When a homeless person gets discharged from hospital, he needs a safe place to recover. When a poor patient faces a high co-pay for a medicine she needs, she is often too embarrassed to tell her doctor – instead, she may not fill the prescription.
Doctors don’t typically try to solve these social problems, but some want to do better at understanding patients’ lived experiences. In this episode of The Dose, Ishani Ganguli and Janine Knudsen, both primary care providers at innovative clinics, talk to Shanoor Seervai about how they are trying to treat a patient as a whole person, rather than focusing on a single medical condition. They discuss the successes and challenges of caring for patients in their daily practice in light of the findings of a recent survey of people living with serious illness in the United States.
JANINE KNUDSEN: One of my patients was street homeless, suffering from severe alcohol addiction and not taking care of himself. Then he developed really terrible wounds in his legs. It’s hard for anyone to take care of wounds, to have nursing visits or do your own wound changes — and obtaining wound supplies is confusing, even to me as a physician.
So this patient ended up in the hospital completely debilitated and unfortunately, had to get one of his legs amputated because of how bad his wounds were. And then he did get better, but was stuck in the hospital for months while they tried to figure out a safe way to get him to a place where he could get the care he needed. At that point, he was also facing cognitive impairment from the heavy drinking that he’d been doing.
SHANOOR SEERVAI: So you’re saying he didn’t need to be in the hospital, but he was there because he didn’t have a safe place to recover?
JANINE KNUDSEN: Yes, and in the end he’s lucky because he was able to get connected to one of the amazing NGOs in New York City that provides supportive housing units for people who are unable to take care of themselves and would not do well in the shelter system. So now he’s in one of those housing units. And he has on-site nursing care. He has physical therapists that come to his bedside. He has a case manager that takes him to all his appointments. It’s really wonderful.
SHANOOR SEERVAI: So now he has a safe place to stay, but what about his leg?
JANINE KNUDSEN: We’ve been able to send one of our clinic nurses out to do wound care for him. And I’m handling his mental health and other conditions. But it’s only with this massive team of people — that’s like six people helping this guy — that we have really been able to get things under control. And I know he’s an extreme example, but that’s what it takes to keep someone with serious illness safe and well.
SHANOOR SEERVAI: Hi everyone, welcome to The Dose. You just heard from Janine Knudsen, a primary care physician, about one of her patients at a new complex care clinic at Bellevue Hospital Center in New York. Bellevue is one of the country’s largest safety-net hospitals, which means they serve all patients, even those who cannot pay for care or don’t have insurance.
Janine, thanks for joining me.
JANINE KNUDSEN: Thanks for having me.
SHANOOR SEERVAI: We also have Ishani Ganguli with us. Ishani practices medicine at an advanced primary care clinic at Brigham and Women’s Hospital in Boston.
ISHANI GANGULI: It’s great to be here.
SHANOOR SEERVAI: I invited Ishani and Janine on the show today because they’re both doctors trying to change the typical experience patients have with the health care system, which can often be stressful and bewildering. Ishani is also a researcher at Harvard Medical School and worked with colleagues at the Harvard School of Public Health, the Commonwealth Fund, and the New York Times on a survey about being seriously ill in America. I interviewed two of the other researchers, Eric Schneider and Bob Blendon, on episode seven of The Dose — if you didn’t catch it, go back and give it a listen. Eric and Bob talked about the experiences of people with serious illness — people who are seeing multiple doctors and going in and out of hospital. One of the things Bob told me is, “If you’re seriously ill, your life is derailed by dealing with the delivery system.”
Now, Janine and Ishani work at hospitals that do not accept this status quo. These are exceptional places, which are trying to carve out more time to treat patients holistically, address the social factors fueling poor health, and encourage behavior change. Rather than just focusing on medical conditions, this approach treats a patient as a whole person, and perhaps the most important benefit is that people are more likely to recover and stay healthy. Janine just described how a team of experts in health care, housing, and social services got together to care for one patient. Janine, how’s he doing?
JANINE KNUDSEN: He’s doing really well now. And he actually brought me a painting last appointment that he’d made at an art therapy class he’s doing. Every time I see him, I get the sense that he’s doing really well.
SHANOOR SEERVAI: But would you say this is the norm?
JANINE KNUDSEN: No, not at all. I think he’s my biggest success story. And it took such a massive amount of manpower and thought and planning to get him better. And I wish all my patients could have what he had.
SHANOOR SEERVAI: So this makes me wonder, why is this model—which is obviously successful — not more mainstream? Why is it something so specific happening at this one clinic in New York, and maybe a handful of others?
JANINE KNUDSEN: Yeah, it’s hard to say. The simplest answer that I usually boil it down to is that the payment structure is not set up in a way that incentivizes this kind of team-based care. So finding a way to get money to pay for extra care coordination staff and nurses that are able to go out into the community, I mean that’s not traditionally paid for in primary care even if it’s what patients need. Ishani, you may have some thoughts on this.
ISHANI GANGULI: That’s really well said. So health care has always been about delivering medical services. This broader notion of health care addressing social needs is a relatively new concept. Part of this is because when you look at the United States versus other countries, we don’t do as much to address social needs, like education or housing. And so the health care system has sort of been reactive to problems introduced by a lack of other public services.
SHANOOR SEERVAI: You’re not the first person who has talked about this on the show. I had Amanda Brewster, a professor from UC Berkeley, on a few weeks ago. And her research shows that it’s not enough to say, “Oh, there’s a partnership between a hospital and housing agency” — what really matters is how health and social care organizations work together.
ISHANI GANGULI: We’re starting to catch up with some programs, like you describe. But the challenge is still that in the majority of health care settings, you know, there’s a payment issue — it’s expensive to provide coordinated care, and the resources or incentives aren’t always there.
SHANOOR SEERVAI: So we need a change in what is classified as “health care spending” on one hand, and “social spending” on the other, and maybe they are not as separate as people previously thought.
ISHANI GANGULI: Yes, exactly. Another thing to consider is that physicians — and I’ll put myself in this category —are just beginning to recognize in patients the importance of social determinants of health. We’re just starting to ask those questions, like, “Do you have a safe place to recover?” But then, what do you do about it when the patient says, “No, I don’t know where I’m going to sleep tomorrow night”? And so even if doctors are thinking about this, which we’re starting to see more of, there’s a fear of asking because you don’t have anything to offer in return. So that’s really the challenge now.
SHANOOR SEERVAI: And if you don’t have anything to offer, the burden falls on the patient. In the survey the Commonwealth Fund did with Harvard and the New York Times on people with serious illness, nearly one-quarter of the people responding to the survey said they were unable to pay for basic necessities like food, heat, or housing.
JANINE KNUDSEN: Yes, it’s a vicious cycle and doctors don’t often know where to start to break it. But that’s where social workers and community organizations come in that have decades of experience working on these issues. In our case, the medical director of our new clinic has spent countless hours networking with homeless prevention organizations to figure out how to help our patients. And traditionally spending that time networking with the community is not something that physicians or other medical providers have been doing. Trying to break down those barriers is key, but it’s very intensive work.
SHANOOR SEERVAI: And Ishani, what are you doing about this?
ISHANI GANGULI: So at our clinic we have an intake form, a paper form, which asks questions about issues like housing instability and domestic violence. And then if patients screen positive for any of those, we have a social worker within our team and a community resource specialist and we can do a warm handoff to that person, like, “Here’s Deborah, she’s a friend and trusted colleague.” And so that’s been huge in empowering me to be able to start to ask those questions, but then know I have a team member who really has the expertise to help the patient.
SHANOOR SEERVAI: So obviously one organization that can foot the bill for all this social support is the hospital, but one of the other things that came up in the survey is that being seriously ill presents a whole host of financial problems for the patient. More than one-third of the survey respondents used up most or all of their savings. And the same number — so roughly 500 people who are seriously ill — said they have trouble understanding what their insurance covers. How are your patients dealing with cost, Janine?
JANINE KNUDSEN: This is something I worry about so much. There’s been a number of times when I’ve sent my patient to the pharmacy to get a medication, and they can’t pay the $30 copay and they end up going without it because they don’t know who to talk to about that dilemma. And another situation is where I write a prescription that needs a prior auth, but I don’t find out until the patient’s back in my clinic room three months later, and they haven’t been taking the medication the entire time.
SHANOOR SEERVAI: What’s prior auth?
JANINE KNUDSEN: When the insurance company requires the medical provider to make the case for medical necessity for that medication before they cover it.
SHANOOR SEERVAI: Wow, so unless you do that, the patient has to fit the bill themselves?
JANINE KNUDSEN: Exactly, and it can be a laborious process. Prior auths are the bane of many primary care doctors’ work. The dream would be to give every patient a financial advisor they can talk to when cost issues get in the way of their care — these services exist, but there are so many barriers. Right now the way that I handle it is to be open with my patients about cost. I bring it up in advance so that it’s hopefully something they don’t have to be embarrassed about. Before I send a new prescription I’ll say, “If you go to the pharmacy and the copay is more than $10, I need to know because I’d like to help you.” I try to destigmatize it for people.
ISHANI GANGULI: Another way to do that is to admit that we ourselves are really confused by this, I’m sure you would agree, Janine. I find this incredibly confusing myself. So, in addition to what we can do as physicians, there’s a much bigger role technology can play to support these efforts. Our electronic health record may tell us, sometimes, if a certain medication is covered by the patient’s insurance. Ideally, we could see the exact out-of-pocket cost of the drug and of reasonable alternatives.
SHANOOR SEERVAI: Sounds like a big help. What about the problem of being sent for duplicate tests? This was something that around one-third of the seriously ill people we surveyed said was an issue they dealt with. Are electronic health records helping here?
ISHANI GANGULI: Yes, absolutely — that’s where they should be performing best, but there are some challenges. Using these records, we can now see years of data, across our health system and in some cases other systems as well. As a physician, I can sort of sift through, but it’s challenging to be able to find what I need when I need it. And you know, with the 15 minutes I have with a patient and five other things to discuss, I’d rather not be staring at the chart. We need better ways to organize electronic health records, and tools that sit on top of them, in a way that aligns with how clinicians think and work.
SHANOOR SEERVAI: What you’re saying is that at the moment, we don’t have a streamlined way for physicians to know whether they are ordering a test that the patient just had?
ISHANI GANGULI: Yes, it’s not straightforward, and it’s particularly hard for a population that’s seriously ill since they’re interacting with the health system so much. One solution is patients using personalized health records and a way for patients to be able to see information about their own health. I find that my patients are often the best resource to try to sort this out, but it’s not fair to put this burden on them. In the best scenario, they’re going to be able to be advocates for themselves. And the survey really sheds light on this: it’s a totally surmountable issue if we use technology better.
JANINE KNUDSEN: I completely agree. I mean I think the potential for technological solutions is huge and lots of really smart people are working on this issue of interoperability.
SHANOOR SEERVAI: In health care, interoperability means that a patient’s records can easily be transferred between clinics, doctors, and hospitals.
JANINE KNUDSEN: Right. The question is, why hasn’t it happened yet? Everyone wants it. And I think that just shows that the barriers are huge. And the amount of information in the electronic health record is overwhelming, there are so many different ones throughout the country. And physicians don’t have the time. If I have 20 to 30 minutes with a patient, it takes me another hour or two to get all their outside records, sift through everything that happened during their hospital stay, and then formulate my plan.
SHANOOR SEERVAI: Janine, the first time we spoke, I remember you saying that you have “home access” for your electronic health record and that makes a world of a difference. Can you talk more about this?
JANINE KNUDSEN: Home access is a blessing and a curse. It lets me leave clinic on time, but then I spend my evenings and weekends reviewing patient charts from home. And this overtime is unsustainable, but that’s what it takes to coordinate care for a very complicated ill person. Our clinic schedules are usually not set up to support that. The beauty of the complex care clinic that I’m in is that I get extra time with my patients. And I have extra staff available to help pull away some tasks that I don’t need to be doing. So in this new set up, I have a lot more time with the patient, and am able to do the things that I would normally be doing.
ISHANI GANGULI: That makes so much sense. Janine’s clinic, and the other successful models around the country, are the ones that respect the intensive work it takes the providers to coordinate care for complex patients, and then gives them the support and the time to do that work.
SHANOOR SEERVAI: Can you think of situations in which you haven’t had enough time, Ishani? Because we had about a fifth of the respondents say a doctor was not responsive to their needs, or that they left the doctor’s office without getting important questions answered.
ISHANI GANGULI: Absolutely, this happens way too often. There are two pieces to this. One is just the sheer lack of minutes with a patient. The other is when there’s a clear difference in agenda. Like, as the clinician, there are some things I’m thinking about, you know, like the patient’s due for their colonoscopy. But the patient has their own set of questions. And probably the most successful encounter is to find some way to address both. But that requires some navigating.
SHANOOR SEERVAI: So what actually happens in reality?
ISHANI GANGULI: Yeah, so I had a patient a couple weeks ago. She was somebody who usually sees another doctor, but her doctor was away. So we spent 45 minutes speaking for a visit that was slotted for 20 minutes. And it became clear that she had high blood pressure, and she mentioned offhand that she was having chest pains. So my mind is going towards making sure that that’s not something serious. Her priority was to discuss other concerns, like her lingering cold symptoms and arthritis. Meanwhile, I’m worrying about keeping my next patient waiting.
SHANOOR SEERVAI: That sounds like a really hard situation.
ISHANI GANGULI: Yeah, and it’s not easy for the patient, either.
SHANOOR SEERVAI: Janine, do you also find yourself in this situation?
JANINE KNUDSEN: Yeah, my stories are identical. I’ve definitely tried to get better at making patients feel heard. I don’t have a perfect solution, but I’ve been trying to ask more questions less specific to a medical condition and more specific to their lived experience. So asking patients, you know, “How has this affected your life?” or “What are you the most worried about?” I mean, we’re taught to do this in medical school, it’s not rocket science. But so often I feel like there is no time to do what I know I need to be doing.
SHANOOR SEERVAI: There are obviously a lot of things you have to learn in medical school, so how much do you really learn when it comes to asking these “life” questions?
JANINE KNUDSEN: Not enough at all. We learned, I would say, half of what I’m using now. But an example of something I didn’t learn to talk about is how much care is going to cost for patients. And that is not prioritized in our curriculum. Or how to coordinate care for someone with a lot of complex issues. And so we don’t learn how to talk to patients about this.
ISHANI GANGULI: I totally agree. I think the bottom line is how much people’s habits or their context impacts their health. We begin to learn the vocabulary for this in medical school, but it’s easy to lose unless you continue to practice it.
SHANOOR SEERVAI: And you’re both obviously practicing it, so what are one of the things you’ve learned through your day-to-day practice about how to deal with this?
ISHANI GANGULI: So one of the things we have to be clear about is that we’re not going to solve everything in one visit, and acknowledge the limits of health care and medicine. But how do you make sure the patient gets what they actually want out of that encounter? I think one thing that I’ve learned to do is to ask, “Is this a situation where the symptom is really bothering you and you know you want to get rid of it? Or is your priority to understand why it’s happening? Or both?” That then guides how we talk about the issue.
SHANOOR SEERVAI: I want to shift gears a little bit and ask you about one last big issue: the people who care for their seriously ill family or friends. One in three people we surveyed said their caregiver experienced emotional stress, and one in four said their caregiver faced physical strain, including not taking care of their own health. Do you see these issues in your practice?
ISHANI GANGULI: For sure. So I have a number of patients who are caregivers coming to me as primary care patients with their own needs. One woman in her 60s who was coming in for recurring chest pains and was meaning to make an appointment for months but she has a sick child in the hospital and really has not had time to think about anything but her daughter. And was sharing with me all the challenges she’s faced in trying to just be an advocate for her daughter and be heard by the teams in the hospitals. And how she felt like she was not really being heard.
SHANOOR SEERVAI: And you say this comes up with many patients.
ISHANI GANGULI: All the time. Half our visit is spent talking about how stretched the patient is, how she — they’re almost always women — make their own health secondary because they’re looking after someone else.
SHANOOR SEERVAI: Why do you think it’s always women?
ISHANI GANGULI: In our society, women have traditionally played these roles as caregivers — this is what we call unpaid labor. Things are starting to change, but the vast majority of our unpaid caregivers are women, according to the studies we’ve seen.
SHANOOR SEERVAI: Janine, is this your experience as well?
JANINE KNUDSEN: Yeah, in terms of finding overwhelmed caregivers everywhere I look. I have one patient whose story has really stuck with me: a women in her 50s with a sad case of early onset dementia. Her son is at his wits’ end trying to get her to her appointments, take her medications, and not wander off when she’s alone. He’s had to take time off work and move her into his apartment. He’s completely overwhelmed. It took me months to find the right resources to help him and his mom, and now I’ve finally connected him to our local Alzheimer’s Foundation. It still won’t be enough to get his life back to normal, but it’s a start.
SHANOOR SEERVAI: I guess it’s little changes like this that chip away at the problem and could hopefully lead to something bigger.
JANINE KNUDSEN: Yes. I think it’s important to have hope that all the little things that we do will help our patients. So Ishani and I are trying to do a better job of listening to our patients with serious illness and their caregivers. And we’re fortunate that this is a priority at the hospitals where we practice.
ISHANI GANGULI: Then there’s the research piece. The more we can shed light on the experiences and struggles of real people, rather than assuming that we as a health system know exactly what to do, the more we will come up with truly effective, patient-centered solutions.
SHANOOR SEERVAI: And, to bring it back full circle, do you think the survey gets at this, Janine?
JANINE KNUDSEN: Absolutely. The results should make us — and really, all medical providers — question why we’ve ended up with a system that is so difficult to navigate and unsupportive of our sickest and most vulnerable patients, and it should make us question where we should go from here.
SHANOOR SEERVAI: Thank you both for joining me today. I know your schedules are incredibly demanding, so I am very, very grateful for your time.
ISHANI GANGULI: Thank you for having us. This was a great discussion.
JANINE KNUDSEN: Really a pleasure, thanks.
SHANOOR SEERVAI: Before we sign off, Ishani and David Blumenthal published an op-ed in the Washington Post about caregivers. It’s a really great read, and you can find that on our show page, thedose.show/episode15. That’s it for today. Thanks for listening.
Illustration by Rose Wong