Thursday, Jun. 02, 2011

The Refuseniks

It was the kind of case you never forget. Sean Ransom was a psychology intern at a cancer center in 2005 when he was sent a patient, a widow in her 80s, who had just been diagnosed with a treatable form of lung cancer. Her oncologist had recommended surgery and chemotherapy, but she had turned him down. "After interviewing her, it seemed that she had a kind of depression common in older patients — not really a lot of sadness but boredom and no real pleasure in life," says Ransom, who is now the director of the Friedler Center for Psychosocial Oncology at Tulane Cancer Center.

The patient didn't believe she was depressed but was curious enough to start taking antidepressants and go to a few counseling sessions just in case. After a month or so, she returned and said, "You were right. I must have been depressed, because I feel so much better now. Things are more enjoyable."

"So you've decided to get treatment," said Ransom.

"No. I still don't want treatment. I just thought you'd like to know that you were right about the depression."

Ransom was surprised, but the patient explained that she didn't want to go through the suffering of chemotherapy. He took her to the infusion center, and she agreed that it didn't look as bad as she had feared. But when Ransom again asked if she would get treatment, she still declined. "I'm alone. I've lived a good life, but I miss my husband," she said. "I'm happy with what my life has been. I don't want treatment." Ransom bade her farewell, thinking he would never see her again, but she returned at the end of his internship year, thinner and more wan but still resolute, to ask if he would speak to her daughter, who was struggling with her mother's decision. "That might have been the only glimpse of regret that I saw — she didn't like that her daughter was sad — but she never seemed to be ambivalent about her choice," he recalls.

In the research literature, they are but a footnote — the small minority who refuse or drop out of treatment. But to clinicians like Ransom, they are the cases that continue to trouble them for years. There's something unnerving, outrageous even, about refusing treatment that might beat cancer or at least prolong life, especially when so many patients continue to seek help even when their disease is no longer treatable.

"Cancer receives a special status," says Dr. Vic Velanovich, the director of general surgery at the University of South Florida. "Unlike with any other disease, the federal government declared a war on cancer, so with all this effort, how could you possibly refuse treatment?" And yet Velanovich has surveyed people who have done just that. "It's actually not that unusual," he says, "particularly in the older age group" — which accounts for the majority of cancer patients. "But it's certainly not just older patients either."

It is a phenomenon quite distinct from that of people who, in the last weeks of their life and generally in great pain, refuse food and water or otherwise show, to use the clinical term for it, a "desire for hastened death." Instead, treatment refusers are often at the beginning of their cancer journey, and the interventions they refuse are considered active in that they are intended to cure or control rather than palliate the disease. While stories about Christian Scientists relying on prayer or Jehovah's Witnesses refusing blood transfusions are the ones that wind up in the news, most people who refuse treatment are not doing so for religious reasons or even out of a deep mistrust of modern medicine. In fact, many patients will accept part of a doctor's recommendation — surgery to remove a tumor, say — only to reject adjuvant therapy such as chemotherapy or radiation that is often the next step.

For these people, the relevant fact is often that "unlike most drugs, which provide the high possibility of benefit with the possibility of harm, many anticancer drugs, especially chemotherapy, provide near certainty of harm with only a possibility of benefits," as Nancy Evans, a breast-cancer activist and health journalist, has put it. After being diagnosed at the age of 53, Evans underwent surgery and radiation and began to take tamoxifen but found that it wiped out her memory so badly that she stopped. "Doctors said I was taking a real risk, but it's now 20 years later, so I think I made the right choice," she says.

A Numbers Game
While it's tempting to argue that refusenik patients are allowing irrational fears about side effects to get in the way of medical deliberation, they may actually be grappling with a different calculation that too often gets ignored: The therapies might prolong life, but for how long, and at what cost? There have been no methodological studies — withholding treatment from a control group would be unethical — but one survey comparing almost 800 patients who refused all conventional cancer treatment with those who accepted treatment found that refusal shortened the median length of survival by nine months. The survey was extremely broad: subjects suffered from 30 kinds of cancer at varying stages of the disease, and survival ranged from two months to more than six years. But the point is, sometimes treatment buys you a lot of time. Sometimes it doesn't.

Even if the implications of the study were more precise than they are, the numbers still wouldn't tell the whole story. "Survival is easy to measure, but what we don't measure is how people live during the time they are alive, " says Velanovich. "The bitter truth is that none of us knows when our last days are going to be. What you can control is how you choose to live during the time that you are alive." People who refuse treatment have in some ways already come to terms with this existential dilemma.

The Patient's Voice
It used to be that doctors made the treatment decisions and expected their patients to fall in line. That has all changed over the past several decades. In 1975 the ACLU published a model patient's bill of rights, which stated that "an adult patient who is both conscious and mentally competent has the legal right to refuse to allow any medical and surgical procedure to be performed on his body." In 1978, when the World Medical Assembly convened to hammer out the principles of informed consent, a patient's option of refusal was implicit within the requirement that doctors fully explain the risks and benefits of any particular treatment.

Still, people who eschewed what medicine had to offer were seen as problem patients or, worse, mentally unstable — in the grip of "false beliefs" that it was the doctor's unfortunate duty to try to change. In 1982 in the journal Psychotherapy and Psychosomatics, a psychiatrist at Brown University declared that "most situations involving refusal of treatment involve issues of psychological distortions, interpersonal dysfunction, medical systems dysfunction, or psychiatric disorder, such as depression or organic mental disorder." Nowhere was it considered that a rational patient might be making an informed choice.

It wasn't until 1990 that the Association of American Physicians & Surgeons adopted a list of freedoms that should be guaranteed to all patients that included the freedom "to refuse medical treatment even if it is recommended by their physician." It fell to the psychologists specializing in cancer treatment in the emerging field of psycho-oncology to try to make sense of why, and under what circumstances, a cancer patient would choose to exercise that newly defined right. What they have found has contradicted the stereotypes of uninformed, irrational and suicidal patients.

"They made quite deliberate and usually clearly reasoned decisions," says Irena Madjar of the University of Auckland, who conducted a survey of such patients that was published in 2005 in the European Journal of Palliative Care. "We found them to be intelligent, quite articulate and fully aware of the possible consequences of their decisions. They are not a minuscule fringe group, but they need to be better understood and given more appropriate care."

One thing Madjar and others like her are beginning to understand is that refuseniks don't use medical evidence as the only or even the main factor in their decisionmaking, although they report collecting lots of research about proposed treatments. But they then go further, making choices that are more reflective of their values, like the belief that the meaning of life is greatly diminished when the ability to live it normally is compromised. They don't want to live as long as possible if that means a loss of bodily integrity and personal agency and a heavy dependence on others. Sometimes they rely on the personal experiences of friends who underwent similar treatments. They believe in the benevolence of the doctor's intentions and often in the doctor's skill as well, but in the end, they choose a route that they think will give them a better sense of control, quality of life and dignity.

Care by Other Means
While personality is a big factor in declining care, other variables particular to the type of cancer or the demographics of the patient can play a role. Older women with breast cancer are more likely to decline surgery, chemotherapy or radiation, for example. In one survey of women with breast cancer, 7% of women 65 or older refused treatment, compared with 3% of women under 65. Men with prostate cancer often postpone surgery out of concern about adverse effects such as incontinence and impotence, and indeed, watchful waiting and monitoring PSA levels are sometimes a doctor-approved option. Usually, however, a patient is not given much time to deliberate, a complaint that's often cited by supporters of complementary and alternative medicine (CAM).

One study found that 14% of cancer patients who use CAM decline conventional treatment, but their reasons are different from other refusers'. Often, they have had a negative experience with mainstream medicine and have probably relied on CAM before, although not always to the exclusion of traditional care. "Sometimes they'll wind up going back to conventional treatment — and the majority actually use both, which is probably the best route — but we've interviewed people in later stages, and we have not heard a lot of regrets about the decisions they've made," says Marja Verhoef, a professor of complementary medicine at the University of Calgary. "I don't think they're much liked by oncologists, but they've really thought about what life means." (The NIH's Center for Complementary and Alternative Medicine cautions that CAM should never be used as a replacement for conventional care and that "at present, there is no convincing evidence regarding CAM use in preventing or curing cancer.")

Understandably, doctors find it hard to take when their treatment paradigm is challenged. "They will be very troubled by the patient's decision and will keep trying to get them to change their mind," says Madjar, who has interviewed oncologists about their experiences with patients who have forgone treatment. "Others will be concerned to cover themselves in case the patient or the family later decides to sue for inadequate care. Others take a very detached view and simply rationalize that, having given the options to the patient, they have no further responsibility."

A New Collaboration
In an ideal world, instead of debating the merits of a particular treatment, a doctor would take the opportunity to initiate a different but equally important conversation about how patients want to live for however much time they have remaining. According to Holly Prigerson, director of the Center for Psycho-oncology and Palliative Care Research at the Dana-Farber Cancer Institute, who has done long-term surveys of how people cope with cancer, one big predictor for quality of life is the therapeutic alliance between doctor and patient. This is because a good relationship helps ensure that, even when patients forgo chemotherapy or radiation, they continue to have access to pain medication and other treatments that help keep them comfortable and functional.

Such palliative regimens are important for patients who are still pursuing treatment too. In a surprising study of people with advanced lung cancer, published in the New England Journal of Medicine last year, those who were given palliative care early in the course of their treatments not only reported a much higher quality of life and were much less depressed but also survived on average almost three months longer.

Reflecting on his patient, the widow who had responded to antidepressant medication but refused surgery and chemotherapy for her lung cancer, psychologist Sean Ransom now says, "At the time, it felt like a failure, but I would treat her much differently today than I did then. Sure, I'd assess for depression and try to help her feel like fighting, but I'd also ask her about her conceptualization of life beyond the bounds of mortality and how that might have factored into her choice to not have treatment. I'd ask what she thinks things will be like when she moves beyond this world, if she thinks she'll see her husband again and what that might be like for her. Perhaps then I'd really understand more about why she made the choice she made and what I needed to do to be of greatest service to her — regardless of what that service needed to be."