I was a successful health care lobbyist and grant writer before I lost my job from my law firm. Rather than let it devastate me, I embraced the sense of relief I was experiencing and took it as an opportunity to do something else with my life (which I had been seriously considering for years).
I did start a diligent (half-time) job search, while taking a brief sabbatical to work on some start-up ideas and side projects I was interested in pursuing. However, this “reset” time was cut short by unexpected and significant illness and health issues for both of my parents, who were reasonably young. Almost overnight, I found myself in the position of being a health care “navigator,” helping them through the byzantine and extraordinarily complex U.S. health care system.
With my background as a health care lawyer and congressional staffer and with my significant experience dealing with hospitals and health care systems, I became the primary caregiver, taking my mom to the Cleveland Clinic and my dad to University Hospitals regularly — two parents, two hospitals. It was a lot; even more than I could have imagined.
There was no time for job seeking, let alone having a job — and if I did have one, based on the “pressure cooker” jobs of my past, the Family Medical Leave Act would certainly have come into play. And there was also no time for personal reflection, mapping out my mid-life change of professional course, or even breathing. I’m sure this scenario is familiar to many in middle age, who may also feel overwhelmed and alone as caregivers.
Five weeks ago, my dad went into University Hospitals for pancreatic surgery, and we were informed that the standard inpatient stay after this type of procedure was three to five days. The surgery, however, revealed early stage pancreatic cancer. Although the procedure itself was considered successful, numerous post-op complications (kidney- and heart-related, pneumonia and now sepsis) followed.
As I write this, my dad is still in the hospital but has been transferred to Akron General Cleveland Clinic — a health care system with a completely different system for electronic medical records. This has resulted in still more barriers to communication between key caregivers, institutions, etc. I have spent the last month meeting with doctors and nurses, gathering information, asking questions and making major decisions, sometimes quite rapidly.
I have learned a ton, and it’s been an invaluable education in this day and age, but it’s been a daunting process, even for someone with a strong health care background.
My dad has had many visitors over the past weeks. One nurse told me he was very lucky; he said some people on his floor have no visitors, ever. One day in the lobby, I met a man whose mother also had pancreatic cancer. He told me she had two sisters who were able to visit briefly, but they lived out of town and had to return to their homes and lives. He was her only child, and employed full-time and taking care of a young daughter at home.
It occurred to me that this patient needed a health care advocate. She needed someone who could be there for her, on call and nearby, to help understand and navigate the system and the myriad choices, decisions and base knowledge needed to manage the quality of one’s health and care. She needed an on-call advocate, with experience in 21st century health care and all of its nuances.
Just like that my next professional step crystallized, and I realized I was already implementing the “pilot” program for my next venture — while also helping in a meaningful way. I have set up my own business with a focus on assisting seniors and their primary caregivers with navigation of the health care system. I will help individuals and families with a range of details, from making patient appointments and preparing Medicare appeals for claim denials, to researching rehab centers covered by their insurance.
And I will not just help them navigate; I will advocate, inquire endlessly in search of valid answers, and do so with empathy and a deep concern and interest for positive patient outcomes.
While the doctors and nurses we dealt with during this recent health care journey were indeed compassionate, and the care my father received was excellent, the U.S. health care system is broken, complex and in need of further reform. I don’t see this happening anytime soon. So in the meantime I will do my part, until Congress does, to help patients in need find their way.
Dodd is formerly director of public affairs at Ice Miller and now the chief executive and founder of eldernavigator.com.