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New Report Focuses on Experiences of the Most Seriously Ill

October 17, 2018

A survey conducted for The Commonwealth Fund, the New York Times, and Harvard T.H. Chan School of Public Health provided findings for a report about how those with the most serious illnesses are managing. Being Seriously Ill in America Today focuses on the most seriously ill adults in the country, people who have been hospitalized multiple times and are seeing multiple physicians, related to a serious illness, medical condition, injury, or disability.

The authors suggest that if we are to improve the health care and health insurance systems in the future for those who are seriously ill, we must look more carefully at underlying issues that impact the outcome of their life experiences.

Although about nine in ten seriously ill patients have health insurance coverage, the survey shows that, while most people are financially protected, a substantial minority are not. Close to one-third of respondents have problems paying their hospital bill and for their prescription drugs. A subset report using a considerable amount of their savings as a result of their medical condition, and foregoing basic necessities like food, heat, or housing.

The hospital care experience is very important to the seriously ill. This group expressed concern about hospital staff responsiveness, clarity of information from health professionals; and possible medical errors.

Seriously ill people who responded report that they have had visits with multiple physicians over the recent period of time. About six in ten report having seen five or more doctors over the past three years. For some, this has resulted in getting conflicting information, experiencing long waits for tests and appointments, and duplication of care.

About half of seriously ill patients report having someone designated to coordinate their medical care. Those that have someone playing such a role overwhelmingly feel it was helpful to them.

In addition, respondents addressed other problems such as being denied some type of medicine or treatment they thought they needed because of the type of insurance they had or because they did not have health insurance coverage. One in six say they did not receive a treatment, procedure, or prescription drug they thought they needed because their health plan would not pay for it.

The survey also finds that serious illness has a significant impact on the lives of many, substantially beyond their health care experiences. In the area of job employment, just over half reported being unable to do their job as well as they could before, and almost a third reported that they lost their job or had to change jobs.

Making a case for expanded whole person health care, nearly half report that their illness resulted in emotional or psychological problems for them.

Finally, the survey results spotlight the need for assistance at home, with more than half of the seriously ill respondents saying they needed help at home in order to manage their health condition. A quarter of them could not get the help they required, and nearly a third say there was a time they needed outside help and could not get it due to cost. The survey also explored the impact on the caregivers for the seriously ill, identifying the emotionally and physical stress they experience.

The survey was conducted for The Commonwealth Fund, The New York Times, and Harvard T.H. Chan School of Public Health, via landline and cell phone by SSRS, an independent research company. Interviews were conducted in English and Spanish, July 6 to August 21, 2018, among a nationally representative probability-based sample of 1,495 adults age 18 or older and represent seriously ill adults nationally. The margin of error for the total respondents is +/-3.2 percentage points at the 95 percent confidence level.

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