They were twins. Both deaf, both cobblers. They never married, were very close to their families, and they spent their days together. They suffered from other medical conditions such as spinal issues, but the full roster of their illnesses is unknown to me. On December 14th 2012 they chose to use the right of Belgian citizens to voluntarily euthanize themselves. They did this because they were going blind as a result of glaucoma, and they could not bear the idea of being unable to see one another, or the idea of being institutionalized.
I am a supporter of right to dignity in death measures in the law; I believe that when people are suffering, when they are in pain, that they should be able to die rather than to suffer if they will not get better. To spare their families the pain of having to witness their death.
But I can’t get past the uncomfortable feeling that these men were choosing death over life. A life that might not be entirely unlike mine. Certainly the idea of being blind and deaf terrifies most people – but I am both. Neither are complete conditions for me, but I can’t shake the the fact that I am reading about someone deciding to kill themselves because they are like me. The story challenges my ability to be fully on the side of allowing people to use the medical establishment to help people die.
In Belgium the law reads as follows:
To make a legitimate euthanasia request, the patient must be an adult, must be conscious and legally competent at the moment of making the request, and must be in a condition of constant and unbearable physical or psychological suffering resulting from a serious and incurable disorder caused by illness or accident, for which medical treatment is futile and there is no possibility of improvement.
The physician decides whether the disorder is incurable based on the actual state of medicine, and the patient alone determines whether suffering is constant and unbearable. The physician must have several conversations with the patient in which he ascertains whether the patient experiences his/her suffering as constant and unbearable.
The physician must inform the patient about their medical condition, prospects, and possible alternative treatments, including palliative care. He must consult another independent physician about the serious and incurable character of the condition. This physician does not need to be a palliative care specialist.
Taking voluntary euthanasia seems to me a little premature in this situation. Certainly it is tragic to not be able to see ones brother – the twins had lived together their whole lives, never having married. Not knowing the twins personally, I cannot speak to their quality of life, but for some reason I can’t help but feel that their life experiences may have contributed to their inability to conceive of a world where they could not see, and where they could not live without some help. I feel like the more people with disabilities are encouraged to experience the world, the world seems less bleak. I know that traveling has made me more confident about my ability to engage with the world, not less.
The first doctor who was approached to euthanize the twins refused them, stating: “There is a law but that is clearly open to various interpretations. If any blind or deaf {people} are allowed to euthanize, we are far from home. I do not think this was what the legislation meant by ‘unbearable suffering’.”
It seems that the twins had more medical issues than simply the glaucoma, but I can’t deny that the idea of helping people commit suicide just because they are going blind or deaf is discouraging. There are so many people who tell me that they would just die if they couldn’t see – like I can’t. So many people who have said that they would rather kill themselves than not be able to hear.
We live in a world of possibilities, one where adaptive devices, medical changes, and opportunities to live normal lives are cropping up every day. The surgery I had at 6 months old to give me the sight in one eye has improved vastly. I’ve met people who have had cataract surgery in the last year who see better than they did before the surgery. We can’t simply give up because we’re scared.
Since I was not in the situation myself, I can’t say if this was right or wrong, but I can say that it shook me very deeply, and made me question a lot of things about the way I live.
I can’t help but be uncomfortable with this choice, but I can educate myself about the choice they made. There’s no changing their decision, but hopefully we all can strive toward making the options for people facing deafness and blindness less bleak, and more hopeful. I hope that if I do go completely blind, or completely deaf, or both that there will be options which do not include suicide. Because I don’t want to give up.
Interesting situation. The definition of “pain” or “suffering” is completely subjective and shifts so much from person to person, I would imagine that what constitutes “humane” treatment also changes.