CHRISTINE BESTVINA, a thoracic oncologist at University of Chicago Medicine, recently had one of her patients arrive at the hospital emergency room with elevated calcium levels, a complication of her advanced cancer. The woman was too confused to answer questions, recalls Bestvina, and her two daughters had to decide whether to insert a tube into her airway through her mouth to help her breathe, a procedure called intubation. One daughter supported intubation; the other argued that their mother would not want it.
The first daughter “eventually agreed to a ‘do not resuscitate’ status,” says Bestvina. The patient was placed on comfort care measures and died that evening. Bestvina says she’s still unsure how the daughters feel about their choice. But after repeatedly watching this type of anguished decision-making in life-and-death situations, she is sure about her strong support for advance care planning.
These resources can help you start planning:
Prepare for Your Care, developed by geriatrician Rebecca Sudore at the University of California, San Francisco, offers videos, a question-based guide to advance care planning and easy-to-read advance directives.
The Conversation Project offers free materials to get people talking about advance care planning.
Five Wishes, developed by Aging with Dignity, has an easy-to-use and easy-to-understand advance directive document.
Advance care planning requires individuals to have a focused conversation with family members and providers about the type of care they would like to have, and who should take charge, if they can’t make decisions for themselves. Their wishes are typically outlined in a legal document called an advance directive.
An advance directive should reflect “conversations around the kitchen table” family members have about their values, says Kate DeBartolo, senior director of The Conversation Project, an initiative of the Boston-based Institute for Healthcare Improvement. Ideally, she says, these conversations should take place “during a time of low stress” and “not in the middle of an emergency or crisis.”
Studies have found that patients want to discuss end-of-life wishes with their doctors and that advance care planning can reduce anxiety for surviving relatives. Yet the importance of advance care planning isn’t widely understood. For cancer patients, research shows, advance care planning usually occurs only after a patient is hospitalized.
Bestvina says cancer patients should discuss how they want to have a medical crisis handled as soon as possible after their diagnosis. Medicare reimburses providers for discussing planning with patients to develop an advance directive for their care. Other insurers may also cover these planning sessions.
Advance directives should be revisited over time. “It’s not necessarily just about dying,” Bestvina says. “It’s about creating a plan that’s in alignment with the patient’s wishes”—in terms of treatment, support medications and the handling of emergency situations.
Researchers are studying the best ways to help people have these conversations. A randomized clinical trial of nearly 1,000 older adults with a chronic illness found that patients who received access to a user-friendly website about advance care planning and an easy-to-read advance directive were more likely to start planning than those who received the advance directive alone.
Rebecca Sudore, a geriatrician and palliative medicine physician at the University of California, San Francisco, who led the study, published in the December 2018 JAMA Internal Medicine, has made the website used in the study available to the public. She says she would like to see advance care planning conversations become as normal as those about health insurance. “Advance care planning is something people can start to engage in no matter what age or stage of health they are in,” Sudore says.
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