When is cancer care "futile"?

There was an interesting article in this week's New York Times Magazine about Susan Sontag's last battle with cancer, written by her son. In it, he describes how, at age 71, his mother was told for the third time that she had cancer. Previously, when she was 42, she was diagnosed with a particularly nasty form of breast cancer, which had spread to 31 of her axillary lymph nodes, but she managed to survive. Later, in her mid-60's, she had developed uterine sarcoma and survived. This time would be different. This time, she developed myelodysplastic syndrome, which is usually a precursor to acute myeloid leukemia, a blood cancer for which the survival prospects are very dim for patients over 70. Ultimately the leukemia claimed her life, recurring after a bone marrow transplant.

The article is poignant in its portrayal of Sontag when she was told that the last possible treatment had failed and that there were no other potentially life-saving treatments at any odds,; in other words, when it dawned on her that she was going to die of her disease and there was no escape. The article also brought up a rather difficult ethical issue:

For doctors, understanding and figuring out how to respond to an individual patient's perspective - continue to fight for life when chances of survival are slim, or acquiesce and try to make the best of whatever time remains? - can be almost as grave a responsibility as the more scientific challenge of treating disease. In trying to come to terms with my mother's death, I wanted to understand the work of the oncologists who treated her and what treating her meant to them, both humanly and scientifically. What chance was there really of translating a patient's hope for survival into the reality of a cure? One common thread in what they told me was that interpreting a patient's wishes is as much art as science. Dr. Stephen Nimer, my mother's principal doctor, heads the division of hematologic oncology at Memorial Sloan-Kettering and is also one of America's foremost researchers in the fundamental biology of leukemia. As he explained it to me: "The fact is that people are never as educated as the doctor. You have to figure out something about the patient" - by which he meant something that takes both patient and physician beyond the profound, frustrating and often infantilizing asymmetry between the patient's ability to comprehend the choices to be made and the doctor's.

Still, the doctor's task here is not impossible. As Nimer put it: "There are risk takers and risk-averse. There are those who say, you know: 'I'm 70 years old. If I get another four or five months, that would be fine.' Others say, 'You do everything you can to save my life.' Then it's easy. You can go straight into a discussion of what a patient wants."

For Nimer, as for Jerome Groopman, the ethical challenge, vital for a doctor to recognize and impossible (and ethically undesirable) to deal with formulaically, comes not with the 30 percent of patients Nimer estimates know for certain whether they want aggressive treatment or not, but with the "undecided" 70 percent in the middle. As Nimer told me somewhat ruefully, the doctor's power to influence these patients, one way or the other, is virtually complete. "There are ways to say things," he said. "'This is your only hope.' Or you could say, 'Some doctors will say it's your only hope, but it has a 20 times better chance of harming you than helping you.' So I'm pretty confident I can persuade people." Groopman, in his clinical practice with patients like my mother, patients for whom, statistically, the prognosis is terrible, at times begins by saying, "There is a very small chance, but it comes with tremendous cost."

This is an important point. When the patient knows what he or she wants to do, the oncologist's job is usually easier, particularly if the patient decides that heroic measures to try to prolong or save life are not desired. It may not be easier if the patient wants to fight to the end, even though there is no hope and the treatments required are painful and resource-intensive, but many of these patients will actually change their minds when informed of just what the consequences of their desire to fight on would be. Very early in the history of this blog, I discussed the problems and pitfalls of operating for malignant bowel obstruction in patients with unresectable cancer or carcinomatosis as the one area where surgeons confront this reality with their patients. We know that operating won't prolong life and has only a very low chance of ever restoring the ability to eat solid food, and we also know that the morbidity and mortality of such operations is high. Some patients will decide immediately that they don't want surgery; others will demand it, even at high risk.

The majority of patients, however, as pointed out in the article do not know what they want or what they should do. It is in these cases where what the doctor says makes a huge difference. In essence, most doctors can persuade most patients to take whatever course they want in the face of a likely terminal diagnosis. If we tell them that attempting curative treatment is "medically futile," most will not opt for such treatment. Those that do not will seek other opinions, but if the consensus of the medical opinions they seek is that attempts at curative treatment are "futile," then most will usually accept that. Others, still desperate for a cure, might seek out quacks like Hulda Clark.

Of course, the problem here, as is pointed out in the article, is defining what is "medically futile." Different doctors will define it differently:

But this does nothing to change the fact that it seems almost impossible to develop a satisfactory definition of what is and is not medically futile. What is the cutoff? A 10 percent chance of success? Five percent? One percent? When does the "very small chance" my mother's doctors bought at the "tremendous cost" in suffering that Groopman described for me become so infinitesimal as to make it no longer worth trying?

I have found no consensus among the oncologists I have spoken with in the aftermath of my mother's death, and I don't believe there is one. There are those who take a strong, consistent stance against not just such treatments but also against the general orientation of American medicine, particularly oncology, toward doing everything possible to save individual patients, no matter how poor their chances. These doctors seem inspired by a public-health model based on better health outcomes for communities rather than individuals, viewing it as the most moral and the only cost-effective way of practicing medicine. This view, often associated with the work of the medical ethicist Daniel Callahan, is increasingly influential.

Part of the problem is, of course, that there are limited resources, and the public health question is whether we should be putting so many resources into "hopeless" cases. The reality is that Sontag underwent a bone marrow transplant only because she had the money to pay for it if her insurance company didn't come through. She had to put up a $256,000 deposit before the Fred Hutchinson Cancer Center would proceed to treat her. Only a small percentage of the population could afford that; anyone of lesser means would have had to fight his insurance company while precious time ticked away, making a tiny chance infitessimal.

But the real problem here is that the areas where advances are most needed are exactly in these "futile" cases. Advances are made when doctors and their patients push the envelope and try to cure diseases that, at the time, have a very low (or seemingly nonexistent) chance of cure, sometimes at high cost, both in money and in risk. This leads, for example, a few surgeons to do enormous operations and infuse intraperitoneal hyperthermic chemotherapy (hot chemotherapy in the abdomen) to treat patients with diffuse gastrointestinal malignancies growing on the peritoneal linings of the bowel. It also leads oncologists to do bone marrow transplants and other high-risk procedures. Proposing such procedures is an ethical mine field. It's very easy for the physician to delude himself into thinking he is doing the best thing for the patient so much that he shades what he says, overstating the hope and understating the risks. Because the patient naturally does not want to die, except in the cases mentioned above where the patient knows what he wants, the physician can, if not careful, lead the patient into a risky course of treatment when, if the patient knew the true likelihood of success and the suffering that course of treatment would cause, he very likely might decide that the best thing is hospice and palliative care to let him get his affairs in order and spend what time he has left in as much comfort as possible. Patient autonomy is paramount here, but making sure it is respected is much harder said than done.

Finally, another point the article made hit home for me, and that is the optimism of cancer researchers. Like many researchers, I believe that most cancers can be overcome. Unlike, however, the Director of the NCI, I'm not so optimistic that I believe we can "end suffering and death from cancer by the year 2015." The advances in genomics, proteomics, and targeted cancer therapy are already providing better treatments with fewer side effects than anything in the past. Advances in surgery and radiation therapy are making possible the local treatment of tumors that could not be approached in the past. But it is not yet enough. Even though the fruits of molecular research emanating from our laboratories gives me great hope for the future, today I still sometimes have to fight to prevent myself from letting nihilism take hold when I confront a patient with an advanced cancer and a slim hope of survival. All of that hope and optimism that I have means nothing when confronting a patient for whose disease my art offers little.