For Seriously Ill Patients, the American Healthcare System Adds to the Burden of Disease

The Commonwealth Fund, together with The New York Times and the Harvard T.H. Chan School of Public Health, has published a new paper on the experiences of Americans with serious illnesses. The report, “Being Seriously Ill in America Today,” found that the healthcare system adds to patients’ burden of illness, and paying for care can be financially challenging or even ruinous for millions of patients.

The researchers conducted a telephone interview in English and Spanish among a nationally representative sample of 1495 adults during the summer of 2018. Seriously ill patients (or if they were unavailable to be interviewed, a close family member), defined as those patients who have had an illness or condition that required multiple hospital visits and visits to multiple physicians, were asked detailed questions about their healthcare experience.

Among the key findings of the report is that having health insurance was not necessarily a defense against steep costs for medical care. While 91% of seriously ill patients had health insurance, more than one-third (34%) reported serious problems paying for their prescription drugs; 57% were taking 5 or more prescriptions, and 11% were taking at least 1 drug that costs more than $50,000 per year.

Understanding what was covered by insurance was also a challenge; 31% of patients had difficulty understanding what coverage their plan provided, and 47% had received a bill for doctors or services related to their last hospitalization that were not fully covered.

Beyond the costs they shouldered from their hospitalizations, patients also experienced other problems with their medical care; 22% reported hospital staff being unresponsive to their needs and 14% reported a serious medical error made during their most recent hospitalization. Less than one-half (49%) were asked about their personal preferences in the event of a critical situation. Only 49% reported having had a care coordinator to help organize their treatment.

Patients also reported substantial barriers to accessing care; 26% had been denied a medication or treatment because of their insurance type or status, and patients whose households had incomes of less than $25,000 per year were twice as likely as those with higher incomes to have been denied treatment for this reason.

Financial stress from paying for medical care also impacted other areas of patients’ lives, with 37% reporting that they had used up all or most of their savings, 23% reporting that they were unable to pay for basic needs (like heat and food), and 4% having declared bankruptcy. Younger patients, aged 18 to 64 years, were more likely than patients 65 years or older to experience these problems.

Beyond the impact of healthcare costs on patients, serious illness also negatively impacts other key areas of patients’ well-being. Nearly half (48%) of patients reported that their illness caused emotional or psychological problems for them, and 23% said that they felt isolated. Another 62% reported anxiety, confusion, and a feeling of helplessness about their health.

The need to receive care at home also has significant impacts on patients and their families; 53% of seriously ill patients needed help at home, and 25% reported that they cannot get the help that they need. Family and friends helped 62% of respondents, but 36% said that helping had created problems—such as emotional or physical stress—for family and friends.

According to the report’s authors, “the survey shows that if we are to improve the health care and health insurance systems in the future for those who are seriously ill, we have to look more carefully at a set of less visible issues that really impact the outcome of their life experiences when seriously ill. Often the broad discussions about health reform miss these critical issues that importantly impact those with a serious illness.”

The Commonwealth Fund identifies 4 key strategies to provide better care while respecting the dignity of individual patients with serious illnesses: building the capacity to identify and manage the behavioral health needs of patients and caregivers; assessing and addressing social service needs; easing the process for patients and their care team to work in coordination with one another; and making care more affordable through initiatives such as universal health insurance coverage, guaranteeing coverage of pre-existing conditions, and keeping out-of-pocket costs for patients low.