End-of-Life Decision Making Massachusetts Continuing Legal Education Seminar Susan P. Shapiro May, 19, 2016 COVER PAGE

proxy directive: designate one (or more) persons to make health care decisions on our behalf (Health Care Agent or Durable Power of Attorney for Health Care) instructional directive: provide guidance about the type and amount of care desired (Living Will)

The “living will”—conceived as a document designed to protect people’s legal right to have the amount and kinds of medical treatment they want even if they can no longer express that choice themselves—was perceived as the solution for Americans’ concerns about being “hooked up to machines” for long periods or, conversely, being protected against premature “pulling of the plug.” Nonetheless, this legal approach has been disappointingly ineffective in improving the care people nearing the end of life receive and in ensuring that this care accords with their informed preferences. 2015

Stock Photo

Stock Photo Stock photo

Photo from PBS Frontline documentary, “Facing Death.”

Photo from PBS Frontline documentary, “Facing Death.”

Photo from PBS Frontline documentary, “Facing Death.”

Attribute / (number of cases) PATIENT WISHES Any patient wishes mentioned (118) Patient’s express wishes mentioned (87) Patient’s wishes inferred (51) Patient’s wishes perceived (78) Patient's personality described (75) Evidence of patient's wishes described (53) Family doesn't know patient’s wishes (15) DISCUSSION OF WISHES INITIATIED BY HEALTH CARE PROVIDERS Any patient wishes mentioned (75) Patient’s express wishes mentioned (50) Patient’s wishes inferred (29) Patient’s wishes perceived (44) DECISION-MAKING PROCESS Raises goals of care (170 Family raises goals of care (89) Physician raises goals of care (133) Who is the decision maker? (50) Decision criteria (75) Best interest (20) Quality of life (47) Pain and/or suffering (140) Cost (25) What I would want for myself (14) Needs of self or others (50) Family seeks advice (36) Physician offers advice (69) Conflict between family & physicians (29) Attribute / (number of cases) HOW LONG IT TAKES TO ADDRESS Number of days until patient wishes raised (132) Number of days until goals of care raised (170) Number of days goals of care raised to changed (115) Number of days in ICU (199) OUTCOME MEASURES Consults with palliative care (51) Refuses an intervention (128) Do-not-resuscitate (DNR) order (116) Withdraws life support (85) IMPACT ON FAMILY Conflict within family (19) Family emotional burden (99)

Attribute / (number of cases) PATIENT WISHES Any patient wishes mentioned (118) Patient’s express wishes mentioned (87) Patient’s wishes inferred (51) Patient’s wishes perceived (78) Patient's personality described (75) Evidence of patient's wishes described (53) Family doesn't know patient’s wishes (15) DISCUSSION OF WISHES INITIATIED BY HEALTH CARE PROVIDERS Any patient wishes mentioned (75) Patient’s express wishes mentioned (50) Patient’s wishes inferred (29) Patient’s wishes perceived (44) DECISION-MAKING PROCESS Raises goals of care (170 Family raises goals of care (89) Physician raises goals of care (133) Who is the decision maker? (50) Decision criteria (75) Best interest (20) Quality of life (47) Pain and/or suffering (140) Cost (25) What I would want for myself (14) Needs of self or others (50) Family seeks advice (36) Physician offers advice (69) Conflict between family & physicians (29) Attribute / (number of cases) HOW LONG IT TAKES TO ADDRESS Number of days until patient wishes raised (132) Number of days until goals of care raised (170) Number of days goals of care raised to changed (115) Number of days in ICU (199) OUTCOME MEASURES Consults with palliative care (51) Refuses an intervention (128) Do-not-resuscitate (DNR) order (116) Withdraws life support (85) IMPACT ON FAMILY Conflict within family (19) Family emotional burden (99)

Written Directives

The Patient Should Decide Written Directives

Standing in the Patient’s Shoes The Patient Should Decide Written Directives

It’s God’s Decision Standing in the Patient’s Shoes The Patient Should Decide Written Directives

It’s God’s Decision Beneficence Standing in the Patient’s Shoes The Patient Should Decide Written Directives

It’s God’s Decision Beneficence Standing in the Patient’s Shoes What We Want The Patient Should Decide Written Directives

It’s God’s Decision Beneficence Standing in the Patient’s Shoes What We Want The Patient Should Decide Hope/Denial/Opting Out Written Directives

How to choose the most effective proxies and prepare them for what many characterize as the most difficult role of their life? What decision criteria are most important; how should they be weighed and tradeoffs balanced? How to evaluate probability, risk, or prognostic uncertainty? How long to try before giving up? How much suffering along the way is acceptable? What constitutes an acceptable quality of life? What fates are worse than death? How much weight to give to the needs of the family?

How to choose the most effective proxies and prepare them for what many characterize as the most difficult role of their life? What decision criteria are most important; how should they be weighed and tradeoffs balanced? How to evaluate probability, risk, or prognostic uncertainty? How long to try before giving up? How much suffering along the way is acceptable? What constitutes an acceptable quality of life? What fates are worse than death? How much weight to give to the needs of the family?

How to choose the most effective proxies and prepare them for what many characterize as the most difficult role of their life? What decision criteria are most important; how should they be weighed and tradeoffs balanced? How to evaluate probability, risk, or prognostic uncertainty? How long to try before giving up? How much suffering along the way is acceptable? What constitutes an acceptable quality of life? What fates are worse than death? How much weight to give to the needs of the family?

How to choose the most effective proxies and prepare them for what many characterize as the most difficult role of their life? What decision criteria are most important; how should they be weighed and tradeoffs balanced? How to evaluate probability, risk, or prognostic uncertainty? How long to pursue aggressive interventions before changing the goals of care from cure to comfort? How much suffering along the way is acceptable? What constitutes an acceptable quality of life? What fates are worse than death? How much weight to give to the needs of the family?

How to choose the most effective proxies and prepare them for what many characterize as the most difficult role of their life? What decision criteria are most important; how should they be weighed and tradeoffs balanced? How to evaluate probability, risk, or prognostic uncertainty? How long to pursue aggressive interventions before changing the goals of care from cure to comfort? How much suffering along the way is acceptable? What constitutes an acceptable quality of life? What fates are worse than death? How much weight to give to the needs of the family?

How to choose the most effective proxies and prepare them for what many characterize as the most difficult role of their life? What decision criteria are most important; how should they be weighed and tradeoffs balanced? How to evaluate probability, risk, or prognostic uncertainty? How long to pursue aggressive interventions before changing the goals of care from cure to comfort? How much suffering along the way is acceptable? What constitutes an acceptable quality of life? What fates are worse than death? How much weight to give to the needs of the family?

How to choose the most effective proxies and prepare them for what many characterize as the most difficult role of their life? What decision criteria are most important; how should they be weighed and tradeoffs balanced? How to evaluate probability, risk, or prognostic uncertainty? How long to pursue aggressive interventions before changing the goals of care from cure to comfort? How much suffering along the way is acceptable? What constitutes an acceptable quality of life? What fates are worse than death? How much weight to give to the needs of the family?

How to choose the most effective proxies and prepare them for what many characterize as the most difficult role of their life? What decision criteria are most important; how should they be weighed and tradeoffs balanced? How to evaluate probability, risk, or prognostic uncertainty? How long to pursue aggressive interventions before changing the goals of care from cure to comfort? How much suffering along the way is acceptable? What constitutes an acceptable quality of life? What fates are worse than death? How much weight to give to the needs of the family?

Standing in the Patient’s Shoes Beneficence What We Want Hope/Denial/Opting Out It’s God’s Decision Written Directives The Patient Should Decide

Standing in the Patient’s Shoes Beneficence What We Want Hope/Denial/Opting Out It’s God’s Decision Written Directives The Patient Should Decide

Standing in the Patient’s Shoes Beneficence What We Want Hope/Denial/Opting Out It’s God’s Decision Written Directives The Patient Should Decide

Standing in the Patient’s Shoes Beneficence What We Want Hope/Denial/Opting Out It’s God’s Decision Written Directives The Patient Should Decide

Detailed findings are presented in: Shapiro, Susan P. (2012). “Advance Directives: The Elusive Goal of Having the Last Word.” NAELA Journal, VIII(2), 205-232 (qualitative data).   Shapiro, Susan P. (2015). “Do Advance Directives Direct?” Journal of Health Politics, Policy and Law, 40, 487-530. (quantitative data).