The Role of ‘Family’ in Advance Care Planning: A Fourth Generation Advance Directive David J. Doukas, M.D. William Ray Moore Endowed Chair of Family Medicine and Medical Humanism University of Louisville

Learning Objectives Describe two ethical principles that help guide the actions of health professionals in addressing end-of-life challenges Delineate the rationale for the expanded use of loved ones in future medical care decisions

Informed Refusal The Principle of Respect for Persons - (Autonomy) The Principle of Beneficence

The Triad of Classic Proxy Refusal Cases The Karen Ann Quinlan Case (1976) The Nancy Cruzan Case (1990) The Terri Schiavo Case (2005)

Key Cases & Their Consequences Quinlan  The Natural Death Act

Cruzan  The Patient Self-Determination Act (PSDA)

The Case of Terri Schiavo Terri Schiavo was in a PVS. Her husband, Michael, related that she would not want treatment in a PVS. Her parents, Bob and Mary Schindler, maintained she might recover with treatment.

Timeline in Brief (Courtesy of cnn.com) 1990 On February 25, Terri Schiavo, 26, collapses in her home from what doctors believe is a potassium imbalance. Oxygen flow to her brain is interrupted for about five minutes, causing permanent damage. A court rules that she is incapacitated and her husband, Michael Schiavo, is appointed as her legal guardian.

1993 Terri Schiavo's parents, Bob and Mary Schindler, fall out with Michael Schiavo and begin to schedule their visits to Terri on different days. The Schindlers later try and fail to have Michael removed as Terri's guardian.

1998 Michael Schiavo petitions a court to have his wife's feeding tube removed.

Repeated attempts to remove Ms. Schiavo’s feed tube are challenged Ms. Schiavo is determined by 2 of 3 neurologists to be in a PVS Florida Legislature attempts to intervene to continue feeding 11th Circuit U.S. Court of Appeals in Atlanta, Georgia Denies Appeal

Schiavo  The Need to Address Family Dynamics in Advance Care Planning

Advance Directives Allow for patients to decide proactively what medical procedures and treatments are done to their body, either in the form of an instruction or a proxy designation.

The First Three Generations of Advance Directives The DNR/DNAR and Termination of Treatment Orders (1 st Gen: Reactive) The Living Will (2 nd Gen: Proactive) The Durable Power of Attorney

KEY EBM RECOMMENDATIONS FOR PRACTICE Clinical Recommendation & Evidence Rating A = Consistent, good-quality patient-oriented evidence; B = Inconsistent or limited-quality patient- oriented evidence; C = Consensus, disease-oriented evidence, usual practice, expert opinion, or case series.

TALK Patients should be given the chance to review decisions and have interim discussions with their physicians to improve the stability of their end-of-life choices. Level B

FAMILY Patients should be offered a family- based decision-making plan because some cultures prefer family decision making over the individualist approach inherent in conventional written directives. Level B

TAILOR Patients with chronic and terminal disease, such as acquired immunodeficiency syndrome, cancer, and end-stage lung disease, should be offered advance directives that are specific to their disease. Level C

Third Generation Directives: Eliciting of Values The Values History (1988) by Doukas and McCullough Medical Directive (1991) Emanuels Five Wishes (mid-1990’s)

The Values History by Doukas and McCullough Specific value-based directives for various medical interventions. Used as a supplement to an existing living will or durable power of attorney for health care

Section I. Values Section Quality of Life Values Section II. Directives Section Specific Interventions (and Trials) From: Doukas DJ, Reichel W, Planning for Uncertainty: A Guide to Living Wills and Other Advance Directives for Health Care, 2 nd Edition, Baltimore: John Hopkins University Press, 2007.

One Specific Family-Based Directive: The Proxy Negation “I request that the following person(s) NOT be allowed to make decisions on my behalf in the event of my disability or incapacity:………………………….”

The Use of Advance Directives: Ethical Perspectives Physician, Patient, and Family Perspectives are needed Values: Are Correlated with Advance Directive selection Precision Helps in surrogate decision- making

…and in the Wake of Terri Schiavo’ Case… We Need to Get Patients AND Their Loved Ones Involved

The Family Covenant: A 4G-AD Looking at the roles within the physician-patient dyad in future discussions on advance directives. The family covenant attempts to account for, and accommodate, competing interests between the individual and identified loved ones.

The Family Covenant Has Four Cornerstones: 1) The Family is the “Unit of Care;” 2) The Physician Is Charged With Comprehensive Family Health; 3) Individuals in the Family Are Treated Within the Context of the Family; and, 4) Family-based Medicine Realizes the Importance of the Bio-psychosocial Model of Medical Care.

Key Considerations An ongoing, growing, and flexible voluntary health care agreement. Requires negotiation and an agreement of its boundaries. Family members who decide not to consent initially to the family covenant would not be bound by it.

Key Considerations Parameters of the covenant members would be negotiated at the outset. Members would discuss: o How disputes would be handled, o How information would be shared, o How decisions would be made, and o How they envision the physician's and family members’ role in their care before agreeing to the covenant.

Time passes — trust accumulates in the covenant. The covenant can be renegotiated over time.

Model Family Covenant: I have entered a family covenant with my doctor, Dr.___________________and the following family members and friends: _________________________________________ _________________________________________ _________________________________________ If other family members or friends are not included above, they are not to be consulted about my health, given medical information without my consent or that of my proxy, and are not to be part of any medical decision-making on my behalf.

My family covenant directs members to carry out my autonomous values and preferences in the following way, in conjunction with my living will and/or durable power of attorney for health care: [Potential Areas for Consideration] [ ] Who Has Access to My Health Care Information (Confidentiality) [ ] Who Else May Participate in My Health Care Decisions [ ] Who Is My Proxy and Whom Else Should He or She Consult (or Not)

A Typical Case An 76 y.o. woman is 2 weeks post-op from colon cancer surgery that has been discovered to be metastatic. She is gradually deteriorating and has a poor prognosis. She is obtunded from pain medications and cannot express her wishes. She never made out a valid living will or a Durable Power of Attorney for Health Care. Two of her children want “everything done,” while another child wants all treatment stopped based on her conversations with the patient. Now what?

A Typical Case - Revised An 76 y.o. woman is 2 weeks post-op from colon cancer surgery that has been discovered to be metastatic. She is gradually deteriorating and has a poor prognosis. She is obtunded from pain medications and cannot express her wishes. She previously made out a valid living will as well as a Durable Power of Attorney for Health Care. Two of her children want “everything done.” Her health care proxy is another daughter who states her mother would want all treatment stopped based on her values and preferences. Further, the patient had identified the two other children in a Proxy Negation and Family Covenant as not having standing in her future health decisions. Now what?

Pragmatic Queries on the Use of Advance Directives Q: Does the patient have an advance directive (living will, DPA/HC, or guardian)? A: Initiate discussions for the infirmed, as well as for any adult patient (bring up yearly)

Q: Does the patient have a Values History)? A: If not, provide one and encourage discussion with the patient and between patient and family.

Q: Does the patient have multiple family members involved in their care? A: Encourage a family covenant that articulates who the proxy is and what the role of other family members are in the event of future incapacity.

Remember: “Be Prepared, Lest the Alternative is Your Want”