Re: Assisted Suicide
My wife has ALS and is now in critical condition. I m her caregiver from the beginning and this difficult road we took together have changed my view on many things including euthanasia. I can only speak about ALS and I know my point of view could be different with other experiences. One main think I learned is “you can not have definitive answer on the subject”.
After learning what kind of awful disease it is, I thought “with this condition, at some point, I would surely think of suicide” (I kept it for myself). I know my wife thought of something like that too. She kept it for herself for some time but eventually talked about it and finally asked for it. Now, I would not even think of it.
I think managing ALS is mainly about adaptation and humans have a real talent for adaptation. We were doing quite well as long as we were able to adapt to the disease. Surely some major turns were really hard on us like the wheelchair for example. But once you get the wheelchair, you begin to see it as the only way you can keep some mobility so you begin to like it. As long as we were able to adapt, we were quite happy I would say (Not all time, but who’s happy all time). Things began to go wrong few months ago when something broke. I don’t know really what is was but we were no longer able to adapt and my wife’s condition began to deteriorate at an accelerated rate.
This was at this time she began to asks for suicide. This was really dark times for us. At some point, situation went so bad she could not stay at home and she went to palliative care at the hospital. Since she is there, things continues to deteriorate on a physical point of view. Obviously the disease continues to kick hard. On the other hand, situation really improved on every other side. With proper medications for stress and pain we are now able to have few good moments for us. We know this will end badly but those moments are priceless.
She is still saying she does not want to live anymore. But on the other hand, she is fighting really hard not to leave. Since she is in the hospital, she overcame several acute respiratory decompensations all by herself. Medical team explained to me in palliative care, patients often ask for help to go but this is more a distress call than a request. In this kind of situation, when someone really wants to die, he does not fight and just die.
For the close ones like me this is also really hard. Seeing her like that on bad days is excruciating. Sometimes, I even wish this is over. But, when she is well enough to really be with me, this is priceless. When she have acute respiratory problems, things look really awful from an external point of view. But this is only what we feel, not her. She told me those episodes are not painful nor stressful at all for her, the medications are really effective managing those symptoms.
From my experience, I think assisted suicide is not the solution. End stage ALS can be managed by proper care and medications. I live in France and I like the french law position on the subject. Assisted suicide is forbidden. But, in a palliative care perspective, medical teams can use medication to control stress and pain, in accordance to the patient’s wishes, even if this medication presents life threatening risks.
Palliative care is an ethical dilemma by itself and such subject is usually not managed very well by laws. Humans are not painted in black and white but with many shades of gray. One can want two things at once really often and asking for one things does not mean we do not want something else. My wife does not want to continue living like that but she does not want to die. I want this suffering to be over but I don’t want her to die either. My wife is asking to die but acts at the opposite… How can you be able to put in place a law suitable to manage such complex situations?