On National Healthcare Decisions Day, Americans’ Momentum for End-of-Life Planning Slows As Pandemic Wanes

April 12, 2022

MIAMI, FL  – Although more Americans are reporting that they have documented their wishes and values for end-of-life care, there are signals that this upward trend could reverse. As fears and restrictions related to the COVID-19 pandemic ease, and as the death toll declines, Americans are also reporting they are now less likely to discuss or document their plan for end-of-life care, compared to a year ago.

The findings come from a new nationwide study commissioned by VITAS Healthcare, a leading provider of hospice and palliative care, and issued in conjunction with National Healthcare Decisions Day (April 16).

The poll reveals new insights on trends among different generations and ethnic/racial groups, as well as the current – and potential – role healthcare professionals play in discussing and documenting one’s wishes and values for end-of-life care.

I can’t overstate the importance of advance care planning and advance directives. ... Knowing a patient’s wishes for end-of-life care ensures care aligns with their goals and values.-Joseph Shega, MD, chief medical officer, VITAS Healthcare

“The pandemic has, unfortunately, brought death to the doorsteps of many Americans. Compared to 2021, we see that more people report having documented their end-of-life wishes, which is a positive sign,” said Dr. Joseph Shega, VITAS executive vice president and chief medical officer. “However, we are also seeing a decline in indication that those who have not yet documented their plans will do so, possibly tied to a COVID-19 reprieve on the horizon. Seeing this, I can’t overstate the importance of advance care planning (ACP) and advance directives. ACP allows patients to make their preferences known early, and knowing a patient’s wishes for end-of-life care ensures care aligns with their goals and values while also relieving the burden on families to make critical medical decisions on behalf of their loved ones.”

Don't know where to start? Download a discussion guide for families

Among the survey’s key highlights is the increased openness to advance care planning reported by Black Americans, the undeniable role of healthcare professionals in initiating end-of-life conversations, and the need for more open and frank discussions about patients’ wishes concerning their care.

The survey’s findings include:

• An increase in the number of people documenting their wishes, which corresponds to last year’s uptick in openness to advance care planning. But waning interest in advance care planning may mean that upward trend will vanish.
  • In 2021, 29% of Americans reported that the pandemic increased the likelihood that they would discuss documenting their wishes. This year, that percentage dropped to 22.5%.
  • More people reported that they have documented their wishes this year (35.4% in 2022 versus 32% in 2021). That percentage is still a fraction of those who say it’s important or very important (68%) and those who have at least discussed their wishes (55.5%).
  • The likelihood to discuss advance care planning decreased among younger Americans ages 18-25, who in 2021 were among the most open to those discussion. In 2021, 47% said they were likely to discuss their wishes, but this year, that dropped to 37.8%. Conversely, this year, older Americans (55+) reported they are more likely to discuss advance care planning (73.1% in 2022 vs. 65% in 2021).
  • More women this year reported that they have written down their wishes and values compared to last year (36.7% in 2022 vs. 27% in 2021).

• However, the trend may not be vanishing across the board. Interest in advance care planning has risen among Black Americans, who have been disproportionately affected by COVID-19.
  • Black Americans reported the largest increase in likelihood to document their end-of-life wishes: 39.4% in 2022 said they were likely to discuss or document their wishes, versus only 28% who said so in 2021.
  • On average, only 27.2% of Americans reported that the pandemic has increased their thoughts about planning for death and dying, yet 38.5% of Black Americans reported the pandemic increased their thoughts on planning for death and dying.
  • Black Americans are far more likely (40.3%) to know someone who has died without having made advance care plans, compared to 29.9% of Hispanic, 21.1% of white, and 11.6% of Asian respondents.

• Healthcare professionals (HCPs) continue to be imperative in starting advance care planning conversations. Americans report, however, that HCPs are not raising the issue.
  • After partner/spouse and children, primary care provider was the most common response when asked with whom people would be comfortable having ACP conversations.
  • However, 71.4% of those surveyed say their healthcare professionals have never initiated these important conversations with them, and for most people (54.9%) no one has brought it up.
  • Yet, in many cases, having those conversations leads to concrete action: Of those who have documented advance care plans, 13.2% said their HCP had discussed it with them, and that percentage was higher for Hispanic (24%) and Asian (24.2%) respondents.

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

There is a need for more resources to help clinicians have these crucial conversations, especially with Black and other racially diverse patients.Dr. Martha Dawson, FACHE, president/CEO, National Black Nurses Association

To educate and empower healthcare professionals, such as nurses, nurse practitioners and physicians to have conversations with patients about their end-of-life care, VITAS is launching a preceptorship and certificate program. To be introduced at the upcoming National Black Nurses Association Annual Conference in July, the program includes education modules on a variety of topics, such as prognostication, hospice basics, and how to start the advance care planning conversation sensitively and respectfully with open-ended questions. It also includes practice scenarios where participants can get feedback on actual conversations with patients.

“Clinicians play an important role in starting advanced care planning conversations with patients and families,” says Dr. Martha Dawson, FACHE, President/CEO, National Black Nurses Association. “There is a need for more resources to help clinicians have these crucial conversations, especially with Black and other racially diverse patients and families who often face barriers and poor access to care. Using an approach that empathizes, informs and genuinely seeks to understand a patient’s wishes can assist in creating peace of mind for families and patients. It also eases the burden of healthcare workers when offering emotional support. This new novel, positive approach will ensure equity in advanced care planning for all populations. That is why we are excited for VITAS Healthcare to launch this new national initiative at the 50th Anniversary of NBNA’s Annual Conference where leading clinicians from around the country will be attending.”