Disabled Lives Are Not Disposable.
With countries like the Netherlands going back into triage, we are again seeing the deprioritization and disposability with which society views disabled lives. These arguments often rest on the assumption that all disabled people have a poor quality of life. This is completely false. Quality of life is a subjective measure that only people living life can gauge. Disabled lives are not disposable.
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What quality of life is not determined by:
-Your ability to work
-Whether you use mobility aids
-Your IQ
-Your life expectancy
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What quality of life is determined by:
-Your physical or mental pain
-Being able to do things you find pleasurable, enjoyable, and/or meaningful
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In short, quality of life is about how much enjoyment and life you get out of living. There is no inherent reason why being in a wheelchair or being reliant or care makes someone's life less valuable. One person in a wheelchair could be in tremendous pain and unable to pursue any of their passions. Another could be pursuing their dream project. The visible wheelchair is not a determiner of the quality of life. Only the person whose life is affected by disability can say how that disability affects their quality of life.
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So what about triage situations?
First of all, triage should rarely if ever be necessary for a first-world country. Countries' healthcare systems should build for surge capacity as opposed to planning for the deaths of the vulnerable. However, in unavoidable triage scenarios quality of life should be assessed using subjective measures like those on pain and mental health scales. Not objective criteria that do not take personal circumstances into account.
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Why is this better?
Because it acknowledges that quality of life is subjective and that no one disability that makes life less valuable. Systems like frailty assume assistance = lower worth of life. This is blatantly false and based on the assumption that disabled people are a burden and caregivers resent them. We should evaluate cases individually and not condemn people living happy and fulfilled lives to death because of stereotypes about what a good life "should" look like.
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But that's too hard!
Good. It should be hard. It should make you realize that no life is worthless and that there is no simple measure of the quality of life. There are some people who are getting less out of life. But identifying them is hard and messy and not a good way to run a hospital. Triage is a tragedy, and looking at the individual cases makes that clear and reminds us why this is not an acceptable solution.
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In summary
We do not evaluate the quality of life properly.
We assume disabled lives are disposable because of false assumptions about what makes life worth living.
We assume that triage is acceptable because some lives are inherently disposable.
These assumptions are false. We should not build healthcare systems that rely on triage instead of surge capacity and if we do require triage it should be done with individual attention, not blanket statements based on ableist assumptions.
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A note on depression:
Those paying close attention will notice that depressed people will have a very low quality of life by these metrics. To me this is accurate. Depressed people have some of the lowest quality of life possible. People with severe ME are some of the only people with less. However, the future quality of life should also be taken into account. Most depression is highly treatable with combined medication and therapy. If a person is suffering from an acute depressive episode their likely recovery should be taken into account when triaging. The same is true of people suffering grief from the loss of a loved one or recent loss of health.
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Disabled lives are not disposable! Triage is an unacceptable plan for surge capacity.
Quality of life is so often misunderstood by those in good health and even those who have become recently chronically ill or disabled. Ableism teaches us that someone's worth is based on their outward productivity and independence. But this is not quality of life. Quality of life is the subjective experience of people's lives which can still be good even if someone doesn't work or needs assistance.
Triage systems like frailty in the Netherlands assume that disabled people's lives are worthless because they need assistance. That disabled people must be a burden on caregivers. There is often an unspoken assumption that caregivers would be relieved if the disabled person just died. Think about if the person you love most needed your help, would you stop wanting them alive and with you just because you have to help them? No? Then why do we assume it of others?
Quality of life is not fiction. It is real and having a disability can make the quality of life decline sharply if the person is not supported in meeting their basic needs. But in a civilized society meeting, disabled people's needs should be a given. There is no need for anyone to go hungry, unhoused, or uncared for in a first-world country like the Netherlands. If a person is having their needs met than functional issues like needing help with movement or toileting should not affect the quality of life.
What does affect the quality of life is things like chronic pain, chronic fatigue and depression. These things can and should be properly managed but may become unmanageable. These are all subjective measures and only the person living with them can say how bad it is.
So how do we know who to save in triage? Answer: we don't. We can try to ask people but it will never be exact, it will always be subjective and dependent on people's words.
This is why triage is not an acceptable answer to surge capacity. There are no disposable people we can get rid of to free up hospital beds. Triage is always a tragedy. We need to pressure governments to adequately fund hospitals' ability to support surge capacity.
