then • Hydration then • Tube feeding then • Pressors then • Lab tests then • Respirator Am J Resp Crit Care Med 2008;178:798-804. 15 hospitals, 584 patients

32. End of Life Treatment Discussions and Last Week Costs, Quality of Death, Quality of Bereavement End of life discussions: • ↓ Ventilation (1.6 v 11.0%) • ↓ CPR (.8 v 6.7%) • ↓ ICU admit (4.1 v 12.4%) • ↓ 46% Last week $ tx. (P=.002). • No higher depression or worry. • Earlier hospice enrollment. More Aggressive Care • ↓ Quality of life (6.4 v 4.6) • ↑ Depression in bereaved caregivers • JAMA 2008;300:1665-73. Arch Int Med 2009;169:480-8. US. 6-hosp prosp, longit cohort multivar. Pts with advanced CA and their caregivers (n = 332 dyads), 2002-2008. Patients followed from to death, (median 4.4 months, caregivers 6.5 months p death). A third had EOL discussions..

33. Family Satisfaction with EoL Conferences • 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. Mean meeting time 32 min SD=15 min. • See also Arch Int Med 2004;164:1999-2004. So, LISTEN UP!

34. The Caregivers’ Paradox: How do we remain faithful as we let go of a loved one who is dying? • Offer Goals; not limits (e.g. Do Nots…). • Offer Alternatives; not “This or nothing.” • Offer Continuity, not abandonment. • Focus on finding consensus on patient’s values rather than on most empowered family member’s choice. • J Crit Care 2006;21: 294-304. 51 clinician-family ICU conferences from 4 hospitals

35. What is Hope-Full Disclosure? • Patients want doctors to • Be knowledgeable and realistic, • Provide an opportunity to ask questions • Offer up todate treatment (90%) • Say that pain willbe controlled (87%). • Patients say that they lose hope if • The doctor appears nervous or uncomfortable (91%) • Gives the prognosis to family before informing patient (87%), • Uses euphemisms(82%) • J Clin Onc 2005;23:1278-1288. 126 pts with metastatic cancer seeing 30 oncologists.

36. Family meeting tips • Accommodate extended families • Include family clergy in preference to hospital chaplains (consider pre-contact with clergy) • Minimize staff in room. • Sit down • Take time • Private space

37. A dying person shows caregiver how to face death. The intergenerational gift between dying persons and their caregivers. The caregivers learn how to face death & teach the next generation how to care for a dying loved one. The next generation learns how to care for a dying person. On death

38. Good discussions: • Focus on goals. • Enhance a patient’s sense of control • Address fears of abandonment • Assure patients that they are being cared for with positive treatment goals to improve quality of life and a committed clinician even if medicine can not cure them.

39. Housestaff: If we won’t teach . . . . . . they won’t learn. • Two-thirds of med school seniors dread dealing with the distress of families. • Half find this kind of care depressing. • J Pall Med 2010;13: 319-26. Survey of 1455 sen. med students at 62 schools, 62% response rate. Half of these had done it once. Rarely the primary discussant. Other important studies: Crit Care Med 2002;30:290-6. J Palli 2005;8:363-71. J Crit Care 2005;20:20-5. Pall Med 2006;20:579-84. Acad Med 2006;81:1008-12

40. Ethics Consultations

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. Let the RNS into the Process • 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.

45. 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

46. Hospice and Grief

47. Hospice Reduces Deaths of Caregivers During First 18 months of Widowhood Late Hospice Enrollment Does Not Always Increase Caregivers Distress BUT • Short hospice stays (<3 days) are associated with more depression in caregivers if the caregiver: • has previous depression (p<.01) • is spouse of decedent (p<.01) • is overwhelmed by caregiver burdens (p<.04) • Am J Geriatr Psych 2006;14:264-9. 3 yr longit. 175 family caregivers of patients with terminal cancer who enrolled in 1 hospice 1999-2001. 13 months follow-up. OR .95 OR .9 Soc Sci & Medicine 2003;57:465-75. Risk adjusted, retro 30,838 in hospice matched to 30,838 couples without hospice care drawn from 200,000 sample.

48. Prolonged Grief Disorder (aka Complicated Grief, Complicated Bereavement) Criterion A: Yearning, pining, longing for the deceased. Yearning must be experienced at least daily over the past month or to a distressing or disruptive degree. Criteria B: In the past month, the person must experience four of these eight symptoms as marked, overwhelming, or extreme. 1. Trouble accepting the death 2. Inability trusting others since the death 3. Excessive bitterness or anger about the death 4. Feeling uneasy about moving on with one’s life (e.g., difficulty forming new relationships) 5. Feeling emotionally numb or detached from others since the death 6. Feeling life is empty or meaningless without the deceased 7. Feeling the future holds no meaning or prospect for fulfillment without the deceased 8. Feeling agitated, jumpy or on edge since the death Criterion C: The above symptom disturbance causes marked dysfunction in social, occupational, or other important domains. Criterion D: The above symptom disturbance must last at least 6 months. J Pall Med 2006;9:1188-203. Newly Recognized Disorder: Detect and Refer and Stay Up to Date!

49. Steven Miles MD Slides available miles001@umn.edu Slides may be used. No Financial Interests to Disclose.