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Improving Care for Older Adults
Blog Post
Advance Directives May Inadvertently Harm Advance Care Planning
Patients “Set and Forget” Advance Directives, Leaving Family and Clinicians in the Dark and Advance Care Plans Incomplete
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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:
- Few of the patients had discussed their advance directive with their family or clinical teams.
- Patients said they wanted to protect their loved ones from having to make future difficult decisions, but their advance directives were often difficult to find and interpret—such as vague legal forms bundled with other components of estate planning.
- Most participants could not recall the content of their advance directives with any detail, and they rarely updated their advance directives despite evolving serious illness over time.
- Patients perceived the experience of completing an advance directive—regardless of when, how, or with whom it was completed—as a reason not to participate in conversations about current or future care with their loved ones or clinicians.
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:
- The legal nature of advance directives seems to be an obstacle to future conversations about advance care planning.
- The current process of creating an advance directive is disconnected from meaningful clinical conversations, and this disconnect often causes these important discussions to be neglected.
- Patients’ preferences can change over time.
- Because it is impossible to anticipate all possible health care scenarios that may unfold in the future, any advance directive or advance care planning process that is approached with a “set it and forget it” mentality will likely fail to improve the delivery of goal-concordant care.
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.
Author
Catherine (Katie) Auriemma, MD, MS
Fellow, Pulmonary and Critical Care Medicine, Perelman School of Medicine
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