He sat up in the bed, hospital gown intertwined with tubes and eyes full of wonder. The baby in his lap gurgled, hand in mouth, oblivious to her surroundings. And his wife? She laughed, lips spread with her first genuine joy in months. Just as he was amazed by the little one, we were amazed by him. He was alive.
A couple of weeks earlier, doctors said this wasn’t possible. He would never talk again, never remember who he was, never stand, or walk, eat or smile. In short, his persistent vegetative state would not allow him to be him.
But his eyes followed mom every time she moved through his room at the LTAC. No, they were GLUED to her. We noticed, and so did the nurses… but the doctors warned against hope. Hope could be a liar.
In contrast to the vibrant hues of burning bush and maple, our hearts were dreary one November morning. Maybe we were imagining the signs. Maybe the doctors were right after all. Pushing down fear with spoonfuls of soup at the deli next door to the LTAC, we steeled ourselves for another visit. Another letdown.
When I stepped into his room, something felt different. The air buzzed, expectant. He turned his head toward us and purposefully whispered, “Hi.” Then he smiled with what looked like pride and, in an instant, everything changed.
Later that day, one of his nurses told us that he had started speaking the night before. He’d been practicing, struggling to break out of his bodily freeze so that he could communicate with us. And now that he was free and we could prove he was “in there,” the doctors stepped up his various therapy sessions. Day by day, he came back to life.
That November we received nothing short of a miracle. And so I keep the picture of them — Dad, Mom, and sweet little Saya — as the background on my computer at work. It’s not how I want to remember him: my father, who chafed at the idea of doctors and hospitals, tied up in tubes and institutional linens. But I need to remember him this way. I need to remember the miracle.
Remembering the miracle every single day is the only way to counter the furious despair that comes from watching a miracle get squandered. Bent with rage at the systems — health insurance, veterans affairs, nursing home management — that doomed Dad to a slow and torturous death, the only thing that saves my soul is remembering the miracle that was, before it was ruined.
Because It WAS ruined. Rather than continuing to pay for high-quality LTAC care, Tricare downgraded him and had him placed in a one-star nursing home. ONE. STAR. One star out of five. And in that sub-par facility, where a small staff struggled to make do with long hours and meager resources, Dad went from sitting up, speaking and learning how to walk, to bed sores, sepsis and pneumonia — in the span of a month.
That one decision — a choice made because of an insurance company’s bottom line — was literally the difference between life and death. Though he died in October of 2014, he was killed in December of 2013 when they moved him out of the LTAC.
Clearly, I’m angry. I’m mad that they moved him before my sister, who lived out-of-state, could experience November’s miracle — she only got to see the decline that took place in the nursing home. I’m furious that, in retirement, my father was worth so little to the insurance company that serves veterans and active duty military families. And I’m downright livid about the ordeal we went through and the indignities he suffered.
But I’m not just angry on behalf of my family. The things we experienced don’t amount to an isolated incident in an otherwise healthy system. Rather, they are indicative of a healthcare (and, especially, a health insurance) system that is rotten through. I’m talking about a system in which analysts at a health insurance company get to decide what treatments are necessary, what drugs will be helpful, and, ultimately, whether someone lives or dies… a system in which profits are often more important than people.
And that’s just what happens if you have insurance. If you don’t have insurance, then the stakes get even higher (and the costs increase exponentially). Without insurance coverage and the reduced rates that an insurance company negotiates with healthcare providers, Dad’s first two months in the hospital would have cost close to half a million dollars, which means that a family who could not afford insurance would never have had the opportunity to experience a miracle in the first place.
Obviously, there is more to the system than this. The nuances of insurance are manifold and confusing for doctors as well as patients. There are ethical questions about how much should be done to prolong a life, who should make those decisions, and how families should be involved in the process. And there are a great many doctors, nurses, chaplains, administrators and other healthcare professionals who care deeply about their fellow human beings and do their best to work for health and wholeness.
But, as is sometimes the case, the larger system takes on a life of its own. In the process, people are literally dying — especially folks who live in poverty and must rely upon emergency rooms and urgent care centers for all of their healthcare.
In the midst of these realities, when I look at the picture of Dad smiling down at his new relative, I remember that:
- We can do better.
- We MUST do better.
- Miracles are possible.
Because I believe these things are true, I feel compelled to speak out and work for a better system and a better way. If Dad taught me anything, it was to risk doing/saying the difficult right thing instead of remaining silent. As a pastor rather than a healthcare professional, I’m not sure how much I’ll be able to help… but since when was that a good reason not to try?