Last night, I watched ProPublica and Frontline’s excellent documentary, Right to Fail, about New York’s struggle to find the balance between independence and safety in the care of people with disabling mental illness.
Finding this balance between independence and safety is something that I struggle with in primary care frequently. Most of the time, you can find a balance by bringing family members into the conversation and focusing on harm reduction and quality of life. But sometimes it’s not enough.
I took care of a gentleman in the emergency department the other day whose blood oxygen was dangerously low because of a condition called aspiration pneumonitis that he got because he was choking on the food that he was eating. He had neck surgery a couple months prior and the muscles that coordinated his swallowing reflex had not fully recovered. I advised him to come into the hospital until his lungs recovered enough that he wouldn’t need supplementary oxygen or we could arrange to have an oxygen tank delivered to his home. I told him I was worried that with prolonged low oxygen levels, his brain, heart, and kidneys may start to be damaged or fail. He declined admission, but couldn’t really repeat back to me an understanding of the risk he was taking by leaving against medical advice. I offered to call a family member on his behalf, but he didn’t want to worry them. I was stuck…
As someone with a strong professional and emotional drive to protect people from physical harm, it hurts me to see people suffering because of a limited capacity to take care of themselves. I often feel the impulse to say, “well let’s just have someone else take care of you.” I’m not alone in that. I think most people, when they seem someone on the street who is clearly unwell and in distress, feel suffering on that person’t behalf.
Many people with disabilities are glad to have assistance when that assistance is provided with compassion not condescension and supports of positive sense of self. I strongly believes that we need much better programs to support people with disabilities to maximize their capacity to live independently. But for those who who expose themselves to significant harm by rejecting assistance while having a questionable capacity to understand the risks and benefits of that decision, it gets difficult.
Institutionalizing someone against their will can be traumatic and harmful and must be a last resort. That being said, I do think it is sometimes the right thing to do, and it needs to be an option on the table.
In summary, 1) watch Right To Fail, 2) support programs that help people with disabilities live independently with dignity, and 3) consider that there are (rare) situations where loss of agency can be a net benefit to an individual with severe mental illness.