A Call from the Kingdom of the Sick

My quietly brilliant, exceptionally strong mom passed away three months ago from stage 4 lung cancer (everyone asks: she was not a smoker). I moved home to Indiana to partner with my dad to support her care. We had a painful, depleting 28 months. Mom left this world three days after my son was born. She pulled herself out of morphine fogs to hold him every day. On bad days that feels like a poetic injustice and on good days (which is most days) it feels like a miracle. We were all with mom during her transition.

As "caregivers," dad and I pulled back from a world that meant well but didn't get it. Susan Sontag, an intellectual who philosophized about her own illness while dying of cancer delineates two worlds: the "Kingdom of the Sick" and the "Kingdom of the Well." She shows us that the language we use reveals our culture's prejudices towards sick and dying people. In healthcare, we use neutral terms like "lived experience" and "caregiver." Although these words signal progress and tolerance, the blanket wording could be generalized to almost anyone. We dilute the meaning and the magnitude maybe because these terms feel less complicated than the messy, exhausting, painful realities packed into "lived experience." We structure care delivery around watered down conceptions of these terms. The people assigned to these words are healthcare's customers, but this industry continues to disconnect from the complexity of their lives. What a shame because we hide the grit, resilience, power, and heart that often comes with adversity, survival, and dying.

I believe this tendency towards simple, sheltered, neutral thinking is a root cause of what is "broken" in healthcare. Witnessing administration incompetency and career politicking play out remotely in my home office while mom was sick downstairs reinforced this for me. But there are everyday people who make healthcare work despite the systemic failures from the top. I've met PTs/OTs/SLPs, palliative care nurses, CHWs, hospice workers, physicians, and some special executives who prove we can make this work. I witnessed many of these true leaders work around rigidity within the system to compensate for our industry's failures. I've been one of those providers when I worked in behavioral health - it was no secret that billing and coding protocol created barriers to effective care.

The solution to fix the brokenness is elegant (not simple or safe or neutral): healthcare power-havers can invite diverse perspectives to co-design and co-decide on improvements to the model. Add patient advocates and frontline staff to the calendar invites. Involve providers who do the daily grind in the problem-solving agendas. Build teams with legit competency to unearth pain, anger, inspiration, recovery - the emotional experience that underlies seeking care - so that feeling is reflected in process and protocol. Architect care delivery structures to meaningfully respond to pain and resilience.

Democratize healthcare decisions. This can be done. Some of us already know how to do it. Consider that not doing so promotes an out-of-touch care model that neglects and harms people seeking help. Think about how avoiding these perspectives because we "don't have time or resources" might actually worsen prolonged and costly dysfunction. Examine whether your decisions prioritize your self-interest over common welfare. Recognize that if you don't have experience in what you're solving for, it is OKAY to acknowledge that and invite people who can help you. If you're a healthcare executive worth your salt, you should have the authority and persuasion to execute on this. At one point or another, all of us will cross kingdoms - the urgency is ever present.