Give All Patients a Voice in Their Care

With over half a million American lives lost to COVID-19 in the last year, including many young adults who had little prior reason to consider their mortality, the pandemic has made all of us grapple with the fragility of life. At the same time, it has brought countless families into the hospital — even if only by proxy for many through a smartphone or tablet due to visiting restrictions — where they have faced difficult decisions about how to proceed for their loved one’s care.

These conversations are hard. We all deserve to receive care that is authentic to the way we have lived our lives. And we should work to reduce the toll that decision-making may have on our loved ones. Advance care planning (ACP) can help us meet these goals.

ACP is a patient-centered communication process that ensures individuals have a voice in their own care. It involves selecting a surrogate decision-maker, having conversations about what is most important, and documenting these wishes.

During this past year, hundreds of thousands of people have died alone, in hard-pressed intensive care units, hospital rooms, and nursing homes. And while we are far from finished with COVID-19, the receding tide of infections gives us an opportunity to consider what we’ve learned and how we might improve the future of healthcare delivery — including ACP.

Beyond being terribly sad and isolating, the situation of dying alone with COVID-19 has meant that many patients have not had someone at their side to communicate their wishes and advocate on their behalf. Some could voice their own opinions, sure, but for others — particularly those patients who have not engaged in ACP — clinicians and families have faced painful uncertainty about what care to provide and for how long. Indeed, recent research suggests that decisions to limit care among those dying of COVID-19 may have been delayed, given visitor restrictions and the lack of family to speak on patients’ behalf.

The pandemic has also laid bare another ugly reality — historically marginalized populations, including Black, Brown, and Tribal communities, have been hit hardest by the pandemic, yet research has shown that these communities typically have the least access to healthcare and ACP.

Helping all patients and families plan ahead is our best mechanism to avoid uncertainty in a moment of crisis, to honor patients’ wishes, and to mitigate the moral distress experienced by families and our workforce.

Three Steps to Improve ACP

Increasing rates of ACP will require health systems to address several barriers that currently make ACP difficult. These include patient-facing barriers, such as the legal language of advance directive forms and legal requirements that vary from one state to another. They also include clinician and system-facing barriers, such as lack of training and/or comfort discussing ACP and a lack of electronic health record optimization to document their wishes.

We propose three ways to address these barriers that could be implemented immediately:

• To overcome health disparities, patients must be provided free, easy-to-understand, and evidenced-based health information about ACP in patients’ preferred language.
• Health systems should encourage and support all clinicians (e.g., pharmacists, nurses, physicians, etc.) and allied health professionals (e.g., chaplains, physical therapists, etc.) to be able to provide patients basic ACP information, to have brief and effective conversations with patients, and to document patients’ wishes in the medical record as a normal part of their job.
• Health systems should leverage population-level ACP messaging, such as letters, automated calls or text messages, patient portals, and pamphlets, even at vaccine sites. Messaging campaigns should be co-created with communities and point individuals toward freely available ACP tools and easy-to-read state-specific advance directives — the paper instruments of ACP.

These are just a few examples of concrete changes that could improve access to and engagement in ACP. Alongside these changes, we also encourage policymakers and others to consider outside-the-box approaches, such as delegalizing advance directives from legal to medical documents. In the era of “open notes” brought on by the 21st Century Cures Act, with patients having access to the electronic record on their own devices, health systems and app developers should consider new approaches for allowing patients to create, curate, and update advance directives on their own.

As we look toward a brighter future with increasing COVID-19 vaccinations, it is important that we also honor the pain of the pandemic by taking its lessons to heart and launching renewed efforts to empower patients and families with clear, accessible ACP.

Brian Block, MD, is an ICU pulmonary/critical care physician and assistant professor at the University of California San Francisco (UCSF). Rebecca Sudore, MD, is a geriatrician, palliative medicine physician, and professor of medicine at UCSF. She is also the creator of PREPARE for Your Care, which offers free ACP resources for patients and clinicians.

Last Updated July 02, 2021