First of all I would like to thank Mark Laurence Zammit for inviting me to participate on his programme, L-Erbgha fost il-Gimgha, which discussed the topic of euthanasia. I was impressed by his efforts to understand and to meet and skype with participants before the programme. I am also honoured and humbled after having met and discussed the experiences and in other cases the pains and efforts of Kenneth Frendo, Evelyn Saliba La Rosa, Sam Debattista and after the show a nice chat with Joe Magro. My experience with these people convinces me more than before the importance of recognising the wide ocean between theory and the phenomenological experience of people. Indeed, this is why at University I insist on distinguishing bioethics from clinical ethics. When we see patients, the whole dynamic changes. Bioethics is to clinical ethics in the same sense as pharmacology is to medicine. We all see and discuss patients but the context is very different and, given that there is some overlap, the responsibility mostly lies on the latter in both instances within the clinical experience while the foundation lies with the former. They are also usually performed by different professionals.
I felt the participants’ pain and their plight. I really do not know the answer, especially when we are not providing end-of-life care as we should. In fairness, this is a problem in many countries. What we need is more fraternity, solidarity and together finding meaning to help people with the assault of illness and suffering. Perhaps euthanasia is the answer to some; but it is also true that the answer that we often suggest – good palliative care – is not being very successful either. We need to invest more clinically, structurally, legally and socially.
As a person who works on Patients’ Rights, which is my remit at University, it is my responsibility to see both sides of the fence. This implies sitting on the fence for a while (in ethical equipoise), but only to be able to understand and to dialogue – much as a judge perhaps tries to understand the position of all contestants, without pre-judgement.
However, this equipoise does not mean not arriving to conclusions. People on opposite poles of an argument often not only do not understand each other as they are adamant on their position as the just cause, but unfortunately, they may not even try. This is the importance of the Public Dialogue, which the Prime Minister has put on the agenda. As I said in my last article Public Dialogue is something which the Council of Europe Bioethics Committee (DH-BIO) has advised countries. Conservatives may see this as a threat and liberals may take advantage of it; but only if it occurs in a safe non-judgemental environment. Television programmes, even if they are expertly made, as the one mentioned, is not a very safe environment because one is being exposed on television and there is a limited time to discuss. Other programmes may even have agendas.
In the programme one immediately realised that the first case was an unfortunate side-effect of the poorly coordinated palliative care system. This may sound like a bold statement, but the experiences of many relatives of dying people (including my own family) speak for themselves. Why should someone die in pain? The nursing and medical staff are excellent – and everyone attests to this. There are two things I can identify as wrong – the first is a lack of coherent and harmonised protocol within the hospital system on end-of-life care. In countries where palliative care works excellently, another palliative care consultant takes over the management. Palliative care is not only about pain relief but also about the needs of the patient, including existential and spiritual needs.
The second is a lack of legal comfort which health professionals need. That last dose of morphine will suppress respiration and may mean that the patient dies as a consequence. Yet this is allowed morally (even in the Catholic Religion) but the law is not that clear about it. It simply relies on standards of care. If doctors are to work with impunity they need clear guidelines to serve as a standard of care. Ironically, even by not giving that dose, thinking one is acting prudently, the relatives may still seek recourse to the law accusing us that we let their loved one in pain.
As to hospices, we are moving too slow. The Church has advanced on its promise to open a hospice (it has donated Cini Institute) but it will contain only around 20 beds, I am told. Government ought to intervene very urgently in this aspect. Even community houses can be converted in hospices, as is done in the UK. Governments ought to use the model used for elderly homes, which have been very successful.
Maybe the wish of those who want euthanasia comes to pass. But if this is done before we actually have done our maximum to relieve suffering, including existential suffering and support, those who are against euthanasia in theory will have no one to blame but themselves. My concern, as I explained, is that the slippery slope is evident from the experience of other countries. It will be used by people who are afraid of developing dementia, of becoming old, or simply that they feel the social pressure because they are a burden on society – the more vulnerable. For the rest we have to think whether the goal of medicine is simply to save lives and not involve patients more in the consenting process for life-prolonging treatment leading to severe disabled states. Certainly, refusing life-prolonging treatment is something which is a right and which is recognised but still needs legal clarification.
If we do not do anything about providing people with their rights, then we cannot lament that people seek alternative and easier methods. Countries who have introduced euthanasia admit that they have failed in providing palliative care to all. We are all going to die and many of us will get old and become dependent or develop dementia. On the programme I mentioned my aunt. In her own way she still had her dignity notwithstanding severe dementia. She made us all realise our frailty and vulnerability, even though she was formerly a headmistress and very much respected in town. It was not her any longer. Her dignity was not lost but remained in the memory we have of her life.
Public debate is not about people publicly shouting out their cause, defending a position; neither is it an arena for fighting it out. It is about dialogue, which means listening in a non-judgemental, safe and empathic way. It is not about defending a liberal, conservative or religious position. If anything, all should be concerned about fraternity and solidarity. It is not easy – I should know through my personal experience – but in no way did it change my values. What value would dialogue have if we are not ready to clear misconceptions, in this case on meeting acceptable end-of-life care, and to meet on common ground. The alternative is to allow ethics and values to become a statistic which, much like fashion, changes over time.
Pierre Mallia is Professor of Family Medicine and Patients’ Rights and teaches at the University of Malta. He chairs the Bioethics Research Programme of the Faculty of Medicine and Surgery. He also chairs the Bioethics Consultative Committee.
This article is his personal opinion and does not represent the opinion of any committee or board he serves on. Prof. Mallia can be contacted on: [email protected]