Allison Dowling knew a career in medicine wasn’t for her. She’d seen firsthand the pain and stress experienced by patients who didn’t have the wherewithal to navigate systemic barriers in health care—problems that often fall outside the jurisdiction of the clinic.
“I grew up the daughter of a registered nurse,” Dowling said. “My mom worked in the emergency room, and she would come home with these stories about patients who were using the ER as primary care because they couldn’t access health insurance and they didn’t have any other options.
“I knew from my mom’s experience that all of these systems were a little bit broken.”
Perhaps law school could provide answers, Dowling thought.
“I signed up for the health law track at the University of Pittsburgh, hoping that would lead me to the right career,” Dowling said. “I had the opportunity to travel to a conference in Chicago, where I heard about this novel idea of a medical-legal partnership. And all the light bulbs went off. This is what I want to do! This makes complete sense!”
Today, Dowling is the director of Georgetown University’s Cancer Legal Assistance & Well-being Project, also known as Cancer LAW, a medical-legal partnership between the university’s medical center, law school, and MedStar Health.
An article about Cancer LAW is available in this issue.
Altogether, there are about 450 MLPs in the U.S., and 21% of healthcare organizations with MLPs screen for health-harming legal needs that are related to cancer, according to a 2016 survey conducted by the National Center for Medical-Legal Partnership. Georgetown’s Cancer LAW is one of a handful of such programs to focus exclusively on cancer.
“Last quarter, we were able to secure almost $200,000 worth of funding for patients in just three months through programs like SNAP benefits, Social Security income, and rent abatement,” Dowling said. “I think the financial outcomes, which are often the easiest to measure, are huge in terms of tangible benefits.
“Then, you also have to consider the intangible benefit of being able to remain in your house, maintain your job, or stay on chemo.”
MLPs are the future for healthcare institutions and academic cancer centers, Dowling said.
“Our future lawyers and our future doctors should be exposed to this because they’re really going to be the change makers that can tell their leadership, their administration, ‘Look, this needs to happen. When I was in law school, when I was in med school, I learned about this,’” Dowling said.
“A medical-legal partnership allows lawyers to work directly with medical providers to improve health outcomes and in an academic MLP, students also get to experience these lessons first-hand,” Dowling said.
“And most importantly, patients have their legal needs met.”
Dowling spoke with Matthew Ong, senior editor of The Cancer Letter.
Matthew Ong: Thank you for speaking with me, Allison. What drew you to law school, and what brought you to DC?
Allison Dowling: I’m originally from a small, rural town in northwestern Pennsylvania, but I’ve lived and worked in DC for 10 years, so DC is now home. I graduated college in the middle of a recession in 2010, and I didn’t really know what I wanted to do but kept thinking about a college internship I had with a health insurance company.
As an intern, I had the unglamorous job of writing denial letters for long-term disability applicants and beneficiaries. These were people who were trying to obtain or renew long-term disability coverage, and I had to let them know the review team at the company had determined that they were not eligible.
My job was to use my communications degree to put together a nice little letter saying, “We’re really sorry, but our team determined you are not eligible for benefits for X, Y, and Z reasons.” Eventually, I was also tasked with talking to these folks over the phone when they would call, often angry and upset they had been denied.
Source: Cancer LAW
One call in particular really stuck with me; it was a woman, and she was in tears, telling me all of the things that were going to go wrong if we stopped her money. She was going to lose her house. She wasn’t going to be able to pay for her medication. She had a whole laundry list of how she relied on this money. And I felt really bad and was trying to gather what had gone wrong. She had been approved in the past, why was she getting denied now?
When I opened up her file, all I saw were dental records. And I said, I only see dental records and your dentist is saying everything looks fine. And she said, very indignantly, “Well, I have all of the heart conditions. Did you not listen to those doctors?” She hadn’t submitted anything from anybody other than a dentist. And I said, why did you not talk to a primary care physician?
Well, it turned out she had lost her health insurance. And so, it was this trickle-down effect. Without health insurance, she lost access to health care, which ultimately cost her the disability income. She took the form to the dentist because it was the only appointment she had coming up. To her credit, the paperwork said, “A doctor needs to fill this out.” It didn’t say what kind of doctor, but of course, the dentist couldn’t really opine about her disabling heart condition.
I kept that case pinned to my desk and checked in periodically because I told her how to appeal. I gave her the straightforward language, and luckily she followed through. She was able to find an attorney at a legal aid organization who helped her. And I remember being really glad, but I felt like my hands were tied.
I couldn’t really help her appeal it because I was on the other side of the discussion. And then, I think I realized, too, the insurance companies are also at a disadvantage. They didn’t have the ability to get her into a medical appointment to see what was really going on.
And it’s not necessarily the incentive for insurance companies to do that; right?
AD: No, it’s not the incentive, nor do they have the capacity.
So, that was really frustrating and enlightening to me. And I thought, “How could I do something with this?” I grew up the daughter of a registered nurse. My mom worked in the emergency room, and she would come home with these stories about patients who were using the ER as primary care because they couldn’t access health insurance and they didn’t have any other options.
And it turned out that coming into the ER in the middle of the night was actually the lowest wait time in my rural area.
So, folks would come into the ER in the middle of the night even when they had a cold. Insured folks would wait until regular business hours to go to a primary care provider, but without insurance you are left with fewer options. And I knew from my mom’s experience that all of these systems were a little bit broken.
I think I had that in the back of my head—how can I be adjacent to medicine? I knew practicing medicine was not for me. But I wanted to work in that sphere. And so I went to law school, still not really sure how I was going to mold medicine and law together, but I signed up for the health law track at the University of Pittsburgh, hoping that would lead me to the right career.
I had the opportunity to travel to a conference in Chicago, where I heard about this novel idea of a medical-legal partnership. And all the light bulbs went off. This is what I want to do! This makes complete sense! I came back and researched medical-legal partnerships in my area, and what I needed to do to get hired by one of them.
That really started my journey to working in medical-legal partnerships. I graduated law school and I had a one-year fellowship with an organization that provided representation to low-income individuals on healthcare matters.
It was not a formal medical-legal partnership, but we did work very closely with a lot of different institutions across the entire state of Pennsylvania.
Was this based in Pittsburgh?
AD: Yes. I worked at the Pennsylvania Health Law Project, and loved what I was doing. I interned there while I was in law school and stayed on for a year after graduation.
That fellowship ended, and I had the opportunity to move to DC and work at Whitman-Walker Health, which was kind of the pinnacle because it’s one of the oldest medical-legal partnerships in the country.
There, I gained extensive institutional knowledge about medical-legal partnerships and the trials and tribulations of a partnership. While in that role, I was lucky enough to connect with Vicki [Girard] and start the Cancer LAW project.
On a personal note, Vicki initially contacted me about the project six weeks after I lost my mom to cancer. So, the timing felt right that this was some kind of bigger sign of how I could help others going through what is often the most difficult days of their lives.
When did you start at Georgetown? Was this a few years after Vicki started the Health Justice Alliance?
AD: I started here in January of 2020. Vicki started the Health Justice Alliance in 2016, and then the Cancer LAW Project officially started in 2019, in the sense that there was funding and foundational research happening. The Health Justice Alliance team did a needs assessment and chatted with other MLPs, and that was all before my time.
You’ve been here for four years now. What was your vision as you started out shaping Cancer LAW, in a programmatic sense? What were your guiding posts?
AD: I think the beauty of a medical-legal partnership is that no two are going to look the same. You’re going to have different partners and different stakeholders. I had experience on medical-legal partnerships, but working on an academic medical-legal partnership was new. So, that was a whole new realm for me to consider, and it was a dynamic that I knew was going to be exciting to add to my career.
So, I began thinking about how to incorporate students, not only law students, but also medical students and even Georgetown undergraduates who are interested in health justice. As an academic MLP, we have researchers to help us really evaluate and assess the work we are doing.
How do we capture some of the impact that we were having on these patients—to share not only with our stakeholders, but with the broader community to demonstrate that this intervention model is worthwhile? How do we help students launch their careers in MLP or establish MLPs where they practice?
And I think it’s working—our two medical students Francisca [Finkel] and Ruben [Castro], after their rotation with Cancer LAW said, “Every medical student and every institution should consider a medical-legal partnership.”
I think incorporating students into the MLP model has been the most exciting piece of launching the Cancer LAW project.
I also have relied heavily on my prior experience working with patients living with HIV and the LGBTQ+ community because there are a lot of similarities between the trajectory of cancer care and the trajectory of HIV care.
Traditionally, when we were at the height of the HIV epidemic, a lot of the legal services were strictly focused on end of life.
Now, that’s not the case. The same is true with cancer. Survivorship is not only the goal, but it’s the reality for tons of patients, which is really exciting.
You get to live a normal life.
AD: You live a normal life. We used to hear a cancer diagnosis and think it was a death sentence. And now, that’s not the case. We have long-term chronic case management with cancer, just like we do with HIV. And a lot of those legal issues that pop up are really similar across patient populations.
We have patients that are discriminated against by their housing provider, that face job discrimination. They’re struggling with, “How do I fit it all into the day? How do I fit in my cancer treatment? How do I fit in my chemo?”
All of those things that become part of their new normal can be really difficult when we live in a society that doesn’t necessarily accommodate those needs.
You’ve done studies and used measurable endpoints to demonstrate that this helps patients, improves their well-being, lowers stress, etc. What does it take to do this work?
AD: One of the things that we, as an academic medical-legal partnership, have available to us are resources that we recognize that other legal service providers, and other medical-legal partnerships may not have at their disposal.
So, that includes a research component.
We have the human capital to help us measure the impact that we’re having on our patients. And so, we do our best to do that. We’re measuring the impact on our patients. We look at the legal outcomes. We are beginning to look at the health outcomes for patients who get legal services. We also look at the outcomes that this type of training has on our law and medical students.
We are looking at our next frontier, looking at the impact that a medical-legal partnership can have on medical providers. Can we help them feel more fully trained to do what they need to do to provide holistic patient care?
There are some studies out there that suggest that when providers have access to these partnerships they have higher job satisfaction and less burnout. So, that’s something that we would love to look at in the future once our program’s more established.
Do you have hard numbers you’d like to share that say, for example, “Over X amount of time, we have achieved Y,” whether it’s legal outcomes or health outcomes?
AD: I think one of the things to highlight is the outcomes that we’re sharing, whether in our quarterly dashboards on our website or in this article, are done by a very small team.
On staff, the Cancer LAW Project has two attorneys and one legal fellow.
Last quarter, we were able to secure almost $200,000 worth of funding for patients in just three months through programs like SNAP benefits, Social Security income, and rent abatement. I think the financial outcomes, which are often the easiest to measure, are huge in terms of tangible benefits.
Then, you also have to consider the intangible benefit of being able to remain in your house, maintain your job, or stay on chemo.
Those are things that I think medical-legal partnerships continue to struggle to quantify because it is hard to create a nice little chart identifying all of the potential legal pitfalls that were avoided.
The trickle-down effect that we are stopping by meeting unmet legal needs is hard to demonstrate and measure. For example, when we help that person get their Social Security benefit, our hope and our goal is that with the additional income we are preventing a future non-payment of rent eviction case.
We theorize that our patients are better able to adhere to their treatment regimens because they have coverage and the financial resources to afford medications and the time needed to do so.
We also hope that in helping patients maintain employment, we allow them to keep their car registered and their driver’s license up to date so they can drive to their medical appointments and afford the healthy foods they need to thrive.
And unfortunately, all of those issues that I just named are cases where Cancer LAW intervened because our current safety nets do not prevent crises from happening.
It would be great to have studies that can quantify the cost savings downstream and the trickle-down effects, drawing from, for example, research on the impact of screening and early diagnosis on treatment costs or years of life saved.
AD: There’s been some preliminary research. Some other medical-legal partnerships have looked at—especially in the context of emergency room visits—preventative services, including legal services, what impact does that have on emergency room usage?
One of the things that we’re always curious about, too, and it’s a big practice area, is advanced planning, which can include advanced healthcare planning, and wills and estates and testaments.
It’s something that, for good reason, is not tracked carefully because the patient makes a full recovery and lives for many more years.
But they still have these documents in place for when they are needed. For example, we’ve helped folks do a transfer-on-death deed so that their home doesn’t go to probate. If a house goes to probate it can be garnished by debt collectors.
In DC, we’re lucky that we have a transfer-on-death deed process, but you have to know about it. If you have the savvy to file the paperwork correctly, you can have it set up to transfer automatically.
So, upon your loved one’s death, the home transfers to whomever that person has chosen. And it avoids probate, which can not only save tons of money, but also helps preserve generational wealth.
We’ve helped patients with these documents. And if you’re looking at these communities, especially in Northeast, and Southeast DC, somebody may have bought their home in the 1990s for $50,000, it very easily is worth 10 times that today.
We want to make sure that wealth, and more importantly the family home, stays with the family.
This is a rhetorical question at this point, but why should cancer centers and university health systems be investing in this? And perhaps more directly, why do doctors need you?
AD: I think it’s a novel concept to include lawyers as part of the care team, but it makes sense once you consider how complex our medical and legal systems are in this country.
We know that social drivers impact health outcomes and we understand that health-harming legal needs are, unfortunately, a major issue for vulnerable patient populations. When folks ask me why we don’t have more MLPs, I think it really comes down to not fully understanding the medical-legal partnership and its benefit to patients, providers, and the community.
When I explain it to providers, I describe it as just one more person on the patient’s care team. We already have a whole circle of expertise helping this patient, and it doesn’t make sense to not include a lawyer on that team, given how complex and complicated the world is that we live in.
And in this healthcare system.
AD: In this healthcare system. And so, that’s really what it comes down to. You would never consider pitching an oncology team that doesn’t have a pharmacist. You would never consider an oncology team without a surgeon.
We will eventually reach the point where you would never consider a medical institution that doesn’t have lawyers for its patients because meeting their legal needs is just one component of the patient’s care plan.
How are physicians limited in their capacity to influence outcomes outside the clinic that may, at the end of the day, really reduce the amount of time that a patient has, despite receiving standard of care?
AD: I can cite the classic story of the asthma patient, and it applies to the cancer patient, too. If you have somebody who is living with, let’s say, any kind of lung condition—whether it’s cancer, asthma, maybe both of those things—the oncologist prescribes chemotherapy to address the cancer.
The pulmonologist prescribes inhalers and asthma medications.
But those things don’t fully address the problem. If the patient is living in an apartment that’s infested with mold, or infested with rodents, or worse, you’re only putting a tiny bandaid on a hemorrhaging wound.
And so, by having an attorney who’s able to come in and actually solve the housing piece of the puzzle, you’re giving the patient and the provider the opportunity to have a real impact on that health outcome. If you take away those things that are maybe exacerbating the cancer or the asthma, you’re giving the patient an opportunity to heal and to be well that otherwise medicine can’t solve.
Medicine can’t solve a rat-infested apartment. It can’t solve the black mold in an apartment. It can’t solve asbestos or lead issues. But a lawyer can.
And medicine cannot prevent an eviction, when a cancer patient needs a home to recuperate in.
AD: Exactly. There are a lot of pieces to the puzzle.
I always tell my patients that I can’t take away the thing that they want me to get rid of most: cancer. Just like a physician can’t solve the housing problem, which is often at the top of the list of things that patients want solved.
If a patient’s eviction case takes priority they may not make it to their medical appointment. And a doctor can’t treat a patient if they aren’t in the office, right?
If there are other outside factors impacting the person’s ability to get to their appointment, to access their medications, to access their health insurance, a doctor can’t do her job; right? And so, quite simply, if you don’t have an attorney, you run the risk of having the patient drop off.
And once the patient is gone, the best doctor in the world can’t make a difference.
And we know from studies on the unhoused that having a home is the primary determinant of not only chronic disease outcomes, but also mortality.
AD: Yes. From talking with our patients, I have learned that cancer is not high on their list of problems in their life.
Whereas I think with a more affluent population, if someone gets diagnosed with cancer, that’s at the top of their list of what they’re dealing with for the next six months, for the next year—for however long it takes to battle the disease.
Because survival is not the problem in that context; right? Surviving cancer is the problem.
AD: Yes. With our patients, we often hear, “Well, I’m going to have to cancel that appointment because I have too much going on,” and it doesn’t become a top priority. I think there’s often a misconception that, “Oh, there’s a lack of education. Patients must not understand how severe their cancer is or how important this is.”
And I think that’s minimizing the issue, and disrespectful to cancer patients.
I think the patients understand what is going on. What the systems don’t understand are all the other variables that a patient has going on in their life.
It is completely reasonable that cancer falls down on the priority list when you also have an eviction case, when you’re fighting your kids’ school to try to get them the educational support that they need, when life gets in the way.
And so, we see that most of those things that are taking priority tend to be legal needs.
In real-world administration of healthcare facilities, justifying any new program could well involve the question of, “How much can this save us?” Are there tangible cost-saving benefits to a hospital or a cancer center from having an MLP?
AD: Yes. There definitely are direct tangible savings of having a medical-legal partnership.
First and foremost, if a patient doesn’t have insurance, they can’t get care, including screenings and early diagnosis. The earlier we intervene, the more quickly we treat, the better the outcome.
We’re able to do more effective medicine in a shorter amount of time for less money, which is amazing for the patient, and it’s good for the healthcare system. So, it’s a win-win, no brainer. But early detection and treatment relies on a patient having coverage.
And if you have a patient who has been erroneously terminated from public health insurance or from their employer-based coverage, or has been denied the prior authorization for treatment, there will be delays, which quite possibly translate into additional expenses—whether it’s because you have more treatment because of those delays, or you have to do a more expensive alternative because of those delays.
With some cancer treatments, if you go off of your treatment regimen, that treatment regimen may no longer be effective because your body took a break from it and it shouldn’t have. And so, you’ve lost the opportunity to use that medication and have it work. Having continuity of coverage is a tangible benefit to the hospital in cost savings down the road.
Secondly, if you have patients that have stable housing and have stable income to maintain their housing, we know that patients are more likely to be treatment adherent, which again, over the long run results in better health for our patients and less cost to the healthcare system.
When patients have a network of people who are working with them, they’re more likely to better engage with their treatment plan and their providers, and less likely to have to rely on emergency services and other expensive means.
Also, patients who don’t have sufficient coverage, when they use the ER, are likely to generate more costs than they can pay. And the hospital may have to absorb those costs, too.
AD: That’s an excellent point. Emergency departments are amazing, but they were not created to treat chronic long term conditions like cancer. And because of the busy, hectic nature of an emergency department, it can be challenging to make sure a patient’s wishes are fully respected when someone needs to get care during an emergency.
The Cancer LAW helps folks name a healthcare proxy, but it can be challenging if a person is older and lives independently and they may not have anyone involved in their life in a formal relationship.
If something happens where they lose their ability to make decisions on their own, that’s a very expensive and time-sensitive problem for the healthcare system. Often, if that happens, a hospital ethics board must review the case, which takes time and money, and then if necessary may have to seek guardianship for that individual through the courts.
Our medical student, Francisca, saw this challenge play out during one of her clinical rotations. The hospital was calling anyone they could think of trying to locate a friend or family member for an unresponsive patient, eventually finding someone hundreds of miles away.
They considered themselves lucky to be able to find someone, but that’s not always the outcome.
So, not only is that guardian or executor making healthcare decisions, but would they also have authority over the patient’s estate or assets?
AD: We often refer to the person making healthcare decisions as the healthcare proxy, healthcare agent, or the healthcare power of attorney.
This is different than a financial power of attorney or the estate executor—those people are named in a different type of document. A person may name the same person to be both, which is usually what happens.
If there are other outside factors impacting the person’s ability to get to their appointment, to access their medications, to access their health insurance, a doctor can’t do her job; right? And so, quite simply, if you don’t have an attorney, you run the risk of having the patient drop off. And once the patient is gone, the best doctor in the world can’t make a difference.
One of the goals of the Cancer LAW Project is to help every patient create an advance directive naming the person they want to make decisions for them if they cannot do so themselves. We hope to educate folks that regardless of your cancer diagnosis, cancer staging, or prognosis—every adult over the age of 18 should have an advance directive in place.
We try to explain it simply. A healthcare agent can be helpful well before someone’s nearing the end of life. We like to use an example, such as “Matt has a really bad sore throat today and he can’t talk at all.”
Because he has an appointed healthcare agent, the healthcare agent and the medical team are allowed to talk in effort to figure out how to best help Matt, be it scheduling appointments, requesting medications, etc.
This saves healthcare systems time and money. We work with our medical partners to make sure advance directive documents are uploaded into the medical record.
With our patients, treatment itself can give people chemo brain and give them a lot of brain fogginess, and sometimes they don’t make sense.
They lose capacity—even if it is temporary. In these moments, providers have to act quickly to determine who to turn to; in one particular case, they immediately found a fully executed advance directive in the medical record.
It was done by the Cancer LAW Project. The medical team was excited to learn this, because they knew exactly what to do and who to call, and they didn’t have to go to their ethics board to figure out the next step. From the patient perspective, it is reassuring that you have selected someone who will help you versus a total stranger making decisions for you.
There is an interesting equity concern, too, with our work. Advanced planning is done more commonly by white people and by people with higher socioeconomic status.
When we look at the reports of how “satisfied” people are with their family members’ death—as in, did it go how they thought the person wanted it to—we know that people of color report more distress and a sentiment that their family members’ wishes were not followed.
One theory is that it’s because healthcare systems lack these documents explaining what patients want done at the end of life. And so, often, end-of-life care becomes very expensive.
What we have learned is that patients with advance directives are more likely to end up in palliative and hospice care versus hospitals.
The flipside being there’s no plan for the patient.
AD: Right. And the hospital is going to default to, we have to do everything we possibly can.
Or do the minimum we can with the limited resources we have.
AD: Exactly.
If you have patients coming in who do not have insurance, would having an MLP help with advising the hospital that these patients don’t have to be turned away? Or if the patients can’t pay for services, can the MLP help them figure out coverage?
AD: Yes. One of the things, too, that I think folks don’t necessarily think about is when you have cancer treatment, often your whole life is shaken up. Perhaps you have to stop working. For some this will be a temporary leave, others they may decide to retire permanently. Others may be forced out.
So, while you have this traumatic medical diagnosis happening, you may also have a lot of employment changes too. And both your employment and your health care are tied to your health insurance in America.
People have a lot of changes happening because of their cancer, and then they may have a lot of changes happening with their health insurance because of their age, employment status, or income status.
If you are not 100% on top of it, and even if you are, you’re ripe to have problems such as gaps in coverage or things that don’t work as seamlessly as you would have hoped, even if on paper they should have worked just fine.
And while that might not be a big deal for the average retiree, it’s a huge deal when you’re in the middle of cancer treatment. If you don’t have a safety net to back you up, it can be devastating.
Or familiarity with the healthcare system. Or literacy. As an immigrant, I think I get it.
AD: Yes. I mean, I don’t know anyone who fully understands the health insurance system. That’s just the reality.
Even we in the health insurance world are constantly looking things up. It’s not something that comes easily. Folks who have years of knowledge and expertise can’t always give clear answers because it’s so complicated.
Did we miss anything?
AD: We believe that medical-legal partnership is the way of the future. It just makes sense that we should be teaching this to the upcoming generation of lawyers.
Our future lawyers and our future doctors should be exposed to this because they’re really going to be the change makers that can tell their leadership, their administration, “Look, this needs to happen. When I was in law school, when I was in med school, I learned about this, and I want to work for a medical-legal partnership.”
I’ve heard from medical partners I work with and former medical students that folks are asking in job interviews, “Do you know what a medical-legal partnership is? Do you have a medical-legal partnership?” It’s really exciting to see the interest catching on.
Like I said, we wouldn’t have a doctor’s office that didn’t believe in nurses or pharmacists. And so thinking about this as just one more care team member is really the way of the future. A medical-legal partnership allows lawyers to work directly with medical providers to improve health outcomes and in an academic MLP, students also get to experience these lessons first-hand. And most importantly, patients have their legal needs met.
I’m proud to work at Cancer LAW and be a part of the academic MLP model. I work with a phenomenal team of health justice advocates, from the medical partners who are quite literally saving lives, to our legal team going to court with our patients, to the brilliant minds dedicated to scholarship.
The interprofessional collaboration is really the magic of an academic institution.
