They are two women engaged in the universal banter of motherhood. "I brought wedding pictures," says Karen Ulisney, pulling out her photo album. "Kristina got married to a great guy. She's so happy." Claudine Isaacs leans forward and smiles. "How old was she when we met?" Isaacs asks. "Sixteen. And Matt was 6," says Ulisney. Isaacs laughs. Ulisney beams. "He's five-ten now. He's such a handsome young man," says Ulisney, flipping to a photo of mother and son walking arm in arm. "You look just a little bit happy," says Isaacs. "I didn't think I'd make it to the wedding," says Ulisney, tearing up. "That was a milestone."
These are not old friends catching up at a coffee shop. The setting, instead, is an exam room at Georgetown University's Lombardi Comprehensive Cancer Center. Ulisney, 51, is a 10-year breast-cancer survivor in for her annual checkup. Isaacs, her oncologist, is at the cutting edge of compassion. Yes, the doctor performs a physical exam. And she and Ulisney discuss her patient's medications and concerns. (Should she have genetic testing? Does she need a breast MRI?) But their interactions transcend the clinical. The two women are partners in an odyssey that combines medicine with the human spirit.
The science of cancer has made great strides in recent years. Researchers are identifying the unique molecular characteristics of tumors and developing new targeted drugs to attack them. But no technological advance can measure fear or heal the psyche. In the inhumane world of cancer—the terrifying lingo ("malignant neoplasm," "adenocarcinoma"), the burn of radiation, the dread of recurrence—patients want not just excellent care but caring experts. And oncologists are hearing the call. "Part of this humanistic approach is the increasing awareness that there's another person in front of you who's suffering," says Dr. Teresa Gilewski, of Memorial Sloan-Kettering Cancer Center in New York. "The question is, what can you do to help?" Practicing world-class medicine and humane treatment aren't mutually exclusive, says Dr. Lidia Schapira, an oncologist at Massachusetts General Hospital Cancer Center. "They're part of the same definition of a good cancer doctor."
Ulisney had no choice the first time she put on her paper gown. Cancer invaded her breast tissue, but there is more to a patient than her disease. Isaacs, director of Georgetown's Clinical Breast Cancer Program, knows this, and it defines the way she practices medicine. She gently touches patients' arms when she senses they need comfort, she pauses during conversations to allow for a fear that might otherwise be stifled. Isaacs can recite the molecular blueprints of her patients' tumors, but what she remembers after her appointments are over is not the cancer. "It's who they are, what they do, how many kids they have," says Isaacs. "We're afforded an intimacy into people's lives. Hopefully, we can help them through a tough time."
Talk to cancer patients who love their doctors—and, yes, the word "love" comes up frequently—and key themes begin to emerge: hope, trust, respect. Brendan Lohan found all of this in his relationship with Dr. Robert Mayer of Boston's Dana-Farber Cancer Institute. In 1999, Lohan, then 39 and the father of two young children, was diagnosed with advanced colon cancer. Lohan and his wife, Mary Jane McKenna, knew his prognosis was grim. But Mayer made it clear that talking numbers would be unproductive. "He basically said, 'Statistics don't matter when it comes to the individual'," says Lohan, now 48. "That gave me even more desire to fight."
What Mayer did want to focus on, he says, was "developing the very best, most reasonable, rational and tolerable treatment plan." Along the way, he calmed Lohan's anxiety by assessing his disease in real time, rather than fast-forwarding to an unknown future. At first, Lohan was intimidated by Mayer's stature, but they quickly developed a warm rapport marked by simple non-jargony explanations about cancer one minute and chatter about soccer games the next. Over the past decade, Lohan, a carpenter born in Ireland, McKenna, a lawyer, and Mayer, a leading authority on colon cancer, have become fellow warriors. Patients want "somebody who knows them, who they have gone to battle with and come back in one piece," says Mayer. "People whom they trust."
Linda Goodman, who was diagnosed with metastatic pancreatic cancer in 2006, felt a "human connection" to Dr. Robert Fine the day she met him. Fine, director of experimental therapeutics at Columbia University's Herbert Irving Comprehensive Cancer Center, routinely spends two hours with patients ("I'm not here for the money," he says) and works nights and weekends in his lab, where he has formulated new chemotherapy cocktails that show promising results for this angriest of cancers. The average survival for people with pancreatic cancer that has spread to the liver is six months; Goodman has made it to 18. Like Mayer, Fine won't discuss odds. "I want my patients to live their life living," he says. "I don't want them to live their life dying."
Goodman, 58, has been so impressed with her doctor's kindness, his creative thinking and the passion he brings to his research that she and her family raised $185,000 for Fine's lab, helping to pay for the three Ph.D.s who work for him. The giving doesn't stop there. On chemo days, Goodman presents Fine with his favorite corned-beef sandwich and chocolate éclair. "He's been incredibly devoted to me," says Goodman. "Sometimes I don't know if I'm going to get better or not. He's one of the people I don't want to disappoint."
Compassion, empathy, understanding. It all starts with a doctor's ability to communicate with his patients—not just about their CT scans, but about how they're coping. In "Cancer Care for the Whole Patient," a report published by the Institute of Medicine last fall, researchers found that health-care providers frequently fail to recognize the emotional and social problems their patients face, like depression or a lack of information about their condition, which can demoralize them and hinder their treatment.
In the past, most doctors learned how to connect with patients by trial and error or, if they were lucky, from mentors. Today, virtually every U.S. medical school offers a course in patient communication. And in 2004, the National Board of Medical Examiners added a new section on "communication and interpersonal skills" to its nationwide test. One recent day at Georgetown, young doctors-in-training practiced by interacting with "standardized patients," actors who unloaded a list of symptoms, then graded their practitioners on a checklist that included "introduced self warmly" and "paid attention to both my verbal and nonverbal cues."
Teaching a humanistic approach is imperative, says Mass General's Schapira. And it needs to be retaught after students graduate. In a survey published last year, Schapira and colleagues found that one third of oncologists do not routinely screen their patients for psychosocial distress—an umbrella term that includes emotional and social difficulties, as well as psychiatric disorders. And most of those who do aren't using effective screening tools. The problem: distressed patients may be less likely to adhere to treatment and more likely to suffer. The IOM report calls for a new standard of care, including routine checks for distress. And Schapira herself hopes to launch a humanistic curriculum for oncology-program directors through the American Society of Clinical Oncology. Key lessons: how to break bad news and how to handle end-of-life care. "We have to move away from an era that says you either have it or you don't to an era that says these skills can be enunciated, modeled and learned," she says.
At Mass General, health-care workers learn from each other at lunchtime meetings sponsored by the Kenneth B. Schwartz Center, named for its founder, a 40-year-old nonsmoker who died of lung cancer in 1995. Schwartz felt so strongly about the kind care he had received—from his oncologist, Dr. Thomas Lynch, and from nurses and technicians, too—that he left $25,000 in his will to establish a program dedicated to empathic health care. Today, "Schwartz Center rounds" are conducted at 145 U.S. medical institutions. At Mass General, a young patient with Hodgkin's disease recently talked about cancer's stigma (do you disclose all on a first date?) and told doctors she appreciated humor. "Knowing what to do medically isn't the challenge," says Lynch. "The challenge is connecting with the patient."
Dr. Lois Ramondetta, a gynecologic oncologist at M.D. Anderson Cancer Center in Houston, met that challenge with Deborah Rose Sills, who had stage III ovarian cancer. Ramondetta was not Sills's primary doctor; she had a team of caregivers. But the two women became so close they wrote a book together, "The Light Within: The Extraordinary Friendship of a Doctor and Patient Brought Together by Cancer." The book, published last month, is a poignant account, filled with stories about children and romance, the women's views on spirituality and medicine, and tales of their travels abroad together. Ramondetta was captivated by Sills's luminous spirit and her bellowing "Good morning, Lois!" even when she had tubes coming out of her body. Sills, a professor of religion, relied on Ramondetta's straight talk, especially when her cancer recurred. When Sills asked what would happen when her body finally gave out, Ramondetta talked honestly about bowels and bloating and nausea. Toward the end, she visited Sills at home, then wrote her a letter acknowledging her dying: "I wish you peace of mind and an end to pain and suffering." Sills died in May 2006.
In cancer, the sword of Damocles hangs ever present, and compassionate doctors must learn to cope. Columbia's Fine cries during car rides home after his patients die. He goes to their funerals and gives eulogies, too. All this relieves the sadness, helps him recenter himself so he can be fully present for his patients and motivates him to work harder at finding a cure. Being engaged with patients doesn't cause burnout, says Fine. It helps prevent it. What matters most, he says, is that his work gives meaning to his mother's life: she was diagnosed with Hodgkin's disease when Fine was 10 and died eight years later. "The day she died, I made her a promise that I would devote my life to cancer therapy and cancer research," he says. "It's very personal for me."
Cancer is a cluster of cells run amok. Its effect on doctors and their patients is big and small all at once. One of Ramondetta's treasured gifts was a persimmon in a silver bag, given to her by a Thai patient. She has a plant named Florence—after a favorite patient who died. Dr. Judah Folkman, the groundbreaking cancer researcher who died in January, was so beloved by Tonya Kalesnik, 26, that she asked him to dance the father-daughter dance at her wedding. Kalesnik has pictures of Folkman up in her apartment and cries when she says, "He was so much more than a doctor."
Abby Gunn, 23, wants to be so much more, too. Now a clinic assistant at Memorial Sloan-Kettering, Gunn plans to go to med school. Out of tragedy comes renewal: Gunn is Deborah Rose Sills's daughter. "My mom outlived all the statistics," she says. "I think the care she received had everything to do with it." It will be years before Gunn earns her white coat, but she talks about treating cancer patients like an M.D. with a soul. "It doesn't get much bigger," she says. Or more important.