Serious Illness in Late Life: The Public’s Views and Experiences

The U.S. population is aging, and with that shift comes new challenges in meeting the needs of older adults with serious health needs. This comprehensive, large-scale survey helps illuminate what some of these challenges are and provides insight into the perspectives of the public at large as well as of older adults personally facing serious illness and their family members about how they view care in the U.S., steps they’ve taken to plan for becoming seriously ill in later life, and their current experiences with care and support for those with serious illness. In general, the public is largely aware of some of the issues that arise with serious illness in late life, but many haven’t taken tangible steps to prepare for these issues affecting them personally. Older adults with serious illness report facing a variety of challenges and some say they need help more often than they are getting. In general, most of those with recent experience with serious illness have positive impressions of the care they’re getting, while the public at large has more negative views about how well the U.S. health care system does in providing care for people with serious health needs. Having documents outlining wishes for medical care seems to make some difference in helping family members know what types of care a loved one wants and in having their wishes closely followed. Views of and experiences with these issues vary across age and race/ethnicity, with older people typically being more likely to have taken steps to plan. However, older black adults come behind their Hispanic and white counterparts in having documents describing their wishes. In addition, Hispanics overall are more apt to report financial challenges and uncertainty about late life and serious illness than black and white adults. These findings help identify for policymakers, those who care for older adults, and the public at large, what gaps remain in terms of the care older adults with serious illness are receiving as well as the public’s overall preparedness for their own potential illness, and future surveys can assess how these have changed over time.