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Be Your Own Health Advocate! If Your Doctor Isn’t Asking You These Questions, Ask Them Yourself

August 09, 2019

Be Your Own Health Advocate! If Your Doctor Isn’t Asking You These Questions, Ask Them Yourself

by Katrina Wells

At the 2019 American Society of Clinical Oncology (ASCO) annual conference, Atul Gawande, MD, well-known oncologist, journalist/author and public health researcher, gave the keynote address, entitled, “Will we be technicians or counselors?”

Challenging his peers to “Ask your patients the right questions early and often,” Dr. Gawande discussed how doctors tend to ask important questions only when patients are near the end of their lives, rather than asking them throughout the patient’s care.

At the core of Dr. Gawande’s message is the idea that what medical schools train physicians to do—to diagnose and fix problems and to prolong life—may not necessarily be what the patient desires. An experience with one of his own patients prompted Dr. Gawande to begin searching for answers about how oncologists identify and respond to the quality of life goals of their patients. A 2012 study Dr. Gawande highlighted illustrates this concept. Researchers showed that patients reported better quality of life and lived 25% longer when doctors discussed palliative care with them at first diagnosis. (Palliative care focuses on relieving the symptoms and stress caused by serious illness.)

Specifically, the researchers asked patients four questions:

  • What are your goals for your quality of life?
  • What are your priorities for your quality of life?
  • What matters to you most?
  • Where do you draw the line between what you will accept and not accept

By asking patients these questions, the doctors’ actions were more like counselors who want to know how patients feel rather than doctors who focus only on fixing medical problems. Dr. Gawande observed that these questions should not be reserved for a patient’s end of life. Rather, they should always be a part of helping patients live the best life that they can while also giving them the most time possible. “People have priorities for their lifestyle besides just survival,” he said. “These priorities change over time and differ from person to person.”

Dr. Gawande was speaking of patients with terminal disease; however, as an advocate, I feel that his message applies to other patients as well.  We in the high-risk community should be asking ourselves these questions and vocalizing our preferences to our doctors if they don’t initiate the questions. Dr. Gawande said that oncologists ask these questions of patients less than 25% of the time. He admitted that, “When we don’t ask, the care we provide is out of alignment with people’s priorities. The result of that is suffering.”

All medical decisions come with tradeoffs, and people weigh risks and benefits differently. In the hereditary cancer community, we are constantly weighing our choices. These questions can bring our own goals into focus and can then be shared with our care team. Thinking about your goals, priorities and what matters to you most can help you make treatment decisions that are right for you.

What matters most?

Hopefully, many of our own doctors were in that conference room listening to Dr. Gawande. But even if they did not hear his speech, we can hold them to a higher standard. First, however, we must know our own priorities, goals and needs before we can express them to our doctors. Sometimes it’s hard to take that deep breath and focus on what matters most. But we should all ask ourselves the “big picture” question.

Whether you are a previvor, survivor, or a person in treatment, what matters most to you and how can your health care team help to keep you in that focus? Is survival your primary goal? Does your quality of life or other issue take priority?  Write out your goals and discuss them with your doctor. If he or she is not receptive, remember that second opinions exist for a reason. Give yourself the permission and time to reassess your priorities if they shift over the course of your care. Share these changes with your doctor as they arise.

“In this moment when genomics is exploding, our choices are getting bigger,” Gawande said. “It’s only going to multiply the choices that you and your patients are going to have to talk about. We need a richer conversation about what living a good day really means and then making it possible.”

Let Gawande’s call to action be not just for those wearing the white coats.

Katrina Wells is an active FORCE volunteer and serves as one of the Southern New Jersey/Philadelphia Volunteer Outreach Leaders.  Katrina is a BRCA1 previvor. Katrina joined FORCE staff at the 2019 American Society of Clinical Oncology.  Katrina is the Editorial Director at "Healio."

Posted in: Hereditary Cancer - General
Tags: Hereditary Cancer , Patient Advocacy

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