Thursday, May 4, 2017

A Human Right: working with young doctors in rural Mexico

Madeleine Matthiesen
Med Peds Resident at MGH

A Human Right: working with young doctors in rural Mexico

I’ve been thinking a lot about what it means for something to be a human right.

There’s not necessarily anything profoundly different about my experience here in Mexico. It is this same experience that nearly every doctor feels in global health. It is the experience that drives us to do global health and to care for the underserved. It’s the experience that pushes us to find new ways to solve old problems. Yet I can’t help but feel powerless in a way I have never felt powerless before.

As you enter the Partners in Health (Companeros en Salud/CES as they call it here) clinics, you’re always greated by the same sign, reading:

“Healthis a human right. We offer medical attention completely free of charge and don’t discriminate against anyone for their country, community, insurance, or gender (translated from Spanish).”

The sign is prominently displayed for everyone to see, and it is a sort of mantra for the work that CES does here. It’s something that I feel in my core, that I feel a part of, but it’s also something I’ve struggled a lot with. It’s not this sentiment that I struggle with, rather, it’s how far to take it: to what extent does someone have the right to medical care? Do they have the right to preventive care such as vaccines and diabetes care? To annual eye exams if they are diabetic? Does everyone? Who decides what’s important and what isn’t?

And as a result, there are several cases that have haunted me here. The secretly pregnant teen who can’t come to an appointment without her mom for cost reasons but doesn’t want her mom to know, the women and men with suicidal ideation whom we can do nothing for, the woman who has essentially been forcibly been sterilized by the inability to pay for tests that could explain why she can’t get pregnant.

Most recently, it’s been the kids I am haunted by. This week we’ve seen two sets of kids struggling with severe developmental delay. As a med-peds doctor, there’s always been something a little bit different about these kids and even about their parents and the struggle they go through.

Early last Saturday morning, I peered out of the clinic to see two boys with the likely diagnosis of autism. Their mother and father waited patiently in the waiting area to be seen, praying that their older son would remain calm. As his mother stepped into the clinic, tears beginning to stream down her face, she told us the story of how her elder son had become violent, and as a result, so too had her normally passive younger son.

I searched my memory for the afternoons I had spent at the Lurie Center, a center for kids with autism just outside of Boston--a place where kids and families just like this are well supported with psych, developmental and regular pediatricians, social workers, occupational/physical/and speech therapists. Risperdal. They use risperdal, I think.

As the young doctor I’m working with, Rene, and I discussed the patient’s care, I couldn’t help but feel a sense of terrible dread. I was going to give risperdal, a medication I’d never in my life prescribed, to a 15-year-old boy without any ability to check safety labs, without any ability to see how this boy was doing one let alone three weeks from now. He and his family would make the nearly four hour trip again some time 4-6 weeks from now to see how things had gone.

Yes, we probably did this family a service. Hopefully, we helped him stay calm, to be able to go to school, to keep his brother calm, to not hurt his mother. But how do I know I didn’t do harm? Maybe he had a paradoxical reaction, an allergic reaction, maybe I’m giving him diabetes without much benefit.

And is this his human right? To be treated by a doctor who doesn’t really have the experience to be using the medication she is giving him? I know, most people would say better this than nothing, but I can’t shake the feeling that I’m somehow not living up to the oath I took--first do no harm.

The oath does not say first do some benefit but less harm. I can’t help but shake this feeling that I’ve somehow done a disservice to the patients whose human rights I’d hoped to serve.

Rene laughed at me as we discussed the case and I pined to send the boy to Boston. Of course, he couldn’t go to Boston, far from his parents, in a land where he doesn’t understand the language, where he couldn’t afford 30 minutes in an apartment.

Neither could the girl with CP I saw in clinic yesterday. Born at 25 weeks, her prematurity and cerebral palsy were wreaking havoc on her body. As I looked into her eyes, my heart broke. She has cataracts, I thought, failing to recognize a nearly extinct entity in the US. This was untreated retinopathy of prematurity, an ailment I’d seen dozens if not hundreds of times but not once to this extent. A treatable illness, much like her contractures, her secretions, and her constipation.

And she was one of the lucky ones--she’d seen a psychiatrist and a neurologist previously. Yet neither her mom nor Rene had ever heard of baclofen for her contractures. She’d never been treated with miralax, and saliva continued to pool in and out of her mouth. Of course, we had none of the necessary medications in our arsenal. We settled on lactulose for her constipation and a referral back to the neurologist for her contractures and pooled saliva.

Was this her human right? To be treated by two doctors inexperienced in the care of her illness? To be treated one-third of they way for her complications?

This inner struggle has shaken my belief system. I’ve always felt and believed that health is a human right, and it’s not that I don’t still feel that way--I do. These people have the right to the same solid, evidence-based care that my patients in Boston do.

We are providing the care that we can, the most basic of care that maybe will allow a mother to sleep more soundly at night less afraid of her son or a 10 year old girl to struggle slightly less with constipation, but it does not feel as if we are providing the human right, the care that is deserved as a member of the human race. 

These patients put their faith in us, because we are their only option. They do so without hesitation, but I, as their doctor, am hesitating.

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