No one could more fervently support the importance of shared decision making than I do. I passionately agree that patients need to be heard and involved in every aspect of their care, and that their personal understanding of their lives and goals and values trump everything else. I am also aware that this sometimes makes tough choices even harder.
This week I have met with two women who have been torturing themselves around decisions. One has completed adjuvant therapy for breast cancer and has been offered a chance to participate in a clinical trial for women who are thought to be at high risk for a recurrence. This trial involves taking the standard therapy (an AI) plus another drug for two years. She will have to have bloods drawn weekly, at least for the first few months and maybe longer, and may experience some side effects. And, of course, no one knows if this will turn out to be helpful to her or to anyone. After all, that is the whole point of a clinical trial: to get that information.
The second situation involves a newly diagnosed who is in the gray area re the need for chemotherapy. She had a small ER positive breast cancer, grade III, and an intermediate Oncotype score (a test that can help decide whether chemo will be useful in women like her). She is terrified of the risks of chemotherapy and equally terrified of a cancer recurrence.
For both of these women, it is vitally important that they feel part of the medical choice. Both have also commented that it was easier back in the days when the doctor just told you what to do. Most of us have no wish to return to those days, but they have a point.
This is a very good article from US News and World Report by my friend, Gwen Darien, about these issues. Here is the start and a link to read more:
What Matters Most: Navigating Shared Decision Making
It's an indelible image. I'm walking behind two middle-aged men dressed in navy blazers and khakis. My father, an internist from Wisconsin, and my new hematologist/oncologist are deep in conversation, a discussion about me that does not include me. It's the weekend after Thanksgiving 24 years ago, and I am 35 years old and newly diagnosed with non-Hodgkin lymphoma. I'm willing to follow them anywhere and to do whatever they tell me.
I don't know anything about cancer; what 35 year old thinks this will happen to her? I want to stay alive and get my life back, and I trust these two men to make that happen. I don't ask many questions. Very few questions are asked of me.
Twenty years later, I once again hear the words "'you have cancer." This time was different. After my first diagnosis, I changed my life and my profession, moving from the contemporary art world to dedicating myself to bringing forward the voices of people facing this and other serious diseases. I am very familiar with cancer treatment and self-advocacy. I am firmly committed to patients taking a central role in their health care decision making; I'm dogged in my goal to educate patients and families to advocate for themselves and take an active role in their health care
Read more: https://health.usnews.com/health-care/for-better/articles/2017-12-19/what-matters-most-navigating-shared-decision-making