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Blog Post
Advance directives and advance care planning have long been touted as the best way for patients to avoid unwanted care if a serious illness prevents them from communicating their wishes. Nevertheless, patients who have completed an advance directive or done other advance care planning often receive just as much aggressive end-of-life care. Indeed, research studies have shown that patients with advance directives and who participate in advance care planning (often studied together) are no more likely to receive care that aligns with their preferences than those with no advanced planning.
This disconnect between patient wishes and care received, despite advanced planning, has prompted calls from some palliative care experts to abandon the practice of advance care planning altogether. Meanwhile, advance directives continue to be promoted widely for their potential to guide patient-centered end-of-life care. To help inform this debate, we conducted a study, published in JAMA Internal Medicine, in which we interviewed 29 patients with chronic serious illnesses about their experiences with advance directives and advance care planning.
Surprisingly, we found that advance directives often act as an obstacle to meaningful conversations around patients’ goals of care and future decision making. In particular, we found:
These results help explain why structured advance directive interventions may not work. They also point to the urgent need to test new interventions that can succeed where traditional advance directives have failed. Any new interventions should consider the following takeaways from our study:
There is widespread recognition that health care for patients with serious illness needs improvement. It is time to fundamentally rethink the role of advanced directives and their connection to meaningful conversations with the clinicians that will ultimately deliver care. Policies that encourage advance directive completion without accompanying advance care planning between patients, family members, and medical teams are unlikely to achieve their objectives. Future interventions must shift away from over-emphasizing elicitation of one-time preferences toward preparing patients and their loved ones to actively engage in difficult future decision making. To determine what works, researchers in the field need to be clear about distinguishing advance directives from advance care planning rather than conflating these interventions.
The study, How Traditional Advance Directives Undermine Advance Care Planning: If You Have it In Writing You Don’t Have to Worry About It, was published on April 25, 2022, in JAMA Internal Medicine. Authors include Catherine Auriemma, Helen O’Donnell, Tamar Klaiman, Julia Jones, Zoe Barbati, Eda Akpek, and Scott D. Halpern.
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