“The challenge is to treat people where they are and make sure each everyone gets the best care.”
Anish Agarwal, MD, MPH, MS
The National Clinician Scholars Program at University of Pennsylvania trains clinicians as change agents. Through the program they aim to drive policy-relevant research and partnerships to improve health and health care. Below we interviewed four of the scholars about the importance of cost of care conversations.
I really embrace the chaos of the emergency room–the day to day, minute to minute urgency of the care we provide, the fact that you really never know what you will see next. At Penn and its affiliate Presbyterian Hospital, we see the full range of patients. In one room, there may be a patient with great health coverage and the ability to text their primary care physician and right next door, there could someone who has no access to or has never seen a primary care physician. The challenge is to treat people where they are and make sure everyone gets the right care.
Since the ACA, the overall number of uninsured people seeking care in ERs has decreased slightly, but the complexity of care has gone up. More and more, we see individuals who are anxious about money, about what their care is going to cost. There are a lot of clear-cut decisions in emergency medicine –if you are having a heart attack or stroke, we need to evaluate and treat quickly. Minutes matter. It is hard to worry in that time frame about cost when someone is critically ill.
But there are also a lot of gray areas and those are the times when the conversations with patients are important. I try to be patient-centered and explain what I am recommending, what I think we should do, here’s the risk of not doing it, and if the patient says I can’t do that, or I can’t afford it, then we have to look for other options–options that are safe. It has to be safe. People make decisions for a lot of competing reasons and sometimes those are because they are worried about the bills. I think you have to respect that and realize that it is part of the equation. I try to make safe plans that work for people and arrange follow up. I tell my patients, if things aren’t getting better or are getting worse and you can’t see your doctor. Our doors are always open.
It’s tough though. I try to work with patients to come up with a treatment plan, but there are a lot of factors in play. How much support do they have, what else is going on in their life? For me, the biggest challenges aren’t in helping victims of a car accident or treating someone with a blood stream infection. It’s trying to figure out how to get it right for the grandma who wants to go home and take care of herself when you and her family know she isn’t safe anymore. Or how can I get someone struggling with substance abuse into the right treatment program so he or she isn’t back here the next day, or ODs. The ER is where you see the real-life component to patient care.
Children’s Hospital of Philadelphia
As a black man, I have always been very aware that my life outcomes could be very different. It’s given me a passion for health equity. I want to put my finger on the scale to help people — help kids — achieve their potential. I want to study how health systems work or don’t work for those communities and augment these systems. I want to train the next generation of providers to improve those systems.
The disparities I care about the most are not always the most glaring. They can be more subtle and more frustrating. It’s not enough to order the inhaler for the kid with asthma, and then deal with all the hospitalizations and cost of that disease. We have to dive deeper and think about what in his environment is at the root of the problem. You have to think beyond just symptom management, which can be the tip of the iceberg, and get to what’s happening in these communities, the traumas they face, the social determinants that drive health issues.
I never got training in how to discuss cost of care with our patients. It’s still not a part of the core curriculum for many residents, but I think it’s on us as providers to have these conversations. It’s not easy. We are all reluctant to screen for something when we don’t have the answers or know what the resources are to address the problem. The most effective interventions often occur when they are built into the system, when they are standardized parts of the patient discussion or the EMR. For example, in my clinic, we now ask everyone about food insecurity, two questions that prompt whether a person is ever concerned about not having enough food to feed the family. And we do have resources that can help.
The most important thing is creating a safe space for people to tell you about their financial concerns. As physicians, we are often driven by what our patients tell us, but if the patients don’t feel like they can talk about an issue, we are never going to get that moral pull to make changes. That safe space often depends on having a longitudinal relationship with the patient and family, but that’s not always possible.
People, especially if they are uninsured or on Medicaid often do worry that they are getting a lower level of care. They feel vulnerable. They don’t want to get into their financial concerns. The more expensive care is not always the best, but perceptions are hard to change. This a very granular, personal issue. I have mothers say to me, ‘I want the best for my child. I don’t care what it costs. Don’t hold back on me.’ They’re checking me when they are most worried and concerned.
It’s up to us to decrease these barriers. We need to view everyone as an individual and hear their stories. We need to build non-judgmental relationships, so that we have more open, honest conversations. Everyone has pride. Everyone wants to hold on to their humanity.
I am a first generation American. My parents came here and moved to Allentown, Pennsylvania to take advantage of the manufacturing jobs that were available. When those jobs largely disappeared, we as a family experienced what it means not to have health insurance, to deal with the brunt of uncovered medical costs. My mother has diabetes. When I was in high school, I saw firsthand her struggles to afford her insulin. This experience helped me realized there is more to being a doctor than taking good care of your patients, that you cannot exist in a vacuum. You have to deal with the real-world issues that people face, and that has informed my career.
My clinical interest is in cardiology and my research interests center around the costs of care and their impact on access to care. For example, once a person has a heart attack, they need to take certain drugs to reduce their risk of having a second cardiac event. For years, we had one drug, a blood thinner, that worked pretty well. That drug is now generic and quite inexpensive. But in recent years, next generation drugs have come onto the market. They have been shown to be more effective in clinical trials–but they are also expensive.
When I talk to patients about which drug is best for them, I have to bear in mind the cost issue. It might be better to take the older drug that you can afford than the newer one that you cannot. And there is evidence that patients often don’t fill a prescription for a drug they cannot afford, even when they really need it. Copays today are much higher, which affects adherence, which affects outcomes–and that’s a problem. The impact is worse for people with low socioeconomic status, so that we risk creating or exacerbating health care disparities with potentially better drugs. It’s a terrible feeling to write a prescription for a necessary medication, and then worry that the patient will not fill it if they can’t afford it.
How do you talk about these issues with patients? It’s not that easy. There’s a very significant lack of transparency at the point when care is actually delivered. We are often as much in the dark as the patient about what a specific person will pay for a treatment or what they can afford. I don’t want to profile people or make treatment recommendations based on assumptions about what I think they can pay. It’s not the drug price that matters to patients, but what they have to pay.
Today, a lot of people have insurance plans with really high deductibles. They often don’t understand the limitations of their coverage until the bills arrive. Both patients and their doctors need better information up front, so we can have these conversations and make better decisions, based on the best treatment option and what the patient can afford.
I’ve lived and breathed public health all my life. My father is a primary care physician who worked with the Indian Health Service, first in rural New Mexico and then in Northern Michigan. My mother is a nurse who has worked in almost every setting – from hospitals, schools, to homes. Our dinner conversations were filled with their experiences on the frontline. As a kid I heard over and over again how people like my parents were limited by our healthcare system to serve patients who were struggling the most. I wanted to help change that system.
I grew up thinking I would be a physician, but in college I did an externship at the CDC and was paired with a nurse epidemiologist. She showed me how nurses can use their clinical expertise to not only improve the health of individuals, but also the health of our nation through policy and research. After that I went back and changed my major to nursing. Now over a decade later I’m a nurse PhD with my own experiences in providing care.
I’m interested in finding ways to improve coordination during patient transitions in care. As a bedside nurse I experienced the importance of coordinating care when preparing patients to leave the hospital. Poor communication and confusion regarding a patient’s care plan could cause major gaps in care, costly delays, potential harm. Yet this happens every day across the country because of the way our healthcare system is structured. It’s failing patients and their providers.
Improving care coordination is essential to provide safer and more effective care. I can’t believe we live in an age of email and facetime, and still rely on cumbersome medical records that can’t easily be accessed in different settings. But then again, there are few incentives for organizations to work together and care for patients. A good place to start is by identifying meaningful measures for care coordination and designing interoperable healthcare records. We need to ensure that providers are communicating patients’ care plans, values, and needs across settings.
Healthcare is facing a lot of other big challenges, like how can we deliver care is accessible, high quality, and cost effective? I’m particularly interested in rural communities. We know that rural regions tend to be older, sicker and poorer, with fewer providers. Many small-towns are struggling financially and hospitals are closing. Options for care are severely limited, and we need to start getting creative.
Nursing plays a critical role in all these areas. Nurses are the largest, most trusted healthcare profession. Our work touches every part of the community – schools, workplaces, hospitals, homes, churches, prisons, labs, long term care, and other spaces. Nurses have expert clinical expertise and honed skills that place us in an excellent position to improve health and the delivery of care – if others are willing to listen.
It’s tricky to know where the future will take us. We must continue to ask a lot of hard questions about how we provide health care, who delivers that care, in what setting it occurs, and how will we pay for it. To start unraveling these complex issues, we have to be able to define and measure quality. Value based care will fail if cannot measure quality, especially quality of nursing care. We have to be able to think of health care more fully, episodically, not procedure by procedure. We have to focus on the full team and understand the roles each person plays, and how information is shared among team members. I’m not sure we are culturally ready for this kind of change, but I’m hopeful.