Empowering Patients & Families

 Photography by Greg Miller
May 5, 2018

Why Am I Doing This? (Part II)

My sister and I navigated our parents through 10 years of serious illness and facilitated their end-of-life choices. That was my first experience with what it took to bend even a well-meaning system to the specific wishes of a patient and their family. I discovered that it was incredibly useful to be armed with medical knowledge, vocabulary, and experience of how the system works. I could make myself heard and advocate for my parents’ wishes effectively.

When we were advocating for my parents during the last 10 years of their lives, I also clearly saw that treatment decisions are only partly about the medical science. Good treatment decisions are fully informed decisions, where the decision-maker understands what the likely outcomes of the choices are—both potential benefits as well as harms. The optimal decision for one patient with a given condition may be quite different from another patient with the same condition, because each has different values, preferences and beliefs. Serious illness and end-of-life choices are not just medical choices; they are whole person, whole relationship(s), whole family system choices. Healthcare decisions cannot and ought not be made in a vacuum. It is difficult for even the most dedicated and well-meaning physician to take the time to explore the crucial aspects of a patient’s and family’s value system and beliefs that need to be integrated into and honored by their healthcare choices.

But a patient advocate can. So, I went back to school, specifically UCLA Extension, and completed the coursework for the Certificate in Patient Advocacy. I sat for, and passed, the examination prepared by the Patient Advocacy Certification Board. I founded Bellwether Care to empower patients and families and to help them articulate their deeply personal wants and needs so they may be integrated in their healthcare decisions and made manifest through treatment. I know from experience just how important that integration is. Also, it is one thing to know what you want; it is another actually to get it, particularly when dealing with our healthcare system. I also know from experience how lonely, how isolating, how exhausting, and how scary the experience of navigating the healthcare system can be. I don’t want people to go through it alone, not if we can help it. And we can.