Severe ME and the Right to Assisted Suicide
The basics
-Every person with ME has a right to good caretaking, pain relief, and basic necessities
-Every person with severe ME should be given palliative care that manages their symptoms as much as possible
-Assisted suicide should never be used as a reason to deny care
-Every person has a right to a dignified and pain-free death where they can say goodbye to their loved ones
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Reasons I believe severe ME patients should be allowed to choose assisted suicide
-Incurable suffering
-No forced martyrs
-Suicide prevention
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Arguments I will give rebuttals against
-Slippery slope
-Devaluing disabled lives
-Unnecessary death
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Incurable suffering
ME is incurable. There are no treatments proven to work against it and many people try all available experimental treatments with no success. Severe ME has a quality of life worse than chemotherapy patients or late-stage AIDS. Severe ME includes extremely painful migraine, nerve pain, and sensory issues. To condemn people to this suffering indefinitely is inhumane. This is not to say I believe ME will never be cured or that pwME should not continue to hope for a cure. But we are not currently close enough to any sort of treatment to call this anything than what it is: an incurable illness with unbearable suffering.
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No Forced Martyrs
While I believe that those who survive with ME send a powerful message to the world about the strength of ME patients against unimaginable suffering that is not a job we can reasonably ask of anyone. I believe the most powerful act of protesting someone which chronic illness can do is just live when society tells them their life should be meaningless. Finding meaning and life within severe ME is an act of protest, strength, and power that is incredibly admirable. However, not everyone is capable of this. For many life with severe ME is just suffering, living death. It is not our place to determine how much suffering someone should have to endure for our collective political gain.
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Suicide Prevention
Suicide is incredibly common in ME. Nearly 60% of severe ME patients have contemplated suicide compared to 4% of the general population. When assisted suicide is an option, people's motivation towards unassisted suicide drops significantly. This decreases both failed and successful suicides of emotional desperation. In the case of failed suicide attempts in severe ME these can lead to psychiatric hospitalization and severe decline leading to complete loss of quality of life for the patient. Additionally, successful suicide attempts outside of assisted suicide mean that patients are forced to die alone, often painfully, without the opportunity to explain themselves to loved ones. Fear of punishment in the form of forces psychiatric care can stop families from talking honestly about a severe patient's desire to die. This often leads patients to believe they are less wanted or more of a burden than their families feel. In contrast, assisted suicide encourages these discussions and encourages patients to make rational thought out choices around suicide over emotional decisions when they are at their breaking point. While some people will make the rational choice or assisted suicide, in the long run, this saves lives.
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Slippery Slope
Is assisted suicide a slippery slope to eugenics against disabled people? It has the potential to be which is why strict safeguards should be put in place to prevent this.
1.) The person must themselves believe that their suffering is unbearable and must request assisted suicide with it illegal to suggest - most disabled people are happy with their lives and would not agree to this
2.) The suffering must be unrelievable - therefore any suffering caused by lack of services, care, or pain management does not qualify as a reason for assisted suicide
3.) A psychiatrist must assess the patients reasoning as rational - therefore the immediate depression from becoming sick should be differentiated from a rational decision about the quality of life years into living with a chronic illness
However, the slippery slope argument is not an argument that should stop assisted suicide outright because if these safeguards are put in place it is no longer a slippery slope. If it is illegal to suggest assisted suicide, and it is only legal to proceed with following someone being granted access to all available palliative care measures there is no risk to disabled people who are happy with their lives or fighting for better care.
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Devaluing disabled lives
There is another argument that assisted suicide devalues disabled lives. I argue that a society that allows assisted suicide would better highlight the value of disabled lives. If disabled people have no choice but to live their lives with any amount of suffering or die a terrible often painful death alone from suicide many will see disabled people as only living due to lack of choice. In reality, most disabled people would happily continue their lives in a society with assisted suicide. These people would then make a greater statement with their lives that their lives are worth living. They have agency over their lives and choose to pursue it. The people who do choose assisted suicide would be those with severely low quality of life and severe pain. The plight of these people would be highlighted both in their official workups for assisted suicide and in statistics around who is choosing assisted suicide allowing society to better see and understand what real disabled suffering looks like versus what society mistakingly believes it to look like. Finally, assisted suicide gives disabled people the autonomy to choose a dignified death. It treats us as rational agents who are capable of evaluating their own quality of life. This is the opposite of devaluing our autonomy.
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Unnecessary Death
Finally some will argue that assisted suicide causes unnecessary death. That people who die of assisted suicide could have kept living otherwise and thus any rationale for it is still rationalizing death. But if someone has made a well-thought-out rational choice to commit suicide there is little we can do to stop them. Our suicide prevention strategies are all designed around emotionally conflicted decisions. Someone who is determined to die does not call the suicide hotline. Does not seek psychiatric help. If their death is prevented they will try again. Trying to prevent the deaths of these people only serves to separate them from their loved ones and cause them great pain and suffering when they are already suffering more than anyone else in our society. Not to mention that the people with severe ME who seek assisted suicide almost always report that they feel their quality of life is so low that they are already living death. What life are we saving? What pride should be taken in condemning someone to indefinite indescribable agony and torture? Suicide is generally bad because people who commit suicide don't want to die, they just want their life as they know it to end. But if the safeguards have been followed than this person does not have any other options to end their pain other than death. We owe it to them to give them the same dignity and autonomy in that choice as any of us would want to give that impossible decision.
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The theme for invisible illness awareness week this year is courage and so I decided to take this opportunity to talk about a subject that requires courage from every angle: assisted suicide in severe ME and very Severe ME.
Let me make one thing clear: anyone with severe ME displays tremendous courage no matter what they do with their life. Simply surviving with this disease is an act of powerful rebellion as is the calculated decision to say enough and refuse to suffer from this disease.
A second clear point: assisted suicide is very different from suicide due to emotional despair. People with ME should be given psychological support and assistance and suicide out of despair should be prevented through support groups and support networks.*
But with both those things established, I firmly believe that if anyone with an incurable disease causing unrelievable suffering makes the rational decision that their life is not worth that level of suffering we should respect that decision and give them the same dignity of death we would to anyone else dying on an incurable illness. Some people with severe ME will fall into this category.
Assisted suicide is not the easy way out. It requires deep conversations with those closest to you. It requires a true comprehension of death and your beliefs around mortality. It requires an impossible decision rationalizing around your own personal suffering, pain, and life goals and values. It is not an easy decision or one anyone makes lightly.
There is a world in which assisted suicide is too easy, in which we over-approved assisted suicides devaluing the lives of disabled people and simply allowing anyone with a disability the option to die. But we do not live in that world. In the world we live in our laws are over-restrictive. In the world, we live in most countries condemn people with severe incurable chronic pain to a life of agony simply because their illness does not kill them in 6 months. It is in this world that I make this post.
I hope this post captures the extreme nuance this topic requires but one part is simple: the courage of those cursed with severe ME is universal. The dead included.
