As is often the case, but rarely with doctors, you know things are about to get interesting when Marisa Weiss, M.D., takes off her pants. They come down about two minutes into her presentation — not “Tips and Toys,” the one about getting back your sex drive after breast cancer, but the truly radical “Doctor Doctor Lend Me Your Ear.” Discussing ways to improve the doctor-patient relationship before an audience of young breast cancer patients, Weiss, 46, a breast radiation oncologist at Lankenau Hospital and founder of breastcancer.org, not only puts herself in the patient’s shoes; she gets into his gown. That is, takes off her white coat, untucks the blue tissue from her trousers, shimmies them off, and with a deadpanned “Now, when would you ever choose to wear something like this to an important meeting about your future?” crosses the great divide that separates doctors from their patients.
Over the course of the next 30 minutes, Weiss — with a delivery that calls to mind a more maternal Ellen DeGeneres — covers what it’s like to go to the doctor, any doctor, when you’ve got a serious health concern on your mind. She explores the sleepless nights before the exam (“That’s when I see my husband the longest”) to the prep work the morning of (“One time, I forgot to shave one leg. I looked down. I was half man, half woman”) to the inevitable, inordinate wait in the office (“Where are they? Are they playing poker or something?”). But her routine is not merely an entertaining romp. The practical tips she provides for communicating better with your doctor are meant to help balance a relationship she sees as inherently lopsided.
Of course, being sprawled on an exam table has always been uncomfortable, but in the HMO era the doctor-patient bond has become increasingly taxed. Partly, that’s due to additional pressure on doctors themselves. Medicine as a business means mounds of insurance paperwork and a constant pressure to see more and more patients amid cutbacks upon cutbacks. And while your doctor is working harder, he’s pocketing less — thanks to managed care’s dwindling reimbursements (one breast cancer surgeon Weiss knows gets about half of what he used to receive per procedure), plus all the malpractice insurance he needs to carry should you decide that in all his rushing around, he screwed up, and you’re gonna sue.
These changes in the practice of medicine, Weiss says, hit beyond just the pocketbook — they threaten to wring the pleasure out of healing, and wither what Weiss calls the “sacred bond” between patients and their doctors. No wonder that in addressing the -doctor-patient relationship, and doing something about it, Weiss has struck a nerve in the medical establishment itself: While her presentation was designed for patient groups, medical associations around the globe are requesting it, too. Doctors are starting to field a defense, if not a full-blown offensive, to the system, channeling their frustration into a new type of “humanistic medicine.” Local med schools and hospitals are getting in on it: Weiss’s alma mater, the University of Pennsylvania Medical School, has new sensitivity courses like one that pairs medical students with chronically ill patients, whom they follow in and out of treatment over the course of several years. Fox Chase Cancer Center encourages patients to vent concerns via the Internet.
But the real change starts with doctors like Weiss. If patients are the logical judge of a doctor’s humanism, she scores off the charts. Over and over, the breast cancer patients she treats at Lankenau Hospital report that Weiss listens, cares, asks how they are, inquires about their kids — and is willing to share something about herself, too. Her reputation is such that when Lankenau recruited her from Paoli Hospital more than two years ago, the hospital let her oversee the design of the radiation department, right down to its proximity to the parking lot. The Today Show has had her on for eight consecutive years to talk about how to talk to your doctor. All that may put Weiss in the vanguard of a growing trend — we are starting to demand that our doctors be not only medical experts, but humans we connect with. But it’s a very natural state of affairs for Weiss.
One day recently, in her office, she is about to be briefed by her nurse on the next consult when a call comes over the speakerphone. The caller, who addresses Weiss as “Marisa,” is so warm that I take her to be a friend. In fact, she’s a patient Weiss treated weeks ago for the spread of cancer to her brain.
“You sound very good right now,” Weiss tells her. But the woman explains, chatty as if she’s discussing the PTA, that she just returned from an unexpected, several-day stay at the hospital. Now, another oncologist on her team is suggesting it might be “time to talk to the girls” — her daughters. He’s provided her with the name of a psychiatrist to help with the process.
“How do you feel about that?” Weiss wants to know.
Clearly, not your mother’s doctor.
If the world is divided into two types of people, those who don’t want to talk to the person beside them on the train and those who do, Weiss is the third: the one who quite possibly starts talking before she even sits down, because she really can’t help herself. She’s that curious about who’s in front of her, and that comfortable with drawing others out.
Even, say, on an Acela train, after attending a breastcancer.org fund-raiser at Tory and Chris Burch’s spacious New York City apartment, in a blizzard, during a week that included international travel, she easily falls into conversation with two businessmen who give her tips on corporate and private donors she might enlist to help fund her nonprofit. It’s like the story of another train ride her family (her father Leon is a renowned physician scientist at Penn; her brother is the writer Philip Weiss) gets a big kick out of telling: how Weiss’s sister just couldn’t get little Marisa to stop poking her head up over the seat and talking, for hours, to two gentlemen sitting nearby. (Come on! They were toy inventors!) “If anything, it gets me into trouble,” Weiss says of her need to learn about the people she takes care of, her interest in their partners, their lives, how they’re managing their pain.
But despite this wealth of determination and reserves of caring, Weiss says that about 10 years ago, the system started to wear her down. “My frustration was building,” she recalls. “I’ve always tried to answer my patients’ questions and resolve uncertainty. And I became increasingly aware that with all the medical progress came all kinds of new questions that exceeded my ability to answer them in a day-to-day way within the hospital context.” The clincher, she says, was the discovery of the breast cancer gene. Those who possess the mutation, medical research announced, have up to an 85 percent risk of getting breast cancer, and up to a 55 percent risk of ovarian cancer. Suddenly, Weiss says, the questions multiplied: When do you start talking to young women about this? When is prophylactic surgery appropriate? How do you help the gene carriers see past the big black mark to lead productive and spontaneous lives?
This increased need for information, coupled with the possibilities the Internet presented, says Weiss, led her to start breastcancer.org out of her living room, with the help of a single assistant. Now, her five-year-old organization has a staff of 12. Her website — offering easy-to-understand information for the woman who needs to know what arm lymphedema is, or who’s confused about what her doctor meant by her being estrogen receptor positive — has about 500,000 visitors a month.
Weiss now officially works three days a week on the site and nonprofit, which leaves three 10-to-12-hour days at her practice. It’s a trade-off, as shadowing her over the course of two days there clearly reveals. Yes, the women who arrive at her office for the first time, frightened and confused, crave more and better information. But Weiss herself proves there’s no substitute for the way a skilled and compassionate doctor can deliver it.
Often, being patient-focused requires patiently explaining things that may not relate directly to her specialty. Since patients are referred for radiation at different points in their treatment, Weiss is often picking up where other doctors have left off (or jumped ship) to lay out the larger course of a patient’s care along with her piece of the puzzle. Weiss must play shrink and teacher along with doctor.
She says that body language is often her clue to who she’s dealing with. The first day I watch Weiss with patients in her office, Mary, a 39-year-old former nurse with two small children and a very good wig, is sending a strong signal with her eyes. In the close quarters of the consultation room, they follow Weiss’s every word and gesture. Mary even cocks her head slightly when Weiss glances down at her chart, not wanting to miss a beat. Her husband’s gaze, meanwhile, stays riveted to the floor, as if he fears he could be overcome with emotion.
The couple have come for the initial consult before radiation begins, on the eve of Mary’s final round of an intensive chemotherapy. Along with getting her to sign off on the standard consent paperwork, Weiss asks Mary what her understanding of her situation is, and how she can help. (Getting the patients to talk first, Weiss says later, helps her tailor the conversation to what they most want to know.) That leads to a description of her type of cancer — one that Mary, despite her medical training and obvious, anxious desire for information — says is largely news to her. Weiss explains, slowly and evenly, that Mary has an invasive cancer (one that was at first missed by another hospital) that would be considered “high grade.” That means, Weiss says, that it multiplies rapidly, but is also disorganized and vulnerable to chemotherapy. “No one ever explained that to me,” says Mary, with the eyes still trained. Weiss continues: The tumor the surgeon removed was seven centimeters TK. But, Weiss says, pulling out her ruler to show Mary, only 1.1 centimeters of it was invasive, which in her opinion means Mary still has early-stage disease. “Has anyone ever explained that to you?” Weiss asks her patient. “No,” Mary replies.
While the cancer-free margins around the excised tumor were “too close for comfort,” Mary’s long-term odds, it turns out, are pretty darn good. After Weiss details how they improve when radiation is combined with a hormonal therapy or chemotherapy, Mary says she tried to get at this kind of information herself by reading Living Beyond Breast Cancer, the book Weiss co-authored with her mother, Ellen Weiss, a recent breast cancer survivor. But when she got to the section on “reoccurrence,” the word made her so upset that, she says, “I had to go pray.” Weiss suggests that Mary look at her website instead of the book if she has more questions.
Other, follow-up appointments are more perfunctory — or would be, if Weiss’s patients didn’t feel so comfortable bringing along questions that only tangentially relate to their care with her. There’s Dorothy, whom Weiss describes as “live entertainment” right before opening the exam-room door onto a diminutive 89-year-old woman all but dwarfed by the gigantic raccoon fur hat she’s left on. Her issues include fatigue, but as it relates to the weather we’ve been having, not the cancer she’s officially free of. She also bemoans that she’s too skinny. “Oy vey!” she hollers, grabbing her brassiere and shaking it up and down. “Have you ever seen breasts this flat?” But she doesn’t want actual tips on eating or sleeping. She just wants Weiss to “sit down, honey” and chat, and to take a look at her new “hip guards,” which are shapely pads sewn into her tights. “No, I haven’t seen those before, Dorothy,” says Weiss. “I have seen butt enhancers on guys on Spruce Street.”
Katherine, a trim and soft-spoken Main Line mom who finished treatment a year ago — long enough for her hair to grow back beautifully, as Weiss notes after giving her a hug — has arrived for a standard checkup. But she wants questions answered about an osteoporosis drug another doctor has prescribed. She stopped taking it after reading a Wall Street Journal article — she pulls it now from her bag and fingers it nervously — claiming it can cause bone loss in the jaw. Weiss asks what the woman’s doctor said about it. “I saw him on this, but it was a little frustrating,” says Katherine. “He wouldn’t look at me and say ‘It’s best for you.’” Weiss, who makes a point of touching a patient’s arm, or knee, during their discussion, tells Katherine that while bone disease isn’t her specialty, she has read the studies, and they say such side effects are really rare. Plus, “A ton of my patients are on it, and I’ve never seen a case of it.” Which is probably what the woman’s other doctor said, but the way Weiss says it — It’s really rare, with her gaze locked in, entirely attentive — manages to telegraph so much more. As she pushes Katherine to see a specialist and get her brittle bones under control, she also imparts comfort, and perspective, and, between the lines, a message: You’re worrying too much about the wrong thing.
The doctor-patient relationship is like any other, says Weiss: “If two people connect and develop some sort of appeal, then it’s going to work better.” And yes, she concedes, that reality can have somewhat scary implications; patients who are liked could wind up getting better care. Of course, Weiss treats everyone well — even the whiners, the grumps, the reschedulers, the woman who asks, “How was Finland?” when the doctor walks through the door, seemingly annoyed that Weiss couldn’t see her last week. Still, she does seem to have a few favorites. She clearly warms to the squat-and-spunky Latin teacher with six kids, who used to tell her students her hands were “registered lethal weapons,” and who says she’s been amazed by how the boys she instructs have helped out in the classroom and behaved so well during her chemotherapy. And Weiss even wants to set up on a date the determinedly upbeat, well-dressed mother of two teens who lost her husband last year. “When you’re ready,” she notes. And then there’s the call from the patient with brain cancer, the one who wonders whether it’s time to tell her daughters she’s dying.
As she puts it, Weiss lets herself take it in — whatever her patients are going through — and feel it. And yes, she acknowledges, it’s often sad, but also meaningful. “I thrive on the seriousness of the work I do,” she says. She is seeing five young mothers with advanced breast cancer now, all in their 30s, all “struggling.” “People have no experience with the end of life,” says Weiss. “The most meaningful thing I can do sometimes is help people then.” When asked about how they handle discussing this end-stage of the disease with their children, she says, “The conversation just doesn’t take place with moms with young kids. They can’t bear it.” And the thought of that much pain, the drip-drip, drawn-out horror, hangs there like an unwanted IV for a moment.
But then, of course, Weiss has to let it go, give herself a break. And so she checks her e-mail, as millions of us do, all day long, at work. Only here, it seems slightly more incongruous when the doctor leans back in her chair and brings her hands to her head of curls. “Why do I do this?” she cries, and starts typing a response to a guy she’s trying to buy some rugs from off eBay who wants to be paid in euros.
At her Wynnewood home that night, after checking on her three teenagers in their rooms (Elias, 17, is filling a CamelBak personal hydration system with water — “For what? For class”; Henry, 15, has strung up lights into a giant peace sign; Isabel, his twin, is hitting the books, surrounded by approximately 100 snapshots of friends and family), Weiss gives me a tour that includes scattered evidence of her full-blown eBay obsession. There are Lucite dining room chairs, 1950s bucket seats, groovy ’60s bar stools. We’re standing in the grand foyer, next to a large, disassembled hutch, when she says, perhaps about the stuff, or perhaps about the day’s seesaw between pathos and humor, “It’s an adaptive way of dealing with a very serious life. Because I have a lot of fun, but when you’re seeing all of these people who suffer so much every day, it has an impact. Just to keep going, keep the flame … ”
She doesn’t finish her thought, but she doesn’t crack a joke, either. She moves on to point out the chairs that are headed to the space she is setting up in New York City, which she hopes to visit once a week to help secure the nonprofit’s endowment. Which, in turn, would help her reach more women with even more life-saving information, in their homes, when they want access to it. “There’s a huge need that exists outside the hospital walls,” she says, discussing the myriad ways the organization could be doing more internationally, especially in Africa, with more money. When she talks about the website and other outreach efforts, Weiss lets herself be optimistic and unfettered in a way reality won’t always let her be about her patients. The thing about delivering patient-centric medicine in today’s world? It demands an awful lot of the doctor. So much, perhaps, that running a top-notch, medically up-to-date and funds-hungry nonprofit to provide the most comprehensive and easily understood breast cancer information on the Internet could almost seem like a break.
Almost. Except that it’s 7 p.m. and she has yet to have dinner — her husband, David Friedman, a pediatric hematologist, is just walking in — or do her transcriptions or return more calls to patients or read the new content the website writers have e-mailed for her review. But how can she possibly stop now? Think about it. All those thousands of women with all that uncertainty, screwing their hope to the sticking place, logging on. Finding an answer. Getting a term defined. Breaking down their fear. Something can be accomplished. Something can be resolved. Even during the wee hours of the morning, sometime after one and before 6 a.m., that very small window when the doctor is finally, briefly, not in.