[WATCH] ALS sufferer’s plea for debate on assisted suicide: ‘I don’t want to live in indignity’

Why we need a debate on assisted suicide: Joe Magro, ALS sufferer

56-year-old Joe Magro has potentially only a few months, or at best a few years, to live and unless euthanasia is introduced he is resolute in taking matters into his own hands 

Magro was diagnosed with ALS, a deadly neurodegenerative disease that affects nerve cells in the brain and the spinal cord, some 10 months ago.

“I do not want to be a burden on anyone. I do not want to be dependent on my family to eat, drink, wash or simply go to the bathroom. I will live as long as I can but once it gets to a point where I cannot live life in dignity I will commit suicide.”

Magro says this with an eerie calmness but he steadfastly explains that he will only take his life once his condition deteriorates to a point which impedes him from living independently. 

“I want to live life to the full but I want to have access to euthanasia once I cannot live life in dignity,” he added. 

Most ALS sufferers live between two and five years after the first signs of the lethal disease emerge and only 10% of people with ALS survive at least 10 years.

“I don’t know how long I’ve got, but 90% of ALS sufferers do not live for more than two to five years.” 

Magro, who lost his first wife to cancer 17 years ago, says that he has the full support of his second wife and four children. 

Asked whether he is scared of taking such a drastic step, Magro said “that’s why the State should introduce euthanasia. But in the absence of such a law I’d rather commit suicide than live without dignity.”   

Within a few months of his diagnosis, Magro could no longer write or shave and although he still works at an ironmonger on a part-time basis he can no longer stand straight for a long time and “walks like a drunk”. He also has difficulty in speaking flowingly, but this doesn’t stop him from expressing himself clearly. 

Magro says that for the time being he feels good enough to continue working, at least for the next six months, and explains that he is investing some €20,000 in a modified vehicle which will allow him to drive even if he is wheelchair bound. 

Living in the knowledge that his condition might deteriorate rapidly any time soon, Magro calls on legislators to start debating the matter urgently.

“I do not have much time, and if the law is not in place by the time my condition worsens, my action will also serve as an act of protest.” 

Magro has met politicians from both sides of the political divide, including civil liberties minister Helena Dalli and her PN counterpart, Clyde Puli. 

While both said that they would be discussing the issue within their respective parties, there is no sign of an imminent parliamentary debate.

“I am aware of the concerns and reservations on such a law, but the debate needs to start and imminently,” he said. 

Magro added that Malta should look at the legislative models in Switzerland, Germany and Canada and stressed that “euthanasia should not be made easy, but should be regulated by a strict legal framework as is the case in Switzerland and elsewhere.” 

“People should not be allowed to resort to euthanasia easily, but there should be rigorous checks by doctors and psychiatrists to ensure that the patients are consciously making an informed decision and there is no prospect of an improvement in their conditions.” 

Magro has also asked for an appointment with Archbishop Charles Scicluna, but despite being told that the meeting will take place this has been postponed a number of times. 

“The Church has a right and a duty to speak out but it should not impose its beliefs on the rest of the country. It would do a great disservice to the country if the Church once again wages a war as it did, to its own detriment, in the divorce referendum.” 

What is ALS?

Amyotrophic lateral sclerosis (ALS), a progressive neurodegenerative disorder, also known as motor neuron disease (MND), attacks certain cells in the brain and spinal cord needed to keep body muscles moving. 

Most people with ALS live between two and five years and about 10% of people with ALS survive at least 10 years. This variable rate of disease progression makes prognosis difficult to predict and therapies challenging to develop. 

Currently, there is only a single medicine specifically treating ALS – riluzole, but the drug, sold under the name Rilutek, extends survival by only about two to three months. 

Most ALS sufferers first feel muscle cramps, spasms or twitching in one of their arms or legs. Other signs include weakness in the hands and feet or loss of balance. About 25% of people with ALS first have trouble talking clearly and slur their words. 

As the disease progresses, many muscles weaken and start to stiffen and sufferers tire easily and their breathing may also be affected. 

In the final stages, muscles become paralysed but the patient’s mental capacities remain intact. Most people with ALS require a wheelchair to get around and may communicate through assistive devices using an eye-tracking device or a letter board. 

Most people lose the battle with ALS due to respiratory failure. 

What is euthanasia?

Euthanasia is the termination of a very ill person’s life in order to relieve them of their suffering. A person who undergoes euthanasia usually has an incurable condition. But there are other instances where some people want their life to be ended.

In many cases, it is carried out at the person’s request but there are times when they may be too ill and the decision is made by relatives, medics or, in some instances, the courts.

Euthanasia is illegal in Malta and in Europe it is only legalised in Belgium, Germany, Holland, Luxembourg and Switzerland. 

The issue has been at the centre of heated debates for decades and is caught up in religious, ethical and practical considerations.

Euthanasia raises a number of agonising moral dilemmas, including whether it is a right, whether it is ever justifiable to end the life of a terminally ill patient who is undergoing severe pain and suffering and whether there’s any difference between killing and letting someone die. 

Many ask whether people should have the right to decide on issues of life and death while others argue that euthanasia shouldn’t be allowed, even if it were morally right, because it could be abused and used as a cover for murder.

Euthanasia can be carried out either by taking actions, including giving a lethal injection, or by not doing what is necessary to keep a person alive. 

Most people think unbearable pain is the main reason people seek euthanasia, but some surveys in the USA and the Netherlands showed that fewer than a third of requests for euthanasia were because of severe pain.

Terminally ill people can have their quality of life severely damaged by physical conditions such as incontinence, nausea and vomiting, breathlessness, paralysis and difficulty in swallowing.

Psychological factors that cause people to think of euthanasia include depression, fearing loss of control or dignity, feeling a burden, or dislike of being dependent.

Types of euthanasia

Euthanasia can be classified in two categories: active euthanasia, where a person deliberately intervenes to end someone’s life by for example, injecting them with a large dose of sedatives, and passive euthanasia,  where a person causes death by withholding or withdrawing treatment that is necessary to keeping the person alive. 

Euthanasia can also be divided between voluntary euthanasia, where a person makes a conscious decision to die and asks for help to do this and

non-voluntary euthanasia, where a person is unable to give consent (for example, because they are in a coma) and another person takes the decision on their behalf, often because the ill person previously expressed a wish for their life to be ended under specific circumstances.

Active euthanasia is only legal in Belgium, Holland and Luxembourg, where a person’s life can be deliberately ended by their doctor or other healthcare professionals. 

The person is usually given an overdose of muscle relaxants or sedatives. This induces patients into a coma and then death.

Assisted suicide and passive euthanasia are legal in Switzerland, Germany, Mexico, Canada and some US states. 

Expert's view

Mariella Dimech, a psychotherapist, said that the issue of euthanasia is a very controversial one but the moral aspect should be tackled separately from the psychological one. 

While insisting that anybody with a sound mind should have the liberty to decide what to do with their life, Dimech asked “but who is to decide that somebody else’s life is not worth living?”

Dimech added that apart from assessing the psychological condition of the person requesting euthanasia the same must be done with the people assisting the person, including the family. 

“Whoever decides whether the person asking for euthanasia or assisted suicide is of sound mind is assuming a great responsibility. Moreover, I would also look into whether the people assisting the patient to commit suicide can deal with it before taking any decision.”

She added that a difference must be made between people suffering from a deadly disease and people who are depressed or mentally unwell. 

Dimech however warns that before embarking on a national debate on the introduction of euthanasia, the country should look into whether enough is being done to improve the quality of life of terminally ill people. 

“Firstly we should look into how much the country is doing to help terminally ill people psychologically. There’s no doubt that we are providing patients with all the necessary physical support but the psychological aspect has taken the backseat,” she said.

Underlining the importance of research in the sector, Dimech pointed out that people seeking euthanasia should first look into what kind of life they can lead in spite of their medical condition.

Dimech herself has come across many patients suffering from a deadly disease who however found a meaning in their life and “perceive life on a completely different level” than people who seek assisted suicide.