Physicians and other medical professionals know the importance of advance directives, both in terms of patient empowerment and professional liability. But engaging patients in healthy discussions about their wishes for (or the refusal of) future medical care is often fraught with obstacles — and it’s not just because people don’t like to talk about death.
Many patients don’t realize they have choices in how they are treated in life-sustaining situations, so engaging patients in learning about the impacts of prognoses and treatments can go a long way in empowering them to make informed choices when the end of life is on the horizon.
However, the best time for discussing advance directives is long before a life-threatening illness occurs. Primary care physicians (PCPs) can help patients make sure their wishes are met by making the advance directive a regular topic of discussion or, at the very least, at the annual exam.
The 2018 Conversation Project National Survey reveals a serious disconnect between what patients view as important and what actions they actually take:
- 92 percent of Americans say it’s important to discuss end-of-life wishes, yet only 32 percent have actually had such a conversation with their doctors.
- 95 percent say they’d be willing to discuss the topic if asked.
- While many surveyed patients say they believe talking about end-of-life care would create anxiety in themselves or loved ones, they also say not discussing it actually increases their anxiety.
One of the biggest hurdles for patients is the language used in the advance directive forms, which often assumes a very high level of medical understanding, especially when it comes to complex life-sustaining equipment, says Kelly McCutcheon Adams, LICSW, Senior Director at the Institute for Healthcare Improvement (IHI), the Boston not-for-profit that birthed The Conversation Project and other initiatives on the documentation of healthcare wishes.
“For example, a person’s willingness to be on a ventilator isn’t necessarily a yes/no question,” she explains. “There’s a huge difference between being on a ventilator for six or eight weeks for recovery and being on a ventilator for the rest of your life. Patients need to understand that they can express wishes about the degrees of treatment instead of answering as a yes/no question.”
The National Institute on Aging has published a portal that demystifies the medical language commonly found on advance directive forms, including explaining what being on a ventilator entails and what palliative care encompasses. Sharing this resource with patients a week or so before an annual exam visit can help prepare patients to participate in a meaningful discussion about advance care directives, providing information and clarification of terms that can make the visit more efficient for physicians and more informative for patients.
The Conversation Project originally began in 2010 as a patient-based educational endeavor, but it has grown far beyond that. Getting PCPs involved on the front lines is the only way to achieve true culture change, McCutcheon Adams notes.