In 2002 Belgium passed a law allowing terminally ill patients to choose doctor assisted suicide (euthanasia) to end their lives if their medical condition is terminal, progressive and incurable. This allows patients who wish to seek a dignified end without being hooked on hospital machines and painkillers a path to do so. Controversially, this law also extends to patients who suffer from mental suffering. In 2014, the law was revised to include terminally ill children in their euthanasia laws. Depending on where one stands, this is either highly offensive or merciful, to allow terminally ill patients who’ve no hope of recovering their mobility or quality of life a dignified end to a painful life. This is far better than the alternative, where a terminally ill patient, hooked on machines and strong doses of pain medication to get through the day and requiring 24 hour, around the clock care, until the inevitable end comes.
All of this sounds well and good in theory. However, how ‘quality of life’ is measured is very subjective. The notion of just because a person is immobile, suffers from a terminal or degenerative disease or an incurable or untreatable genetic disorder, has diminished intellectual capacity is automatically assumed to be living a poor quality of life is a fallacy. And so is the same with the opposite, a person who is physically healthy, with no visible physical and intellectual challenges, this person is then assumed to have a great quality of life is also a fallacy. Both of these assumptions are wrong.
Stephen Hawking wasn’t supposed to make it past his 25th year due to his advanced ALS. He is now seventy-three years old. He’s married twice, fathered three children, wrote books, gave countless lectures and though his body has withered away, his mind is still sharp. Granted, he’s a special case due to his exceptional intelligence. There are a lot of people willing to help him financially and physically with his day-to-day needs. But had he accepted the doctor’s prognosis of his condition and he just sat there and waited for the end, or worse, had the option been available, chose euthanasia, instead of making the most of the time he has remaining, we would not know about one of the greatest minds of our generation.
The actor Christopher Reeve wanted to end it all too after he fell from a horse and became quadriplegic, not only was a quadriplegic, he needed help with everything, even breathing. He had no mobility except save for a finger and his breath. He couldn’t even hold his head up without assistance. This was a strapping man over six-feet tall in the prime of his life. He had a young son and young wife and an acting career in its prime. Besides being an actor, he was an avid sportsman and outdoorsman. Now his life is confined to a hospital bed with tubes going in and out of him. For Christopher Reeve to end his life would not have required doctor assisted euthanasia, they just had to unplug all the apparatus that was keeping him alive and breathing and nature would take care of itself. But at the urging of his wife, he agreed to give it some time to see if he could change his mind and find some way forward and if he didn’t Dana Reeve will reluctantly accept his wishes. But he changed his mind, not because he was religious, he wasn’t, he was agnostic, but he said he felt ‘hopeful’ after he accepted his new reality, and he felt with his high profile could do some good to the cause of treating spinal cord injury. So he spent the his remaining years campaigning for spinal cord injury research. He had one life pre-accident and had another life post-accident, both were equally meaningful in its own way.
Society has placed too much importance on the idea which in order to have a good quality of life, one needs to be intellectually and physically whole, without defect. Anything short of that, depending on the severity, begins a sliding scale into the poor quality of life territory. This is a false premise. What’s worse, it gives society the idea of people with degenerative or terminal conditions are a burden to society and its health care system.
The ‘quality of life’ for a person who’s got a terminal or degenerative chronic condition depends on many things besides the symptoms of their disease and the limitations it places. For example, does this person have a strong family network to help them with their day-to-day tasks. Does this person have access to adequate health care system to cope with their illness? Does this person have access to education which accommodates their needs? Does this person have activities and hobbies or even a paid job they can do to in spite of their limitations? Do they have a wide circle of friends? The presence or lack of these things can contribute to or diminish the quality of life for a person with terminal conditions.
The Economist did a short documentary about a Belgian girl Emily, who wishes to end her life due to prolonged mental suffering and she was no longer responsive to treatment. Emily is only 24 years old, the film starts eerily, she says by the time this film is over, she will be no longer. The category of mental suffering to be included in the euthanasia list of allowable illnesses was always controversial, even in liberal Belgium. After all, there’s no definite proof mental illness cannot improve over a person’s lifetime or that it’s all together incurable, untreatable or even unmanageable.
This girl Emily has suffered from outward signs of mental illness since the age of 12 (but she says she remembers being an anxious child since she was three years old and of not wishing to be ‘here’). She’s been to multiple hospitals, tried various treatments, therapies and medications, all to no avail. At the age of 24, she’s done. She’s done fighting the monster that is her brain. When asked what was the most difficult thing about her mental suffering, she says, when she has to pick herself back up off the floor everyday to go about her day, only to know the depression will return in five minutes and she has to do this over and over everyday. Anyone who’s suffered from depression knows how this feels. How you have to literally ‘psyche’ yourself up to do anything, take a shower, get in the car, drive to work, perform your job, get in the car, get home, crash and do it all over again. Everyday. It becomes exhausting. To just summon the energy to get out of bed can be too much.
She’s attempted suicide and was institutionalized for a while, when that failed, she’s resorted to self-harming. Her arms are full of scars from years of abuse. There is no question this girl is in tremendous pain and suffering. It’s in her eyes, her face, her demeanor. She never smiled in the whole film but once, when her mother told her how much she loves her and will ‘be with her until the end’, though she could never ‘accept’ it, no mother could. Until the end, her mother tried to get her more treatment options, doctors, hospitals until she begged her mother to stop.
Besides her mental illness, she is otherwise healthy. She’s able bodied, has a keen interest in photography, she has friends and family who care about her very much. When she told her two best girlfriends her ‘date’ had been set, one friend openly wept and begged her to reconsider, the other friend was too upset to say much except that she will eulogize her at her funeral and talk about how much their friendship meant to her. Emily reached out to comfort her friends, it was touching to watch. Emily knows she is loved, she feels the love, but still, she cannot conquer the monster that is in her head. When she applied for euthanasia, it took the government two years to approve her. She had to meet with a whole panel of doctors including a psychiatrist and her case must be approved by three doctors, they must all agree that she is unresponsive to further treatment and her condition will only worsen. The medications she is currently on are an assortment of mood stabilizers but none has lifted the darkness that consumes her.
When asked what would happen to her if the state denied her request, she said she’d die a slow, torturous lonely death, probably at her own hands. As this short documentary progressed, my heart sank. This lovely young girl, only 24, who has her whole life ahead of her, cannot see the any glimmer of hope or light, has chosen to end her life by lethal injection. If she only saw what I saw, a girl who needs help. More help than she’s already received.
When ‘the day’ came (patients are allowed to change their mind up to the last moment), her two best friends asked her if she was still going to go through with it, Emily hesitated. She said, for some reason, the answer wasn’t so clear anymore. In the end, she opted to not go through with it. She said two weeks before her death, her life became ‘bearable’, which was all she was after, to live a life that is ‘bearable’. Not happy, joyous or content, just bearable. She doesn’t know what changed (she’s not religious). She is still deeply depressed and ‘would rather not be here’ but she didn’t have those soul destroying meltdowns two weeks prior to her date with death. I was so relieved. I don’t know this young girl, but what a huge waste it would be if she ended her life like this. If she were to have good days, she’d never know it. If she were to ever feel happy again, even just for moments, she’d never know it. And this is the whole point, if one ends their life thinking there are no more good days left for them, they would never know if a good day presented itself and brought joy to them.
I believe her friends’ open outpouring of grief at her impending death changed her mind. Of course Emily knew her mother would be upset, that’s a given. But to see her friends openly weeping at the thought of her being gone, perhaps that alone helped change her mind. It’s often said, the best thing you can do for a person who is suffering from a mental illness is to be their friend. To show them they matter to you, even if they are in the midst of a psychotic breakdown. After all, to show kindness, empathy and sympathy to another doesn’t cost a thing.
Death is final. After one dies, all that was wrong cannot be righted anymore. It’s a path of no return, a fact not appreciated when one is in total utter despair. One only seeks peace when they’ve been battling depression and mental illness all their lives, but by choosing euthanasia, you won’t be here to experience the joy.
Of course many people view this issue from a religious point of view, but it’s the wrong place to start for this argument. Countries who sponsor doctor assisted euthanasia are always portrayed as trying to ‘play God’, without any regard or respect for human life. The other side of that argument is doctors are just providing a dignified end to terminally ill patients who’ve no chance of recovering. Of course in the grey parts of this argument there are lots of scenarios to consider.
What if when the law came into effect, a patient is already in a coma, who gets to decide what to do with them? What if a patient is not in a position to make a decision about their life due to dementia but at the same time they have another terminal incurable condition as well, who gets to decide on their end-of-life care?
Governments can try to think of all the ways to protect the vulnerable from abuse (children and the elderly), but a clever person with nefarious intent can always find a way to legally dispose of family members who’ve become a burden due to age and infirmity. This idea when one becomes old, terminally ill, disabled, and infirm, their lives cease to have real meaning and they are just sitting around waiting for the end, so what’s wrong with allowing that patient some dignity and choose to end their lives before it becomes too unbearable to watch, people are making presumptions about another based on what an abled bodied and healthy person’s perspective on what a good quality of life should be.
With my own experience with my grandparents. They both passed away from short but terminal illnesses. The short part was a blessing as they didn’t suffer from prolonged pain and suffering. Even though their illnesses were short, there were moments when it became too much for them and how they wished the end came sooner. We as their caretakers tried our best to make their last days comfortable and relaxing. Just sitting there providing quiet company was a relief to them, there’s no need to speak, just sit quietly. No one wants to lie there alone while they are terminally ill and dying. The moments of wishing to expire before their intended time were usually moments of intense pain and discomfort coupled with being totally bedridden and needing around the clock care, something they were not used to. They both took hour long walks daily and were healthy before illness struck them. Usually, when pain passed and we distracted them with other things, they were back to their normal selves.
A major concern for me with regards to euthanasia rights are the vulnerable population, especially the elderly. Children are vulnerable too but most parents spend far more time, money, energy and resources trying to find a cure for their children than they do for the elderly. When people become old, ill, infirm and feeble, it’s very easy to give way to thoughts of just ending it all so that they are no longer suffering and a burden to their families. But are they really burdens? Our parents and grandparents spent the best years of their lives raising children and some spend a good part of their old age caring for grandchildren, is it so awful that we repay some of that by being kind and patient caretakers in their last days? Even if their last days are actually last years? What does it say about a society which encourages euthanasia (by making euthanasia legal is a form of encouragement) just because a medical condition is terminal?
The whole euthanasia rights movement is centered on the concept of dignity for the ill and dying. To allow someone a dignified way out of an intolerable life blighted by illness and pain. But there also people, in spite of illness, pain and disability, opt to live their best lives, hopefully with the loving support of family and community and I don’t mean famous people we know about, I am talking about ordinary people, despite illness, pain and disability, go on living their lives to the fullest. There is courage and dignity in that too. That too is also a life that needs to be protected.