Advance Directives—Spelling Out Goals
and Preferences in Writing
The next step after advance care planning is completing an advance directive. These are written instructions spelling out future preferences for medical treatment. According to the “Dying in America” report, it’s estimated that seventy percent of older Americans are too ill to make decisions about their treatment when they near the end of life. An easily accessible written document of patient wishes is key to carrying out their wishes.
Gundersen Health System in La Crosse, Wisconsin has advance care planning facilitators who help patients fill out advance directive forms. Facilitator Janet Olmstead helped Karen, a Gundersen patient, fill out her advance directive form. The advance directive is a legal document that has two parts. One part designates someone to be Karen’s medical representative—this person can make medical decisions for Karen if she is unable to. Karen has chosen her sister Patty to be her agent. The other part is known as a living will. It specifies the kind of medical care the patient wants in the event of a life-threatening illness when there is little or no hope of recovery. Karen can choose to prolong her life at all costs or to stop treatment and choose comfort care.
Once the advance directive is completed and signed before a notary public or two witnesses, the document will become part of Karen’s medical record. Gundersen Health System has a strong policy that honors patient preferences for end-of-life care. But outside of La Crosse, patient preferences are frequently not honored, either deliberately or inadvertantly. Advance directives can easily be misplaced or lost. During their TEDx conversation at Stanford, Tom Brokaw admitted to his daughter that he didn’t remember what was in his living will and where he put it. “That’s the case for the majority of people,” said Dr. Jennifer Brokaw.
How Enforceable Are Advance Directives?
When living wills and advance directives are not accessible, the patient’s written preferences cannot be carried out unless the hospital has a copy. But even if hospitals and long-term care facilities have a copy of the advance directive, there’s no guarantee that the patients’ wishes will necessarily be honored as a practical matter.
San Francisco Bay Area resident Sandy Miranda found that out when she placed her aging mother Frances Lucille in a nursing home in southern Texas. Soon after the move, Frances suffered a stroke and could no longer care for herself. Before the stroke, Frances had completed an advance directive and designated Sandy as her medical agent. “If something happened that would make her completely incapacitated, she didn’t want intervention and didn’t want to be kept alive artificially,” said Miranda, “She had a DNR, do not resuscitate. Unfortunately, the nursing home did not honor that.”
Sandy’s mother got worse over time and later caught pneumonia. The nursing home kept her alive, in spite of her stated wishes in the advance directive. Miranda said, “They were not supposed to do this. But they gave her antibiotics and kept her in this horrible state for yet another year and a half. And I really found that sad because it caused her to stay in a really sad condition there much longer than she would have.”