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The Bonds That Bind

We spent this morning at the Holy Family Hansenorium, a Servite-run medical center that focuses on patients with leprosy, TB, and HIV, as well as providing a primary care center for the more general population. It is a peaceful campus located in a rural area outside of Trichy, and it is lovely to see the work the nuns are doing for their patients. Patients with HIV and leprosy both retain significant stigma in Indian society – one of the orphans we met lost a father to AIDS and a mother to murder by neighbors fearful of her HIV+ status – stories that play out in many societies in different ways.

The doctor (and nun!) who runs the leprosy center told us of the difficulties they face with some of the 40-50 inpatients they have at any time. Most of these patients are at the hospital for ongoing care of wounds, predominantly foot ulcers, and most requiring 2-3 months before an ulcer will appropriately heal. Many prefer not to leave thereafter, as they are well supported at the Hansenorium amongst a group of peers (derived from leprosy being termed Hansen’s disease), and face significant struggles outside between stigma, the physical limitations of cured leprosy (foot ulcers, hand and foot contractions, blindness), and the baseline poverty that most of these patients come from. While many are returned to their community regardless, the most handicapped and the most socially isolated may end up remaining, often taking on roles around the grounds as patient assistants, kitchen workers, cobblers (foot ware being vital to preventing foot ulcers), etc.

Thinking about this reminded me of the struggles we face at BMC with a similar population, patients with severe limitations who lack the family or insurance support to be discharged. Largely suffering from dementia or stroke, these patients cannot support themselves outside of the hospital; are typically not US citizens (or are sufficiently separated from their paperwork that we have difficulty establishing their insurance), and therefore not eligible for Medicaid supported SNFs; and lack family or friends who can take on the enormous task of 24 hour care. Patients combining marked medical need with an absence of social support pose a challenge to every society – here in Trichy, compounded by the impact of stigma that has deprived these patients of their home community, in Boston, compounded by the lack of citizenship, which leaves our patients in a legal grey zone. The ethics of deporting sick patients to less medically sophisticated settings, or medical repatriation, are difficult indeed. I have great sympathy for the argument that it is inappropriate, but as an administrator at a safety net hospital, I am also aware that keeping a patient as an inpatient indefinitely without reimbursement or with minimal reimbursement is incredibly taxing, and requires money that would otherwise be spent on improving the care of other poor patients.

I don’t have an answer to that US conundrum, nor do I have a solution to the troubles of Trichy-based patients with leprosy. But it is interesting to see how other providers in other countries tackle the same underlying problem.

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