Experts Call For More Advanced Care Planning During the COVID-19 Pandemic

A new study has revealed the urgent need for advanced care planning amid the coronavirus pandemic, highlighting how people are more concerned about what would happen if they became unable to make their own medical decisions.

The study was published in the September edition of the Journal of Pain and Symptom Management (JPSM). Danielle Funk, program manager of the West Virginia Center for End-of-Life Care, initiated the study after noting an increase in calls to the center during the early months of the COVID-19 pandemic.

“We average between 70 and 120 calls a month,” Funk says of the initiative behind the study. “But in March (2020), we had over 300 calls. COVID made a lot of people recognize that you never what’s going to happen and you need to be prepared for your medical decisions.”

According to the study, the most common calls to the center were related to four main topics:

• Confirmation of documents in the registry
• Urgent desire to initiate advance care planning
• Request for temporary rescindment of treatment-limiting forms
• Patient-specific questions about how to honor patients' wishes in advance directives and medical orders in light of their COVID-19 status

What do the results of the study mean for the United States as a whole? “Among its many effects, the pandemic has reminded all of us of life’s ever-present uncertainty and the importance of family,” Eric Bush, MD, RPh, MBA, chief medical officer of Hospice of the Chesapeake, tells Verywell. “In this context, it makes sense that more people are not only thinking about death and dying but, as the JPSM study suggests, also taking action regarding end-of-life care."

Dmitry Kozhevnikov, DO, a Yale Medicine hospice and palliative care medical doctor, adds that there are two unique aspects of the COVID-19 pandemic that could lead to an increased need for advance care planning:

• The rapid and unexpected clinical deterioration that is seen in many patients with severe COVID-19
• The pervasive uncertainty about the infection's prognosis and effective treatment, especially in the first few months of the pandemic

“Additionally, the beginning of the pandemic was marked by a palpable sense of uncertainty surrounding the prognosis of this disease given the lack of effective treatments,” Kozhevnikov, who is also the director of the Outpatient Palliative Care Program at Smilow Care Centers, tells Verywell. “This may have prompted many patients to think about the kind of care they would want to receive in case they became very ill from the virus, unsure if they would recover.”

Making an End-Of-Life Care Plan

No matter the time, Kozhevnikov and Bush both emphasize the importance of having an end-of-life care plan.

“Pandemic or not, advanced care planning is something that everyone should consider once they reach a certain age because it removes uncertainty at a very stressful and emotional time,” Bush says. “We’ve seen it prevent families from having disagreements and arguments that they might otherwise have, and subsequently get to keep their focus on saying goodbye to their loved ones.”

That being said, Bush notes this type of planning is especially important during a pandemic. For example, some people are not getting to say goodbye to their loved ones or are facing increased stress in their daily lives. 

“Planning makes what is an unavoidably difficult time a bit easier on everyone involved," Bush says. "Advanced care planning is imperative regardless of the context. An individual’s health status may change rapidly. The only way to ensure one receives the care he or she would want is to delineate their wishes clearly and consistently.”

Kozhevnikov says that while advanced care planning is never easy, it can also bring comfort in challenging times. “Some people experience a sense of relief after having these discussions and completing the paperwork, knowing that it is one less thing to worry about," he says. "Others are comforted in knowing that their voice will be heard even if they are unable to speak for themselves.”

Bush adds that “while they are certainly few and far between, one of the rare silver linings of the pandemic may be that it has prompted more families to have the difficult conversations surrounding their own or their loved ones’ end-of-life care.”