Euthanasia is one thing Louise Vella has thought about since she was a teenager. She tells Kurt Sansone why people should be allowed to express their wish to die in a living will.
Louise Vella was only 11 when her school PE teacher noticed something was not quite right and referred her to a neurologist.
It was at such a young age that she discovered the grim reality that would condition her views on life and death.
Louise was diagnosed with a motor neurone disease called Charcot Marie Tooth that she inherited from her mother. She will slowly lose control of her muscles.
“My mother only discovered she had CMT on the same day as my diagnosis,” Louise tells me in a long e-mail exchange from her home in Luxembourg.
She is 41 and the hereditary nature of the disease is the reason she and her husband of 15 years, Alan Delia, decided not to have children.
“The risk of passing it on is of 50 per cent on each child,” she says, adding her disease, unlike ALS, has a very slow progression.
CMT impacts the peripheral nervous system, affecting mainly the legs, hands and forearms but occasionally even breathing, hearing and vision. On the contrary, ALS has to do with the central nervous system.
“What these two diseases have in common is that they take away most of your muscles, and by most I mean over 50 per cent. But CMT does this really, really slowly,” Louise says.
Her reflections on euthanasia started in her teenage years. Louise says her belief that euthanasia should be legal is firmly grounded in a reality she has been living for 30 years.
She argues that any able-bodied person might end up in the unfortunate situation of having to decide when enough is enough. For the majority, fortunately, that situation is only hypothetical, she adds.
“But patients who have degenerative diseases do not have the luxury of dealing with hypotheses: they are more or less certain where their journey is leading them to… my shortness of breath, my weak bladder, my lack of sensation in my hands and in my feet aren’t hypothetical,” she says.
If I cannot love life and cannot laugh anymore, just let me be
It was the plea of ALS sufferer Joe Magro for euthanasia to be legalised that encouraged Louise to come forward with her thoughts on the subject. Mr Magro has appeared in front of the parliamentary Family Affairs Committee to make his case.
Louise’s concerns about how her own life will end are similar to those Mr Magro expressed in an interview with the Times of Malta. Both their pleas are for them to be able to choose to die in dignity when their bodies fail them and the pain becomes unbearable.
Louise makes it a point to emphasise that she loves her life. She works full-time even though she could easily be boarded out and live on an invalidity allowance. She does not let CMT affect her.
“My husband enjoys travelling and together we have to plan each and every step of our trips. We phone each and every restaurant, hotel, museum and beach we visit to make sure it is accessible for wheelchair users. It may sound tiring but my husband and I are used to this life and we deal with it all right,” she says.
Her condition does not scare her, she says, but neither does euthanasia. She agrees that patients enduring physical, psychological or any other form of pain and expressing an “unequivocal desire to die” should be granted this wish.
“One should write a living will declaring such a wish. I am not saying that euthanasia should be permitted in the case of people who cannot decide for themselves, or in the case of those who refrain from writing a living will.”
A living will offers every person the possibility to state clearly how she wants to be treated in case of a terrible accident or serious illness.
Advocates against euthanasia insist it can open a hornet’s nest. Apart from ethical considerations, they argue that euthanasia sends out the message that life is only worth living if you are able bodied and independent. They insist euthanasia goes against the dignity of life.
But Louise is unimpressed by these arguments. She leads a not-so-independent life but still considers it to be dignified. However, when she is close to her death, Louise does not want to be left to suffer unnecessarily.
“Why should someone affected by such a terrible disease have to travel to Switzerland and die there? Will I be able to travel after all? Why cannot I die with dignity, free from any pain?”
She then reflects on the phrase ‘dying with dignity’, noting that religious-minded people interpret this to mean that a suffering patient should be allowed to die naturally.
“I would not say this amounts to letting someone die in peace. That would be hell on earth for me,” she says, admitting she has never understood religion’s obsession with pain and suffering as some sort of welcome sacrifice.
“Isn’t not being able to walk or constant back and neck pain enough of a sacrifice? I love life and laughter. If I cannot love life and cannot laugh anymore, just let me be. Aren’t we meant to live a full life and then depart? What is so frightening about that?”
If voluntary euthanasia were to be introduced in Malta, Louise says she would find it so much easier to live the present without anxiety over what might happen to her in the future.
“I would not change a thing about the life I have been living, but should I ever reach a state where, apart from the foreseeable mobility limitations, I won’t even be able to breathe on my own, that would be the time to say goodbye,” she says.
But hers is not a selfish concern, as some might believe. Louise wants her husband to feel OK with her choice. How Alan will feel in such a situation, she says, is far more important than how she would. “It’s no use freeing myself from pain only to shift it onto him.”
Fortunately for Louise, Alan shares her concerns and agrees with her plea that the State should guarantee a person’s right to die with dignity.
He drops me a line by e-mail, telling me that he agrees with her interpretation, shared by many sufferers of motor neuron diseases, that ‘to die with dignity’ does not entail letting nature take its course. He would rather see these people being assisted to terminate their life even by active intervention.
However, he acknowledges the emotional difficulty this will create.
“Should we reach a state where my wife asks for active euthanasia, I would find it extremely difficult to accept her wish… examining this issue with cold logic when the event itself seems distant is one thing. Going through the traumatic emotions when the time comes is quite another,” Alan says.
My shortness of breath, my weak bladder, my lack of sensation in my hands and in my feet aren’t hypothetical
He contemplates the “hard” decision that for the time being seems to be far removed. The true essence of love, he says, is to respect his wife’s wish, even though dealing with the aftermath would be “heart wrenching”.
“To some, euthanasia may seem cruel. For me, obliging a loved one to endure physical and psychological pain, going against her stated wish to die with dignity, is even crueller,” he says.
In her e-mail, Louise points out that the photos she has attached may appear too cheerful for the subject matter. She wants them to complement her argument that she loves life.
“Never in my life have I asked ‘Why me?’. I’d rather bear the condition myself rather than having to watch it debilitating a dear relative or a dear friend, and better not to have any children rather than risk passing it on.”
Euthanasia is a bridge Louise and Alan will cross together sometime in the future. Meanwhile, they will continue to enjoy life.
Terminology explained
Euthanasia: Ending a person’s life to relieve suffering. The doctor administers a fatal dose of a suitable drug to the patient. This is also called active euthanasia because it involves a deliberate act by a third party to end someone else’s life.
Passive euthanasia: A situation where death of a patient is caused by withholding or withdrawing life-saving treatment.
Assisted suicide: Helping a person to kill himself. The doctor supplies the lethal drug but this is administered by the patient.
Living will: Written instructions that list how the individual would like to be treated at the end of his life. The instructions may give consent for euthanasia to be administered or for life-saving treatment to be withdrawn when certain conditions are met.
Where is euthanasia legal?
In Malta, the Criminal Code makes it clear that whoever encourages or assists another person to commit suicide shall face a prison term of not more than 12 years if the suicide takes place. A few countries have, however, legislated in favour of euthanasia:
Netherlands
The Netherlands became the first country to legalise euthanasia and assisted suicide in 2002. The patient must be suffering unbearable pain, the illness must be incurable, and the demand must be made in full consciousness by the patient.
Belgium
Belgium became the second country in the world to legalise euthanasia, also in 2002. In 2014, Belgium became the first country to legalise euthanasia for children.
Luxembourg
The Grand Duchy legalised euthanasia and assisted suicide in 2009.
Switzerland
Euthanasia is not legal despite widespread perception to the contrary. Assisted suicide is legal, however, and has been since 1937. The law does not specifically allow assisted suicide; on the contrary, it is illegal to help someone “for selfish reasons”, to commit suicide. But if the person assisting in the suicide can show that they do not have selfish reasons, then it is not illegal.
Canada
Medically assisted suicide was legalised in Canada in June of this year. However, while passive euthanasia is legal, the active form is not.
USA
Doctors are allowed to prescribe lethal doses of medicine to terminally ill patients in five US states. Euthanasia, however, is illegal. Oregon was the first US state to legalise assisted suicide in 1997.
kurt.sansone@timesofmalta.com