Patient-Centered Care, with Meg Gaines, JD, LLM

July 19, 2018
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This podcast features an interview with Martha “Meg” Gaines, Distinguished Clinical Professor of Law at the University of Wisconsin-Madison and Director of the Center for Patient Partnerships. She shares her personal experience with cancer and explains how it led her to advocate for others with cancer and found the Center for Patient Partnerships. She also discusses patient-centered care, and shares tips for patient advocates.



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This podcast features an interview with Martha “Meg” Gaines, Distinguished Clinical Professor of Law at the University of Wisconsin-Madison and Director of the Center for Patient Partnerships. She shares her personal experience with cancer and explains how it led her to advocate for others with cancer and found the Center for Patient Partnerships. She also discusses patient-centered care, and shares tips for patient advocates.

ASCO would like to thank Ms. Gaines for discussing these topics.

Monika Sharda: So to start out, if you could provide a brief introduction for our listeners, and maybe talk a little bit about your experience with cancer.

Meg Gaines: Yeah. In 1994, when I was 38 years old, I used to drive by cancer conferences and say, "Well, at least I'm never going to get that," because nobody in my rather large family had ever been diagnosed with cancer of any kind. I went to my regular annual gynecologic check-up, and my gynecologist palpated my ovary, and felt like there was something in it, or on it. She said, "It's probably nothing. Probably just a dermoid cyst. No big deal."

So she did an ultrasound, and anyway, 1 thing led to another, and I went into surgery to have the dermoid cyst removed, and I found out later that it was burst removing it. So it spread cells across my peritoneum. And first reading of it was that it was benign. Second reading of it by the pathologist was that it was a borderline tumor, which means wasn't really cancer, but not really not cancer either. And then the final reading of the same pathology was that it was borderline and serous papilloma and clear cell carcinoma. So that was sort of the beginning of my education. For 1 thing, you want to make sure the right doctor is working on you, because if you might have cancer, you want an oncological surgeon, and that pathology is an art, not a science.

I had a then full hysterectomy, and staging was no further cancer that seemed of concern, and so I didn't have any further treatment. Today I almost certainly would have had a cycle of chemotherapy, but in those days, you didn't. And so about 3 to 4 months later, I started getting really bad cramps in my legs, and turned out I had blood clots flying everywhere, and I was eventually admitted to the hospital with ovarian cancer in my liver, and had chemotherapy then. And after 5 cycles of those, the "big tumor" was reduced by only about 10%. So that's pretty much a non-response in a way. And the other 2 tumors they were following didn't seem to be changed.

So I changed my insurance, and was signed up for liver surgery. And I insisted on a portogram, which is a dye-injected scan. And in the portogram they found 12 tumors they could see, and probably another 12 they couldn't see. And so they told me to go home and think about the quality, not the quantity, of my remaining days. I didn't do that. I went on an odyssey of healthcare systems across the country, and met a guy who agreed to open me up, and inject liquid nitrogen into each tumor in my liver. And when I finally got on his table and he opened me up, and did an inter-operative ultrasound of my liver, they found only 1 tumor. There had only ever been 1 tumor. The rest were blood density irregularities and cysts, or sometimes called hemangiomas, that are common in about 10% of the lives of the population.

So he cryoed that tumor, and packed me back up, and said, "I think we may have cured you. And not many people used the C word back then, so I pretty much figured that I was on so much morphine that I must have misheard him [laughter]. But I also, in the meantime, had found an oral chemotherapy that seemed to be having an effect. And so there was this big skirmish about whether or not I should continue with the oral chemotherapy and not have the kind of dangerous cryosurgery, or whether I should do the cryosurgery and the oral chemotherapy. And I decided we should do both, so we did.

Monika Sharda: What were you feeling as you went through all of this?

Meg Gaines: I mean, I grew up in a reasonably well-to-do family with resources. I'm a white person. I'm the fifth consecutive person in my family generationally to be educated as a lawyer. I had insurance. I pretty much had every advantage you could have, and it was still such an extraordinarily terrifying, frustrating, confusing, roller coaster of an experience for me that I couldn't even imagine what it must be like for people who aren't the most advantaged people in our culture, who aren't among the most advantaged people in our culture, because it's bad enough for those of us who are. So I guess that's mostly how I was feeling. I was afraid of leaving my kids. I was devastated by that. Also, motivated by it. I definitely was not going to go down easy. [laughter]

Monika Sharda: So how did your experience with cancer lead you to become a patient advocate?

Meg Gaines: So my surgery was in March of '95, and I finished the oral chemo on August of '95. And probably around '97 or '98, I was pretty good friends with my oncologist, and he called me 1 day and said, "Hey, I've got this lady. She just had surgery, and she's kind of down. Do you think you'd come over and just talk to her?" And I jumped on the bus, and really was there in about 25 minutes, and sat for most of the afternoon with her talking about life, and death, and mortality and what it's like, and family, and fear, and cancer, and whatever. And as I got up to leave, she picked up an envelope off her bedside table, and she said, "Hey, you're a lawyer. I wonder if you can help with this. My doctor wants me to be here for 5 nights, but my insurance company's only willing to pay for 3." And I just grabbed it out of her hand, and I said, "Give me that." And by the next morning, her insurance company had seen the wisdom of a 5-day stay. And I was sort of hooked. I could not ever really figure out how I was going to translate this kind of desire to make a difference in the lives of other mothers, and daughters, and fathers, and sons, and sisters, and brothers. I couldn't figure out how I was going to do it, but I knew that I wanted to.

And then it dawned on me, first of all, that I wasn't going to be able to do all the advocacy there was to be done for people. There was a lot. And second of all, it would be an amazing experience for students. And third of all, if you really want teamwork in healthcare, you have to train people together across disciplines. So I thought, "Well, why don't I bring them here? The future doctors, lawyers, nurses, social workers, pharmacists, and put them all in a group and say, 'Come on. We got to help this guy deal with this billing issue, or help this woman figure out what clinical trials her husband can go on, or help this whatever."' And that's kind of how it turned into a life of advocacy for me.

Monika Sharda: Okay. Can you talk about the Center for Patient Partnerships came to be, and what the mission is?

Meg Gaines: I did that first case when my doctor called me, and then I never stopped. He would call me for other cases, and then a lot of people started to call me, and then suddenly I was doing more work in my free time than I was in my work. And eventually got a quite generous donor to agree to fund the starting of the center.

Essentially the mission of the center is to help people find and discern their own voices.  So the patients really do have a voice in their own care, and their own values, and their own preferences and needs are met. But also, patients need to be heard when healthcare institutions try to reorganize care systems, and they reorganize them for the benefit of a lot of people, but doesn't really work for patients. So we want patients' voices in on how we make determinations about whether care is high quality.

Monika Sharda: So I find interesting that you use the term patient-centered care at your center. Can you tell me what patient-centered care looks like to you, and how your organization supports patient and clinicians working together?

Meg Gaines: When patient-centered care first got coined as a term, we, of course, were quite excited of the idea, because what could be wrong with care that has patients at the center? But very quickly, as often happens in big reform ideas in big health and big pharma, this very quickly because a marketing term. "We're patient-centered. We're more patient centered." With institutions and organizations having no real commitment to this, and frankly, no idea what it was.

So patient-centered care doesn't mean you tell everybody everything all the time, because if this particular patient doesn't really want to know what the survival statistics are, then patient-centered care is not to tell him, right, not to use that. And so patient-centered care starts with asking the question, "What do you need? What do you want? What would you value? What would work best for you in every single healthcare equation? And then it involves decisions by organizations to put resources into healthcare relationships.

Monika Sharda: Okay. Can you tell me a little bit about how you work with future professionals and advocates on an individual level?

Meg Gaines: Yes. So at the beginning of the semester, we'd get our new batch of students, and they apply and we admit them, and we make sure we admit a mix of people so that we have that kind of disciplinary cross-pollination that we look for, that we want. And then we have our phones ring and our email goes constantly, and we have people who call us from across the world. They say generally 1 or more of 3 possible things. The first is, "Help. I've been diagnosed with this thing I can't even pronounce, much less, do I know what to do about it. So what do I do?"

The second major area is, "Okay. I know what I want to do now, but my insurance company says they're not going to pay for it because it's experimental, or it's not medically necessarily.” We help people figure out how to get the care they need and how to understand when they can't get the care they want, because it’s not proven, or not effective, or it doesn’t meet a specific standard.

And the third major area is usually employment. We try to help employers and patients have real conversations right at the outset. We also help people apply for disability, short and long-term disability, and for social security disability.

Monika Sharda: What advice do you have for someone who's starting out as a patient advocate?

Meg Gaines: I think really understand that it's way more about being a human being than it is about being a human doing, and that it's important to figure out how you can help make the other person self-sustaining, how you can leave someone better able to navigate for themselves than you found them.

Monika Sharda: Okay. Anything else?

Meg Gaines: I guess the most important thing I would say in terms of being a policy advocate or an organizational advocate is stay grounded in the experiences of real patients today. So understand why you're there and what your goals are, and think about how best to get those goals achieved, and to listen to other people, and to adapt your goals and that sort of thing.

Monika Sharda: Sure. Yeah. Okay. Is there anything else that you'd like to discuss or mention that maybe my questions didn't touch on?

Meg Gaines: Just that if folks want to check out our website and our Center, that I think our resource to advocates in the sense that we provide both education and training, as well as we can also sort of help you think about something you're working on, and problem solve.

Monika Sharda: Okay. Thank you for sharing that information.

Meg Gaines: Sure. And our website is So “partnerships” with an S [laughter].

Monika Sharda: Okay. [laughter] Got it. Thank you again, Meg, for your time. It was a pleasure talking to you.

Meg Gaines: My pleasure, Monika.

ASCO: Thank you, Ms. Gaines. More stories and tips from patient advocates can be found at the Cancer.Net Blog at And if this podcast was useful, please take a minute to subscribe, rate, and review the show on Apple Podcasts or Google Play.

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