3:30 Thursday, Projects

First do no harm…

The 3:30 Project is a collaborative blog by three life-long friends: Maggie, Mary Margaret and Jillian. We have all had our own experiences with our health care system. This week, Maggie and Mary Margaret are reflecting on their perspectives on health care as a right and our societal duty to the sick.


Maggie

Just over three years ago on the day after Thanksgiving, my husband and I had a conversation with my in-laws over Skype. We talked about our holiday, our plans to visit over Christmas, and how nice it had been to see everyone at my sister’s wedding the week before. The next day, my father-in-law was admitted to the hospital through the emergency room. He had severe chest pain on the upper right side, and when he got to the ER my blood pressure was dangerously low and dropping. They couldn’t figure out what exactly was wrong, but his conditioned worsened quickly. That afternoon he was transferred to the Intensive Care Unit. The next day, my husband rushed to Atlanta to be with his family in case his father didn’t make it.

My father-in-law had contracted a rare condition called necrotising fasciitis, with an even more rare complication called blood sepsis. Necrotising fasciitis, which means flesh eating disease, is when a bacteria starts destroying your skin cells. His condition affects about 4 in every 1,000,000 people in the United States every year. 30% of those affected die. Blood sepsis is when the bacteria enter your blood stream and start destroying your blood cells and internal organs, whereby the mortality rate leaps up to 80%. My father-in-law started out in reasonably good health without any of the risk factors – a compromised immune system, cancer, drug use, etc. that tend to accompany this disease and make it harder for your body to recover. Still, he spent a terrifying month in ICU, another month hospitalized in step down and rehab units, and months recovering at home before he could resume his life.

Each day that he held on to life was a miracle. But when I think about that experience, there were many miracles that made his recovery possible. It’s miraculous that he got treatment so quickly, that he was in a hospital with an ICU equipped to perform the multiple surgeries he needed to remove necrotic (dead) tissue and that none of the surgeries had any disastrous complications. It’s miraculous that he had nurses and doctors who were willing to keep fighting for him even while the odds were so heavily against him. It’s miraculous that while his organs were failing he had machines breathing for him, feeding him, cleaning his blood, and catching his waste. It’s miraculous that he had a month of paid vacation and sick time, so his family had less financial hardship while he was recovering. It’s miraculous that he had the protection of medical leave so he could take six months off from work and still return to his job when he was well. It’s miraculous that he had health insurance without a life time cap, so that my mother-in-law never had to make a decision about his care based on whether or not it was “cost effective.”

When we talk about healthcare in this country, we use terms like pre-existing conditions, co-pays, deductibles, primary care providers, in-network coverage, referrals, etc. We sanitize our language and forget that we’re talking about people whose lives have been disrupted by injury, disease or chronic illness. We’re talking about people who need treatment, compassion, support and dignity.

When I think about how fragile our bodies really are, I am humbled. My father-in-law’s journey through illness and recovery reminds me that this could and probably will happen to all of us or someone we love. Maybe you won’t know one of the people who experiences necrotizing fasciitis and blood sepsis, but you may know one of the people who faces cancer, stroke, heart disease, multiple sclerosis, old age, lung disease or some mystery ailment that defies diagnosis.

We need to remember when we talk about the injured, sick or chronically ill people in our society that these people are not “bad people” who aren’t taking care of themselves. We’re talking about our neighbors, friends and family members. They’re just people who’ve done the best they can with their lives and deserve to have their shot at a miracle recovery.


Mary Margaret

“My understanding is that (the new proposal) will allow insurance companies to require people who have higher health care costs to contribute more to the insurance pool. That helps offset all these costs, thereby reducing the cost to those people who lead good lives, they’re healthy, they’ve done the things to keep their bodies healthy. And right now, those are the people—who’ve done things the right way—that are seeing their costs skyrocketing.”

-Rep. Mo Brooks, R-AL in an interview this week with CNN’s Jake Tapper

I wrote an entirely different post for this week—and maybe someday I’ll find a use for those other musings—but current events compelled a change of course. The scrambling effort to do something (anything!) on the long-promised issue of healthcare, led the US House to a vote repealing the Affordable Care Act (by no means a perfect piece of legislation), only to replace it with an even less popular, less promising bill. While my concern is tempered by the knowledge that any repeal or replace still has to make a long, slow journey through the US Senate before becoming law, I’m still deeply troubled by the action and its surrounding conversation.

Before people had a firm understanding of cellular biology, before powerful microscopes revealed viruses to the human eye, before science made firm the link between microorganisms and the spread of disease, illness and disability were commonly viewed this way: people fell sick because they were bad. In Dickensian London, the filthy, overpopulated neighborhoods along the Thames were ravaged by disease as punishment for moral depravity…as opposed to sewage-polluted water, tainted foods, and other environmental and microbial causes.

The idea has Biblical roots; Judeo-Christian tradition understands the infirmities and limitations of the body as a direct result of our sinfulness—our fallen human condition. As illustrated clearly in John’s Gospel, when right before Jesus miraculously restores the sight of a blind man, his disciples inquire: “Rabbi, who sinned, this man or his parents, that he was born blind?” The implication is that disability is punishment for “bad living”— he or his parents hadn’t gone through life “the right way.”

It’s a comforting fantasy to think we’ve evolved past ancient times, Pre-Victorian London, or the ideas that prevailed during this country’s AIDS crisis, with its widespread attitudes that homosexuals were dying and suffering as retribution for their sinful lifestyle. To hear a modern legislator equate sickness and medical need with moral failing actually reveals how little we’ve changed the conversation By this dichotomy, the healthy are righteous, the sick are undeserving, and the federal government must step in to protect the interests of the healthy and blessed “good.”

I don’t know exactly what role I believe government should play in healthcare, but I do know I vehemently reject my lawmakers carrying such toxic, misguided viewpoints into their decision-making. With all the talk about preexisting conditions, we must truly face the reality that we all have one—maybe call it our pre-existential condition. It is our humanness! Like the ancients, I also believe that we ail because of our sin, but I do not believe it is personal. Jesus does not lay fault with the man or his parents, yet the man was still born blind; so where’s the blame? Is the sin with the child who develops diabetes growing up in a poor neighborhood with little access to nutritious food, or is the sin more with the society that hasn’t equally prioritized certain populations and the health of its youngest members?

Representative Brooks, I certainly believe in personal responsibility, and I believe we are sick because of our failings, but I do not believe in the cause-and-effect personal relationship between goodness and health you describe. Yes, we are sick because we haven’t lived good lives. Also, our neighbors are sick because we haven’t lived good lives. Which leads me to my more important point regarding our policy makers and healthcare: if you can accept the collective culpability of a sin-sick humanity, you must also recognize the collective responsibility of that humanity to care for one another. If we all make each other sick, we must all play a part in making each other well.