Cultural incompetency

I just finished reading "The Spirit Catches You and You Fall Down", which has been on my list for way too long.

I can't remember the last time a book infuriated me so much. It's hard to explain. The basic setting for the book is a Hmong girl who developed seizures in infancy and the struggle between her American doctors trying to do what was best for her and her parents, who wanted to practice traditional animistic medicine and distrusted modern healthcare. The results of the clash (or maybe just the results of her illness) were catastrophic and difficult for everyone involved. The book also recounts the history of the Hmong people, their constant persecution, and mass migration to Laos and then the United States following the Indochina and Vietnam Wars. (And thus raised a lot of issues in general about welfare and assimilation, but those are for another time, or maybe never.)

As a practitioner of Western medicine, I identified deeply with her doctors, frustrated that the parents weren't giving her medicine, that they couldn't seem to understand why certain interventions were deemed necessary, and that they thought the doctors were trying to hurt her--concepts that were almost always lost on her parents despite using interpreters (for example: when she had to be transferred to a bigger hospital with a pediatric ICU, the parents just thought her doctors were sending her somewhere else so they could go on vacation themselves, even though the whole discussion was had with a Hmong interpreter). It made me so mad to think of a girl who might have lived a somewhat normal life if her seizures had been adequately controlled and her parents had trusted the doctors, but instead ended up a total vegetable with her entire community pitted against the hospital.

I might have done many of the same things, right up to the point of asking social services to take the girl and place her in foster care so she could get the treatment she needed. Because what good is staying with your family--no matter how loving--if you end up not even being able to speak to them or interact? If an English-speaking, fully American family intentionally lied about giving medicine and refused to do it to the detriment of their child and at extreme cost to the taxpayers, wouldn't we claim medical neglect and do something about it?

It was also baffling to learn of some of the Hmong beliefs about health and illness--that you only have a finite amount of blood in your body and if the doctors take too much, they take your soul; that eating the wrong thing when pregnant may cause your child to have a congenital defect and trying to correct that defect would insult the spirits and cause death; that having to take a medicine your whole life means that the medicine is trying to kill you, because otherwise it would have worked faster. It made me want to shake someone and say, "What do you mean your child can't have surgery to remove a tumor because it will make their reincarnated soul incomplete?" "What do you mean you're going to commit suicide if we take more of your child's blood? They will make more!"

And yet, as someone who holds beliefs that some may consider equally archaic--that as part of the Mass we consume Jesus' body and blood, that God can intervene and work miracles as a result of prayer, that not all suffering is evil and to be avoided--I understand what it's like, even on a small level, to be misunderstood. It seems like a small task to figure out a patient's impression of their illness and what their priorities are. For example, with terminal cancer, some people want time and some people want comfort, and neither is wrong. And yet, I'm not (to my knowledge) endangering my life or the life of anyone else because of my beliefs. So where do we draw the line? In this case, it was a cultural battle, but there are lots of avenues for conflict in medicine. When do parents have a right to refuse treatment for their children? Or what happens when someone declines treatment until the point they are in an emergency and then expects medicine to offer a quick fix?

I hope you can see why I was struggling as I read this book. And I don't think there are definite answers. I think each patient teaches us to be a little more aware, a little more understanding, and yet it's far too easy to go into autopilot. Just today I had a mom break down in the room over what I thought was a fairly minor issue, and it was only after she took me aside outside of the room and told me what her fears really were that I was able to go back in and reassure both the patient and her mom in a way that was meaningful and conducive to healing for both of them. But what if the mom hadn't come out? Or what if I had been too busy to really listen? Things might have turned out differently, just like they probably do in offices and hospitals around the country. It's a struggle to remember that there is not just one way to healing and not one right response to illness or suffering.