How Money Buffers Patients from Pain
I spent time at a public hospital and a private clinic so you don't have to
Posted Jun 30, 2014
I've been spending a lot of time in infusion clinics lately, because that's what we cyborgs do. An infusion clinic, for you lucky non-cyborgs, is usually a scene straight from a sci-fi comic strip: rows of reclining chairs with patients slumped in each, dazed and watching TV, as bags of medications or blood hang above them. Infusion clinics are usually populated with cancer patients, at least in the large hospitals, but we "miscellaneous" types get lumped in, too. If you take a drug that is administered via IV–and many autoimmune patients do–you check in, get hooked up, and watch TV until that drug is a part of you.
In the last two months, I've gotten two different treatments prescribed by two different doctors in two different infusion clinic (hell yes, American medical system–way to run a tight ship!). One is the cancer clinic at a big, local hospital; the other is a private oncology center. My BA-in-Anthropology brain goes crazy comparing the two.
The public clinic is fantastic in many ways–the staff is some of the most competent and kind I have met–but it's an undeniably sadder place. As a white, privately-insured patient who looks perfectly healthy, I am in the minority. The private oncology center, on the other hand, is almost exclusively white, seemingly well-to-do folks. There are huge windows and lots of natural light, and bowls of candy on the check-in desk. The private clinic's patients don't somehow have less cancer than their public clinic counterparts, but they (who am I kidding: "we") have the comforting buffer of money and access. Cheerful volunteers bring Krispy Kremes to the private clinic, and at my first appointment I was given a gift bag thoughtfully assembled by a local church group, complete with hand-written note encouraging me that I could "beat this!" There are no such accoutrements at the public clinic. Going to both provides a weird contrast: I always left the private clinic feeling a little dirty, and the public clinic feeling a little sad.
Even a few years ago, I would have happily eaten my gift bag crackers and high-fived Aetna for hooking me up with the private clinic, but now I find the cushiness a little disconcerting. There is an unmistakable waft of denial in the air. Nurses chat with you about non-illness things while they shoot you with Zofran, and the staff and volunteers are almost pathologically cheerful. I used to live in this sort of denial ("It will only hurt a minute and then you can leave and BE NORMAL"), so I recognize it well. It's a denial fueled by privilege: of having private insurance, of being able to "pass" among the non-sick, of having access to clothes and make-up that minimize the ravages of whatever you are going through. You know you're one of the lucky ones when you can crack jokes with the nurse about the featured muumuus on QVC: it means you feel well enough to find humor at all, and it means you are spending your time watching TV instead of worrying about how you're going to get home.
If illness at the private clinic is viewed through a soft-focus filter, the public clinic has no such luck. It's a thornier space–I often left feeling waterlogged, like I'd been absorbing others' sadness. However, it, as an environment, feels more honest about why we are all there. The nurses are no less friendly, but they talk to us about our drugs, doctors, and life, not QVC. The public clinic also has a chaplain on staff, whose job is solely to help patients come to terms with the terrain of their new life (and oftentimes death.) Its whole ethos seems to be "this is awful and hard but let's do the best we can." The private clinic's is something closer to, "You look great, girl! Put a bird on it!"
After 18 years of living with this illness, I vastly prefer the public clinic's approach. I no longer buy into the idea that enough gift bags will help me forget that I'm being kept afloat with chemicals and duct tape. And, strangely enough, I saw more examples of true human connection and caring at the public clinic than the private one, as if there is some correlation between "unflinching attitude about one's illness" and "caring for others." Most public clinic patients had a relative or partner with them, and the companion often brought food, translated, or advocated for their loved one. I watched one husband and wife share earbuds, whisper, and giggle with each other while she got shot up with drugs. The scene was touching to the point of ache. I've seen no such closeness at the private clinic, or, for that matter, any other private clinic I've attended. In the private clinics, patients and their companions tend to have smartphones or laptops, and their faces stay buried.
The private clinic's cheerful superficiality makes sense. I know well that, as bystanders, when we feel helpless we rely on comfort measures: let me bring you a blanket, let me pick up your favorite burger, let's read "People" and mock the Kardashians. Those things are great; don't get me wrong. But I'm also realizing that they are just as comforting for the bystander as they are for the patient, in that the bystander feels like she is doing something, and both she and the patient can be distracted from the painful subject at hand. Chatty distraction has its place. I'm just not sure it should be woven into the fabric of care.