When people are administered pain relief to counter their discomfort as they are approaching death, it is not euthanasia, even when this shortens their life, bioethics professor Pierre Mallia, who runs the Bioethics Research Programme at the Faculty of Medicine and Surgery at the University of Malta, said.

In an interview with The Malta Independent on Sunday on the second EndCare project, which will focus on training professionals for proper palliative care in the community, Mallia said there is always a need to start discussion on subjects like euthanasia.

"It is more to do with perception, and how we see the world. If we see people die in pain, we will say ‘I don't want to die in pain’," Mallia said.

"We ought to give pain relief, even if it shortens their life. That is not euthanasia," Mallia said, adding that the Catholic religion accepts the administration of pain relief, despite shortening one’s life by a few days.

This is why the EndCare project was developed, Mallia said, noting, however, that it should not be introduced in such a way that people are led to believe that this is not palliative care, but rather stopping all treatment and leaving patients to die.

"You have one chance to get it right with that person approaching their end of life," he said. It is a matter of educating people on what we ought to be doing, Mallia continued.

Mallia noted that there are situations where, notwithstanding everything, people would want to end their lives.

He gave an example of a young person who is seriously injured and ends up paralysed. Mallia said that they might then want to choose euthanasia, because they argue that they have nothing else to live for. "You always have something to live for. What we need is society's help to allow you to realise those needs," he said.

"If there is no one to take care of them at home, eventually, they are put into an institution, and people come to clean them, change them and feed them," Mallia said.

"If we really want to respect the dignity of these people, we firstly have to give them the necessary support, in terms of someone to accompany them all day," Mallia said, acknowledging, however, that there is a lack of support.

He mentioned people who can volunteer to stay with them, make friends with them, or else takes them out of the institution, if they do not have the crucial support system at home.

"How can I have the arrogance to say ‘no’ to euthanasia, but then I do not provide you with this care?" Mallia, who is against euthanasia, said.

If as a country, Malta does not want euthanasia, then "we must be more benevolent and altruistic", he added. This is not solved by bringing in people from other countries to work, as is being done in elderly homes.

The question of euthanasia is an important one which ought to be faced in a suitable time, Mallia said, but first we ought to eliminate the 80% or more that do not need euthanasia, whose situation can be tackled with proper, medical, palliative and community care.

He commended Dar Bjorn as being an incredibly positive development, one that was introduced by a patient himself.

 

Fundraising and charity

Mallia said that these depend a lot on fund-raising and charity. "We ought to try to solve these issues by deliberately funding public debate and discussion – as they cost a lot of money, and implementing what is necessary," he explained, such as services for persons who are bedridden, for example, to be taken outside to meet other people.

"Without medicine, these people who were at their end of life would not be alive. Now, we cannot just throw them in a room. We must plan ahead," Mallia said, adding that there could be a point in time where professionals discuss with the patient about their future.

He argued that one might say that euthanasia is wrong, but on the other hand, a lack of proper care for those individuals, and abandoning them, is also wrong.

Mallia said that Malta is at a great advantage compared to other countries, due to its small population size. "We can deal with these problems, and we can be a beacon of hope within the European Union, if we are able to say that Malta has invested in this," he continued.

"There cannot be this conscience of ‘I do not want to be like that or in that situation’ and youths would then say they want euthanasia," Mallia said. The question ought to be, "why is that person in that situation? And what can young people do, so that when they come to that age, not be in that situation?" he continued.

Exercise and diet factor in, but this is not always the case, the professor said. He said that sometimes people go through unprecedented situations, such as an illness or an accident.

He said that the law can help, to a certain extent. Mallia said that the law needs to be clarified, in the sense that if extra pain relief hastens death by a few days, it is still accepted as the intention is to relieve pain.

"But the law cannot tell us to love one another. It must come from a certain altruism from this hermeneutic cycle and do to others what I would like done to me," Mallia said, adding that society must create this sense of responsibility, and a difference in mentality.

 

EndCare project, second edition

The second edition of the EndCare project will include yearly summer schools to train professionals, patient groups, and eventually a yearly conference for the public, on the proper palliative care in the community for people who are approaching their end of life, Mallia, who also runs the Bioethics Research Programme at the Faculty of Medicine and Surgery, said.

He spoke about the first Erasmus+ funded project, named EndCare, focusing on end-of-life care, conducted in collaboration with the Faculty of Theology and the Faculty of Law at the University of Malta.

Through several successful seminars and conferences held through summer schools in many countries for the first edition of EndCare, Mallia said that a curriculum for healthcare professionals so that they can be trained on proper end of life care was created. This must touch all facets, including the medical, legal, religious and cultural side.

He described the project as a pathway on how to implement training and change in the sector, as well as a pathway to implement change on a political level.

"We designed a curriculum, which is divided into eight parts, such as the social, religious, medical, legal aspects, and so on," Mallia said, adding that the curriculum involves how to develop standard protocols in hospitals.

After the project's success, the Covid-19 pandemic hit, and this slowed things down.

Mallia said that he had already begun thinking about the second project, EndCare 2, and decided to concentrate locally, and involve more faculties in the University, such as Nursing, Social Wellbeing, as well as patient groups, the Hospice movement, and several ministries.

The aim is to improve end of life care in the community, he said, adding that studies show that many people prefer to die in their own home, but this does not always occur.

"What we intend to do is that every year, the core group (a representative from each of the 11 faculty/groups involved) decides on a theme to focus on," he said.

The idea is to organise a yearly summer school, to involve the community, such as general practitioners, community nurses, hospice, members of the clergy, and others, to receive training in palliative care, Mallia explained.

This will eventually also move to in-house training for the public, as well as yearly conferences, addressing those who have a relative approaching their end-of-life, with Mallia saying that there is a lack of education. He mentioned a case where a family wanted CPR done on their dying father, which would not have helped much given his condition.

 

Medicine is also about human relationships

Mallia said that the reality is that the hospital needs a clinical ethicist, an ethics committee, as well as training, on how to deal with such cases, and at what stage.

"At the end of the day, medicine nowadays is not only about the practice of medicine, but also about human relationships," Mallia said.

He said that medicine has advanced, but the professionals do not perform miracles, and that the public might have greater expectations from professionals at the Intensive Care Unit.

"Nobody is immortal, and there comes a point that people have to accept that there are things doctors can assess, where they would know that the person is dying," Mallia said, adding that at this point, there is nothing more to be done, except for making that person comfortable.

In the community, Mallia said that these summer schools for professionals and patient groups would teach and disseminate information, so that people do not see death as a sudden tragedy and be prepared with their wishes.

"There comes a point where one asks, what can be offered?" Mallia said.

He said that an important part of the project revolves around the people who are approaching their end of life, namely the elderly, and how this is tackled in the community.

Mallia said that many elderly live at home alone, or else end up in elderly homes.

"Homes are not always the ideal place. Yes, they have custodial care, they are fed and cleaned, but not everyone knows how to occupy themselves there," Mallia said.

The project looks into these issues, how they can be improved and how people can be encouraged, he said.

He noted that many nurses and carers working in community homes sometimes do not know the basics of caring for the elderly. Mallia said that foreigners working in this sector should be trained, including culturally.

"There is a problem with language. They tell you they speak English, but it is mostly ‘yes’, ‘sorry’, ‘I will tell’ (inform others). That obviously frustrates some people," Mallia said.

He spoke of his blind father who now resides in a home. Mallia said his father had a background in management, and has made some suggestions to the home's management, which were even taken on.

"This is how the elderly can help. We can use their experience to improve certain issues," Mallia said.

 

Palliative care for elderly people

The project is to improve the palliative care for the elderly, which is different to palliative care for patients who have an illness, for example, Mallia explained, adding that certain treatments are good for the elderly, yet might not help other age groups.

Mallia noted that many professionals tend to refer patients to hospital, but "there is a lot which can be achieved in the community".

Mallia explained that an efficient method of palliative care involves supplying patients with essential equipment, for example, an oxygen tank for shortness of breath, without having to refer people in and out of hospital, which could also pose a risk, Mallia explained.

"When it comes to the end of life, we must also discuss with the relatives," Mallia emphasised, noting that the patient approaching their end of life could be referred to hospital if they wish, but in circumstances where nothing else could be done, it is better to avoid spending their last few weeks in hospital.

"We can recognise that the patient could be kept at home, comfortable, and with the necessary treatment for pain relief," Mallia said, adding that relatives must understand when a person is going to die.

He said that end of life is not a matter of fighting death at all costs, but one must accept when it has arrived, and when medicine cannot do anything further. The best thing would then be to discuss going to palliative care, and keeping the person as comfortable as possible, Mallia said.