End-of-Life Choice, Palliative Care and Counseling

When the Patient Knows Bestby Sonja

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by Theresa Brown
The New York Times
January 19, 2013

In late October 2010, Amy Berman, a registered nurse and a senior program officer at the John A. Hartford Foundation in New York City, received a diagnosis of Stage 4 inflammatory breast cancer. This Stage 4 cancer is always metastatic, meaning it has spread to other parts of the body. There is zero probability of a cure, though five-year survival rates vary for individuals.

Knowing this hard diagnosis, Amy was clear from the beginning that she wanted a “good quality of life for as long as possible,” and she found an oncologist who supported that choice. But she also wanted to confer with a known expert on her specific type of breast cancer and, with the encouragement of her doctor, traveled to get a second opinion.

She found one, but pretty quickly, Amy knew she did not want this doctor directing her care. He asked her nothing about what she wanted from treatment. He recommended chemotherapy, mastectomy, more chemotherapy and radiation — a regimen that he uses for “all my patients.”

Amy did not want to be one of “all my patients.” She wanted to be herself, and her strong feeling was that such aggressive care would not allow her remaining time on earth to be well spent. As is typical of many cancer patients, she would rotate among treatment rooms, hospitals and radiation oncology centers, most likely enduring chemotherapy-induced nausea and vomiting, postoperative pain, extreme fatigue, hair loss and radiation burns — with no guarantee that any of this physical suffering would extend her life, much less ensure her quality of life. She declined the treatment.

Unfortunately, Amy’s example is an exception: too often, patients don’t always grasp the trade-offs inherent in health care choices. Our own understanding of risk-benefit may be faulty or clouded by emotion. We all want to believe the most up-to-date treatment is always the right course of clinical action; that’s the meaning, after all, of “modern medicine.” And health care providers often laud the benefits of treatment without fully discussing the risks.

In oncology, my field, any serious diagnosis almost inevitably leads to the recommendation to treat, treat, treat. As clinicians, this satisfies our need to help, to do something about this hard disease. The financial incentives in modern medicine also encourage aggressive treatment. And then there’s the fact that no one wants to die.

All those forces keep doctors much quieter on the subject of risks than benefits. But what a disservice that silence does to our patients, each of whom, like Amy, is an individual and wants to receive care on her own terms.

Such difficulty in seeing one’s options clearly aren’t limited to oncology and end-of-life care: they face us from birth. When I was 33 years old, I became pregnant with identical twins. Because of my age, our medical team wanted to test for genetic abnormalities, and amniocentesis (in which a needle is inserted into the amniotic sac to extract a fluid sample) was recommended. But the risk of miscarriage from amnio increases with multiple births, though by exactly how much is unknown.

To my husband, an astrophysicist, the numbers told a clear and compelling story: the risk of miscarriage outweighed the benefit of discovering a genetic problem. I, however, not yet a nurse, was inclining toward the amnio because my twin pregnancy had been such a shock; any additional information seemed worthwhile.

“That’s not how probability works,” my husband explained. One surprising turn — twins — did not make a genetic problem more likely. But that’s not how the mind works; we see causality where it doesn’t exist. Once I got beyond that easy mistake, it was easy to say no to amnio.

Afterward, our health care team accepted our decision to decline. No one even pushed back with a well-meaning “Are you sure about this?” We were, and they let it be, and our twins were born healthy. But I also learned how easy it is to let an uninformed, gut reaction drive decision making as a patient.

I was lucky to find a health care team that talked honestly about risks and benefits, then sat back and let the patient decide. So was Amy: she now gets palliative chemotherapy, which keeps her disease under control but doesn’t aggressively try to beat it, and a drug called Zometa to help her bones stay strong. For her, the known risks of full-bore cancer treatment were not worth the — in her view — dubious-at-best benefits.

“I still feel great,” she told me recently. Last June, she climbed the Great Wall of China “for the second time” to celebrate being alive and able.

Amy’s most pressing question about possible treatments was: Would the arduous and exhausting side effects of aggressive cancer therapy be balanced by real benefits?

She answered no, but none of us really knows what we would do in such a situation. That’s why we need our caregivers to talk to us, giving each patient the opportunity to understand the treatment trade-offs in a difficult pregnancy, or even when standing in the shadow of death. Amy’s courageous decision was all about quality of life over quantity: “I’m not trying to squeeze one more day out if it’s a bad day.” All patients should all be able to make the same kind of choice.