Well-known activist, founder of the Malta ALS Foundation and ALS sufferer Bjorn Formosa believes that the debate about euthanasia is being made prematurely, and that it should only be a very last resort.

Speaking with The Malta Independent, Mr Formosa explained that it is his belief that if a person is still able to communicate with the world in one form of another, there is still scope for living.

We want to improve the quality of lives. You cannot decide what state a person is in, and ultimately the choice is always individuals.

Mr Formosa believes that we need to speak about the living-will before speaking of euthanasia. As I have always said, the living will is something that gives peace of mind to all. If a patient fills out a living-will and gives their indication of what they require, the doctor will know what the patients wishes are precisely, as it is written black on white.

A living will is a written consent form which allows a terminally ill patient to decide not to receive treatment, should their state deteriorate to unmanageable levels.

Like that, the next of kin do not have to decide on behalf of the patient, and the patients can decide for themselves. Everything is written and confirmed from before, whether the person wishes to receive treatment or not when reaching a certain stage. This already takes place indirectly anyway.

Mr Formosa continued: In many cases, at least with regard to ALS sufferers, patients lose hope because they dont have adequate care, or rather the means to access adequate care. For example in my case, if I didnt have certain things, I would be much more negative.

So for those people living with terminal illness, who look at life in a very negative way and are suffering, I believe that everything should be done in order to improve that quality of life. I would try to leave the issue of euthanasia as the last option.

As long as a person can communicate their message in some shape or form, I believe that person can still do a lot. When a person has literally no way of communicating with the world, then the situation becomes much more difficult. As long as I have some strength left in my body, I always want to work in favour of life.

Look at that Italian guy, who became paralyzed, he is blind, and is enduring endless suffering. In that case, the scope for life is greatly diminished. I believe that we are jumping the gun when we speak of euthanasia in a number of specific cases, such as mine. Certain problems can be tackled through medical interventions, and we should fight to get more solutions.

If a person wants euthanasia, nobody can really control that situation, it is an individual decision.

ALS respite home

Last Friday, Mr Formosa, through the popular PBS programmeXarabank,managed to raise over 900,000 in order for the Foundation to realise its dream of setting up a specially equipped respite home for ALS sufferers.

Prime Minister Joseph Muscat announced that the government will cover the annual expenses of the home.

Yesterday, President Marie-Louise Coleiro Preca, through the Malta Community Chest Fund (MCCF), presented Mr Formosa with a cheque worth 10,000 in aid of the Malta ALS Foundation. Speaking at the press conference, Mr Formosa had said that he hopes the project will be able to give ALS sufferers some genuine hope and rest, and that they may receive treatment and care in a place specially equipped for the requirements of such patients. He expressed hope that at some point a cure would be found for the tragic illness.

Asked what his chances are of being able to see his dream project completed, Mr Formosa bravely said: Well, I used to work in iGaming, so I look at it as a game of odds. If I had to place a bet, it would be leaning more towards the side of me not living to see this project completed. It would be really difficult to see it done, but obviously I will do everything in my power to see it progress as much as possible. This project has given me peace of mind, in the sense that, with or without me, this project is going to happen and funds have been allocated, so that other ALS sufferers will have everything they need to improve the quality of their lives.

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Euthanasia should be a last resort Bjorn Formosa, ALS sufferer - Malta Independent Online