Some patients take you by surprise.
Last year, Sheila* — an active and fit woman in her 70s — was found on the floor after suffering a massive stroke. Only one day earlier, Sheila had appeared in good health and described no particular concerns to her primary care physician, Dr. Suzanne Salamon, a geriatrician at the Beth Israel Deaconess Medical Center in Boston. Sheila “was the last person I thought this would happen to,” says Dr. Salamon, noting that Sheila’s physical exam, blood tests, blood pressure, and other indicators all appeared normal.
Fortunately, just before the appointment, Sheila had sent Dr. Salamon a copy of her updated health care proxy. It indicated that she had chosen her friend, Jane,* to speak on her behalf should she ever be in a situation in which she could no longer communicate. Jane’s assistance became essential before anyone predicted it would be necessary.
A Romantic Realist
We all know of people who’ve become seriously ill without warning. A neighbor has a heart attack while digging out after a blizzard. A co-worker lands in the ICU after a cycling accident. A college athlete is hospitalized after contracting meningitis.
“We all think, ‘There but for the grace of God go I,’” says Jane, who is also a medical school professor. “But we don’t take the next step and make plans,” including choosing a health care proxy and discussing our end-of-life care preferences with them.
Sheila did just that. “She was one of the most well-organized people I knew,” Jane recalls. While Sheila had a particular fondness for romantic comedies, she was also “straightforward and no nonsense.” According to Jane, “[Sheila] wanted to determine her own destiny as much as she possibly could.”
Over the course of their nearly 20-year friendship, Sheila and Jane had talked about their end-of-life care wishes more than once. While Sheila’s advance care directive didn’t explicitly address her ultimate medical circumstances — leaving Jane to “extrapolate from the conversations we’d had” — Jane still says her friend had “more than prepared me over the years.” In fact, because Jane was aware that Sheila had recently updated her paperwork, the potential role of health care proxy was fresh in her mind when she got the call notifying her that Sheila was in the hospital.
Sadly, Sheila’s eventual death meant not only the loss of Jane’s friend, but also her health care proxy. Jane now has to find a new person to act on her behalf should she ever become unable to speak for herself. Jane’s experience in the role has helped refine her advice for how to pick a proxy:
- Choose someone who won’t be intimidated by an emergency or intensive care setting.
- Pick a person who has experience that will help in a crisis situation. While this doesn’t have to include having a medical background, a proxy should be comfortable asking questions (especially when they don’t understand something) and making tough decisions.
- Appoint someone who lives reasonably nearby to be your primary proxy. They may have to spend a lot of time at the hospital to be easily accessible to your medical team.
Jane also has advice for anyone considering serving as a proxy. “Don’t accept the role unless you’ve been given an advance care directive you’ve discussed,” she says. She also encourages everyone to make their end-of-life wishes clear to as many people as possible — significant others, relatives, friends, etc. — to minimize the possibility for disagreements during a medical crisis.
*”Sheila” and “Jane” are real people, but their names have been changed to preserve their privacy.