Lars Johan Materstvedt
“Two friends, old sailing buddies, are planning a sailing trip in the North Sea later in the year, and they are discussing possible dates. “How about July 21st?” says Willem. “The sea will be calm, the moon bright, and there’s a music festival on the coast of Denmark we could visit.” “Sounds great,” answers Joost, “I’d love to get to the music festival. But I can’t be away then; the 21st is the date of my father’s death.” “Oh, I’m so sorry, Joost,” Willem replies. “I knew your father was ill. Very ill, with cancer. But I didn’t realize he had died.” “He hasn’t,” Joost replies, “That’s the day he’s going to die. He’s made up his mind and picked a date, and we all want to be there with him.”
Woody Allen famously said, “I’m not afraid to die, I just don’t want to be there when it happens”. But in the case of Joost’s father, everybody wants to be there. And a doctor makes the patient’s death happen at a particular date and time by using lethal drugs, upon the patient’s request. Now how would you like to die? Quickly, some say, like a candle blown out by the wind, avoiding a lengthy and drawn-out dying process with much suffering. Others do not mind dying slowly, as long as there is excellent palliative care and an opportunity to say goodbye to loved ones. In both instances, however, dying is something that happens to you. In recent years, in several jurisdictions dying is not just that anymore; it has become something that you may do yourself. This is the practice of “assisted dying”.
Debate – and confusion
Currently, there is much debate about assisted dying, and many have strong and opposing views about it. At the same time, there is widespread confusion as to the meaning of the term – not only among the public, but also among healthcare professionals. So what is it?
Assisted dying comes in three different “versions”. According to international convention, it comprises euthanasia (E), physician-assisted suicide (PAS) and assisted suicide (AS). Hence, the following “formula”: AD = E + PAS + AS.
The Dutch Medical Association KNMG states that “euthanasia means that the physician administers a lethal substance to the patient” at his or her “express request”. The European Association for Palliative Care (EAPC) definition basically says the same, however it is more precise in emphasising the voluntariness of the request (a request need not in itself be voluntary), as well as the competence of the patient: “A doctor intentionally killing a person by the administration of drugs, at that person’s voluntary and competent request”. This definition of euthanasia from 2003 was reiterated by the EAPC in 2016.
Across the world, euthanasia is only legal according to statute in The Netherlands, Belgium, Luxembourg and Canada. In Canada, nurses too may perform euthanasia; this is illegal in the BeNeLux countries. Strictly speaking, therefore, the definition of euthanasia needs the following amendment: “A doctor or nurse intentionally …”
Neither in The Netherlands nor in Belgium is there a requirement that the patient be so-called terminally ill. The two key elements of the laws in both countries are that the suffering must be (subjectively) “intolerable” and that there (objectively) is “no prospect of improvement”. This opens up euthanasia for those chronically and mentally ill as well. In addition, the Belgian law makes explicit reference to “accident”, meaning that a person who is paralyzed from the neck down may be eligible for euthanasia. Furthermore, a patient may have euthanasia in adherence to an advance directive. Finally, in The Netherlands there is a lower age limit of 12 years, whereas the Belgian law has no such limit.
Physician-assisted suicide (PAS)
The EAPC defines physician-assisted suicide in line with international usage: “A doctor intentionally helping a person to commit suicide by providing drugs for self-administration, at that person’s voluntary and competent request”.
Physician-assisted suicide has been legalised in the BeNeLux countries and in Canada, as well as in the US states of Oregon, Washington, Montana, Vermont, California and Colorado. In all six American states, a patient may only request physician-assisted suicide if he or she has a life-expectancy of no more than six months (which incidentally is also one of the qualifying criteria for accessing Medicare funded hospice care in the USA).
Assisted suicide (AS)
Assisted suicide is legally condoned in Switzerland’s penal code, however there is no law about it as such. A doctor must examine the patient and write the lethal prescription, but normally does not participate beyond that. Instead, the patient is taken over by a right-to-die organisation (like EXIT), which then uses its own procedures to assist the death.
In Germany, by contrast, there is a law on assisted suicide; however, it is unclear whether or not a doctor may be involved and, if so, to what extent. Assisted suicide carried out by nurses is also legal in Canada.
What assisted dying is not
Internationally, assisted dying is distinguished from “Life ending Acts Without Explicit patient Request” (LAWER). In the Netherlands, such acts constitute (medical) murder according to the penal code.
There are two subcategories of LAWER: Non-voluntary medicalised killing amounts to drug-induced death in patients who lack decision-making competence, such as seriously ill or disabled newborns and those suffering from severe dementia. This means that so-called newborn euthanasia is an entirely misplaced term; unfortunately, however, the term is frequently used both in scientific articles and in the media. Nevertheless, doctors may end the life of such newborns provided they abide by what is called the Groningen Protocol.
This was produced by Dutch neonatologists and neurologists in 2004, to guide doctors’ use of drugs “to speed up the dying process”. For details see chapter six of Euthanasia and Law in Europe (2008)
Involuntary medicalised killing is a term used to describe drug-induced death in patients who do have decision-making competence, but who have not requested euthanasia. For example in this context in 2002, physician Wilfred van Oijen was convicted of murdering one of his patients by the Dutch Supreme Court.
“Non-voluntary and involuntary euthanasia”
Outside the BeNeLux countries, the above two acts (LAWER) are often referred to in the literature as “non-voluntary euthanasia” and “involuntary euthanasia”, respectively.
However, since euthanasia is voluntary by definition in the Netherlands and in Belgium (as we have seen), “non-voluntary” and “involuntary” euthanasia should be considered a contradiction in terms.
“Active and passive euthanasia”
Similarly, the distinction found in some writings between “active” and “passive” euthanasia is also considered meaningless according to the Dutch definition, since from this perspective euthanasia is both voluntary and active by definition. The root of this problem is the article “Active and Passive Euthanasia” by philosopher James Rachels in the New England Journal of Medicine in 1975, which has gained the status of a classic and is often referenced. Unfortunately, even some medical associations have, in their position statements, adopted this confusing distinction.
On non-treatment decisions (NTDs) – and on unnatural death
What many designate as “passive” euthanasia is better characterized as a non-treatment decision (NTD), which includes withholding and withdrawing life-sustaining treatment, followed by natural death due to the underlying disease (sometimes called “allowing to die”). In The Netherlands, such acts are seen as forming a part of routine and mainstream medicine. By contrast, if a Dutch doctor performs euthanasia, he or she is required to report the patient’s death as unnatural (and state so in the death certificate) since then the patient never dies of natural causes; instead, a lethal injection causes death.
Public support for assisted dying, the situation in the UK, and “suicide tourism”
In many Western countries, there are forces working for a change in the law to allow assisted dying. As far as the public is concerned, in the Western world support for assisted dying legalisation appears to be increasing and is often in the region of 70%. In the UK a number of bills have been before the House of Lords and House of Commons, thus far failing to win a majority of votes. Bills have also been debated in the Scottish parliament. Noteworthy too is that the UK legal system on several occasions has dealt with cases of patients wanting to travel to, or who had travelled to, Switzerland to receive an assisted suicide, an international phenomenon known as “suicide tourism“.
“The rise of individualism”
I am of the opinion that the key element in the debate about assisted dying is “the rise of individualism”, which is seen throughout society in many areas of life, for example in the strengthening of patient’s rights to decline treatment (NTDs). I believe the pressure for legalisation is mainly of a cultural nature. Whereas developments within medicine also play a role in increasing demands for a “right-to-die” – for example, life expectancy is at a historic high and accordingly more people get ill and stay ill for a longer period of time – medical advances appear to take a back seat in this picture. As illustrated by the fact that never before has control of pain and other symptoms been as good as today, still the demand for assisted dying legalisation has never been stronger or more widespread either. This paradox does however make sense if explained by the (individualistic) phenomenon of more and more patients wanting to be in charge of the time and manner of their own death – as, among other factors, testified by recent sharp increases in the number of assisted dying cases both in The Netherlands and Belgium. Dutch developments in the last few years are portrayed well in the Guardian article “‘Any taboo has gone’: Netherlands sees rise in demand for euthanasia” (2017). A very good source for Belgium is the article “The Death Treatment. When should people with a non-terminal illness be helped to die?“, in The New Yorker (2015). The latter also provides the interesting story of how philosophers, my Belgian colleagues that is, came to play a pivotal role in legislative processes in the country.
I foresee assisted dying legalisation in the UK, across Continental Europe and the USA as well as in Australia and New Zealand, in the not too distant future. There is pressure building in several places. Indeed, the Australian state of Victoria has just passed an assisted dying law which will come into force June 2019. It will be interesting to see whether other laws, in
other places, will be passed as well before that time.
Lars Johan Materstvedt is Professor of philosophy and in medical ethics at the Norwegian University of Science and Technology (NTNU), Trondheim. He is a Visiting Professor, Glasgow End of Life Studies Group, University of Glasgow. He was previously a researcher with the Norwegian Cancer Society, conducting interviews with terminally ill cancer patients at a palliative medicine unit about their attitudes towards, and wishes for, euthanasia and physician-assisted suicide. He chaired the Ethics Task Force on Palliative Care and Euthanasia of the European Association for Palliative Care (EAPC). He also sat on a committee of the Norwegian Medical Association (NMA) that revised the organization’s 2001 Guideline on palliative sedation for the dying.