Hester Hill Schnipper, LICSW, OSW-C Program Manager, Oncology Social Work
APRIL 26, 2018
Desperation Oncology is a new term for me, and not one that I much like. It refers to the situation of a very ill patient who has exhausted all known treatments and is faced with "there is nothing more that we can offer you." But, it turns out that there is always something more--the critical question being whether it is something that has any chance of being helpful and won't diminish quality of life. This is an anguishing situation for many patients and families--and for many doctors. As some of you know, my husband is a medical oncologist, and I hear his distress at these moments. Committed to the oath of First, do no harm, he also appreciates that, as far as we know, we only live once and are dead for a very long time. When a patient and/or her family are desperate and pushing for something, anything that might extend life, very tough choices must be made.
A few days ago, I wrote about Difficult Decisions about Continuing Care, and today's offering is a pretty dramatic contrast to that essay. This is a story from The New York Times about doctors sometimes offering an experimental treatment to a patient without any real conviction that it will help. I understand the wish to try everything and to grant the patient's imploring wishes, but this feels like a very slippery slope. Another favorable argument is the possible acquisition of new knowledge and experience that may help others in the future. Clearly there are no easy answers, and every situation is different, but it again demonstrates what a poor job we as a society do in accepting death as a natural, albeit unwelcome and very sad, part of life. Back in the days of high mortality from infections and childbirth and illnesses that are now treated, back when everyone died at home, and the bodies were often prepared for honored in those same homes, and every family experienced painful losses, it was impossible to ignore the presence of death. It too often now seems that we try to hide it away, and this robs us all of the opportunities to participate, to learn, to love until the very end.
Here it is, and I would love to hear your thoughts:
‘Desperation Oncology’: When Patients Are Dying, Some Cancer Doctors Turn to Immunotherapy
Dr. Oliver Sartor has a provocative question for patients who are running out of time.
Most are dying of prostate cancer. They have tried every standard treatment, to no avail. New immunotherapy drugs, which can work miracles against a few types of cancer, are not known to work for this kind.
Still, Dr. Sartor, assistant dean for oncology at Tulane Medical School, asks a diplomatic version of this: Do you want to try an immunotherapy drug before you die?
The chance such a drug will help is vanishingly small — but not zero. “Under rules of desperation oncology, you engage in a different kind of oncology than the rational guideline thought,” Dr. Sartor said.
The promise of immunotherapy has drawn cancer specialists into a conundrum. When the drugs work, a cancer may seem to melt away overnight. But little is known about which patients might benefit, and from which drugs.
Some oncologists choose not to mention immunotherapy to dying patients, arguing that scientists first must gather rigorous evidence about the benefits and pitfalls, and that treating patients experimentally outside a clinical trial is perilous business.