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Episode 08 | Patient Advocacy | Kelly Donahue, Patient Advocate & Communications Expert
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Being a patient advocate is a high-stakes, high-stress job on which life or death literally hinges. At the age of 29, I was thrust into the world of patient advocacy when my then-fiance, Bryan, was diganosed with an inoperable brain tumor and given 6-12 months to live. Life as we knew it immediately stopped and became series of radiation and chemotherapy appointments, educating myself on brain gliomas, medication side effects, alternative therapies, nutrition, physical/speech/occupational therapy home exercises, ways to communicate with doctors, and figuring out how to keep all the doctors and their complicated titles straight. And wayyyyy down the list: How to take care of myself when life's rug has been pulled out from under me.
My guest today, Kelly Donahue, was thrown into the world of patient advocacy in April 2022 when her dad was diagnosed with Acute myelogenous leukemia (AML), which is a cancer of the blood and bone marrow. Ironically, prior to her father's diagnosis, Kelly spent years working as a mediator in the hospice system, helping families effectively communicate with medical teams on behalf of the patient. Unbeknownst to Kelly at the time, her professional background was preparing her for a very personal patient advocacy role to come down the road.
Kelly and I talk in-depth about patient advocacy, including:
- The importance of educating yourself on the patient's specific condition so you can go into appointments feeling confident
- Techniques and dialogue examples to communicate effectively with doctors and other medical professionals
- How to prepare for and what to bring to appointments
- Why speaking up is so important in advocating for your friend or family member
- How to find a medial team that works with your family's "personality"
- Why the medical team needs to earn the patient's and patient advocate's trust
- Why your doctor needs to be a patient advocate
- How to develop a reciprocal relationship with the patient's medical team
- How to have difficult conversations about wills, power of attorney, etc.
- How to manage fight or flight impulses and stay calm during the early days post-diagnosis
- Self-care techniques for patient advocates that work
- How life and relationships change as a result of being thrust into patient advocacy
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