Poll: Despite pandemic, less than half of older adults have formally recorded what they want if they get seriously ill

As the toll of COVID-19 continues to climb, newly released poll data suggest an opportunity to use the pandemic as a prompt for discussing and documenting older adults’ wishes for their care, if they get seriously ill or injured for any reason. 

Overall, 59% of the 50- to 80-year-olds polled said they had had a conversation with loved ones about their preferences in case they became severely ill. That percentage was even higher -- 70% -- among those over age 65. Just 7% of all older adults polled said COVID-19 had motivated them to have such conversations. 

When it came to documenting their preferences in a legally binding way that can guide families and care teams, 46% of those polled said they had completed at least one of two legal documents that could help their loved ones make decisions for them if they can’t do it for themselves. The poll asked about medical durable powers of attorney, and advance directives, often called “living wills.”

Among the 7% of older adults who had completed one or both of these forms in the early months of the pandemic, one-third said COVID-19 had motivated them to do so. But this was a very small percentage – just 1% -- of the entire poll sample. 

The new findings come from the National Poll on Healthy Aging, based at the University of Michigan’s Institute for Healthcare Policy and Innovation. The poll receives support from AARP and Michigan Medicine, and draws from the answers of a national sample of more than 2,000 adults aged 50 to 80. 

The poll data released today were gathered in June 2020, when the higher risk of severe illness and death among older adults who developed COVID-19 was already well known.
 
“Our study adds to growing body of scholarly research that supports the need for more effective, innovative, and targeted approaches to ensure increased completion of advance care planning among all older adults. The fact that so few of the respondents cited COVID-19 as motivation to have these critical conversations and update or complete their advance directives is concerning,” says Chithra R. Perumalswami, M.D., M.Sc. a research felllow at the U-M Center for Bioethics and Social Sciences in Medicine who worked with the poll team on the new report.

“It can be difficult for patients, families and providers to navigate these conversations in the hospital setting, especially when visitor restriction policies are in place to reduce the spread of COVID-19,” she says. “It is incredibly helpful to have advance care planning completed before a person becomes seriously ill and potentially unable to communicate their preferences.”

The role of health providers 

Perumalswami studies end-of-life care and decision-making, and is trained in internal medicine and palliative care. She worked on the poll with neurologists and IHPI members James F. Burke, M.D., M.S. and Lesli E. Skolarus, M.D., M.S. They co-lead a study of the use of advance care planning coverage under Medicare, and how it relates to older adults’ health outcomes.

“Health care professionals can use the COVID-19 pandemic as a starting point for discussing advance care planning with older adults, and policymakers may want to look for opportunities to encourage more discussions within families and between patients and providers,” says poll director Preeti Malani, M.D., a Michigan Medicine infectious disease physician also trained in geriatrics. 

She notes that of those who had completed at least one form, 15% said they had done it because they had had a hospitalization or operation, or a concern related to their own health, and 8% said a member of their health care team had suggested it. 

A difficult topic

The new poll confirms past research finding that just bringing up the topic of end-of-life care and medical decisionmaking is uncomfortable or hard to broach for older adults. Nearly a quarter (23%) of the poll respondents who hadn’t yet had a conversation about their wishes said they don’t like talking about such things, and 56% said they hadn’t gotten around to it. 

Among those who hadn’t completed at least one of the two legal forms, 13% said they do not like talking about such things, and 15% said they didn’t know how. But 62% said they just hadn’t gotten around to it. 

The poll also finds that a sizable percentage of adults may need more information about why it’s important for everyone to have at least discussed their wishes with a loved one, even if they haven’t signed a form to authorize someone to make medical decisions for them, or laid out their general preferences in advance. One in five older of those who hadn’t had a conversation said they didn’t think it was necessary.

“This research confirms that many people are uncomfortable talking about severe illness and death, yet it’s important to have those discussions and document your wishes for medical treatment,” says Alison Bryant, Ph.D., senior vice president of research for AARP. “Many organizations, including AARP, offer resources to help start a conversation with your loved ones and complete the correct paperwork for your state.” 

Helpful resources

For older adults covered by Medicare, a discussion of advance care planning is covered as part of their annual Wellness visit. The National Institute on Aging offers information about advance care planning, and Michigan Medicine offers a free guide and forms in several languages.  

The federal government’s Eldercare Locator service can connect older adults and their families with their state’s assistance programs for health care proxy and advance directives by visiting their website or calling 1-800-677-1116. 

AARP offers links to each state’s and territory’s advance directives forms on its site. 

The National Poll on Healthy Aging results are based on responses from a nationally representative sample of 2,074 adults aged 50 to 80 who answered a wide range of questions online in June 2020. Questions were written, and data interpreted and compiled, by the IHPI team. Laptops and Internet access were provided to poll respondents who did not already have them. A full report of the findings and methodology is available at www.healthyagingpoll.org, along with past National Poll on Healthy Aging reports.