Preparing for the Future of Family Medicine: Teaching Patient-Centered End of Life Care Advance Care Planning Options for Care at the End of Life David J. Doukas, M.D. William Ray Moore Endowed Chair of Family Medicine and Medical Humanism University of Louisville

Learning Objectives RE: Teaching family medicine residents about advance care planning through goal-setting with patients and families Discuss advance health care planning in routine patient interactions. Discuss how family medicine educators can teach learners advance health care planning skills by modeling good interpersonal communication skills with the patient-family unit, and use of a family covenant model. Goal-setting will be discussed in end of life care.

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

Standard Advance Directives Do Not Attempt Resuscitation (DNAR) Order The Termination of Treatment Order The Living Will Durable Power of Attorney for Health Care

KEY EBM RECOMMENDATIONS FOR PRACTICE B = Inconsistent or limited-quality patient-oriented evidence: 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. 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.

KEY EBM RECOMMENDATIONS FOR PRACTICE C = Consensus, disease-oriented evidence, usual practice, expert opinion, or case series. 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.

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

The Values History by David J. Doukas, MD Laurence McCullough, PhD “This Values History serves as a set of my specific value-based directives for various medical interventions. It is to be used in health care circumstances when I may be unable to voice my preferences. These directives shall be made a part of the medical record and used as supplementary to my living will or durable power of attorney for health care.”

Section I. Values Section Basic Life Values Which of the following two statements is the most important to you? I want to live as long as possible, regardless of the quality of life that I experience. I want to preserve a good quality of life, even if this means that I may not live as long.

Quality of Life Values I want to maintain my capacity to think clearly. I want to feel safe and secure. I want to avoid unnecessary pain and suffering. I want to be treated with respect. I want to be treated with dignity when I can no longer speak for myself. I do not want to be an unnecessary burden on my family. I want to be able to make my own decisions.

Quality of Life Values I want to experience a comfortable dying process. I want to be with my loved ones before I die. I want to leave good memories of me to my loved ones. I want to be treated in accord with my religious beliefs and traditions. I want respect shown for my body after I die. I want to help others by making a contribution to medical education and research. Other values or clarification of values above:

Section II.Directives Section Cardiopulmonary resuscitation Ventilator Endotracheal tube Total parenteral nutrition Intravenous medication and hydration All medications used for the treatment of my illness continued. Nasogastric, gastrostomy or other enteral feeding tubes Dialysis machine Autopsy Admission to the Intensive Care Unit I want 911 called in case of a medical emergency

____YES ____TRIAL for the TIME PERIOD OF ___________ ____TRIAL to determine effectiveness using reasonable medical judgment. ____NO Why? Initial/Date

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 Values: Correlations with Advance Directives Precision Get Patients andTheir Families Involved

The Family Covenant - 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: How disputes would be handled, How information would be shared, How decisions would be made, and 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)

Teaching Through Role Modeling An 76 y.o. woman is 2 weeks post-op from colon cancer surgery that has been discovered to be metastatic. With her attending and resident physician present, she makes out a valid living will as well as a Durable Power of Attorney for Health Care.

Later… She gradually deteriorates and is obtunded from pain medications and cannot express her wishes. 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.

The Role of the Physician-Teacher in the Hospital Education - Both residents and the public Informed Consent - Role modeling the consent process Getting Orders on the Charts - Teach How to Translate Advance Directives into Orders