Why do Patients Request “Do Not Resuscitate?” Robert A. Pearlman, MD MPH Professor, Departments of Medicine and Bioethics and Humanities (UW) Chief of Ethics Evaluation National Center for Ethics in Health Care American Geriatrics Society Annual Meeting, 5/5/12

Why Is This a Topic for Discussion? Potentially problematic informed consent? Possible evidence of autonomy “run amok?” Possible evidence of inconsistency in treatment goals (surgery vs. DNR)? Does this represent substandard care? Does this have negative professional implications?

Background Patient’s Right to Self-Determination: Competent adults have the right to determine what is done to their bodies; i.e., they have the right to accept or refuse recommended treatment Physician’s Professional Responsibilities: Physicians are not obligated to provide futile treatment or treatment that falls below the standards of the profession

Possible Reasons for Patients Wanting to Forego CPR (Wanting DNR) Patient being misinformed or having a misunderstanding Values/preferences about end-of-life Values/preferences about quality of life Values/preferences about effects on family Values/preferences regarding life-sustaining treatment Fear about outcome Cultural values

Patient Estimates of Survival and Preferences Regarding CPR ( NEJM 1994;330:545 ) Acute IllnessChronic Illness Pt. estimate of survival rate to discharge26% + 22%15% + 16% Preferred CPR rate41%11% (initial) Preferred CPR rate22%5% (after education)

Lowest Probability of Survival at Which Patients Prefer CPR ( NEJM 1994;330:545 ) Survival Rate (%)% Opting for CPR >608 Did not want CPR25

Most Important Factors at End of Life (California HealthCare Foundation, 2012) Top Five Factors Rated as “Extremely important” Making sure family not burdened financially by my care (67%) Being comfortable and without pain (66%) Being at peace spiritually (61%) Making sure family is not burdened by tough decisions about my care (60%) Having loved ones around me (60%)

Preferences Around Prolonging Life ( California HealthCare Foundation, 2012 )

MD Rationale for Withholding Life- Sustaining Treatment ( Ann Intern Med 1982;97:420 ) Physicians Preferring Nonintubation (n=86) % Acute problem 19 Quality of life49 Natural hx of disease48 Inadequate info14 Survival time28 Impact of treatment on pt, family or society24 Cost/benefit17 Physicians Preferring Intubation (n=119) % Acute problem60 Quality of life29 Natural hx of disease14 Inadequate info26 Survival time8 Impact of treatment on pt, family or society5 Cost/benefit7

Models of Quality of Life in Elderly Patients ( J Geront 1991;46:M31 ) Patient Correlates Health Memory Finances R-squared =.35 Patient Ratings: 10% Physician Correlates Health Memory Psychological health Relationships R-squared =.74 Explained by MD Ratings

Correlations of Patients’ and MDs’ Ratings of Patient Quality of Life & CPR Preferences ( Arch Intern Med 1991;151:495 )

Patients’ Reasons for Not Wanting Life-Sustaining Treatment ( J Clin Eth 1993;4:33 ) –Prognosis (96%): “You know you’re going to die--they just haven’t set a date.” –Physical functioning (82%): “Every one of your needs needing to be met by someone else.” –Emotional well-being (80%): “Totally terrified of the probability of death.” –Mental functioning (71%): “Brain has quit working--it’s quit functioning” –Dependency on machines (70%): “Machinery that has to be tied to your body to keep you alive.”

Insights from Advance Care Planning and Linkage to Quality of Life ( Ann Int Med 1997;127:509) Want Treatment Forego Treatment Better than Death YES ? Worse than Death ?? YES (85%)

Percent Wanting Antibiotic Treatment (Ann Int Med 1997;127:509) Much WTD Much BTD Some WTD Little WTD SameLittle BTD Some BTD Not Sure Want Treatment Don't Want Treatment 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%

Percent Wanting LTMV Treatment (Ann Int Med 1997;127:509) Much WTD Much BTD Some WTD Little WTD SameLittle BTD Some BTD Not Sure Want Treatment Don't Want Treatment 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%

Percent Wanting CPR (Ann Int Med 1997;127:509) Much WTD Much BTD Some WTD Little WTD SameLittle BTD Some BTD Not Sure Want Treatment Don't Want Treatment 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%

Insights From Reasons Patients Consider Physician Assisted Death (JGIM 2005;20:235) Illness-Related Experiences Feeling weak, tired & uncomfortable69% Loss of function66% Pain and/or unacceptable side-effects of pain medication40% Sense of Self Loss of sense of self63% Desire for control60% Fears About the Future Fears about future quality of life and dying60% Negative past experiences with dying49%

Conclusions Patients have many reasons to forego CPR Good communication is needed to elicit authentic patient preferences regarding CPR CPR information needs to be contextualized Quality of life often is a major reason that influences patient preferences Advance care planning can serve as a “hedge” for the uncertainties about CPR outcomes