When Healthcare Became Personal

The People Beyond the Workflow.

For much of my career, healthcare was something I helped build. I worked alongside nurses, care managers, and clinical leaders, translating complex healthcare programs into technology that supported the people coordinating care, managing benefits, and helping members navigate the healthcare system. I believed deeply in designing products that reduced unnecessary complexity, made work more efficient, and gave those teams more time to focus on the people they served. I understood healthcare from the perspective of the people working within it. What I had never experienced was healthcare from the perspective of the family trying to navigate it.

That changed in 2019 when my father was diagnosed with advanced liver cancer.

Like many families facing serious illness, we quickly found ourselves moving between specialists, emergency rooms, treatments, insurance questions, medical bills, and decisions that seemed to become more difficult every week. Looking back, I remember very little about the individual forms, phone calls, or administrative tasks. What I remember is the constant feeling of uncertainty. Every conversation introduced another opinion, another treatment option, or another decision I didn't feel qualified to make. Every bill raised new questions about whether insurance had processed it correctly, whether it should be appealed, or whether I had misunderstood something. Every physician genuinely wanted to help, yet many approached my father's care from a different perspective. Instead of creating clarity, each interaction seemed to introduce another layer of complexity.

As his condition worsened, our lives settled into a difficult rhythm. Whenever he became critically ill, I would rush him to the emergency room. After receiving fluids, medication, and supportive care, he often looked dramatically better within a day. Each time, I desperately wanted someone to tell me what had changed and what we needed to do differently so it wouldn't happen again. The answers never seemed to provide the certainty we were searching for, and we would return home knowing that, eventually, the cycle would repeat itself.

One morning, I was helping him get dressed when he became increasingly frustrated because he insisted his socks were his underwear. Until then, I had explained away many of the cognitive changes I had noticed as part of getting older, the side effects of treatment, or simply the exhaustion that accompanies serious illness. That morning made it impossible to ignore that something much more significant was happening.

When conversations began shifting toward hospice care, I struggled to understand what that really meant. Hospice wasn't simply another healthcare service. It required us to change the question we were asking. Instead of asking how we could keep my father alive, we had to begin asking how we could care for him during the time he had left. At the time, that didn't feel like choosing a different kind of care. It felt like accepting that the fight was over. Everything in me wanted to keep searching for the next treatment, the next specialist, or the next possibility that might somehow change the outcome. Stepping away from that hope felt less like making a medical decision and more like abandoning someone I loved.

Looking back, I understand that the transition to hospice wasn't about giving up. It was about recognizing that our priorities had changed. But that understanding only came with time. While we were living through it, no one handed us a roadmap explaining when it was time to stop pursuing treatment and start focusing entirely on comfort. Like many families, we were trying to navigate one of the most difficult decisions of our lives without ever having faced it before.

What I didn't expect was how profoundly the experience of hospice would change not only the way my father was cared for, but the way I experienced caregiving itself. I felt, for the first time in months, that someone was helping us carry the burden. A hospital bed arrived at my home when we needed one. A wheelchair was delivered without weeks of coordination. Medication became accessible without another series of phone calls. When something changed, I knew exactly who to call. When I had questions, someone answered them. When I felt overwhelmed, there was a counselor who helped me understand not only what my father was experiencing, but what I was experiencing as his caregiver.

None of those resources changed the outcome, but they fundamentally changed our experience. Instead of spending my energy trying to navigate the healthcare system, I could spend it with my father.

I understand why hospice works differently. Its purpose is fundamentally different from curative medicine, and many of those services exist because families are approaching the end of life. But living through that experience left me with a question that has stayed with me ever since.

Why did compassionate coordination become so much easier only after we had accepted that my father was dying?

I don't pretend to have an answer.

It wasn't until several years later that I began to understand how deeply those experiences had stayed with me.

Most of the individual conversations have faded with time, but one never did. One evening during my father's final weeks, he sat up in bed, looked directly at me, and quietly said,

"I am dying, and I don't know what to do."

I wish I could tell you I found exactly the right words. I didn't.

After stumbling through my thoughts, all I managed was, "I know, Daddy. I don't know either." He looked at me for a moment before quietly lying back down.

I carried his words with me for years, wishing I had found better words of my own or simply told him how much I loved him. For a long time, I thought that conversation haunted me because I hadn't found the right answer. Looking back now, I think it stayed with me because it represented something much larger. In that moment, I believed it was my responsibility to somehow make the process easier for him. I had poured every ounce of my time, energy, and love into caring for my father, yet when he asked me one of the most human questions a person can ask, I had nothing to offer except that I didn't know either. I wasn't unprepared because I didn't care. I was unprepared because, like so many families, I was trying to navigate extraordinary circumstances without the emotional capacity to absorb one more complication—or the guidance to understand what either of us was experiencing.

It would take me years to realize that there probably weren't perfect words waiting to be found. What mattered most was that he wasn't facing that moment alone.

What took much longer to understand was that I had carried that experience with me into every part of my life—including the way I thought about healthcare.

Today, I have even greater respect for the clinicians, providers, health plans, and countless professionals working within the complexity of our healthcare system. Living through that experience didn't leave me with simple answers, but it permanently changed the questions I ask. What stayed with me wasn't simply the quality of the care we received. It was the difference between spending my time navigating a fragmented system and spending my time being present with my father.

That realization did not happen immediately. During those months, and for quite some time afterward, I wasn't reflecting on what the experience meant.

Caregiving leaves very little room for reflection.

Every day was spent solving the next problem, making the next decision, and simply trying to keep moving forward. It wasn't until several years later that I understood how profoundly those experiences had shaped me. I had spent so much energy trying to get through each day that I never allowed myself to recognize what carrying that weight had done to me.

When I eventually returned to the healthcare work that had always felt familiar, I realized my perspective had quietly changed. Earlier in my career, I naturally focused on the clinicians, nurses, analysts, and operational teams using the systems we built. I still care deeply about making their work easier, but I now think just as often about the people those teams are ultimately serving—the caregiver trying to understand conflicting recommendations, the family struggling to absorb one more piece of information after weeks of uncertainty, and the member waiting for an authorization while wondering whether time is running out.

Most of those people will never see the products we build. They'll never know the conversations that shaped a workflow or the technical decisions behind a particular feature, but they live with the consequences of those decisions every day. Healthcare technology cannot remove the pain of serious illness, nor can it eliminate grief, uncertainty, or impossible choices. What it can do is reduce unnecessary burden so clinicians can spend more time caring for patients, care managers can focus on supporting members, and families can spend less time navigating systems and more time with the people they love.

That perspective now shapes every product I help build. Whenever I find myself discussing workflows, analytics, artificial intelligence, or digital transformation, I try to remember that somewhere beyond every requirement, every process, and every technical decision is a person carrying a burden I may never fully see. I still believe healthcare products should be efficient, scalable, and technologically sophisticated. But I now believe their greatest responsibility is something much simpler: helping people navigate some of the most difficult moments of their lives without adding to the burden they are already carrying.

Behind every workflow is a person, and behind every person is a story we may never fully understand. I believe the responsibility of healthcare technology is to honor both.