For Seriously Ill in US, Suffering Goes Beyond the Illness

Megan Brooks

October 17, 2018

Adults who develop a serious illness or medical condition in the United States not only struggle with their disease but often feel confused and helpless, experience problems with their care, and face the risk of financial ruin, according to a survey released today by the Commonwealth Fund, the Harvard T. H. Chan School of Public Health, and the New York Times.

"The goal of this survey partnership is to open a window into what it's like for our sickest family members, friends, and neighbors," Commonwealth Fund President David Blumenthal, MD, said in a news release.

"In my years as a practicing physician, I walked into many a patient's room to find that, on top of managing their illness, they were overwhelmed by administrative red tape, worried about their health insurance, and fearful of what their treatment would cost," said Blumenthal.

With ongoing changes in the healthcare and health insurance systems in the United States, the question emerges as to how those with the most serious illnesses are faring, the authors note. This survey is relatively unique, they say, in that it explores how the healthcare system in the United States is working for the most seriously ill adults, namely, people who have been hospitalized multiple times and are seeing multiple physicians regarding a serious illness, medical condition, injury, or disability.

The survey was conducted by an independent research company from July 6 to August 21, 2018, and included 1495 adults aged 18 years or older with illnesses such as heart disease, cancer, diabetes, or stroke. Most (91%) had health insurance coverage.

Overall, more than half (56%) of those surveyed reported having difficulty paying one or more of their healthcare bills, and 27% said their illness had put a major financial strain on their family. Among those with health insurance, 31% had trouble paying hospital bills, and 27% had trouble affording their medicine. More than a third (37%) of those surveyed said they had used up most or all their savings, and 23% could not pay for necessities such as food, heat, or housing.

"For many of these individuals, the problem is not that they have no health insurance coverage but that their coverage is inadequate to deal with a serious illness," the authors note.

"What is not recognized is that many insured seriously ill people have health insurance that does not protect them from large, uncovered medical bills," Robert J. Blendon, ScD, professor of health policy and political analysis at Harvard T. H. Chan School of Public Health and codirector of the survey, added in the news release.

Emotionally Taxing

Most seriously ill patients said they had not received cost-of-care information from their physician. More than two thirds (69%) reported that their physician had not discussed the cost and charges of their care with them.

About 6 in 10 seriously ill adults reported a problem with their care, such as a duplicate test or conflicting recommendations from providers. Nearly 1 in 4 (23%) experienced a medical error during their treatment, and 31% had difficulty understanding what their insurance covered.

Serious illness affects more than just physical health, the survey shows. Of seriously ill adults, 73% reported one or more disruptions to their lives, including being unable to do their job, and nearly half (48%) reported suffering emotional or psychological problems. Nearly two thirds (62%) said there was a time when they felt anxious, confused, or helpless about their health situation.

In an overview report, the Commonwealth Fund's Eric Schneider, MD, and colleagues offer three recommendations for improving the healthcare system: prioritize patients' and caregivers' behavioral health and social service needs; make it easier for patients and caregivers to talk to their providers; and make healthcare more affordable.

"We need a health care system that is there for you when you get sick and that helps you and your family through what is likely one of the worst times in your life. That means knowing what patients need, designing a health care system that gives that to them, and assuring folks can afford it," Schneider said in the news release.

The full report is available online.

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