Most of us take our health for granted. But when we get sick, our lives can be thrown into limbo. For the seriously ill, life is rarely the same again.
The U.S. health care system leaves many of the sickest Americans feeling helpless, facing serious problems with the care they receive, and struggling to make ends meet. These were the findings of a recent “Health Care in America” survey conducted by the Commonwealth Fund, the New York Times, and the Harvard T.H. Chan School of Public Health.
This week, Shanoor talks to two of the lead researchers about how American adults who visit the doctor and hospital multiple times a year navigate the challenges and costs of using the health care system.
SHANOOR SEERVAI: Most of us take our health for granted, but we all know that when we get sick, our lives can be thrown into limbo. For some people, this limbo can be profound and last a long time. These are seriously ill patients, who are in and out of hospital several times a year or are seeing three or more doctors for life-threatening medical conditions.
I’m Shanoor Seervai, and on this episode of The Dose, we’re discussing a new study conducted by the Commonwealth Fund, the New York Times, and the Harvard T.H. Chan School of Public Health. The researchers surveyed 1,500 adults with serious illness across the country to learn about their experiences with U.S. health care.
Two of the lead authors of the study are joining me today: Robert Blendon, a professor of health policy at the Harvard School of Public Health; and Eric Schneider, a medical doctor and senior vice president for policy and research at the Commonwealth Fund.
Bob, Eric, thanks for being on the show.
ERIC SCHNEIDER: Thanks for having us.
SHANOOR SEERVAI: Bob, to start, tell me how and why you came to focus on the seriously ill?
ROBERT BLENDON: Over 15 years ago, in 2001, I did a survey with the Commonwealth Fund on inequities in health care in five countries, and we had a measure of whether or not you said you were ill, and you were seeing three or more physicians. And it turned out across all five countries, people who were seeing three or more physicians and had experienced at least one hospitalization had more problems in their care than everybody else in those countries. So this study builds on that, to learn more about the problems these seriously ill people face.
SHANOOR SEERVAI: Eric?
ERIC SCHNEIDER: The other thing is that most prior surveys of the quality of care, the problems people encounter in their care, tend to be of the general population — people who are mostly well, but recently visited a clinic or had a hospital stay.
ROBERT BLENDON: Right.
ERIC SCHNEIDER: What was unusual about this survey is that it interviewed people who have a lot more exposure to the delivery system because of complex illnesses.
SHANOOR SEERVAI: And tell me why the experiences of these people are different from the rest of the population, say, for example, someone who goes to hospital to have their appendix out?
ROBERT BLENDON: Because they talk to one doctor and they go home, and they are not taking five prescriptions for a long time.
ERIC SCHNEIDER: Yeah, the expectation is that they are mostly healthy and sort of going along in their everyday life, and they get sick, go to the doctor or the emergency room, maybe have a short hospital stay, but then they are right back to their usual life again. They dealt with the problem and they are well enough that they could deal with whatever challenges they encountered during the visit or the hospital stay.
SHANOOR SEERVAI: And those challenges fade away once they recover.
ERIC SCHNEIDER: Right. The point is that many of them are not terribly overinvested in this health care delivery experience. They got through and probably want to just put it behind them. What is really different about the group we just surveyed, people with serious illness, is that they are now, for better and for worse, committed to interacting with the system at a level that is very unusual for most people.
SHANOOR SEERVAI: So I guess another way to think about this is somebody who goes in for the one-time visit could have a bad experience, somebody else could have a really good experience. And that is going to vary. But somebody who is constantly engaging with the system, their life is dominated by it.
ROBERT BLENDON: Exactly. If you’re seriously ill, your life is derailed by dealing with the delivery system. The dramatic finding here is that you have got people who are using the system over and over again, and one out of three have serious problems paying their hospital bills. And these are people with health insurance.
ERIC SCHNEIDER: And one really important consequence of these bills is that they deter people from getting care, taking their medications, or following up because they can’t afford it.
SHANOOR SEERVAI: How so?
ERIC SCHNEIDER: Once they face a high bill, people quickly get into a defensive posture, fearing the system could bankrupt them. So they avoid it. I mean, from my experience as a physician, this often happens where someone who was afraid of the cost of a visit, a treatment, or a medication just doesn’t come back.
SHANOOR SEERVAI: What do they do?
ERIC SCHNEIDER: They tough it out at home, they hope for the best, and then they land back in the emergency room with some serious health complication that could have been prevented if they had stuck with a follow-up or a medication.
SHANOOR SEERVAI: And you’re saying these are people with insurance, but can’t afford their care regimen?
ROBERT BLENDON: Let me give you an example: One in ten in our survey had prescription bills of over $50,000 a year. In half these cases, the insurance paid for it; in the other half, they didn’t. So they don’t know — and we don’t know — why they got stuck having to pay all of those bills.
ERIC SCHNEIDER: Our survey also picked up problems with care coordination. They show up in many ways. Some doctors don’t know what the other doctors are ordering or doing. Patients experience that lack of communication as duplication of testing, duplication of orders, or medication mix-ups. Another issue is when the doctor prescribes a medication that is not well covered by insurance. The patient who can’t afford it is standing at the pharmacy counter and decides to just skip the prescription. Most patients feel uncomfortable going back to the doctor and saying, “Hey, I can’t afford this medication. Is there an alternative?”
SHANOOR SEERVAI: Well, I imagine patients feel too vulnerable to say that to their doctor. So this is the “cost” of being seriously ill. The medical bills are one terrible aspect of the cost, but then there are all of these other costs that we don’t have ways to quantify. This sort of lack of dignity, feeling, “I don’t want to tell anyone that I can’t afford to pay for this medicine.”
ERIC SCHNEIDER: Yes, and even people who can afford to pay may just eat a higher-than-necessary cost even though there may be a cheaper alternative. These breakdowns in communication lead to people feeling even more vulnerable, unable to question whether this is the best treatment option, a necessary test, or a needed specialist referral. The doctor rarely knows about this financial toxicity unless the patient speaks up. Even when patients do speak up, the doctor may not be prepared to manage it.
SHANOOR SEERVAI: Okay, coming back to financial toxicity: One of the things that really stood out to me in this study is that half your respondents said being seriously ill stopped them from doing their jobs as well as before, and three in ten said they lost their jobs or had to change jobs. What’s going on there?
ROBERT BLENDON: This is a really important finding we surfaced: Most people who are employed are not in places where you can be out on sick leave for weeks or months at a time. What happens is they stop paying you. If you work a minimum-wage job, you get a couple sick days a year.
Our people are in and out of the hospital over a year, and so they likely ran out of their sick days pretty quickly, which means they are not getting a check at home. So you are running out of money because you don’t have an income.
ERIC SCHNEIDER: And, over the past decades, many companies have moved low-wage workers from being employees to being independent contractors. The janitor no longer works for the store. She works for an independent firm. Independent contractors may not have insurance and they don’t have any sick leave. If they are not working, they are not getting paid. And so days off are lost income right off the bat.
SHANOOR SEERVAI: So it is really a double whammy, because you are already poor and probably going to struggle to pay for your care anyway, and then you are not able to work.
ROBERT BLENDON: It’s not just for a problem for poor people. In our survey, middle-income people lost their savings. These people are part of households earning $50,000–$100,000 a year, and they have a certain amount of savings. Then they get sick, then they stop working, and then they’re not getting a check but the bills keep coming.
SHANOOR SEERVAI: Okay, but more than one-third of people you surveyed were above 65 — so they are probably retired, and on Medicare. What about them?
ERIC SCHNEIDER: One of the other surprises here is that people think of Medicare as excellent insurance coverage, covers everything. And it does cover a lot, but for people with serious illness, Medicare may not be enough to protect you from the financial costs of health care.
SHANOOR SEERVAI: But aren’t these people also collecting Social Security?
ROBERT BLENDON: Yes, but Social Security covers their life expenses. It isn’t enough if there are medical bills. We didn’t get into this in our study because we thought that if you have Medicare and Social Security, these bills wouldn’t be such a threat. But in our study, we discovered that they are.
SHANOOR SEERVAI: I know that one of the other issues you surfaced is how these costs have a domino effect on the people who are caring for the seriously ill.
ROBERT BLENDON: For a number of people in our survey — 62 percent, so almost 1,000 — a family member or friend helped them a lot once they got home from the hospital. But a lot of these caregivers experienced problems as a result.
ERIC SCHNEIDER: And then the caregiver who is at home taking care of someone may miss work, may be vulnerable to getting fired, getting downgraded. The Family and Medical Leave Act is really inadequate — it covers unpaid leave for only 12 weeks a year to care for a family member with a serious health condition.
SHANOOR SEERVAI: Well, other countries have more generous family leave policies, but this lies outside what health insurance does or doesn’t cover. It’s a social issue.
ROBERT BLENDON: And people get overwhelmed discussing social determinants of health, but that is the issue. If I can’t continue getting a check from my work, I have a real problem paying for the insurance. If I need help at home and I am relying on somebody caring for me, and that person has another life, they are going to be under stress financially as well as personally. So, yes, these are not health insurance issues, but these are the issues that drive real problems that may lead to ill health for people.
SHANOOR SEERVAI: What are some of the other social issues that determine whether or not people have good health?
ERIC SCHNEIDER: In addition to employment, transportation, housing, and food are at the top of the list. I mean, if you think about what it costs to take a taxi or a ride or whatever, a lot of folks in this situation are basically trying to figure out how to get the bus from wherever they live to where the clinic is located, or the hospital, the emergency room. And they are trying to find people who will give them a ride in the community, friends, family, somebody who can actually give them a ride. And when you think of the psychological tax of just trying to figure out how to get from point A to point B for someone who is sick, who really can’t afford to just jump in a taxi or use an app to call a rideshare service — figuring out this one step just compounds the challenge of serious illness.
SHANOOR SEERVAI: I can’t even imagine trying to figure out the bus while being sick, and then what if the bus is late, so you’re late for your appointment —
ERIC SCHNEIDER: — or have to reschedule, so now you did not get to see the doctor and you have to go back another time —
ROBERT BLENDON: — and let’s just say that buses and wheelchairs aren’t terrific.
ERIC SCHNEIDER: In my own practice, occasionally I used to do home visits just to eliminate all of that, because it was way easier for me to bicycle over to somebody’s house at the beginning or end of the day than for them to go through the arduous task of getting to the clinic.
SHANOOR SEERVAI: All doctors don’t do that.
ERIC SCHNEIDER: Very few doctors do that. The Dutch do that. And they ride bicycles. And truth be told, home visits were only possible in certain situations. I couldn’t do that all over Boston, but I could do it in the neighborhood.
SHANOOR SEERVAI: Okay, getting back to the study: What’s new that you uncovered?
ROBERT BLENDON: Well, we have presented facts about how grim the situation is for people with serious illness with insurance. We surveyed 1,500 people to get to these facts. Prior to this, we had individual stories, and a lot of research focused on the uninsured. The belief has been that once I get insurance, all of my health problems will take care of themselves.
SHANOOR SEERVAI: And that’s not true — even with insurance, you could get stuck with big bills. What can be done about this?
ERIC SCHNEIDER: This goes beyond the survey, but one serious issue that connects to our results is the problem of high American health care prices. We know from other research that one reason insurance coverage is not always adequate is because the health care product is unaffordable. Whether it is drug prices, doctor visits, the emergency room, the hospital, the ambulance, people are having problems paying those bills because those bills are much higher than they need to be.
SHANOOR SEERVAI: It’s not enough to say that people need more comprehensive insurance coverage.
ERIC SCHNEIDER: Exactly. The high prices mean we are chasing our tail. If we create more comprehensive insurance coverage, some people are better off, but the high prices become invisible. When the prices are not visible, hospitals, doctors, drug companies, ambulance companies, raise their prices because they expect the insurance company will pay. Most of the time, the insurance company does pay, but it has to raise premiums and cut benefits. And so this creates a vicious cycle.
ROBERT BLENDON: Which is not to say we don’t need better insurance, because the real shock in our findings was how inadequate insurance can be. So future studies would really have to probe to understand why insured people are struggling with costs. We would need to try to understand something about why the coverage they had had so many holes in it. Was it big deductibles, was it drugs or services that weren’t covered at all — what is the problem with insurance that left you with bills that wiped you out?
SHANOOR SEERVAI: Do you have any thoughts about how to make sure people get health insurance with fewer holes in it?
ROBERT BLENDON: There is a need for some sort of accreditation — that when people buy a policy it will actually protect them. Somebody has to certify that in the future.
ERIC SCHNEIDER: For now, though, we have revealed the magnitude of the problems people with serious illness are facing. Our hope is that by making these problems visible, people and policymakers can act on them.
SHANOOR SEERVAI: Well, we should probably wrap up before we get too optimistic. Thank you both for joining me today. It’s been great to learn more about your study, given how grave the implications are for people with serious illness.
ERIC SCHNEIDER: Yup, really enjoyed it.
ROBERT BLENDON: It’s great that we could raise these issues together.