Protecting the Right to Refuse Treatment

Given the state of health care in this country, it seems absurd to be talking about the right to refuse treatment when so many people can’t access it in the first place. Surely, many people would argue, the priority here should be ensuring that everyone has access to top-flight health care with options based on evidence-based medicine with a focus on holistic care, including preventative care and treatment of the whole body rather than a specific symptom. And yes, this is an issue, and it should definitely be at the forefront of our minds when talking about the problems with the health care system and ensuring that the rights of patients are protected; no one should be denied treatment, ever, for any reason.

But it’s also important to remember that some patients may make an informed and educated choice to refuse treatment, and this is their right as well. This is also a right that needs to be protected, because forcing people to undergo treatment for anything, from mental illness to cancer, is a violation of bodily autonomy and human rights. Every patient must make personal decisions about health care after conferring with medical professionals, learning about the options, and deciding what would be most effective in a given case.

For some patients, that decision is either to refuse treatment or to opt for comfort care only, rather than aggressive treatment measures. Many of these patients face active pressure to change their minds, including shaming from friends and family, social pressure, and in some cases legal pressure compelling them to undergo treatment, as seen in the case of patients with severe mental illness in some states with mandatory treatment laws. For these patients already struggling with medical problems, the denial of rights involved in being forced to undergo treatment can be hugely demoralising.

In patients with terminal illnesses, refusal of treatment may be part of a larger decision to die with dignity, deciding not to prolong a life in the presence of painful, unpleasant symptoms. That’s a personal choice that individuals need to make on the basis of their own prognoses, experiences, and needs. Yet, such patients are often interrogated ferociously about an ultimately private decision, and sometimes their own families are involved in this process. This often involves shaming; people want to know, for example, why a patient doesn’t want to ‘fight’ an illness even if the fight can’t realistically be won, or they demand to know why someone would leave family members bereft by not pursuing every possible treatment option.

Having a terminal illness can be exhausting, and pressure like this adds to the fatigue. Instead of focusing their energies on making connections in the time they have left, patients get sucked into whirlwinds of conversation where they’re forced to defend a very personal medical decision by people who may not be familiar with the specifics of the case. The usual ‘have you heard of this’ and ‘my aunt had the same thing and she got better’ rhetoric is used, by people who don’t seem to understand that they’re being rude, whatever intentions they may have aside. Such patients need support, not constant judging from the people around them.

Judgment for refusing treatment can be particularly harsh in the case of people who refuse conventional treatments or determine that there’s nothing about them to fix, as seen in the case of some people with autism as well as in the mental health community. Autistic people may not opt for treatments because there’s nothing to treat; they don’t need ‘therapy,’ especially when it comes in the form of controversial behavioural modifications, potentially dangerous chelation, and other bizarre procedures intended to ‘cure’ or ‘mitigate’ autism. Likewise, for example, some people with disassociative identity disorder choose not to integrate, for a variety of reasons. For them, there’s nothing to be cured; it’s like asking a nondisabled person if she’d like a ‘cure’ like amputation for her right arm.

The idea that some people might actively refuse treatment because they see nothing wrong with themselves seems deeply disturbing to many people. When someone who lies outside the normative definition of ‘okay’ declares that nothing is wrong, it shakes the definition of ‘normal’ and forces people to question their own identities. A mentally ill person who chooses not to use medications and therapy as a conscious choice, as a member of the mad pride movement or independently, for example, is obviously ‘just crazy.’ This decision doesn’t invalidate the choices of mentally ill people who do choose those options to manage their mental illnesses, but for some reason it makes people deeply uncomfortable to confront the idea that mental health can take very different forms in different people, and a diagnosis is not a one size fits all thing.

In the case of mental illness in particular there’s a lot of external pressure with arguments that patients ‘don’t know better’ and need to be treated ‘for their own good.’ Part of this is the result of the fact that often, people don’t receive treatment when the signs of mental illness start to develop. Instead, they’re left without any social or institutional supports until severe mental illness develops, until their mental health condition becomes such an impairment that they have difficulty navigating the world around them and are incapable of seeking treatment or learning more about the different treatment options and their possible benefits. Forcibly treated, some patients opt to continue with a prescribed course of care, others choose to seek out other options, and others…end up right back where they were as soon as support is withdrawn.

If, on the other hand, mentally ill people were identified early and offered intervention before the onset of severe mental illness, they’d have a fighting chance at making educated choices about how they want to manage their conditions. They’d also avoid years or potentially decades of struggles at school and in the workplace, possible unemployment, homelessness, drug addiction, and other complications of untreated mental illness.

But in the end, they’d still have the right to refuse treatment, because everyone gets to decide what happens in and around their own bodies on their own.