No one likes to think about their own mortality. But COVID-19 has shoved life's dark questions to the forefront: "What if I'm hooked to a ventilator and can't speak?" "If my heart stops beating, do I want to be resuscitated?" "Where do I want to die?"
West Virginia University researchers saw a sharp uptick in inquiries regarding end-of-life care in the first half of 2020, according to a study published in the Journal of Pain and Symptom Management.
Danielle Funk, program manager of the West Virginia Center for End-of-Life Care and lead author of the study, said calls to the Center spiked threefold in the early months of the COVID-19 pandemic. This indicates a new sense of urgency in advance care planning - such as completing directives and medical orders (i.e. Do-Not-Resuscitate forms) - in West Virginia.
We average between 70 and 120 calls a month. 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."
Danielle Funk, Program Manager, West Virginia Center for End-of-Life Care
The Center, housed in the WVU Health Sciences Center, was established in 2002 to provide resources to West Virginians seeking guidance on their preferences for care at the end of life.
For the study, Funk examined the first six months in 2020 of inquiries to the Center compared to the previous five years. Many of the callers this year specifically asked about COVID-19 and its impact on advance directives and medical orders, as well as how to respect patients' wishes via medical power of attorney or health care surrogate during social distancing.
The Center also distributed more advance directives - legal documents that outline how a patient wants medical decisions made for them if unresponsive - during the first half of 2020.
The Center's e-Directive Registry, which houses patients' advance directives and medical orders and makes them available to treating health care providers, also experienced COVID-19-related changes. Most remarkably, the Registry saw an increase in DNR cards by 77 percent between 2019 and 2020.
"Essentially, a DNR card says if your heart stops beating, no one's going to perform CPR on you," Funk said.
The Registry also accepted more Physician Orders for Scope of Treatment forms. A POST form is more wide-ranging and less black-and-white than a DNR card, Funk said. POST forms are also intended to relay the patient's wishes but leave wiggle room for various scenarios.
"There are different levels," Funk said. "For instance, if your heart stops beating, do you want full medical interventions? Or just certain, limited interventions? Or do you just want to be kept comfortable?"
The Center's e-Directive Registry has been lauded nationally and is viewed as one of the top two - along with Oregon - for its comprehensiveness, Funk said. Healthcare providers are able to access the Registry 24/7 through the West Virginia Health Information Network for their patients' advanced care documents.
"This has been very beneficial in situations where patients could not speak for themselves and could not provide documentation of their advance directives or medical orders," Funk said. "Many states have registries that only accept one type of form. We accept everything, even brain bank donations and human gift registry forms. All the documents are there and you don't have to worry about losing them."
Despite the enhanced awareness of end-of-life care during COVID-19, Funk believes anytime is a good time to start planning, for the sake of oneself and loved ones. And everything is available through the Center.
"I have the same call to action now than before COVID," Funk said. "I encourage everyone to begin advance care planning. There's no downside to it. It's just making your wishes known. I've had people call me and say, 'I'm doing this because my loved one didn't do it before me. And they had this horrific death.' When people spend the majority of their lives trying to please everyone else, you should be able to choose what happens to you when you're sick or when you die."
Funk, D.C., et al. (2020) How COVID-19 Changed Advance Care Planning: Insights From the West Virginia Center for End-of-Life Care. Journal of Pain and Symptom Management. doi.org/10.1016/j.jpainsymman.2020.09.021.