Updated: Sep 30, 2020
I’m a patient advocate, and I’ve spent most of the last 20 years fighting for patient- and family-centered care in national laws and regulations, and in local practice. Prioritizing the needs of patients and families above all else. It is meaningful work to which I feel deeply called, and it is hard work that has at times involved going toe-to-toe in opposition to the House of Medicine and various health care interest groups.I’m proud that collectively, consumer advocates like me have changed the national dialogue to prioritize patient voices. I’m especially proud to have helped shape the future of medicine via the Shared Principles of Primary Care, the way we define patient engagement and patient-led efforts to access to digital medical records.
But I have regrets. Namely, I had no idea what working in this system was doing to you, our frontline clinicians — the humans we rely on for medical wisdom. Doctors, physician assistants, nurses, nurse practitioners, medical assistants, everyone.
Yes, it’s true that paternalism persists. Yes, it’s true that none of my primary care practices in the past 20 years have remembered my name or made me feel they have my back.
But now I see that when it feels like patients and clinicians are more adversaries than allies, it’s because the way the health care system is organized and financed is actually inhumane.
So why this change of heart?
Eighteen months ago, a primary care physician posed an intriguing question. He said: Clinicians are experiencing epidemic levels of burnout; patient dissatisfaction and lack of trust is at an all-time high. If it’s not working for either of us, why aren’t we organizing together to upend this hunk of junk? (Maybe not his exact words.)
I wasn’t sure whether patients cared about burnout, or “joy” in medicine. After all, “doctors make six figures,” and we all had to learn how to use a computer. I wasn’t sure joy was something clinicians actually deserved when many patients were struggling to feel heard and respected in their exam rooms. I had the squinty-eyes of skepticism. But I was willing to explore it.
And explore we did. Alongside another trusted patient advocate and a small group of experts, we developed a forum that brought frontline clinicians together with patients in their community for a three-hour facilitated conversation about the human impact of the health care system, and about the value of the clinician-patient relationship. We called it the 3rd Conversation, a nod to the idea of fusing the two separate conversations that patients and clinicians were having about their respective pain points in the system.
In four very different communities – an HIV/AIDS clinic in Atlanta, primary care practices in Maryland and Massachusetts, and a health system in Pennsylvania — we watched and listened with fascination (and some fear) as interprofessional clinicians sat knee to knee with patients from their community /clinic. They talked –as people – about what they want from the system and how they feel about it, exploring insights and experiences light-bulb moments of realization that profoundly impacted them personally and professionally. They – and we – came to see each other in new ways. It felt therapeutic and eye-opening. It felt thrilling, and healing.
And that’s how I came to know that I owed you an apology.
3rd Conversation events have taught me some important things that I hope will make you, clinicians, feel heard, and validated:
Your patients care about you personally; they have a deep well of empathy for your human condition.You and your patients want the same things from the system: more time together, more human connection, more freedom.There is an opportunity here to reinvent the way we work together, and the clinician-patient relationship itself. Not just during our visits and encounters, but in work to address the root causes of our collective circumstances in service of our common aspirations.
But there’s a catch: These feelings of bidirectional empathy, insight, and inspiration only come when you share your authentic self with patients. Whether that happens in the exam room or in an external forum, this is actually the source of your well-being and professional satisfaction.To put it bluntly: No one cares about your joy. They care about your pain. When you share this genuinely human and fundamentally emotive part of yourself, something special happens: Patients rise and respond from a different place within themselves to help, to understand, to heal. And it’s insanely inspiring.
I also suspect that this is the place from which we can create larger scale, enduring change that addresses burnout and collective wellbeing once and for all. Why?
Because you have real power. It may feel like all the agency is held by payers, regulators, and your C-suite. But You. Have. Power. And that power comes from sharing the very humanity you’ve been taught to hide, and which has been slowly eroding in this system.
I see you. I get it now. Patient frustrations are caused by the same system properties that are burning you out, creating depression, and even suicidal ideation. Same system. Different conversations.
If we are going to finally change this, it must be in a fundamentally different way than we ever have before — connecting and acting from a deeper, empathic place within ourselves. Less head. More heart. The place where we understand our needs, our common humanity, and our hopes. It means re-engineering how we engage decision-makers and policymakers from this same authentically human, empathetic place. Because if 3rd Conversation is any indication, once people access this part of themselves, their openness to change is infinite and immediate.
That is the rocket fuel for the work ahead. Reinventing and rebuilding our relationships. I, for one, can’t wait to do this with you.
Originally published August 13, 2019 at https://www.kevinmd.com