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

The number of older Americans 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 2040.¹ 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. 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 if they become seriously ill. 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 specifically, 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. 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 people who are quite ill and in their last few months of life, but also those who may be earlier in their disease course who have many months or years yet to live.

New @KaiserFamFound survey examines the challenges facing Americans with serious illness late in life

The following are some of the key findings from the survey.

The public largely acknowledges some of the issues that can arise with serious illness in late life, but many people report that they have not yet taken steps to plan for if they become seriously ill themselves.

• Americans are generally aware that most people die after a period of worsening health rather than suddenly and think that problems affording medical care and support services are common for people in late life. Many are personally worried about these things affecting them when they are older if they become seriously ill, yet just about a third say they have talked with a family member about how they would pay for help if they became seriously ill and, more broadly, just about half say they are saving for retirement.
• People say a number of different aspects of life are important to them to maintain a good quality of life in older age, including making sure their medical wishes are followed, but more than half say they do not have a document that describes their wishes for care or names a person they would want to make medical decisions on their behalf. In fact, one-third (34 percent) say they have a written document outlining their wishes and four in ten (41 percent) say they have a written document designating someone to make medical decisions on their behalf. Older adults are much more likely than younger adults to say they have these types of documents. Discussions of these issues with family members are reportedly much more common than written documentation. Majorities, including among younger adults, report talking about at least one related issue with a family member, but some specific aspects of planning are discussed less often, such as finances, where someone would prefer to live, or what they would need to have a good quality of life.
• Most say they have not talked with a doctor or health care provider about their wishes, including among older adults and adults that report being in fair or poor health. For those that have written documents, few report sharing them with their doctors or other health care providers, leaving open the potential for uncertainty or confusion about what a person would want if seriously ill, even though they have gone to the effort of documenting their wishes.

Older adults with serious illness report a variety of challenges and some say they need help more often than they are getting.

• Older adults with serious illness and their family members say they face a variety of challenges, from being forgetful (71 percent), feeling depressed (56 percent), and having difficulty understanding medical instructions (48 percent), to having trouble with basic tasks like preparing meals (39 percent). Six in ten older adults with serious illness have someone constantly providing help with everyday tasks. Still, more than four in ten say they need help more often than they are getting, and some report difficulty getting the help needed (27 percent) or forgoing such help due to cost (18 percent).
• Having a loved one facing serious illness can be stressful for family members, and, while many say their personal needs are being met, some say they only sometimes get the help they need managing feelings of anxiety or sadness. Family members report helping their loved one with a variety of tasks, such as transportation (67 percent), everyday activities (57 percent), coordinating care across different doctors or clinics (55 percent), managing finances (43 percent), and medical-nursing tasks (42 percent). Those family members personally providing help are spending quite a bit of time on such tasks, but most of those who report helping with daily activities say they have someone that can give them a break when they need it. However, about one in five family members providing help say there is no one to give them a break, likely increasing the stress involved with caring for a loved one. Just over half of those helping with medical-nursing tasks say they received training from a nurse or other health professional on specific caregiving techniques, but even still, a large majority feel they were at least somewhat well trained to provide care.

For older adults with serious illness, those with documents outlining wishes for care are more likely to say their wishes have been followed and nearly all family members who have referred to these documents say they have been helpful in making decisions about their loved one’s care.

• Most family members of older adults with serious illness report their loved one has a document describing their wishes (60 percent) or a document naming someone to make medical decisions on their behalf (70 percent). Some family members say they have referred to this document and nearly all who have referred to it say it was helpful.
• Writing wishes down and talking about them appears to make a big difference in family members being confident they know what their loved one wants for their medical care. Family members who say their loved one has a written document outlining their wishes are more than twice as likely to say they know exactly what their loved one wants than those without such a document (53 percent versus 23 percent). And, family members who say they talked with their seriously ill loved one about their wishes are more than three times as likely than others to say they knew exactly what their loved one wanted (58 percent vs. 16 percent). In addition, older adults with serious illness and their family members are more likely to say their wishes for medical care are ‘very closely’ followed if they report having a document describing their wishes than if they don’t (70 percent vs. 54 percent).

Overall, much of the public rates the U.S. health care system poorly in terms of the care it provides to older people with serious health needs, but most of those who are currently experiencing serious illness themselves have more positive impressions.

• About half of the public overall (52 percent) rate the U.S. health care system fair or poor on the care it provides older people with serious health needs and 45 percent say there is not enough support available in their community for older people with serious illness.
• However, over half of older adults who themselves are dealing with serious illness say there is enough support available in their community and 60 percent rate the U.S. health care system’s care for seriously ill people as good, very good, or excellent. And, most older adults with serious illness and their family members who get paid help from a nurse or health care aide say the provider is well trained (89 percent) and rate the quality of the care provided as very good or excellent (63 percent).

Older black adults are much less likely than others to report having written documents outlining wishes or designating a health care proxy. People who are Hispanic are more apt to report financial challenges and uncertainty about late life and serious illness than black and white adults.

• Older black adults are much less likely than older people who are white or Hispanic in having written documents outlining wishes or designating someone to make medical decisions on their behalf, even after controlling for other demographic factors associated with having these documents. Just 19 percent of black adults ages 65 or older say they have a document describing their wishes and about a third (35 percent) have a document naming a health care proxy, compared to about half of older Hispanics and more than six in ten older whites who say they have either type of written document.
• Hispanic adults are more likely than white or black adults to report being worried about facing challenges when they are older such as affording medical care or support, housing issues, or leaving debts to their family. Further, about half of Hispanic adults are not confident they will have enough money or assets to last through retirement if they become seriously ill. This worry and lack of confidence carries over into reported actions taken to plan for retirement. Just a third of people who are Hispanic and not yet retired say they are saving for retirement, compared to half of black adults (49 percent) and six in ten white adults (60 percent). And, Hispanics 50 or older are less likely than others to say they have set aside money that could be used to pay for ongoing living assistance expenses. This theme continues among older adults with serious illness. Hispanics who are themselves dealing with serious illness or have a seriously ill family member are more likely to report that it was difficult to get the help they needed with everyday tasks, that they didn’t get needed help due to cost, and that they had trouble affording medications, tests, and treatments.