What do Patients Know

Hester Hill Schnipper, LICSW, OSW-C Program Manager, Oncology Social Work

JUNE 15, 2017

This is such a troubling story--and not one bit surprising to me. A recent article from CNN suggests that many, many cancer patients with advanced disease don't know about their reality In fact, a study published in the Journal of Clinical Oncology last year indicated that less than 5% of people with six months or less to live had an accurate understanding of their illness and that 38% of individuals in that situation could not remember ever discussing prognosis with their doctors.

Surely it is understandable that these are very difficult and painful conversations, but horrific harm is being done by not being straight and honest and clear with patients and their families. Not only does it make it more difficult for them to make the best decisions for themselves about treatments, but it makes it impossible to make the best decisions about life. For example: If someone has less than 6 months to live, and the doctor offers a chemo treatment that (the doctor knows, but does not make clear) is very expensive with big co-pays and has a tiny chance of bringing any benefit, would it make a difference if the patient really knew the facts? Maybe yes and maybe no. Some people with opt for anything at any cost and any teeny chance of extending life. Other people, however, would prefer to concentrate on quality of life and being with their families and friends instead of at appointments and maybe sick in the hospital. Let me remind you of the recent study from MGH that found that patients on hospice care lived longer than those who were continuing with chemo treatments for very advanced cancers--and, presumably, there was a pretty big quality of life difference, too.

Please do not misunderstand. I fully support an individual's right to choose, but it seems almost criminal to expect someone to make difficult choices in the absence of full knowledge and understanding. Sometimes it really matters. I have worked with parents of young children who were unaware of their very brief prognosis, so never had a chance to prepare their children for the loss or, in a few particular awful situations, to make plans for the children's care after their death.

At the risk of infuriating some of my colleagues, I also suspect that there is sometimes almost collusion between the doctor and the patient. No one wants to talk about it. The doctor is committed to doing everything and anything to fight back the cancer and does not want to admit how tiny the chance of success might be. The patient doesn't want to hear it anyway.

Here is the start of this story and a link. I would really appreciate your comments.

Despite options, many cancer patients are left in the dark

By Liz Szabo

In the past four years, Bruce Mead-e has undergone two major surgeries, multiple rounds of radiation and chemotherapy to treat his lung cancer.

Yet in all that time, doctors never told him or his husband whether the cancer was curable -- or likely to take Mead-e's life.
"We haven't asked about cure or how much time I have," said Mead-e, 63, of Georgetown, Del., in a May interview. "We haven't asked, and he hasn't offered. I guess we have our heads in the sand."
At a time when expensive new cancer treatments are proliferating rapidly, patients such as Mead-e have more therapy choices than ever before. Yet patients like him are largely kept in the dark because their doctors either can't or won't communicate clearly. Many patients compound the problem by avoiding news they don't want to hear.

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Above content provided by Beth Israel Deaconess Medical Center. For advice about your medical care, consult your doctor.
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