Pandemic Has More Americans Open to Planning for End-of-Life Care

National Healthcare Decisions Day shines a light on the importance of documenting end-of-life wishes

April 5, 2021

MIAMI, FL. — A new nationwide study reveals that the COVID-19 pandemic has made many Americans—especially younger Americans—more open to talking about their wishes and values for end-of-life care. However, while most people say these conversations are important, they don’t always take action to discuss or document their desires.

The study also points to the critical role healthcare professionals play in starting those conversations.

The findings from a study commissioned by VITAS Healthcare come ahead of National Healthcare Decisions Day on April 16 and illustrate a growing desire among Americans to consider what they want—and don’t want—as they face the challenges of advanced illness. VITAS, the nation’s leading provider of end-of-life care, conducted the survey of 1,000 U.S. adults to help healthcare professionals have frank and honest conversations about care decisions. Additional findings will be shared in the coming months.

1 in 5 respondents said they had a loved one who was seriously ill or died during the COVID-19 pandemic, but they did not know their wishes or values for end-of-life care.

With more than 550,000 lives lost to COVID-19, more people are thinking about death and dying—although that doesn’t mean they are talking about what’s important to them for their own care.

The study found that a majority of respondents (69%) report that talking about their wishes and values for end-of-life care is important to them. Only slightly more than half (56%) of all respondents have actually discussed those wishes. This is a marked increase from 2018, when a Conversation Project study that found only 32% had shared their wishes.

By not talking about care decisions, families many times don’t know what their loved ones want, or do not want. In fact, the survey found that 1 in 5 respondents said they had a loved one who was seriously ill or died during the COVID-19 pandemic, but they did not know their wishes or values for end-of-life care.

“New research has demonstrated the impact of the pandemic on end-of-life decision-making. Now is the time to talk to patients about documenting their wishes and goals for care. As clinicians, we have a responsibility to have this conversation because, as the study shows, patients are expecting us to initiate it,” said Dr. Joe Shega, VITAS executive vice president and chief medical officer. “We hope all healthcare professionals use National Healthcare Decisions Day as an opportunity to have those conversations with their patients and to point them toward available resources.”

Among other findings, the study revealed: 

• The pandemic has made many Americans more open to writing down their wishes, but that is not translating into action.
  • More than a quarter (29%) of respondents said that the COVID-19 pandemic increased their likelihood to write down their wishes and values for end-of-life care.
• Respondents expect healthcare professionals to initiate the conversation. 
  • Nearly a quarter (22%) of respondents said people should start thinking about wishes and values for end-of-life care when their doctor brings it up to them – and the percentage increased to 31% for non-white respondents (compared to 17% of white respondents).
• Barriers to creating an end-of life plan vary. The most common reasons among all respondents for not writing down wishes and values for end-of-life care were:
  • Not sick or dying (42%)
  • It is depressing to think about (26%)
  • They do not know how to go about creating a plan (23%)

While research published by the American Geriatrics Society in 2018 shows that 99% of physicians believe it is important to have end-of-life care conversations, only 29% report having formal training to equip them.

To help bridge the gap and start these vital conversations, VITAS offers the following free resources for health care professionals:

Attend the April 14 VITAS Advance Directives and Advance Care Planning webinar. Physicians, nurses, social workers and case managers are encouraged to attend this webinar so they are prepared for National Healthcare Decisions Day on April 16. Please note this webinar will be available only live. Register at VITAS.com/NHDD. 

Download our Conversation Starter: Visit VITAS.com/NHDD to download “Tips for Effective Goals-of-Care Discussions” to help start compassionate, productive dialogue with patients about making informed healthcare decisions.

National Healthcare Decisions Day is a national program sponsored by The Conversation Project and is intended to “inspire, educate and empower the public and (healthcare) providers about the importance of advance care planning,” according to the organization’s website.