CLEVELAND—Primary care physicians and their patients should make advance care planning part of their routine office visits. This is the message of the Education of Physicians in End-of-Life Care (EPEC) program, developed by the American Medical Association in conjunction with the Robert Wood Johnson Foundation.
Advance care planning is a two-step process. First, the patient designates a health care proxy in the event of a medical situation in which the patient is unable to make his or her own decisions. Second, the patient documents his or her wishes regarding medical care in the event of a life-threatening illness.
The EPEC curriculum was designed by nationally recognized experts in palliative care to educate physicians in the essential clinical competencies of end-of-life care. The educational format consists of a teaching session combined with small group interactive sessions and videotape presentations.
The program was presented by Cleveland Clinic Foundation faculty, as well as guest faculty from various institutions in the Cleveland area, at a conference presented by the Harry R. Horvitz Center for Palliative Medicine, Cleveland Clinic Taussig Cancer Center.
Conference participants were divided into small groups for the interactive sessions. Bruce E. Agneberg, MD, medical director of the Visiting Nurse Association of Cleveland Hospice, led one of the small groups on advance care planning.
A Video Example
The videotape on advanced planning shows a physician and patient sitting together after a routine physical exam as the physician raises the topic of advance care planning. The physician emphasizes that he brings this up with all his patients as a “routine matter.”
When the patient expresses some confusion, the physician gives a specific example of how difficult it would be to know the patient’s wishes if he were brought to the hospital seriously ill and unconscious. The physician prefaces his example by saying, “Hopefully, nothing like this would ever happen.”
The doctor states that it is important for the patient to choose a health care proxy and offer some medical directives in the event he were to become incapacitated. He gives the patient a worksheet to take home and share with his wife. He also acknowledges that the patient’s beliefs and values may change over time and that the documents can be changed in kind.
Broaching the topic of advance care planning can be difficult, Dr. Agneberg acknowledged. “End-of-life care is all about communication,” he said. The best approach is to be straightforward and routine. To assist physicians with this task, the conference binder contained “discussion scripts” that offer ways in which to introduce and present the topic.
The patient must be encouraged to identify a health care proxy. “That is key,” Dr. Agneberg said. If the patient were to become incapacitated, the proxy has the legal capability to make decisions in the place of the patient. Patients who are very ill yet competent will, of course, continue to make their own decisions about medical care.
Once the patient has named a proxy, he or she must inform the proxy of the fact, and the proxy must be willing to take on that role. “Encourage your patients to bring up the subject at the next holiday that brings the family together,” Dr. Agneberg suggested. “It isn’t a conversation just for grandmas and grandpas,” he said. “It’s a conversation for all of us.”
At the patient’s next visit, the physician should be prepared to answer questions and to guide the patient through the process of making decisions about health care preferences. Physicians are in a position to help patients explore their values and goals as they prepare their medical directives. However, physicians must be sensitive to differences between the patient’s beliefs and their own. “If I start to impose my own values on that person—without exploring their values—I’ll get into trouble,” Dr. Agneberg said.
Ideally, the health care proxy should be included in this conversation. The physician can help the patient clarify goals by describing specific scenarios that the patient may face, such as the onset of coma with no awareness or the onset of dementia either alone or in the presence of an advanced life-threatening illness.
The physician should define key terms, explain the benefits and burdens of treatments, and remind patients that any intervention can be refused. Patients should also consider situations in which recovery cannot be predicted.
Although advance care planning may sound time consuming, in actuality the patient can do most of the preparation without the physician. Worksheets to help the patient explore values and goals were provided in the EPEC binder. The forms can also be used to document the decisions the patient made.
“Encourage your patients to take the worksheets home and discuss them with their proxy and family,” Dr. Agneberg said. Including a self-addressed, stamped envelope will make it easier for your patient to return the forms, he added.
Finally, the physician should document the discussion that occurred. All three parties—the patient, the proxy, and the physician—should sign the completed medical directive. The document should be placed in the patient’s chart and copies provided to take home.
At future visits, the physician should take note of any major life events or changes in health and help the patient revise the directive accordingly.
