Listening to People with Serious Illness
These are just a few of the many voices of people with serious illness. They express the bewilderment and the loss of control. They convey fear that the system is indifferent to their needs and that the cost of care is beyond their reach. They reflect the joy of feeling well enough to get back to the familiar parts of life.
Most Americans expect the health care system will deliver effective treatment and support them through trying times when they get sick. But in reality, health care in America sometimes hurts even as it helps. Appointments can be difficult to get. Clinics and emergency rooms are often overcrowded. Doctors’ recommendations can be confusing and difficult to follow. And when the bills arrive, the costs can be unexpected and devastating. More than 40 million adults in the United States experienced serious illness in the past three years. More than 41 million provided unpaid care to elderly adults during the past year.
Health Care in America: The Experience of People with Serious Illness, a project of the Harvard T.H. Chan School of Public Health, the New York Times, and the Commonwealth Fund, is examining the experiences of Americans with serious illness — the sickest of the sick — and those who help care for them. Our goal is to understand whether our health care system is doing all it can do not just to treat illness but to help people cope with illness. Where is the system failing to meet people’s needs? How is it adding to already heavy burdens? Can the most seriously ill Americans afford the care our health system delivers?
To help answer these and other questions, we surveyed nearly 1,500 Americans with serious illness and the friends or family members caring for them. We considered someone to have serious illness if, within the past three years, they had two or more hospital stays and visits with three or more doctors. Below we discuss what we found. We then point to opportunities to help ensure that American health care not only saves people but also supports them in their time of need.
Serious Illness: A Life-Altering Journey
People going through serious illness often experience profound loss: loss of control, loss of independence, loss of time, and the loss of capabilities that most of us take for granted. The physical, emotional, and financial toll can be life-altering. It can mean an end to the activities that give life pleasure; growing isolation from friends, family, and familiar places; and an inability to work or support others. And there is the worry of being a burden on family and friends.
People with serious illness experience distress over and above the physical symptoms of their specific condition. And our new survey reveals that many are distressed. Sixty-two percent feel anxious, confused, or helpless at some point. Nearly half have emotional or psychological problems. Social isolation, a known risk factor for worse health outcomes, is common, with one-third of respondents reporting feeling left out, lacking in companionship, or isolated from others.
Many people with serious illness want to continue working or continue to provide care for family and friends who need their help, but they face high hurdles. Nearly three of four have had problems related to work or their ability to care for others (Appendix 1). Half reported being unable to do their job as well as they could before. Twenty-nine percent lost a job or had to change jobs. Half reported wanting to work but being unable to do so.
Our Health Care System Often Adds to the Burden of Illness
It’s fair to say that several consequences of serious illness — the distress, isolation, confusion, and lost earnings — are simply part of being sick. In some cases, they are probably inevitable. But being sick in America also means carrying some burdens that our health care system foists upon us.
Americans have high expectations for their health care. Most believe that when serious illness strikes, their health professionals will be fully prepared to make a diagnosis and provide appropriate treatment. This belief is not wholly unwarranted, of course. News stories brim with pioneering medical advances. For people with what were once fatal and untreatable diseases, there are now cures. Once harrowing chemotherapy regimens have been replaced by pills taken once a day. New technologies are improving the quality of life for many people with serious disabilities.
A health care system that promises so much would seem capable of minimizing the burdens of illness and care, of helping people cope. But for too many, American health care does the opposite: it places unexpected and unnecessary burdens on the sick. People struggle to obtain effective treatments and services. Pervasive fragmentation and lack of coordination across the health system make obtaining services heavy labor for people with advanced illnesses or frailty.
How common are such problems for this vulnerable group? In our survey, six of 10 people with serious illness reported at least one problem receiving care (Appendix 2). The difficulties people reported are symptomatic of the confusing patchwork that is health care in the United States. Nearly a third of those with serious illness spoke of trouble understanding what their health insurance covered. Twenty-nine percent reported being sent for duplicate tests or diagnostic procedures by different doctors, nurses, or other health care workers. Twenty-three percent of respondents said they experienced a problem with conflicting recommendations from the health professionals that saw them. One of five had difficulty understanding a doctor’s bill — a confusion not just about the costs of care but about what services were provided.
Unnecessary tests and procedures are not only redundant and costly. They carry their own risks to health. Safety in health care is, in fact, an ongoing challenge, especially for patients requiring complex care plans. Nearly one of four adults in our survey reported a serious medical error in their care. We know from other studies that people with serious illness are especially prone to diagnostic errors, prescribing errors, and communication mishaps. Every doctor and many patients can recall missed abnormal lab results, failure to account for allergies, and lost information that led to terrible side effects, or even death.
Paying for Care: Teetering on the Edge of Financial Ruin
Health care can be extraordinarily expensive for anyone, but especially so for people with serious illness. Millions of Americans are ruined financially by the costs of their treatment. Although most survey respondents reported having insurance coverage, nearly one in 10 were uninsured. Even with coverage, many are not adequately protected from health care costs. More than half of people with serious illness in our survey (representing more than 21 million people) experienced one or more dire financial consequences related to their care (Appendix 3).
Apart from its sometimes lasting health consequences, serious illness also appears to cause long-term financial problems for many. More than one-third of survey respondents used up most or all of their savings. Nearly one-quarter were unable to pay for basic necessities like food, heat, or housing. Nearly a third were contacted by a collection agency for unpaid bills. And the financial consequences are not felt by patients alone. More than one in four survey respondents reported that the costs of care placed a major burden on their family.
What Can Be Done to Improve the Experience of the Seriously Ill?
The burdens described above are not an inevitable companion to serious illness. They are a consequence — at times inadvertent, but no less real — of how our health system operates today. But things could be different. It is fully within our means as a nation to improve the experience of the millions of Americans living with serious illness and the millions more who help care for them.
In fact, strategies for delivering a better health care experience — one that ensures comprehensive, holistic care while always respecting the dignity of the individual — already exist. They just need to be adopted on a much wider scale.
- Build the capacity to identify and manage the behavioral health needs of patients and their caregivers. Integrating behavioral health services into medical care requires more than simply improving communication among siloed professionals. Multidisciplinary care teams that include behaviorists, social workers, and patients working together can ease the sense of helplessness, the loss, and the social isolation that seriously ill people commonly experience.
- Assess and address social service needs. Our findings illustrate that the impact of serious illness extends well beyond the medical realm. Many people cannot work while dealing with a life-threatening condition. This means fewer resources at a time when expenses can increase dramatically. Access to and support for reliable transportation, supportive housing, nutritious meals, and other services are critical to helping the seriously ill maintain a level of well-being.
- Make it easier for patients, caregivers, and professionals to work in close coordination with one another. Patients want their clinicians and other providers to talk to each other — and they want in on the conversation, too. Providers can improve communication with each other, with patients, and with caregiving family members and friends by taking full advantage of advances in consumer-friendly digital tools like secure texting, email, telehealth, and social media platforms. Coordination could be further enhanced by care managers or community health workers who check in on patients and caregivers between appointments and connect them to needed services.
- Make care more affordable. Universal health insurance coverage is a fundamental protection against the cost of unexpected illness. It not only guards against the threat of financial ruin but minimizes the costs incurred by everyone else when sick people who are uninsured (or underinsured) show up in emergency rooms or hospitals, which by law must treat everyone in need of care. Guaranteed coverage of preexisting conditions is especially important to those who have experienced serious illness and would otherwise be denied coverage by insurers. Keeping out-of-pocket costs like copayments and coinsurance reasonable not only prevents bills from going unpaid but makes it easier for patients to stick with their preventive care regimen, avoid repeated emergency room visits and hospitalizations, and maintain progress in their treatment.
Americans have high expectations for their health system. They spend more than the citizens of any other country with the hope that the right care will be there for them when serious illness strikes. But along with the treatments and services that can improve life for the seriously ill come an unwanted and unnecessary set of physical, emotional, and financial burdens. These burdens result from the choices made by policymakers, practitioners, payers, and others. Listening to the voices of people with serious illness, reckoning with the human costs of our current system, and lifting the burdens that health care places on us when we become sick may be the most important work health care can undertake.