Treatment Should Not Be a Privilege… Refusing it Should Be An Individual Choice…
The Problem
We live in a world where treatment is too often a luxury. Where getting medications, therapy, and palliative care is not accessible to everyone who needs it. This is obviously wrong. Healthcare is a human right.
However, because we live in a world where treatment (especially costly, experimental, or rare treatments) are a luxury, this deeply colors the decision of whether to undergo a certain treatment with societal bias.
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Economic Harm
Doctors swear an oath to first do no harm. But when we live in a world where money is necessary to live, isn't prescribing an expensive treatment a form of harm?
This conundrum is most prevalent with things like expensive supplements. These supplements often have some minor benefits and little to no risk. So from a purely medical standpoint prescribing them is low risk. But if by prescribing these supplements you are putting financial stress on your patient, that stress could easily outweigh the benefits of the supplement.
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Treatment Guilt
One way this manifests is treatment guilt. Patients who are able to receive treatment not available to everyone who needs it may experience survivor's guilt. They may struggle with accepting a medication that they know is undersupplied.
I personally have experienced this with IVIG as a person with ME. I know many people with severe ME as sick as I am who will never have the opportunity to try this treatment. The system around deciding who receives IVIG is complex and deeply unfair. Whether I need this treatment should only be influenced by my doctor's clinical judgement and my personal consent. But it is not.
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Forced Gratitude
For those of us who do receive treatment, there is also high pressure online and socially to be appreciative of any treatment we receive. This ignores the fact that for many people treatments fail. For some, they end up far worse than had they never received the treatment.
No one should have to be grateful to undergo chemotherapy. Chemotherapy is an awful experience and no one would voluntarily choose to undergo it. But when you live in a society where some people die because they don't have access to chemo, gratitude is expected.
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Experimental Treatment Should Not Be A Reward
Likewise, spots in experimental drug trials or access to experimental treatments are in short supply. People have to fight to receive these treatments. This leads to the mindset that these treatments are rewards. That they are the prize for "self-advocacy" or the privilege of having wealth.
But experimental treatments are by their nature not confirmed to work. They have unknown side effects. They may be difficult to undergo and many will fail. Undergoing these treatments isn't a reward, it's a sacrifice. A sacrifice disabled people make to further the science that might one day help others.
It shows our devaluation of disabled life and disabled labor that we see undergoing these treatments as a privilege. Something disabled people should fight to receive. We should see undergoing these treatments as societally necessary labor that we should encourage and applaud disabled people for doing.
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Treatment Refusal
Likewise, treatment refusal is often seen as either foolish or self-sacrificing. Unlike accepting treatment, there is almost no one for whom refusing treatment is not a granted right.*
But refusing treatment can in fact be a very self-motivated decision. Not wanting to undergo difficult medical procedures with a limited chance or success or not wanting to be the lab rat for a new experimental drug is perfectly rational.
When only a select few people have access to experimental drugs, refusing these treatments becomes political. It is used by governments to say that the drug is unnecessary or not worth funding. Or the disabled person is held up as "morally righteous" for not using resources, used to shame other "selfish" disabled people who god forbid want healthcare.
*Obvious exception here is being forced mental health treatment which is its own giant mess that deserves its own post
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Personal Medical Decisions Should Be Personal
In an ideal world, every patient would have the ability to look at all the available treatments, the evidence for and against them, and with the help of their doctor make a decision about what they want to receive. Every treatment choice would be based on their own tolerance for risk, and acceptance of symptoms vs side effects.
But this is not the world we live in. In a world where some options are gated and exclusive and others overprescribed personal medical choices come with societal judgement. Both good and bad. From the decision to take an anti-depressant to choosing to forgo chemotherapy everyone has an opinion.
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Societally Important Treatments
Of course, some treatments will never be solely personal decisions. For example, vaccinations affect a country as a whole because of how they control communicable diseases and a healthy person's decision to be vaccinated often has much more impact on the disabled people in their community than it does on their own health.
Likewise, until we can grow artificial organs we will likely always have people on transplant lists who will die. So the decision to accept a transplant will always affect the other people on the list.
However, I believe even in these scenarios we should aim to take the societal judgment away from the individuals making personal healthcare choices. When a societal sacrifice is necessary that choice should be determined by laws made with ethicist consultation. By the time the decision reaches the patient, they should only be responsible for choosing their personal path.
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What do we do?
I believe that as patients and disabled people we must strive to create the world we should live in. That means lobbying governments to make more treatments accessible and pushing the medical establishment to give patients more information and autonomy around treatment choices.
But it also means trying to make our own medical decisions based on our own desires for life and experience. It means learning to listen to our bodies and our intuition and not just making decisions based on what is offered to us but rather seeking out the treatments we want and not accepting treatments unless we actually want to undergo them.
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People with MECFS have no FDA-approved medical treatments. All our treatment is a privilege and so many go without any. But it shouldn't be that way.
I have posted a fair bit about my medical treatments recently and it has made me realize the complex way that our society has made our personal medical decision political. And I don't mean that in the vaccines shouldn't be political sense. I mean that when we live in a society where treatment is a luxury and refusal of treatment is a right, it gives treatment an artificially inflated reputation.
Treatment must be good because people want it and some of them can't have it.
But the truth is that overtreatment, snake oil, and just plain treatment failure means that not all treatments are good for all patients. Until we allow full access to treatment for everyone who wants it, we will never be able to see treatment with the neutral eye necessary to make the best possible judgements for our own health.
But that doesn't mean we shouldn't try. My hope is that by pointing out some of the ways that we are biased towards or against accepting treatment we can better understand our own decisions and the decisions of others. Because it is essential that we learn to make decisions around treatment based on the values and decisions of those who will actually undergo and live with those treatments.
