It’s hard to imagine anyone better equipped to make a complex medical decision than Dr. Mary Catherine Raugust Howell.
Howell, a pediatrician, was associate dean for student affairs at Harvard Medical School in the early 1970s, the first woman to hold such a post there. She was also a psychologist and a lawyer, earning a juris doctor from Harvard at age 59.
She seemed to have everything to live for, including seven kids, a wide circle of friends – many of them high-achieving, Renaissance women like herself – and a passion for chamber music, which she played with friends five nights a week.
Yet when Howell discovered a lump in her breast, she chose to take no action at all, not even a mammogram or biopsy. By the time she consulted a friend, Dr. Roxanne Cumming, 4 1/2 years ago, the lump was “as big as a walnut and rock hard,” says Cumming.
It was obvious, Cumming says, that the lump “could not have been anything other than breast cancer,” and Howell figured, at least at that point, that treatment would not prolong her life.
Howell lay dying last week, having kept both her cancer and her decision not to treat it secret from all but a few friends.
Her decision will strike many as shocking, for many cancers can now be successfully treated, especially if caught early. In fact, according to 1998 figures from the American Cancer Society, the overall death rate from cancer fell 2.6 percent between 1991 and 1995, the first sustained decline since the 1930s. For breast cancer detected in early stages, current treatments cure 60 to 90 percent of women.
But controversial as Howell’s choice may be, it is a potent example of the self-determination that is every patient’s right.
Granted, no one knows how many of the 1.2 million Americans diagnosed with cancer this year will refuse conventional treatment – out of despair, fear of side effects, or a rational assessment of the facts. But Howell is clearly not alone.
Rozsi Moser, for instance, a 42-year old Watertown woman who manages the Newbury Guest House in Boston, was diganosed with Hodgkin’s lymphoma at age 35.
Even when Hodgkin’s is advanced, more than 50 percent of people are cured, says Dr. Michaele Christian, associate director of the cancer therapy evaluation program at the National Cancer Institute.
But to her doctors’ dismay, Moser declined treatment. She had watched her mother die of cervical cancer and felt the doctors had “killed her” with chemotherapy. Whether that was true or not, when Moser got cancer, she felt “more afraid of the treatment than I was of the cancer, and I still am.”
She did agree to surgery remove a swollen lymph node, then threw herself into Zen Buddhism. She did well until two years ago when her cancer worsened and she finally consented to a few rounds of chemo. “I quit halfway through. . . I couldn’t take it anymore,” she says, though she feels fine now.
For every case like Howell’s or Moser’s, of course, there are thousands, perhaps millions, who choose conventional treatment, increasingly with complementary therapy such as acupuncture, herbs or meditation. And many are glad they did.
Ellen Labb, now 35 and a student at the Harvard School of Public Health, has had both Hodgkin’s disease and breast cancer, the treatment for the first perhaps a cause of the second.
Though she knew all too well what the tools of Western medicine can do, for good and ill, she plunged into breast cancer treatment. “I was too afraid not to do it,” she says. “That was my chance to live.”
For doctors, a patient’s right to refuse treatment creates a complex duty to respect that right but still to probe for hidden despair and to argue in favor of any treatment that, though rugged in the short term, is likely in the longterm to improve the quality or quantity of life.
That’s just what Howell’s doctors feel they did.
“I didn’t totally understand her decision, but I respected it” even when that meant trying “to protect her from the medical profession,” says Dr. Catherine DuBeau, who took over Howell’s care last year after Cumming moved away.
Often, when people newly diagnosed with cancer refuse treatment, “it’s a control issue,” says Dr. Jack Evjy, a medical oncologist and a member of the board of directors of the New England division of the American Cancer Society. In his Methuen practice, Evjy says he sees several patients a year who decide against the traditional options.
Some “want to do the things they’re used to doing, at least for a while, then have it over with, rather than going through the potential loss of body parts from treatment and its side effects,” he says.
Others feel fine and dread being – and looking – sick from chemo, even though lost hair grows back, nausea can be offset with drugs like Zofran and marijuana, and drugs like G-CSF enable the immune system to recover faster from the damaging effects of therapy.
Still others refuse treatment because they’re too depressed to think clearly.
“I don’t believe in atomic warfare in the oncology clinic,” says Dr. Jerome Groopman, chief of experimental medicine at Beth Israel Deaconess Medical Center. But if someone has a cancer that “could potentially be cured or put into prolonged remission and that person tells me they don’t want to do anything, I worry about the psychological dynamics.”
Sometimes, of course, saying no – at least for the moment – may be a rational choice. With prostate cancer, for instance, the potential side effects of surgery – incontinence and impotence – can outweigh the risk of a slow-growing cancer, says Dr. David Rosenthal, president of the American Cancer Society and head of Harvard University Health Services.
And some doctors, perhaps especially holistic physicians like Dr. John Borduik of Spectrum Medical Arts in Arlington, are sympathetic to patients who refuse treatment.
Borduik, who says a third to a half of his patients opt against conventional therapy, believes his job is to “optimize the quality” of patients’ lives and support their decisions.
Carol Allwell, a 49-year-old acupunturist from Newport, R.I., agrees. “I am a holistic practitioner,” she says, “but you have to weigh where you are at.” Diagnosed last year with ovarian cancer and given three weeks to live, she felt her “best shot was to take chemo to give me time to do other things.” Now in remission, she feels that “chemo bought me time, for sure.”
In all such decisions, says Howell’s friend and doctor, Roxanne Cumming, the key is this: “You and I don’t know what decisions we would make until it’s our time. We have to hope that whoever is taking care of us will respect our decisions.”
Previous “Health Sense” columns are available through the Globe Online searchable archives at http://www.boston.com. Use the keyword columnists and then click on Judy Foreman’s name.