On "Dying With Their Rights On"
Does this look like someone with too many rights?
The notion of people “dying with their rights on” comes from arguments for forced psychiatric hospitalization, dating back to the 1970s. As the rhetoric goes: a desperately sick person who refuses services, and doesn’t meet criteria for involuntary admission, will “die with their rights on”—and what a shame about those rights. The sick person does not understand that they need treatment, and with no legal way to coerce them, would-be rescuers in the health system can only look on. The implication is that forcing people into treatment should be easier because survival is more important than autonomy.
The constituency for forced treatment, including for substance use, got a major boost with July’s executive order “Ending Crime and Disorder on America’s Streets.” The order seeks to dismantle legal barriers to involuntary admission, including to “long-term institutional settings.” The agenda of forcing people into treatment, particularly as a way to remove unhoused people from public view, has long enjoyed bipartisan support. Forced treatment can be called “help” while still functioning as control and confinement. As a longtime addiction clinician, I see the executive order as a difference in degree but not in kind. And I suspect substance use treatment organizations recognize this too, because not one has said a word about it. I am even concerned that the treatment industry quietly welcomes the executive order as portending even more mandated “referrals.”
Meanwhile, let’s think about what rights people don’t have. In the US, there is no right to food, housing, or medical care. Mental health care is even harder to access. So one way to understand a dire situation involving numerous, acute unmet needs “on America’s streets,” is a person’s lifetime lack of any such rights. Don’t privileged people have mental health issues and addictions too? Of course. These were my first patients, in fact—I started out as a substance use counselor for elite college students. But you don’t need rights to your basic needs when all have already been met. In this case there is no dilemma between survival and autonomy. Someone from this kind of background who winds up living on the street has lost the access of privilege. Or, if every step on their way has truly been a choice, then yes, they have been exercising one right they do have: to refuse assistance, to opt out of rules. The notion that this one stubborn right—to decline care and the expectations attached to it—can kill someone, ignores all the much more important factors leading up to that refusal.
It is true that this can mean death. I do not write that lightly at all, because I have seen it. And it is important to engage this question earnestly because some providers of forced treatment really think they are doing the right thing. I was one of them until I left community addiction treatment and realized how unethical and unproductive treatment mandates are. But if we change “dying with their rights on” to “dying on their own terms,” it doesn’t sound so unreasonable anymore. Over and over, in my experience as a health care worker and listening to many other health care workers, I recognize our patients valuing autonomy over survival. They want to die on their own terms. And ultimately I believe we all do. The difference is in what care and resources are available to us, and on what conditions, throughout the life span as well as in what might be our final years, months or days.
If you still work in mandated treatment, I am not blaming you. As long as treatment mandates exist, people will rely on providers who are willing to cooperate. This means we make an ethical compromise whether we refuse (as I do now) or keep playing along. But I hope the current conditions will bring more well-meaning health care workers to see forced treatment for what it is: taking away autonomy from people who may have nothing else.
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