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End of Life Care: 2009 Empirical Update

This empirical update explores the prevalence of withholding or withdrawing life-sustaining treatment in the US, the moral and legal consensus on choices about life-supporting treatments, and the variations in end-of-life care practices. It also examines factors that influence preferences for life-prolonging care, such as economic hardship, religion, and prognosis disclosure.

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End of Life Care: 2009 Empirical Update

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  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. 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.

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

  7. 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 • 0-79% (38%) had life support withdrawn.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.

  8. 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.

  9. Clinician-patient-family issues Decision makers Prognosis Quality of Life Family stress Ethics consultation

  10. Family more aggressive than patient. Family estimates unimproved 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 Nurses not more accurate than family. N=1767 Image 1997;29:229-35. Circulation 1998;98:648-55.

  11. 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

  12. 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.

  13. 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.

  14. 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.

  15. 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.)

  16. 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.

  17. 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.

  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. The Physician-Family Relationship Family stress Ethics consultations

  20. 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.

  21. 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.

  22. 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

  23. 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.

  24. 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.

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

  26. Family Coping Skills Training • At 30-days, coping skills teaching: •  caregiver QOL P = 0.03) •  burden of pt’ sx (P < 0.001) •  caregiving burden P = 0.04) than did the other two groups. • Cancer 2006;106:214-22. 3 group RCT, 354 relatives of home hospice pt’s. Standard care v standard + three supportive visits v standard + 3 visits to teach coping skills.

  27. 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.

  28. 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

  29. Ethics Consultation etc

  30. 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.

  31. 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.

  32. 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.

  33. 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

  34. 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

  35. Palliative Care Benchmarks Narcotics Terminal Sedation Agonal patients

  36. 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.

  37. 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.

  38. To O2 or not to O2? • All pts improved with either intervention, hypoxic pts did not have greater improvement even if O2 sat corrected! • J Pain & Sympt Manage 2006;32:541-50. RCT, double blind, dyspneic CA, N=51, O2 by prongs v air.

  39. Bronchial Secretions • Bronchial secretions in 41% • Oral/bronchial suctioning with distress in 9% • Severe bronchial secretions in 4%. • Etiologies of bronchial secretions: • Primary lung CA, pneumonia, and dysphagia. • No significant effects of severity of peripheral edema or pleural effusion on incidence or severity of bronchial secretions. • J Pain & Sympt Manag 2004;27:533-9. (Japan) Multicenter, prospective, observational study, regression analysis, 310 patients in last three weeks of life.

  40. Terminal Breathing Anomalies • Noisy Breathing: “Death rattle” • Scopolamine • Benadryl • Cheynes-Stokes (periodic) breathing • Prospective family counseling to reassure that this is not dyspnea. These distress caregivers: EDUCATE!

  41. Palliative (Terminal) Sedation Using high sedative doses to the point of causing unconsciousness to relieve extremes of physical distress. Supreme Court seems supportive. ACP-ASIM Consensus Panel. Ann Int Med 2000;132:408-14.

  42. Palliative Sedation • Sedation given to 75% of pts during withhold/withdraw life support. (Not for comatose pts) • >85% to decrease pain, anxiety • 76% to decrease air hunger • 82% to comfort families • 39% to hasten death • Equivs: 10 mg/h diazepam, 11 mg/h MS. • Drug doses not associated with survival. • Prospective, 2 hospitals, 1 year. JAMA 1992;949-53. • See also Chest 2000;118:1424-30. • J Pain & Sympt Manag 2006;32:532-40.

  43. Palliative Sedation: Family Views • 69% of patients very distressed before sedation. • 55% of patients asked for sedation • 78% of the families satisfied with the treatment • Low satisfaction: poor sedative palliation, insufficient information, concerns that sedation shortened life, and feelings that there were other ways to relieve symptoms. • 25% expressed a high level of emotional distress. • Associated with poor sedative palliation, feeling burden by the decision, unprepared for changes in the patient's condition, or that physicians and nurses were insufficiently compassionate, and shorter interval to patient death. • J Pain & Sympt Manag 2004;28:557-65. (Japan) Multicenter questionnaire, 280 bereaved families of cancer patients who received sedation in 7 palliative care units in Japan. 185 responses.

  44. Palliative Sedation • Palliative sedation alleviated symptoms in 83%. • Median time to one continuous hour of deep sedation was 60 minutes, 49% of patients awakened once after falling into deep sedation. • Resp rates did not decrease after sedation (18 to 16+/- 9/min) • But respiratory and/or circulatory suppression (resp </= 8/min, sbp </= 60 or 50%+ reduction) occurred in 20%, with fatal outcomes in 4%. This was more common in patients receiving sedation for delirium / agitation. • No differences in clinical variable or initial sedative dose. • J Pain & Sympt Manag 2005:320-8. (Japan) Multicenter, prospective, observational study, 102 consecutive adult cancer patients receiving continuous deep sedation.

  45. Sedation and Extubation • Ventilators withdrawn from 155/206 (75%) patients; 97/155 died after extubation and 58/155 died with airway in place. • Drugs in 4 hours before death were: • Morphine 119/206, 24 mg, (2-450 mg) • Midazolam 45/206, 24 mg, (2-380 mg) • Lorazepam 35/206, 4 mg, (1-80 mg). • Drug dose not associated with time to death. • Family members indicated that patients were perceived to be either totally (37%), very (24%), or mostly comfortable (29%). • Can J Anaesthesia 2004;51:623-30. Prospective, cohort study in 6 academic ICUs, 206 ventilator patients (length of stay > or= 2 d). Relative ssessed patient comfort and eol care.

  46. Depression in Terminal Illness • Traditional scores using role or status loss, anhedonia over diagnose. J Pain & Sympt Man 2001;22:990-6. • 12% had major DSM disorder • 28% had used mental health intervention since CA diagnosis. • 90% were willing to receive MH treatment but 55% had not done so. • Cancer 2005;104:2872-81. Cross-sectional, multi-institutional study, 251 adults with advanced cancer, primary therapy failure, nonpaid caregiver. • Major depression in 27%. • Patients with depression rated CA symptoms as more severe than nondepressed patients. (P < 0.01) • Pall Med 2004;18:558-63. (UK) 74 adult CA patients with ECOG performance status ranging from ambulatory and unable to work to moderately severely limited activities.

  47. Hospice Reduces Deaths of Caregivers During First 18 months of Widowhood 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. Steven Miles MD Slides available miles001@umn.edu

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