Advance care planning is not about documents - it is about persons and their relationships

One-third of married individuals choose someone other than their spouse as a surrogate for medical decision-making. And more often than not, when adult patients chose a parent, sibling or child, they prefer their mothers, sisters and daughters to serve as medical proxies over their fathers, brothers and sons.

These are among the results of a study on advance care planning conducted by Northwestern University researcher K. Michael Lipkin, M.D., available in the online early edition of the Journal of General Internal Medicine. Lipkin is assistant professor of clinical preventive medicine at Northwestern University Feinberg School of Medicine.

The finding that 33 percent of the married patients in the study did not choose their spouse as surrogate is noteworthy, because physicians regularly look to spouses as informal surrogates.

Additionally, over a quarter of survey participants chose someone other than the person identified as an emergency contact to act as proxy in medical decision-making.

"When patients choose a surrogate who is not the person doctors would usually consult or who would not become empowered as a substitute decision-maker under state laws, physicians are alerted to engage these patients in an advance care planning process that ensures the formal appointment of their desired health care agent," Lipkin said.

"Emphasis on end-of-life care, terminal illness and the use or discontinuation of life-sustaining medical treatment [as in the Terri Schiavo case] has obscured the need for advance planning in the regular care of all competent adult patients," Lipkin said.

Lipkin commented that doctors do not ordinarily consider advance planning unless patients are elderly or seriously ill. At the same time, he and others have found, most patients are willing to discuss plans for future medical care and are waiting for their physicians "to begin the conversation and to raise the necessary questions."

Lipkin designed and conducted a survey of over 300 participants to determine whether they were willing and able to designate a specific person to act as a surrogate for medical decision-making at the time of a routine health care appointment.

Study participants were of different ages (19 to 96 years) in various states of health, who were electively seeking medical evaluation or treatment and who were considered competent to make their own medical decisions.

Of the patients interviewed, over 90 percent supported the idea of asking patients to designate a proxy for health care on a routine basis. Yet, less than 26 percent of patients had previously been asked to identify a surrogate in the course of ordinary medical care.

When asked if they would want to name a proxy for health care "now," that is, if their doctor asked them to at this particular time, more than 85 percent answered "yes."

Lipkin said that identifying a proxy for health care as part of routine medical inquiry offers several immediate clinical advantages. First, the door is opened for ongoing advance care planning discussions between patients and their doctors. Second, the benefits of choosing a health care agent are made available to all competent patients -- not only to the terminally ill, the very sick or the very old. Third, documentation of a competent patient's proxy preference in his/her medical record constitutes "clear and convincing evidence" of prior patient wishes in case of incapacitation -- providing a safety net until more definitive planning is accomplished.

Lipkin regards the routine identification of a proxy for health care as a door-opening first step for ongoing conversations between doctors, patients and families - conversations that emphasize the important relationships and values of patients and their loved ones. The nature of this process encourages continuing interchange, strengthens the patient's relationship with his/her physician and promotes continuity of care.

"Advance care planning is not about documents -- it is about persons and their relationships," Lipkin said.