If politicians wanted to make a difference in the lives of people with terminal or degenerative illnesses, it’s high time they put talking about euthanasia and assisted dying on the national agenda, an activist has said.
Sam Debattista, a 23-year-old woman living with Huntington’s disease, told Times of Malta that politicians who say they are in favour of euthanasia but don’t work to advance the issue politically, are only trying to score points for themselves.
Diagnosed in her teens, Debattista has been advocating for euthanasia for five years.
“I had this discussion in the beginning with ministers, who say ‘you know on a personal level I’m completely in favour, but it’s not on the agenda and I cannot do anything because it goes against my party’s beliefs’,” she said.
“I don’t think they realise how hurtful it is, because what they’re saying is in my private life I can support you, but as far as representing you as a minority on my agenda, there is not much I can do.”
Debattista says the difficulty in advancing the argument for introducing euthanasia is because, as much as it can make an impact for those who are suffering from illness, no one wants to be seen as the harbinger of death.
“Issues like assisted dying, assisted suicide are not marketable. No one wants to be the person who stands up and says ‘yes, i’m in favour of death’. Even as an activist, I can tell you it’s very difficult to advocate for a dignified death,” she says.
“So, to have a government representative say it, it’s nice to hear they don’t condemn it completely, but it’s not giving us what we need, we’re not getting any closer to implementation.”
“What needs to be done is people need to stop talking and start doing, not using euthanasia as a chance to be seen as more liberal to win a few more votes.”
It’s a very, very safe and guarded option that’s not just given to anyone who asks
“We need to see action and follow through, take these conversations to your parties and to your governments and consider it seriously because, without your support, it will never be implemented,” she adds.
Debattista says that she had not given much thought to the issue as something she might have to one day decide for herself before her diagnosis.
“When I was diagnosed with Huntington’s disease, I felt very conflicted. I wanted to live my life, but at the same time, I didn’t want to lose my ability to live and outlive life itself. So that’s when I started looking into something like assisted dying and came across the organisation Dignitas,” Debattista says.
The Swiss organisation Dignitas helps people in the process of assisted dying and assisted suicide. In this case, a doctor would prescribe a cocktail of drugs, usually barbiturates, that the patient administered on themselves, as opposed to euthanasia, where the doctor participates in the administration of medication that ends a life.
“When I came across it, I felt like I almost gained a sense of closure, because I knew that I could live my life to the fullest, but actually get to take that life with me,” she continues.
“What people don’t realise is that in many terminal illnesses, the mind is jeopardised. So, it’s not just about the pain that the person is suffering but also the effects it has on the mind.”
“In conditions like mine, Huntington’s disease, the mind is the most that is affected. So, you become a shell of a person. Often there’s memory loss and your character does a complete 180.
I’m going to die just like everyone else is going to die. It’s just the means of dying that is changing.
“I didn’t want to have to go through that, and dying gave me that closure of not having to go through it because ultimately, the end is the same. I’m going to die just like everyone else is going to die. It’s just the means of dying that is changing.”
Debattista considers herself lucky to have an early diagnosis before symptoms, giving her a chance to get her plan and wishes for her future known before it was too late. Part of what inspires her activism is the plight of those who weren’t so lucky.
“Most people end up finding out too late,” Debattista says.
“So, when they are in that position of not being able to advocate for their rights, no one is voicing their opinion on the matter and their demand of options for unendurable pain.”
“I felt a sense of responsibility because I’m in a very lucky position to be able to still have the energy and physical ability to voice my wishes and to fight this, and to fight for the implementation of assisted dying. More than anything, it’s about voicing the concerns of my community.”
Presently, Debattista is looking into setting up an NGO to solidify campaigning for assisted dying and educate people on the safe and structured ways the concept could potentially be introduced.
“I think a lot of people misunderstand what we’re asking for when we talk about assisted dying, so education to get people to consider it a viable option is part of what motivates me because there is a lot of misinformation out there,” she said.
“When we look at how other countries are doing it, it’s a very, very safe and guarded option that’s not just given to anyone who asks. And I think, as if people actually understood the process of how it works and how people go about accessing it, they’d feel safer knowing that it is not as easy as just demanding it.”