A couple of weeks ago, my husband and I drove down to New Orleans to help with a one day large free clinic event. I heard Al Sharpton came. I’ve had mixed feelings about these large events and have not been to one before. Even though I know they can help change public perceptions, some have had significant problems with lack of good follow-up and were little more than glorified, showy urgent cares. Too many health problems, especially in adults, need more than one visit to get untangled. I did not like the idea of using worried sick people as political tools and not helping them much.
I was promised by one of my friends who helps organize this yearly clinic that it is different— tied into the existing free clinic network in New Orleans and a way to help get people connected to that network, in case they were not aware of it. We were not expected to finish solving each medical problem. We did have access to a few basic labs and a fairly extensive list of free prescription medications.
There were hundreds of adults and not many children. So many doctors volunteered that none of them had to really rush—a good thing, because connecting with a patient takes time. It appears that NOLA has done a fine job making sure parents know about resources for their children already. I saw a few young adults in my curtained-off exam space, but most adults whose charts I reviewed had medications listed I had never used and sometimes had not even heard of. My adult medicine colleagues have to keep a lot more pharmaceutical info in their heads. We pediatricians are rarely in a hurry to try out the latest and “greatest” drug on our patients.
Two of the children I saw announced they wanted to be pediatricians when they grew up. The mother of one future pediatrician said her daughter needed a checkup. I asked when the last checkup was and she replied it had been a month ago. I was confused—kids at school age only need a checkup, a preventive care wellness visit, once a year—so I asked what had happened that she needed one earlier. I wondered silently why she came to see a stranger instead of her daughter’s own pediatrician.
It turns out the mother had been laid off and could not afford to pay for COBRA extension of her family insurance policy. She had a new job already lined up which would not start until a few months later. She was there partly because the lack of insurance had disoriented her—she wanted to be sure “nothing was wrong” with her daughter that might have shown up in the last month. Being uninsured is scary, go figure! She also had a prescription medication her daughter only needed in case of allergic reaction and needed a school form to authorize use. Without insurance, she felt her relationship with the prior doctor was severed, and she didn’t know how to get the form done. She hadn’t brought a form and this wasn’t something the clinic had anticipated needing.
I was able to tell her about the available pediatric services for her child. Both mother and daughter seemed to want to talk a little. They needed a sense of connection and the reassurance that somebody cared what happened to them, even if it was someone they would probably never see again. So we talked about getting good sleep, eating vegetables, what it is like to be a pediatrician. I hope our encounter will be a good memory for that girl and that she will find it helpful if she joins my profession one day.
All the other patients I saw, adult and child, had already been seen in the free clinics. So why did they come and sit in line with hundreds of sick people, already having access to care that was open for appointments at the same time? In each case, it appeared to be due to a basic sense of disconnection. There was free care, yes, but none of them seemed to view this as “real” medical care. They could not remember the names of the doctors they had seen, and they did not understand what they had been told. They had a nagging sense that maybe there was something else wrong that the free clinic had missed, and they were looking in one of the most transient settings possible—even an ER is still there the next day!— for personal, meaningful care.
None of them had problems that could be quickly and easily resolved. They all needed workup I could not do at the temporary clinic, surprising to me because generally in a day I order very few labs and x-rays. But mostly they needed a personal relationship with a healthcare giver they trusted, whose name they knew, who understood their particular histories, who—dare I say it—loved them.
I tried as best I could to give my transient but loving presence, my full attention of one human to another in those encounters, in hopes it would somehow be meaningful. I knew it was not enough.
This to me is what we are most lacking in our current health system—care. Insurance coverage won’t fix this. In fact, if we really had given tending and attention to care at the core of medicine, all along, I doubt if we would have come to such a pass where insurance even mattered so much.
There’s a trend in the last several years to champion “medical homes” or “health homes”, a concept originally named by pediatricians back in 1967. The theory sounds good, but the application has been warped into the medical version of “No Child Left Behind”—an attempt to codify what personal care means. In that process of codification, we have increased the impersonality of medicine. Specialty groups and certifying organizations have their own checklists to use as measures of home. There is an insistence that the achievement of a standardized home (oxymoron, anyone?) should result in extra payment to providers as well.
By quantifying the medical home, we are destroying it. We are increasing homelessness in medicine. We have monetized things that used to be just part of the relationship, like returning a phone call. We are told that left to our own motivation, we will not do our best for patients—we must be bribed and prodded. Doctors and patients both are becoming seen as interchangeable, like dollar bills without individual character.
We are not interchangeable. No human can be replaced by another, in the real world fast becoming a shadow of the codified one.
On the way home from New Orleans, I asked my husband whether it mattered to him if he knew his doctor well and had a personal relationship, or if he didn’t care as long as he got the correct service performed. He said he didn’t care who did it, as long as it was done right. When I asked him if that changed thinking about our (now adult) children, he instantly said it did—he would not trust a doctor with them who did not have a personal concern for their wellbeing.
I’m not sure I believe he really feels so impersonal about his own care. Because I’ve heard him tell stories about Old Dr. H, the country doctor where he grew up in rural Alabama. His father used to bring him in and whisper in all-caps, “Do you think he needs a SHOT? A SHOT?” When my father in law got very tired, several years ago, he went to see Old Dr. H, who instantly said, “Gene, you have a bleeding ulcer. I can smell it.” And he was right. I see the look on my husband’s face when he talks about Old Dr. H. It is nothing but love, and a bit of wistfulness.
I want us to rethink this, re-vision, re-dream. How do we recognize home? Do we know we are home if there are x number of bathrooms or some set criteria of furniture? Do we have standardized family members, who don’t count as family unless they perform certain functions? One of the most quoted definitions of home saddens me, even though it is sometimes true: Robert Frost’s “home is the place where, when you have to go there, they have to take you in.” Has a grudging, unwelcoming sound.
I like this from Abraham Verghese: “Wasn’t that the definition of home? Not where you are from, but where you are wanted.” Too many humans have had little experience of being wanted, even in the homes of their childhood. Little experience of safety, trust, or belonging, much less being actively wanted. This goes for both patients and healthcare givers. We all falter if not personally wanted and if not treated with dignity and respect.
At home, we can resist the temptation to monetize every bit of life. We don’t have to tally every dish washed, meal cooked, towel folded—every story read aloud, lap filled with a child, goodnight hug—and turn it into a billing code or dollar amount. We do those things not just because they need doing but because we want each other, and home is where that wanting happens, so it is right to make the space of wanted humans beautiful.
Is it still possible to return care to the core of medicine? I think it is, and that it does not have to wait until some dramatic future event like a change of the insurance system, a change of political parties, the removal of personhood from corporations, or a general catastrophic collapse of society and return to pre-technology communities. Maybe we should have a basic skepticism for any change that “can’t” happen until after some major shift in the world.
We must become more oppositional. Hang out with a toddler for awhile if you’ve forgotten how! Healthcare givers can start by resisting the process of monetization. The saying “time is money” is untrue. Our lives are not divided into hours of money, hours of family, hours of self. Every moment of time is LIFE, and the entirety of any given second can never be fully reduced to money. Even time linked with money already retains an element of unquantifiable life. Resist the bean counters by giving that “extra” element of time as a gift to whomever you are with. Do not allow anyone to trick you into thinking your love and life can be paid for.
Care can happen (and does still happen) right now. It starts, in true grassroots fashion, when small groups of patients and healthcare givers remember what care means and commit to sharing it. Like any meaningful change, it spreads from resonance and desire, not top-down imposition. A set of rules about health homes can’t create it—home instead comes as a natural consequence of care. When we remember to care deeply and personally for each other, we will do whatever else is needed to be sure no one in our community goes unwanted.