Bioethics Forum Essay
The Death of Advance Care Planning is Greatly Exaggerated
Advance care planning has recently come under fire from physicians who say that it does not work and that there is too little evidence in favor of it. Advance care planning involves discussions or documents or both in which people express their values and preferences for the kinds of medical treatment that they would or would not want, particularly if they are critically ill.
Advance care planning was first developed in the United States in the 1970s and integrated into end-of-life care as a response to studies that painted a dismal picture of the state of dying. Patient preferences were often unknown, leaving families to make difficult decisions for unconscious loved ones with little guidance. Even when patients’ wishes were known, they were often disregarded. Advance care planning, as a system of practices, was designed to remedy these issues by supporting conversations between patients, families, and clinicians about patients’ end-of-life preferences in advance of medical emergencies and stating these preferences in legal documents such as advance directives.
Earlier this month, Daniela Lamas, a physician, argued in a guest essay in the New York Times that patients sometimes change their minds about what they would want if they become critically ill and that advance directives, as fixed written documents, cannot reflect these changes. Dr. Lamas recounted the story of one of her patients, who had an advance directive stating that she would not want to be hooked up to a breathing tube. But when she was rushed to the emergency room with pneumonia, her husband, told that she would die without being intubated, decided to go against her wishes and authorize doctors to intubate her. When the patient regained consciousness, she agreed with her husband’s decision. “I want advance care planning to work,” Dr. Lamas wrote. “But experiences like this one, along with a growing body of academic research, are leading me to rethink that belief.”
An editorial in JAMA last fall argued that clinical realities are simply too complex for advance care planning to be of much use. The JAMA editorial listed many shortcomings, including unclear directions in advance directives, documents that surrogate decision-makers don’t understand, and difficulties in interpreting prior conversations in which patients expressed their wishes.
Both articles also pointed to reviews of the medical literature showing little evidence of the effectiveness of advance care planning and argued that we should move away from it as a part of end-of-life care. But the evidence is in fact mixed. One study found that advance care planning helped to improve the accuracy of surrogate decision-makers in predicting patients’ wishes. Another review concluded, “Although some Quality of Care and Health Status outcomes were mixed, increased patient/surrogate satisfaction with communication and care and decreased surrogate/clinician distress were positive.”
Instead of further investments in developing and expanding access to advance care planning, critics argue for improved training to support patients and families in discussing and making medical decisions as they come up. There is good reason for this—considering specific options for care when they are needed is more relevant than people imagining what they would want in hypothetical scenarios. But there are also reasons for conducting important conversations in advance.
Decisions made in the moment are stressful and occur precisely when individuals are least able to calmly deliberate about options. The patient may be unconscious or otherwise unresponsive. Surrogates of patients who have used advance care planning make better-informed decisions about what the patients would have wanted, compared with surrogate of patients who did not use advance care planning. There is also evidence that advance care planning reduces anxiety, depression, and other emotional distress on surrogates during the grieving process. These important benefits should not be ignored. Alternatives to advance care planning should be developed, but as supplements for effective end-of-life care, not as replacements.
There are significant problems with advance care planning. Access to it varies among patient populations and is especially low among minority groups. And patients’ wishes can be ambiguous to people trying to interpret them. But instead of viewing these problems as the death-knell for advance care planning, it would be better to respond by making improvements. Possible improvements include use of video technologies to assist people with communicating their wishes and training clinicians in cultural sensitivity to reach more diverse groups of people. Many of these approaches are currently being studied. Recent changes allowing health care providers to bill Medicare and some private insurers for advance care planning may also improve access and quality.
Giving up on advance care planning is not called for by the evidence and doing so would mean giving up significant benefits. Instead, let’s improve advance care planning and enhance support for surrogates who make decisions for their loved ones at the end of life.
Ben Sarbey, JD, MA, (@SarbeyBen) is a PhD candidate in philosophy at Duke University.