Giving people a choice to die is not mercy, palliative care is mercy, Tonio Fenech, the chairperson of the Life Network Foundation, said, answering questions about Assisted Voluntary Euthanasia.

The Life Network Foundation had organised the campaign Oqtol l-Uġigħ, Mhux Lili, which is against the introduction of Assisted Voluntary Euthanasia (AVE) proposed by the government. Over 12,000 submissions against the government's plans were collected.

In a paragraph outlining the public consultation, the government had said that Maltese society had "begun a discussion on assisted voluntary euthanasia and how we can respect a person's dignity and autonomy in cases of terminal illness". The government's proposal is that anyone who has an incurable, irreversible terminal illness expected to cause death within six months would be eligible for AVE. The government is currently reviewing the feedback it received.

When asked whether a person with a terminal illness who is suffering and wishes to end their life should have the option to do so painlessly and with dignity, Fenech responded that he does not believe euthanasia provides dignity.

"The dignifying process is to provide palliative care, where you eliminate the pain, and the person dies surrounded by their loved ones with dignity. Telling me that someone is in pain means that our palliative care system is failing, not that we should give people a choice to die. That is not mercy, that is killing mercy. Palliative care is mercy."

"If we decide to say we are not giving someone proper care but letting them die, that is killing mercy. It is not dignity. I cannot even begin to comprehend the notion of saying that in giving people the right to choose to die, it would be giving them dignity."

In an interview with The Malta Independent on Sunday, Fenech said that the Life Network Foundation is completely against the introduction of assisted voluntary euthanasia, and stressed that its objective is to raise awareness that there's still a lot to do to improve palliative care in Malta.

Regarding calls that have been made for further investment in palliative care before a discussion on AVE is held, he said that "it would be very unfair for people to be presented with a so-called choice, when you're not really given a choice, because they might not be given palliative care".

He spoke of the need for more palliative care resources in the country, saying that he was told by doctors that there are patients in hospital who do not receive palliative care before they pass away.

'Once you address the pain issue, people would not choose euthanasia'

Regarding the mitigation of pain, Fenech said that today, with medicine, it can be eliminated. Once you address the pain issue, he said, "people would not choose euthanasia because they want to spend their last days in dignity with their family. That is the dignified death".

"We have a moral obligation as a society to support each other. This is what we believe in when we talk about social consciousness and social justice, that we do not leave people unnecessarily in pain because it costs too much to address it."

The Medical Association of Malta (MAM) recently said that the WHO Essential Medicines List for Palliative Care is designed as a minimum standard, a basic framework to help low- and middle-income countries provide relief for terminally ill patients. It includes 22 medications, it said. "While this list is important, it should not be mistaken for a comprehensive standard in a high-income European country like Malta," MAM had said.

Fenech said that the government seems to be saying everything is sorted and done on palliative care. "The 22 medicines recommended by the WHO are available, but that is the bare minimum. If you're not even providing that then you would not even be on the level of a third world country."

He said that the MAM came out saying that there are over 50 types of such medicine in some Western countries. "They've been requesting that another 30 be added to the list because the 22 we have don't address everything. Another point is that we only have one palliative care unit in the hospital, and that palliative care unit, which does excellent work, is only focused on cancer patients."

He acknowledged that some NGOs also provide palliative care, but he said that the government's Palliative Care Strategy overall says that "there is much more to do and that we are not up to scratch. It obviously commends the work of Hospice Malta, but the State shouldn't solely be relying on the voluntary sector. The State has an obligation, especially when it comes to people under its care."

"The strategy document also says that elderly homes should have palliative care units, and that a process began back in 2022. Do you know how many homes have this? - One, the Mtarfa home. There are over 50 State homes in the country, in addition to homes not owned by the State."

'If anything, this debate should start in 10 years' time'

Fenech also said that according to the strategy, the European Association for Palliative Care (EAPC) recommends two specialised palliative care services (one home care team and one hospital team) for every 100,000 inhabitants, but that according to the EAPC Atlas of Palliative Care in Europe 2019, Malta had 0.4 services per 100,000 inhabitants.

"So we are way below that. Trying to sell the idea that the issue of palliative care was sorted and now we will move for assisted voluntary euthanasia is mind-boggling, because the Palliative Care Strategy says that we need 10 years to come up to scratch, as the strategy is for 10 years. So if anything, this debate should start in 10 years' time if we reach those standards."

Asked what gives him the right to deny someone the option of having assisted voluntary euthanasia, he said: "Whatever is the right today, we don't present suicide as a right. Suicide is not a right."

During the interview, it was pointed out that there would be patients who would want to take control over the way they want to pass away. When asked whether the Life Network Foundation would ever consider accepting the introduction of Assisted Voluntary Euthanasia if improvements were made to the palliative care system, he responded: "We need to look at the other implication of introducing euthanasia and assisted suicide. First of all, let me be clear that what the government has proposed is not euthanasia. Here we are talking about assisted suicide. The government has tried to couch it by changing wording and saying voluntary assisted euthanasia. It's not. If you read the document, what you're talking about is effectively suicide. You have to take the substance yourself."

"This presentation of this romantic notion that there's a dignifying death in suicide is wrong in itself."

He argues that the principle of presenting dignity "as being 'as long as I am healthy, in control, able to take my own decisions, can independently eat, walk, decide for myself' is telling disabled persons and the bedridden, the people who have some unfortunate situation, that now they no longer have dignity, which is very dangerous. We have to look at the social implications of that message".

"Studies have shown that in countries where assisted suicide or euthanasia has been introduced, the people who actually choose that option more are the vulnerable, not the one-off we see on TV who say they want to have their right to die. It's the elderly who start feeling the pressure."

Fenech said that even if a patient's family doesn't put pressure, the patient would still start feeling the pressure, worrying that they are burdening their family.

He explained that palliative care doctors report that, upon being informed of their diagnosis and the absence of treatment options, some patients ask whether they can end their lives before the suffering begins. "Their answer will be 'we will not allow you to suffer. We will do everything under our care to make sure you are not suffering'. The discussion at that point completely changes, and turns to, for instance, whether they can live until a grandchild is born. Once the fear of pain is eliminated, then there are other things in life that the individual wants."

'No legislation is foolproof'

As for patients who could be in pain despite having pain meds, he said that in 99% of cases pain can be eliminated. "You cannot legislate for extreme exceptions, because the consequences of that legislation on the wider population are too large."

He said that there is no legislation which is foolproof. "While notionally I can say that I cannot control what a person wants to do with their life, the consequence of trying to cater for that in legislation has wider reaching consequences, which we see in countries like Belgium and Holland, where euthanasia is allowed even on children. When you realise where this can take us..."

Around 12,000 signatures against Assisted Voluntary Euthanasia were collected by the Life Network Foundation as part of the Oqtol l-Ugigħ, Mhux Lili campaign. Asked whether he believes this would be enough to stop the government from moving forward with assisted voluntary euthanasia legislation, Fenech said he hopes that the government "is serious when it says that it will analyse all submissions, because of the 15,000 submissions, 12,500 came through our initiative. There were also submissions made by other organisations, like the Medical Association of Malta, and they need to be assessed in the context of what they are proposing, not only as to whether it is a yes or no. From the submissions, the government cannot deny that the vast majority are saying 'invest in palliative care before you even open a discussion about euthanasia', and I hope the government does that".

"If the government (reaches its palliative care goal) in 10 years and has properly implemented this, and Malta is at a gold standard, then I'm open to a discussion on it. What I will say, however, is that countries that had a gold standard in palliative care and introduced euthanasia did not remain in the top league of palliative care, because the incentive for a government to continue investing in palliative care is reduced by the cost benefit of people dying earlier." 

"I don't have the belief that we can have a foolproof system. There are some provisions which were in the public consultation, such as a doctor having to certify that a person will die within six months, but we know it is wrong. Doctors said they only get it right one in four times. So you tell a person they only have six months to live, yet they live two-and-a-half years." 

He mentioned a patient who had been diagnosed with cancer and was given three months to live, but lived for a few years. "I'm sure they felt more dignified living those years... knowing yes that they are dying, but when you love somebody, every moment is a precious moment. That is dignity to me."

Fenech said that he will personally always remain against Assisted Voluntary Euthanasia, and went on to say that there are other issues the government should consider, "primarily the pressure this would place on the vulnerable groups who will start feeling as though they are a burden on society or their family. We are obliged as a society to protect the vulnerable. We do not have control over rich people who can afford to go abroad to do it. But the person who is vulnerable, who might feel as though they are a burden, and that unless they are properly cared for feel as though they have no scope, need to be protected. Euthanasia kills those people, mostly".

Fenech was asked about patients with a terminal illness who don't want to see themselves deteriorate, or for their loved ones to see them go through that. "A story had come out, where the person said that their family passed through two deaths. One was their aunt in Malta, who went through palliative care and died with dignity and the other case was another family member who lived abroad, who was told that they had terminal cancer. That family member did not tell anyone, planned euthanasia and a week before it being administered sent a letter to them saying his goodbyes. It was traumatic for the whole family... that they were not given closure, not given the opportunity to go and see him and tell him they wanted to support him and be with him.

"Such situations lead to guilt, and families start questioning why the person did not trust that they would be their for them, and asking if they had failed him. We romanticise this idea of not wanting the family to suffer, but create more suffering."