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/oncologistare 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.
This time I had early breast cancer, likely caused by radiation treatment for my lymphoma. Because of my earlier cancer treatment, my surgical options were limited. More radiation following a lumpectomy was not advisable; the best course was a mastectomy. Even with a relatively proscribed number of options, decisions had to be made – single or bilateral mastectomy? If I were to have reconstruction, what was the most appropriate type? My years as an advocate helped me weigh the medical risks and benefits of surgery for my breast cancer. There was a low risk of recurrence – I chose single mastectomy. I wanted reconstruction, but only if it could be done with my own tissue; I did not want implants. My shared decision making with my breast and plastic surgeons was primarily limited to the framework in which those decisions were made – medical and cosmetic. To be honest, I think I made my decision without fully understanding the impact my choices would have on my quality of life. My surgeons and I discussed how the reconstructed breast would look and might feel, but not what that would mean.
I work for an organization, the National Patient Advocate Foundation, that is deeply committed to advocating for shared decision making and person-centered care, and I fully share that commitment. My own experiences as a two-time cancer survivor, however, make me very aware that this is not a simple formula.
Everything changes as you go through treatment and recovery. With my first diagnosis, my first and greatest fear was dying, and I think that’s a fairly universal reaction. All I wanted was for those two men in navy blazers – my father and my doctor – to tell me I was going to be OK. Only later, as I moved from being a patient in treatment to post-treatment survivorship, did I begin to think about other aspects of my life. Would I ever be able to have children, and what did I need to do to align my professional life with my refocused life goals? Three years ago, when I was diagnosed with breast cancer, I had a husband and two stepchildren who I love beyond words, and my concerns were very focused on their well-being and the impact of this new cancer on them.
As we work to advance person-centered care, I worry that we may forget how important the individual is in this process. It’s critical to leave room for everyone to find their own level of comfort in making health care decisions, and to understand how much and how often these choices evolve as lives and situations change.
As I’ve learned through my own experiences and from listening to so many other people facing serious illnesses, shared decision making is an open-ended, highly individual concept. With my treatment choice for breast cancer, I was lucky – what mattered most medically resulted in a good quality of life outcome for me. But we can’t rely on luck. If shared decision making doesn’t take into account all facets of what matters most to a patient, we risk care that may not be aligned with a patient’s health and life goals. The keys to all of this – the heart and soul of person-centered care – are trust and good communications on all sides. The goal is to have each person feel informed and comfortable with the choices they make at every step of their health care encounter.