Deliberations on end-of-life care and euthanasia

Ever since various prominent individuals spoke openly about euthanasia, the issue has remained a subject of discussion and debate. In the last three months alone, it was the topic of various television shows and online debates. Back in 2016, the issue was also discussed in the Parliament’s Family Affairs Committee. The fact that euthanasia, almost a taboo subject not so long ago, is now high on our or agenda shows how our societal values are changing and we must be prepared to openly discuss awkward themes. On such sensitive topics the last thing we need is a rushed discussion, God forbid closed solely within the chambers of Parliament.

So why are our opinions changing? Suffering did not change, ailments did not change, treatment has rather improved but we still feel the need to discuss and potentially legislate towards euthanasia or assisted dying, as euphemistically referred to. Furthermore, palliative care in Malta is strong. Whilst some believe that palliative care is the solution to alleviate suffering others believe it may not be enough.

What is palliative care?

The textbook definition of palliative care is the care of patients with active, progressive, far advanced disease, for whom the focus of care is the relief and prevention of suffering and the quality of life. Globally, over fifty million people die each year. It is estimated that a good proportion of people die with unrelieved suffering, uncontrolled physical symptoms; in fear and loneliness. WHO declares that the relief of suffering is an ethical imperative and every patient should have the right to palliative care. Every health system is expected to provide relief from pain and physical symptoms, maximise the quality of life, provide psychosocial and spiritual care whilst supporting the family during the patient’s illness and bereavement.

Is palliative care on its own enough?

The answer is somewhat subjective; many believe that if treatments such as palliative sedation removes all the suffering, palliative care is an adequate enough end-of-life treatment. Palliative sedation refers to the practice of relieving distress through continuous intravenous sedation; for the non-medical folk like myself you can look at it as intentionally putting someone in a semi-conscious state to numb the pain and relieve the suffering. Some would argue, ‘but for how long can you put someone on palliative sedation?’ And what value does life have if you’re living in a semi-conscious state for months on end with no hope of coming back? Potentially this may be the reason why we are softening our attitude on euthanasia from the non-negotiable position of twenty years ago.

We are shifting from simply appreciating the value of life to giving more weight to the quality of life. As a matter of fact, some might argue, what quality of life is there to simply lie unconscious in a hospital bed waiting for time and nature to take its course? What sense does it make to postpone the inevitable whilst causing immense heartbreak to family and loved ones? Why is it harmful to society to compassionately provide another alternative to anyone who is terminally ill, suffering great pain and has no prospect of recovering? Maybe it is high time that we all appreciate that different people have different values. Maybe it is high time we appreciate that whilst some people take decisions on end-of-life based on emotions, others adopt a more pragmatic approach; in this case granting more rights to the pragmatic does not take away anyone else’s rights and does not force anything on anyone.

Doctors remain hesitant…

End of life decisions are also challenging for doctors. In palliative care they are often expected to provide advice and guidance as to how to take care of patients that may be suffering. In a recent debate by Fondazzjoni Ideat, Prof. Pierre Mallia explained how certain palliative care treatments are legal, even if administering could also hasten the onset of death. For example, there were cases were doctors were accused of ‘killing a loved one’ after administering doses of morphine to alleviate suffering. So one may argue, if such issues are arising now about palliative care treatments; does legalising euthanasia spell more trouble for doctors? Therefore, the discussion on legalising euthanasia may need to be extended to cover other end-of-life care themes.

In Malta we do not, as yet, have a law governing advance care directives. Advance care planning offers people the opportunity to plan their future care, including medical treatment while they still have the capacity to do so. Also referred to as a living will, any person would have the right to document what treatment to receive, when to withdraw treatment in case they become unable to communicate. At present, such requests remain at the discretion of the attending physician. Regulating advance care directives will not only provide additional peace of mind and legal protection to medical practitioners, but allows us all to plan how we are cared for in our final days.

The risk of the slippery slope

Many critics of euthanasia claim that introducing euthanasia will create a slippery slope effect. The argument is that a relatively small step leads to a chain of events culminating in a significant (typically negative) consequence. Critics of euthanasia anticipate that legal conditions for euthanasia become less restrictive over time whereas individuals start requesting euthanasia for less serious, non-terminal and curable conditions. Thus, in order to prevent such ramifications, we should resist taking the first step altogether. Whilst the fear is legitimate and we need to remain guardians of the legislative process, we also need to look at what happened elsewhere, in places where euthanasia has been legal for some time now.

The state of Oregon in United States introduced the Death with Dignity Act in 1994. In its annual report, the Oregon Health Authority states that, as of 2019, 90% of reasons patients gave when requesting euthanasia were loss of autonomy, dignity and incomparable pain. On the other hand, depression and other psychiatric disorders were, according to nurses, relatively negligible. The Netherlands officially started tolerating euthanasia in 1985 and nowadays, together with neighbouring Belgium, have a very liberal approach. Today, 4.2% of its deaths are attributed to euthanasia. The average age of patients opting for the procedure is 72 years.

Whilst euthanasia due to psychiatric conditions is permissible in Netherlands, it only accounts to 1% of all euthanasia requests, or 0.04% of all deaths. Contrarily, 78% of requests are attributed to severe loss of quality of life due to worsening terminal conditions and a further 15% to loss of independent function. It is often said that good ethics depend on good facts. Hence, statistics show that the chances of requesting euthanasia because someone has simply given up on life are negligible. Can we deny the right to end immense suffering to our terminally ill, because of a fear that has failed to materialise, even in the most liberal of countries?

Right to a painless transition

We all value the notion of respecting that we may have different wishes, wants and needs in our lives, we all value the notion of adhering to the wishes of the deceased, so can’t we also accept that some of us might also want to voluntarily plan how to do the transition in order to avoid pain and suffering? It would be an immense disservice to the electorate if our politicians fail to listen to what is being said by the general public. Even if we are not ready to legislate at this point in time, discussing and forming an informed opinion on the subject matter is paramount.

Public debate may not stop, but ultimately it is our legislators who need to take it to the next step. Quite simply, validated information leads to healthier discussions; resulting in positions that are relevant to the needs of a changing society.

Brian Scicluna is Vice Chairperson of Fondazzjoni IDEAT

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Dr. Mark Said
Dr. Mark Said
11 months ago

It is high time that we amply and openly discuss euthanasia on the basis of accredited experts in the field and with opinions available from opposing schools of thought. I am growing old myself and I have seen too many acquaintances of mine suffering needlessly harrowing and agonizing pain, while hopelessly waiting for an early exit from this world. Palliative care might help in providing some temporary relief, but if a terminal patient is fully conscious and resolute in his wish to pre-empt an excruciating death why should he or she not have the lawful possibility of being assisted in ending his life prematurely and in a humane and painless manner?

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