Your cancer treatment decisions aren’t about you – but they should be

By Michaela Dinan and Leigh Ann Simmons

There’s been a lot of discussion about the role of the patient in health care decision-making. Yesterday, results from a study of Medicare patients showed where you live and which doctor you see influences whether you receive elective surgery.  For example, if you have early stage breast cancer and live in Victoria, Texas, it’s very likely that you’ll have a mastectomy. If you live in Muncie, Indiana, not so much.

In a similar vein, Jessie Gruman analyzed her cancer treatment experience to discuss how health care decisions get made.  By all accounts, Gruman is what we’d call a “highly activated” patient. She’s engaged in her care because this is what she does for a living. She’s motivated by her diagnosis. And yet still, upon reflection of her experience Gruman identified moments where her physical state was so poor that she was unable to fully participate. In fact, she has almost no recollection of a doctor visit where they decided to stop her chemotherapy treatment.

So what’s going on?

Shannon Brownlee, the lead author of the Medicare study said their findings demonstrate the physician-centric nature of the U.S. healthcare system. She noted that, “….patient preferences are not always taken into account when medical decisions are made.” Who, us? We care about our patients. That’s why we keep telling them to eat right, exercise regularly, reduce stress, take their medication, and [fill in doctor’s orders here].

And therein lays the rub. We’re telling them. But what are they telling us?

Unfortunately, not much right now. But they could be telling us so much more. In fact, the Brownlee et al. Medicare study is a perfect example, because the Accountable Care Act provides for an element of personalized medicine that we believe is critical – a personalized health plan. The mere act of developing a personalized health plan with patients addresses several barriers we’re experiencing to good health in this country – understanding obstacles to adhering to prescribed treatment, identifying goals that are important to the patient to support strong engagement over time and so the physician has a frame of reference when making treatment recommendations, and  involving the patient in the process of care so they become invested not only in their health, but also in the partnership with their provider (hear, hear Dr. Zeiger).  Because let’s face it. It’s human nature for many of us to take action on something if we’re involved in the decision-making rather than if someone simply tells us we “have to” or “should” do it. Furthermore, in cases like Gerson’s, if the provider has a document that includes data on the patient’s preferences, goals, and challenges, making the decision to, say, stop chemotherapy when a patient is too ill to be fully engaged becomes more about the patient than it might otherwise.

So let’s start making it about the patient. Bring them into the fold. Recognize they are experts on themselves. Involve them in the decisions about their care. And then we’ve truly entered the realm of personalized medicine.

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