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It's not surprising to me that @nytimes would essentially publish an advertisement for physician-assisted suicide. What does surprise me is how advocates fail to see how culturally formative some of these views are 1/ #hapc #hpm #MedTwitter https://www.nytimes.com/2021/04/05/well/live/aid-in-dying.html
The life of one person who "could no longer stand, feed or toilet himself" was described as "protracted dying." It's difficult to discern when one actually starts to die. It's a conversation worth having. 2/
However, to emphasize that dying begins when one loses independence places an immense burden on some of the most vulnerable people. Surely it's the case that dying eventually entails loss of independence, but the converse can't always be true. 3/
What, then, are we trying to say when someone is "dying?" I think we're trying to acknowledge the inevitability of their decline, the imminence of their death, and the expectations we have for their care and activity. 4/
And so the author wrote, "Ms. Rehm said her goal is that no patient should have to suffer the indignity her husband experienced at the end of his life." The article frames loss of independence (which is the only thing described in the article) as something undignified. 5/
This is my main point: I don't think this can be something about which we hold our own opinions. Our views on this shape the culture in which we live. 6/
So when we find that there's stigma or folks neglect the most vulnerable patients for whom we're trying to advocate, it stems from the belief that there are certain ways of living that are "undignified." There are "lives not worth living." 6/
Proponents of PAS assert that it boils down to choice: people should have the choice whether to end their lives or not. This isn't about looking at someone else and declaring their life undignified or "a life unworthy of life." 7/
Yet when we say, "I would never want to live like that," "This is not dignity," or "This is dying," we're making claims about the way things are. Respect for patients' autonomy doesn't mean all meaning has been relativized. 8/
If it has, then words have lost all meaning. Given that's not the case, we need to be careful about how we advocate for our patients and our loved ones, because such advocacy can have an unintended impact on how society treats the most vulnerable among us. 9/
Let me be clear: we each have unalienable #dignity as people that others can only recognize, not authorize. Being human, we are frail, vulnerable, and mortal. It does not tarnish our dignity to acknowledge those things nor actually live them. 10/ #hapc #hpm #MedTwitter
On the flip side, ideal autonomy doesn't exist. We will all encounter restrictions and controlling influences on our autonomy. It's good when our agency is supported and protected, but autonomy isn't a necessary condition for human dignity. 11/
I care for so many patients who say they "don't want to be a burden." Our culture has taught them to believe that it's not up to families to care for one in times of great need, that their human dependence can *harm* their family. 12/
Our culture fails to teach that people aren't burdens. Rather, they are burdened by illness and suffering. Parts of that burden can be shared with others. That's the human experience. Are we really trying to wield death as an instrument to avoid or hide that? 13/
But in fact, without PAS, we already so often do: "If X happens, I will want to die. Don't save my life then," "I never wanted to live like this. Stop X so I can die." Withdrawing or withholding life-sustaining therapies are common decisions in healthcare today. 14/
Nevertheless, these decisions, framed as they are, still use death as an instrument to "unburden" people from the human condition and still sends a message about dignified living and dying, and "lives not worth living." 15/
A different way to frame such decisions, that doesn't use death as a medical instrument, is to discern if a life-sustaining therapy is helping someone pursue a goal that is meaningful to them (e.g., longevity, function, comfort). 16/
If not, or if the burdens/harms imposed by it are too great, then it can be discarded. But the intention isn't to use death as an instrument to deal with suffering or the human condition. 17/
We can't have it both ways: we can't both advocate for vulnerable patients before a utilitarian world with its ableism and its metrics for success and also support others who claim that it's undignified to live such lives, that such lives are "not worth living." 18/
