Assisted dying hasn’t resolved Swiss end of life debates

Despite attempts to normalise it, new challenges still arise.

Markus Zimmerman

Markus is Professor of Moral Theology and Ethics at the University of Fribourg, Switzerland.

A single bed, wiith an unmade colourful duvet stands in the corner of a room. A hoist reaches over it from the corner.

The dying room, Dignitas Clinic, Zurich.

Dignitas.

While countries such as Germany, France or the UK are currently struggling to find a suitable regulation for assisted suicide, their peers in the Netherlands, Canada and Switzerland have years of experience with the controversial medical practice. Even if each state must explore its own ways of dealing with these ethically controversial issues, it is obvious that international experience should not be ignored as they try to find a way forward.

In Switzerland the discussions and challenges surrounding assisted suicide are increasing rather than decreasing. Contrary to the idea that a liberalisation of assisted suicide would lead to fewer debate, tensions and difficulties are increasing. My observation, and thesis, indicates that practices such as assisted suicide cannot be “normalised”, even in the medium and long term.

Developments

In recent years, one to two per cent of all deaths in Switzerland were due to assisted suicide. From an overall perspective, this practice is therefore still a marginal phenomenon. However, a look at the total number of assisted suicides per year gives a different impression, as this has increased more than fivefold in the years between 2008 and 2020, from an initial 253 to 1,251 deaths per year, a rising trend. The cause of death statistics for Switzerland only include those cases of assisted suicide in which persons resident in Switzerland were involved and the death was reported to the authorities. According to the Swiss Federal Statistical Office, in 2020, it was mainly people over the age of 64 who made use of assisted suicide. Detailed information on the underlying illnesses of the people affected in 2018 shows that about 40 per cent were affected by cancer, just under 12 per cent by diseases of the nervous system, a further 12 per cent by cardiovascular diseases and just over a third by other illnesses, including dementia and depression. There are currently seven right-to-die organisations in Switzerland which play a leading role in a typical assisted suicide procedure. They work closely with doctors who are prepared to prescribe a lethal drug, generally Pentobarbital. The data reflects an ambivalent picture: on the one hand, the proportion of assisted suicide cases is relatively low in relation to all deaths and, for example, in comparison to the large number of people who die in Switzerland in a state of deep sedation until death; on the other hand, the number of assisted suicides in Switzerland has risen sharply in recent years.

Perceptions and assessments

Since the 1990s, the public perception and assessment of assisted suicide in Swiss society has changed from an initially cautious and sceptical attitude towards broad acceptance. While the debates in other countries are characterised by relatively sharp controversies between those in favour and those against, public discourse in Switzerland has been less polarised. There are indications of a certain normalisation of the situation, the strongest sign is that Switzerland has so far refrained from regulating assisted suicide in a separate law. The results of a recently-published study on the opinions of Swiss people over the age of 55 regarding assisted suicide confirm these impressions.: The survey showed that over four-fifths of respondents support legal assisted suicide, almost two-thirds can imagine asking for assisted suicide themselves at some point, and that almost one-third are considering becoming members of an right-to-die organisation in the near future, with one-twentieth of respondents already being members at the time of the survey in 2015. Among people with a higher level of education and older people aged between 65 and 74, approval of assisted suicide and corresponding practices was higher than among less educated, younger and very old people; approval was also significantly lower among religious practitioners.

Sensitive topics

The fact that assisted suicide enjoys broad support in Swiss society as a whole does not mean that there are not difficult and controversial aspects relating to its practice. Relevant topics include, in particular, places of death, authorisation criteria and procedures.

Places of death: Assisted suicide is permitted also for mentally ill persons in psychiatric clinics, but the federal court recommends great caution here and requires two psychiatric expert opinions to ensure that the person willing to die is capable of judgement with regard to the desire to commit suicide. Although assisted suicide for children and adolescents has hardly been an issue in Switzerland to date, the corresponding debates are currently being held in Canada and elsewhere. The question of whether people in prison also have a right to make use of assisted suicide, has been the subject of intense debate in Switzerland for years, with a generally positive response. The question of whether right-to-die organisations should be given access to acute hospitals and nursing homes is still the subject of controversial debate, with regulations varying from hospital to hospital, nursing home to nursing home

Authorisation criteria: With regard to the admission criteria for persons willing to die, the capacity for judgement is at the centre of attention: while the importance of the criterion is undisputed in itself, there is a struggle for reliable standards and procedures to reliably test this criterion. Since the publication of the SAMS ethical guidelines Management of Dying and Death in 2018, the criterion for end of life and, depending on this, that of unbearable suffering have received new attention due to an objection by the Swiss Medical AssociationFMH. While the guidelines are based on the criterion of unbearable suffering, the FMH wants to stick to the near end of life. It is certainly difficult to diagnose the existence of unbearable suffering, as the international debate on the significance and assessment of existential (neither physical nor psychological) suffering shows. This difficulty is illustrated by the debate that has been going on for several years in Switzerland about so-called old-age suicide and the inherent criterion of tiredness of life. At the centre of the dispute is the legally difficult question of whether a doctor is also allowed to prescribe a lethal drug to a healthy person.

Procedures: Here the role of the medical profession and right to die organisations is by far the most important issue. In contrast to the physician-centred models in Belgium, Canada and the Netherlands, the Swiss model of assisted suicide is based on the idea that every person has the right to end their life and may call on the help of any other person to do so. Although the medical profession is usually involved in the process, the management of the procedure is normally the responsibility of a right-to-die organisation. This division of responsibilities is always up for debate when legal regulations are being considered, in which doctors should tend to take the lead in the process due to their professional background. There is also a debate about how and by whom compliance with the authorisation criteria should or could be monitored, whereby it remains to be decided whether this should be carried out before or after the death. At present, a certain amount of monitoring takes place following a suicide, insofar as the authorities investigate the cases afterwards. There is also debate as to whether Pentobarbital is a suitable means of suicide, especially if this barbiturate is not administered intravenously but taken orally; there is no knowledge of how many cases are currently administered intravenously and by whom an infusion is then set up. Last but not least, consideration has already been given to the use of lethal drugs, such as helium gas, which can be obtained over the counter.

Attempts at regulation

Political efforts to regulate assisted suicide in Switzerland in a more nuanced way than today have been made since the 1990s but have remain largely without consequences to date. In relevant judgements by the Federal Supreme Court or in statements by the Federal Department of Justice and Police, reference is regularly made to the ethical guidelines of the SAMS. These are classified as soft law and are therefore not legally binding, even though their content has become the subject of dispute. The National Advisory Commission on Biomedical Ethics (NCE) had already recommended more far-reaching legal regulation in 2005 as part of a detailed opinion on the subject; in the opinion of the NCE at the time, the review of authorisation criteria, a justifiable regulation of assisted suicide for the mentally ill, children and adolescents and state supervision of right-to-die organisations, should be ensured by law. The question is what form a legal regulation can take that grants the medical profession far-reaching powers but at the same time prevents medical paternalism (in favour of or against assisted suicide). From the perspective of Swiss experience, this is “a square circle”: either the doctors retain the final decision on who receives the barbiturate, or official access rules are established, the review of which does not generally require medical expertise.

The outlook

In the short and medium term, it can be assumed that the number of assisted suicides in Switzerland will continue to rise. The coronavirus pandemic and the particular difficulties faced by nursing homes during this time are likely to exacerbate this increase. In view of these expectations and the legislative processes in other European countries, pressure is likely to increase in Switzerland to create a legal regulation. Overall, I think politically it will be important to create a legal regulation, in order to ensure legal equality and legal certainty on the one hand and prevention of abuse and expansion on the other. At the centre of social-ethical reflection is the challenge of learning to deal with the pluralism of different ideas of a good death and to develop and establish alternative models to medically assisted dying. The thesis I mentioned at the beginning is confirmed today: assisted suicide in Switzerland can hardly be normalised; new problems, challenges and demands are constantly arising. Suicide, whether with or without the help of another person, always means an existential transgression that defies normalisation.

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15 October 2024

6 min read

The elegies that fail the forgotten places

Storytelling’s not about giving people a voice, it's about listening to what they’re singing.

Elizabeth Wainwright

Elizabeth Wainwright is a writer, coach and walking guide. She's a former district councillor and has a background in international development.

A book's front cover beside a portrait of the author, JD Vance

J.D. Vance book promotion, 2017.

Does it matter who tells the story of a place? It’s a question I’ve sat with as a writer, a community worker, and as someone who returned to my native West Country after a long time away. My departure and return to this place brought with it a sharper awareness of the labels this rural region could invite; of the way its people could be portrayed; of how easily they can be reduced to a one-dimensional stereotype that fosters little understanding.

And I am both reducer and reduced. I am a proud Devonian, rooted in soil thick with my ancestors, whilst also craving the culture and variety of elsewhere. My story of life in this place is complex. It’s a story that’s mine to tell, and not representative of anyone else from here – just as the people I’ve worked with in communities here and across sub-Saharan Africa taught me too: this person is not this place. This story is not this people.

Stories matter – stories told; stories hidden. They shape our identity, our opinions, our possibilities. John Steinbeck wrote that:

“A man who tells secrets or stories must think of who is hearing or reading, for a story has as many versions as it has readers. Everyone takes what he wants or can from it and thus changes it to his measure. Some pick out parts and reject the rest, some strain the story through their mesh of prejudice…”

Stories told reflect stories carried, like light refracted through a prism. A story’s colours tell us something about who tells the story and how they see the world. Which is one reason perhaps that JD Vance’s memoir Hillbilly Elegy: A Memoir of a Family and Culture in Crisis came under scrutiny, especially since he was named Donald Trump’s vice-presidential running mate in the forthcoming US election.

Hillbilly Elegy tells the story of Vance’s white working-class family, from his grandparents in the Appalachia region of Kentucky to his own coming of age in Middletown, Ohio. Vance raises questions about how local people, including his own family, are responsible for their own misfortunes, including poverty and addiction. His book came out in 2016, at just the right time to give many Americans an insight into why so many people like Vance’s relatives and past neighbours had voted for Donald Trump. It was painted as the voice of a forgotten community, and it became a bestseller, admired by some for its portrayal of Appalachian culture by someone from the inside. But reading people who know the places he talks of, it becomes clear that the book is “rife with stereotypes and classic Republican talking points peddled under the guise of lived experience,” as one commentator said.

Sarah Smarsh, author of books including Bone on Bone: Essays in America by a Daughter of the Working Class, said in a Guardian piece published in 2016,

“that the media industry ignored my home for so long and left a vacuum of understanding in which the first glimpse of an economically downtrodden white is presumed to represent the whole.”

A Bitter Southerner article responding to Hillbilly Elegy said that generalisation means that “…complexity gets simplified, the edges get rounded out[…]Appalachia has been written about and photographed in such a compelling (if fabricated) way that the descriptions of passersby took on more weight than the lived experiences of the people being described. What remains is a concept of a place that is both wildly romantic in its natural beauty and backward enough to justify the destruction of that very nature.”

We live in divided times, but often I find it hard to discern real division versus the media-created story of division. Theirs is a story that gets things wrong. Smarsh reflects how “countless images of working-class progressives…are rendered invisible by a ratings-fixated media that covers elections as horse races and seeks sensational b-roll. This media paradigm created the tale of a divided America…” This is why it matters that we hear stories that do not fit that paradigm. A many-voiced 2019 publication Appalachian Reckoning: A Region Responds to Hillbilly Elegy offered some of those stories in response to Vance’s painting of Appalachia.

Vance thought he could write the story of a 13-state region, but many Appalachians were unhappy about him becoming their spokesperson, especially when he seemed to blame the poor for their poverty. Appalachian Reckoning is a graceful counter to this: not silencing Vance’s own story but offering many more views and stories from Appalachia. Its co-editor Meredith McCarroll said she wanted to “complicate any singular view simply by including multiple ones. I wanted to create a chorus of voices, “each singing what belongs to him or her and to no one else,” to borrow from Walt Whitman’s view of place.” The publication offers cultural nuance, emotional connection, and a “context for some of the claims Vance makes in his book when it moves beyond memoir, and to pass the mic to a wider range of writers, poets, photographers, activists, and artists who make Appalachia a place far too complex to capture and far too dynamic to die.”

This approach feels important now, in the world as is it, with a media that often overlooks nuance, and with a culture that has become so visual that the way things are styled and framed and presented to us online can often be quite different to the reality. It is important to know the difference, and stories can help us discern that.

This symphony of existence can, if we give each voice its space, subvert paradigms of division and fear.

There are stories that are easy to peddle and easy to buy into. In charity work, I saw how the story of the benevolent professional outsider could shape things, leaving little room for local stories and experience. In politics I saw how the story of opposition got in the way of all the people getting on with the everyday work of restoring and caring for their communities across lines of difference. We can, unknowingly, make a place and a people shrink or even disappear with the stories we carry or amplify, or ignore.

Stories wielded unwisely can shrink faith as well as people and places. The Jesus who I did not grow up with but came to know slowly as an adult is a Jesus of nuance, compassion, and deep listening. He would not, I think, recognise the brand of Christianity that can be used to justify particular politics. That religion and politics have in places become so intertwined is perhaps a reflection of the reduction of the vastness of the Bible and the many diverse voices it contains into one story that serves a particular group of people. Jesus again and again subverted what empire and hierarchy and tradition expected of him. He invited people into his story over and over, curious about their own story but never using it as a reason to include or exclude.

When I think about who tells the story of a place – or of a people, a time, a faith – I see that really, there is never one story anyway. There is a chorus of voices, each a little different, each part of a vast harmony that – if we have the ears and heart to hear it – sings a song of challenge and joy, of despair and illumination. Former US president Woodrow Wilson said, “the ear of the leader must ring with the voices of the people”. Storytelling is not about giving people a voice – something I heard a lot in charity work. It is about listening to what they’re already singing. This symphony of existence can, if we give each voice its space, subvert paradigms of division and fear, of biased framing and selective storytelling. It can sing us back to ourselves, helping us see each other. And isn’t that what softens hearts, isn’t that why we tell stories? Author Kazuo said in his Nobel acceptance speech that “stories are about one person saying to another: This is the way it feels to me. Can you understand what I'm saying? Does it also feel this way to you?” Stories are not tools of manipulation or power, but pathways to encounter, to relationship, to understanding. They are, perhaps, the only way through divided times.