End of Life Decisions: 2014 Evidence Based Update

1. End of Life Decisions:2014 Evidence Based Update Steven Miles, MD; University of Minnesota 3/28/14

2. Conflict of Interest Disclosure The speaker does not have any personal, institutional or financial relationship with any health care lobbying or industry organization. I do not take honorariums from or represent the position of such groups. We are all mortal. 1820 Chovin MERIAN - Memento Mori-Physician.

3. English Studies/trials MetaAnalysis Adult Terminal Care Hospice Palliative Care Euthanasia-Passive Withholding Treatment Resuscitation Orders Usable studies 300 Physician Patient Relations Attitude of Health Personnel Ethics, Medical or Nursing Population groups (race, ethnicity) Patient participation Informed consent Decision making Social Work Religion (all) 42,000 83,000 Hypothetical Vignettes N <50 I favor N>200, multicenter, multivariate-corrected studies. Most studies more than 10 years are discarded.

4. OVERVIEW • Epidemiology of end of life decisions • Physician Factors • Patient Religion and Values • Family Factors • Clinician-patient-family communication • Ethics Consultation • Grief

5. Epidemiology of End of Life Decisions

6. 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%

7. 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).

8. The Moral and Legal Consensus on Choices about Life Supporting Treatments • Patients have a 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.

9. Medicare Site of Death. Average age of 286,000 decedents is 81.9. 42% enrolled in hospice. JAMA 2013;209:470

10. Hospital Practice Variation • Standardized early DNR rates varied 10 fold. • Higher in • Non-profit hospitals. Smaller hospitals. • Non Academic hospitals. No difference by race, income • Arch Int Med 2005;165:1705-1712. 386 hospitals, California, 820,000 pts >50, Multiple regression. • The difference between High end-of-life intensity and Low end- of-life intensity hospitals is not due to more starting of life sustaining treatment but because Low intensity hospitals propose LST as a time-limited-trial with pre-identified clinical benchmark for withdrawing to ensure its accountability. • Intensive Care Med 2012;38:1886-96. Two hospitals one high, one low treatment, 173 patients over 65, interviews of 4 attendings, staff and families

11. Clinician Death Anxiety

12. Clinician Death Anxiety & Terminal Care • Doctors, nurses, SWs with higher fear of death less likely to: • Disclose prognosis P. <004 • Assist in selecting proxy decisionmaker P< .000 • Collaborate with team on advance planning P<.003 • Death Studies 2007;31:563-72. N= 135, one institution. • 1/3 of MDs are uncomfortable discussing terminal care with patients 1/10 after discussing these issues with family. • Arch Int Med 1990:150:653-58. See also CMAJ 2000;163:1255-9. 1990 2007 1998 2011 • MDs with  death anxiety: • Treat more aggressively. • Less tolerant of clinical uncertainty. • Like elderly patients less. • Greater interest in specialties. • Psychol Rep 1998;83:123-8. • A six day HCW course in how to face and cope with death anxiety, • Decreased burnout. • Decreased death anxiety. • Improved job satisfaction, esp in relationships with eol patients. • J Palll Care 20111;27:287-95.

13. 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 the patient?

14. Patients’ Religion(and why it matters to MDs)

15. 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. • 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.

16. Religious Coping* and Use of Life-Prolonging Care • High 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, 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.

17. How Does Spiritual Care From Medical Team Affect Medical Care Received and EOL Quality Of Life. • Patients whose spiritual needs were supported by medical team received 3.5 X more hospice care compared to those not supported (P = .003). • High religious coping patients whose spiritual needs were supported were 5X more likely to receive hospice (P = .004) and a fifth as likely to receive aggressive care (P = .02) in comparison with those not supported. • Spiritual support from the medical team associated with higher QOL near death (20.0 v 17.3, P = .007). • Spiritual support from pastoral care visits associated with higher QOL near death (20 v 18, P = .003). • J ClinOnc 2010;28:445-52. Prospective, multisite, multivariate regression study of 343 patients with advanced cancer. Median 116 days to death. Patient-rated support of spiritual needs by the medical team. Measured receipt of pastoral care services. • J ClinOnc 2007;25:555-60 and J Pall Med 2006;9:646-57 have similar finding on QoL.

18. Religious Support and Intensive Care Deaths • Patients saying that religious/spiritual needs were inadequately supported • less likely to receive a week or more of hospice (54% vs 73%; P = .01) • more likely to die in an ICU (5.1% vs 1.0%, P = .03). • Among minorities and high religious coping patients, those reporting poorly supported religious/spiritual needs received • more ICU care (11.3% vs 1.2%, P = .03; 13.1% vs 1.6%, P = .02, • less likely to have > 1 week of hospice (43.% vs 75.3%, P = .01; 45.3% vs 73.1%, P = .007) • increased ICU deaths (11.2% vs 1.2%, P = .03 and 7.7% vs 0.6%, P = .009). • EOL costs higher when patients said their spiritual needs were inadequately supported ($4947 vs $2833, P = .03), particularly among • minorities ($6533 vs $2276, P = .02) and • high religious copers ($6344 vs $2431, P = .005). • Cancer 2011;117:5383-91. Prospective, multisite, 339 advanced CA patients accrued from outpatient setting and followed until death. Spiritual care measured by patients' reports that health team supported their spiritual needs.

19. An Answer? Patients with high spiritual support from religious communities Among patients supported by religious communities AND receiving spiritual support from medical team. More hospice use AOR 2.37; P =.04 Less aggressive interventions AOR 0.23; P=.02 Fewer ICU deaths AOR 0.19; P=.02 • Less hospice • AOR 0.37; P=.002 • More aggressive EoL treatment • AOR 2.62; P=.02 • More ICU deaths • AOR 5.22; P=.004. JAMA Intern Med. 2013 Jun 24;173(12):1109-17.

20. Who should offer religious support? • J Pastoral Care & Counseling. 2013; 67(3-4):3-. 233 consecutive hospitalized patients received a proposal of spiritual support randomly by chaplain or by nurses by random assignment. One hospital, single variable.

21. Family Factors in Decisionmaking

22. Family ICU Distress 2001-~2005A Focus on Milieu • More anxiety when: • Acute illness • Lack 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. 2001 2005 • 46% Conflict with med staff (complaints of disregarding 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. Tape audit. • See also Chest 2005;127:1775-83.

23. Family ICU Distress 2005 - 2009A Shift to Focus on Caregiver Psychiatry 2005 2008 2009 2007 Patients with Advanced CA with Children ↑ 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 4.5) and generalized anxiety disorder (OR= 4). Cancer 2009;115:399-409, 6 hospitals, prosp, 668 pts • 35% depressed • 69% relatives had symptoms of anxiety. (Caregivers who saw loved one with delirium 2X as likely to have generalized anxiety.) (p < 0.04 after multivariate adjust). • J Pall Med 2007;10:1083-92. 200 caregivers of patients with terminal CA.) .

24. Family ICU Distress in ICUs 2010 57% mod to severe traumatic stress 80% borderline anxiety 70% borderline depression. >80% mod to severe fatigue, sadness, fear More severe symptoms: Younger age, female, and non-white relative. Young patient was only variable associated with symptom severity. Despite symptoms, most relatives coping at and functioning at high levels during the ICU experience. Crit Care Med 2010;38:1078-85. Prospective, cross-sectional study, 3 ICUs at 1 AHC. 74 relatives 74 patients at high risk for dying after ICU stay >72 hrs on vent. PTSD: 10-19%. Depression: 14-24% Correlates of above Knowing patient for shorter time PTSD, P = .003 Depression, P = .04 Discord betweenfam' DM prefsvtheir DM roles PTSD, P=.005 Depression, P= .05 Chest 2010;137:280-7. Prosp, multivar, 226 families 2010

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

26. Qualitative info. Is it bad, doc? 80% want 66% ask. 88% given 20% do not want. 22% ask for it. 61% given!! Quantitative info. How long will I live? 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 Data 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.)

27. Quantitative Data for CPR decisions • Of patients who undergo inpatient CPR, • 4 in 10 will have a return of spontaneous circulation, • 1 in 10 will survive to hospital dismissal. • Of patients who are successfully resuscitated and discharged, 1 in 4 survive more than 5 years. • (More favorable for healthy baseline status, younger age, witnessed arrest, initial rhythm of ventricular fibrillation, CPR <10 minutes). • The American Journal of Medicine 2010; 123:4–9. See also New Engl J Med 2009;361:22-31

28. All Chicago Hope, ER, and Rescue CPRs 94-95: 67% survive to discharge. N Engl J Med 1996;334:1578-82. Patient’s/surrogates’ prediction of survival following in-hospital cardiac arrest with CPR averaged 72% The higher the prediction of survival, the greater the frequency of preference for full code status (P = .012). Chest 2011;139:802-9. Interviews of 100 patients or their surrogates in an MICU. 19% of pts knew prognosis after CPR. When informed of prognosis, 37% of living wills were changed. J Crit Care 2005;20:26-34. A 325-bed hospital 82 pts with living wills on admission. The “Chicago Hope” Effect: Deformed Consent

29. Awareness of terminal illness, discussions with MDs and treatment plans and outcomes. • Being aware of terminal illness: 1.6 X as likely to get preferred tx. • Discussing EOL wishes with MD: 2 X as likely to get preferred tx. • Being aware & discuss with MD: 3.5 X as likely to get preferred tx. • (44% of pts who knew they were terminally ill had no talk with MD!) • J ClinOnc 2010;28:1203-8. 7 hospitals. 325 pts with advanced cancer. Preferences assessed a median of 125 days before death. Multivariate analysis (function, survival time, demographics, discussions, awareness of term condition) .003 of Terminal Condition

30. Dr: 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/no more tx to offer. • 26%: discuss hospice. • 21%: discuss site of death. • Non-cancer Mds more likely than cancer MDs 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. But oncologists say refusal of pall care to accept chemo pts is a barrier to referrals, so they wait. J Clin Onc 2012;30:4380-6

31. 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.

32. What happens when a terminally ill patient comes to a family conference? • Patient presence was associated with • More discussions of goals of care (P=0.009) • Less communication of • prognosis (P=0.004)and • symptoms dying patients may have (P<0.001). • Journal of Pain & Symptom Management. 2013;46:536-45. Data collected right after 140 consecutive family conferences. 91%: solid tumors, median age: 59 yo. Patients participated in 49% of FCs.

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

34. 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..

35. What is Hope-Full Disclosure? i.e., Addressing the Paradox of ‘How do we Faithfully Be with a Loved One who is Dying?” • Patients want doctors to • Be knowledgeable and realistic, • Offer up todate treatment (90%) (goals, continuity, not illusions, abandonment and do-nots) • Say that pain willbe controlled (87%). • Provide an opportunity to ask questions • Patients lose hope if • Doctor appears nervous or uncomfortable (91%) • Gives prognosis to family before the patient (87%) • Uses euphemisms(82%) • J ClinOnc 2005;23:1278-1288. 126 pts with metastatic cancer seeing 30 oncologists. • Focus on finding consensus on patient’s values rather than on most empowered family member’s preference. • J Crit Care 2006;21: 294-304. 51 clinician-family ICU conferences from 4 hospitals

36. 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!

37. 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. • Give a business card with your cell phone on it when the situation is close to death.

38. 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

39. Ethics Consultations

40. 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.

41. 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.

42. 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.

43. 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.

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 savings but primary value-added effect is by increasing available ICU bed days by decreasing ICU use for people who will not survive. • Health Affairs 2005;24:961-71.

45. Hospice Reduces Deaths of Caregivers During First 18 months of Widowhood Late Hospice Enrollment • Short hospice stays (<3 days) associated with more depression in caregivers if the caregiver: • has previous depression (p<.01) • spouse of decedent (p<.01) • overwhelming 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.

46. Steven Miles MD Slides available miles001@umn.edu Slides may be used without further permission.