By Connie Zuckerman
Every once in awhile, the stars align and fate delivers you exactly what you need. For the team at agebuzz, the new arrival of Contributing Editor Julie Buyon is exactly that: a smart, experienced, and savvy patient advocate with important wisdom and knowledge to share with agebuzz readers! Recently I had the chance to ask Julie some questions about her background, personal and professional experiences, and passions so that agebuzz readers will know how lucky we are to have Julie’s insightful contributions as a new Featured Blogger and Contributing Editor.
CZ: Julie, what is your educational and professional background? What types of positions have you held, and issues have you worked on, prior to joining agebuzz as a Contributing Editor and Featured Blogger?
JB: I hold a BS in Communication Studies from Northwestern, an MA in Health Advocacy from Sarah Lawrence College as well as certificates in Bioethics and Medical Humanities and in Bereavement. I made a career switch after working in premium cable TV for over a decade and went to grad school in Health Advocacy. My focus has always been on serious, complex and life-limiting illnesses. I have worked in several hospitals, including as part of the palliative medicine team at a hospital in the South Bronx, NY. For most of the past 8 years, I have worked with ALS families as well as helping develop community programs about advance care planning.
CZ: How did you come to have an interest in the topic of patient empowerment and patient advocacy?
JB: My mom passed away from lung cancer 21 years ago, and 15 months later I was diagnosed with cancer for the first time. (I am a 3-time cancer survivor — the first two times were not fun enough.) I was acutely aware of all the advantages we both had throughout our illness journeys in terms of education, great insurance, family support and access to great doctors. I thought “What is this like for people who don’t have some of the supports?” I was fortunate to find a graduate education that helped me address some of those issues.
CZ: What has been your personal experience as a patient dealing with the health care system? What worked well for you and where did you encounter problems?
JB: That is a huge question! I would say a key lesson I have learned is that it’s vital to do some research and ask a lot of questions. Remember that smart and experienced physicians can reasonably disagree on a diagnosis and treatment, and you need to make an informed choice that is right for you. We must also ask that our providers be humble — regardless of the disease, what physicians know is absolutely dwarfed by what they don’t know. Give your physicians permission to acknowledge that. We’re on a journey together.
CZ: With your background and experiences, what do you see as the most challenging hurdles for older adults and their families when navigating the health care system? Where are the pitfalls that they need to prepare for?
JB: Healthcare is really fragmented and I think it’s vital to have a primary care physician (PCP)- and, as we age, that person should be a geriatrician – whom we trust and who has a holistic understanding of us as a person. An illness experience (be it serious or minor) is merely a chapter in our individual story – your primary care physician can’t help make sense of that chapter without having “read” the whole book that is you. Your PCP should ideally understand what is important to you as a human being – your goals and values – and can then partner with you as you navigate various specialists as well as coordinate your care. In terms of pitfalls, I think there are two that really stand out. First is when you don’t work with a healthcare team that understands your age and how that impacts your care. As parents, we only send our kids to pediatricians because we know their bodies respond to things differently than adult bodies — the same is true for seniors. Find a good geriatrician! Second, communicating your goals and values to both your physicians AND family members makes everything better. It helps you get the treatment you want and not get treatments you don’t want. It helps you remain independent as you age, which is something most of the seniors with whom I have worked want.
CZ: Can you share either a personal or professional anecdote that demonstrates the importance and value of being an informed patient and having a patient advocate at your side?
JB: The second time I was treated for cancer I had a long (8.5 hours) complex surgery, after which my pain was poorly controlled. My surgical team was unwilling to have the hospital’s pain specialist see me, so I needed to call upon professional advocate colleagues to make that happen. Once I got that in motion, a pain specialist was in my room within 45 minutes, nearly 12 hours after I had started complaining about the pain. I don’t accept “That’s the best we can do” – I demand better.
CZ: What would be the one key piece of advice you would want every older adult and family caregiver to keep in mind when going through an illness and dealing with health care providers?
JB: Think about your goals and values and communicate them to physicians and family. EVERYTHING that is done medically should be in the service of helping you meet your goals.
CZ: Any other personal or professional insights you’d like to share?
JB: Being sick stinks. Try not to be, but if you can’t avoid it, consider making your goal be that the illness does not interfere very much with how you live your life. Healing is not synonymous with cure.
CZ: Finally, what are your non-health care passions? What do you love to do with your spare time? What makes you want to get up in the morning and power through your day?
JB: I have been a potter for 30 years and have a studio with 34 other fabulous artists at a wonderful clay art center. It makes me happy and keeps me somewhat sane!