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

The number of older adults is growing rapidly. The share of adults 65 or older in the U.S. is expected to rise from 14.5 percent of the population in 2014 to 21.7 percent of the population by 2040, and the number of people age 85 or older is expected to triple from 6.2 million in 2014 to 14.6 million in 2040.¹ While medical advances have allowed many older adults to live longer, healthier lives, many are also living with multiple chronic conditions that are likely to lead to a slow deterioration over time.² In the context of these demographic changes and the challenges arising from an older population with serious health needs, the Kaiser Family Foundation (KFF) conducted a large scale nationally representative telephone survey of 2,040 adults, in order to better understand people’s expectations about later life and efforts they’ve taken to plan for the event they become seriously ill. In light of current efforts underway to improve the situations of those with serious illness and prepare for the aging population, this survey will serve as a baseline and we will conduct future surveys to measure how these attitudes and experiences change over time. To learn more about the experiences of those with serious illness, this survey included interviews with 998 adults who are either personally age 65 or older living with a serious illness, or have a family member who is or was before they recently died. Experts consider serious illness to be a health condition that carries a high risk of mortality and either negatively impacts a person’s daily function or quality of life or excessively strains their caregivers. For this survey, those who are seriously ill are older adults who have at least one of several chronic conditions and report functional limitations due to a health or memory problem such as difficulty preparing meals, shopping for groceries, taking medications, getting across a room, eating, dressing, bathing, or using the toilet. This broad definition not only includes older people who are quite ill and in their last few months of life, but also those older people who may be earlier in their disease course who have many months or years yet to live. (For more details on how this survey defines serious illness, see Section 2 and the Methodology). A survey of this magnitude allows for analysis across age, race/ethnicity, health status, income, and other factors that may influence a person’s views and experiences with serious illness. This report summarizes the results from the survey and is organized as follows:

• Section 1 examines the public’s overall views of issues related to serious illness care, people’s perceptions of how the U.S. health care system meets the needs of older adults with serious illness, as well as the public’s awareness of the issues that can arise when someone is facing a serious illness, such as financial problems, access to support services and medical care, and housing issues.
• Section 2 covers the experiences and perspectives of those with experience with serious illness, either personally or with a family member, including the challenges they face, what types of care and support they are receiving and whether their needs are being met.
• Section 3 focuses on the steps the public has taken to plan for serious illness in later life, including the types of documents they may have created and concrete steps they have taken to prepare for aging or save for retirement, as well as the types of conversations that people are having with their loved ones and medical providers about their wishes and desires in the event they become seriously ill.
• Section 4 highlights some of the key areas where views and experiences differ for people who are black, Hispanic or white, although across many measures, their responses are similar.

In addition to the survey, this report also incorporates themes that emerged during focus groups with family members of older adults with serious illness that were conducted in February and March 2017 in Kansas City, MO, and Chattanooga, TN. The survey and focus groups were designed and analyzed by researchers at KFF and paid for by the Gordon and Betty Moore Foundation. For more on how the survey or the focus groups were conducted, see the Methodology section.