Introduction:

Choices at the end of life

Medical and technological advances have considerably increased life expectancy. This has also led to difficulties, including a deterioration in health and quality of life. While deteriorating health and quality of life particularly affect the ageing population, people at different stages of their lives may also be affected. As a result, some of these people may be considering end-of-life options. More and more jurisdictions around the world are authorising assisted dying, a type of end-of-life care. In Europe, this option, known by various names and implemented in different ways with specific safeguards, is available in Switzerland, the Netherlands, Belgium, Luxembourg, Austria, Spain and Portugal. In addition, discussions on legalising assisted dying are underway in many other jurisdictions, including France, Germany, Italy, Ireland and the UK. The issue of assisted dying raises important questions about our society's openness to talking about death and dying, and about how best to regulate this subject.

We propose to hold a two-day workshop in Brocher, which will bring together experts from the above jurisdictions to discuss recent developments and directions in law, policy and medical practice in their respective jurisdictions. The discussion will focus on ethical, legal and societal issues, as well as the impact of new technological developments, including the use of telemedicine in the process of assessing eligibility for assisted dying (implemented following the COVID-19 pandemic), the use of new end-of-life technologies such as the Sarco capsule, and the exploration of end-of-life choices in the metaverse.

When examining the data, regulations and experiences of different jurisdictions, it is important to bear in mind two important points. Firstly, there is no one-size-fits-all solution, which means that legal, cultural and social contexts differ and what may be acceptable and endorsed by the public, policy makers and other key stakeholders in one jurisdiction may not be well received or adapted in another. This is particularly true when developing regulations and procedures for groups considered to be particularly vulnerable, such as children, people with mental health problems, people who are no longer mentally competent, people with special needs and people who travel to access end-of-life services abroad. Secondly, there is a constant need to review existing legislation and scrutinise new legislation that is introduced, in order to strike the right balance between autonomy and safety, and to adapt legislation to changing needs in the light of technological advances. This is demonstrated by the fact that monitoring and evaluation of end-of-life practices in different jurisdictions lead to changes in legislation and changes in the way legislation is implemented in practice. This is not only the case in Europe. For example, Oregon amended its law in January 2023 to remove the residency requirement for medical aid in dying (HB 2279 amendment), and Canada, in response to a court challenge, amended its law in March 2021 to remove the requirement that a person's death must be reasonably foreseeable to qualify for medical aid in dying (Bill C-7: An Act to amend the Criminal Code (medical aid in dying)). These examples, among others, of the need for ongoing legislative review highlight the importance of academic exchanges on the subject, as well as the value of comparative research, which are at the heart of the workshop we are proposing.

In addition, it is essential to think outside the box when examining legislation and legal practice. Legislative frameworks often focus more on the assistance provided and the legal consequences of dying than on the dying process itself. The right to quality end-of-life care and a dignified death needs a deeper theoretical foundation, including consideration of concepts such as life cycles, changing relationships between the living and the dead, new ways of dealing with the body and death, and cultural attitudes to death and dying. We should explore the beliefs, values and ontologies that are closely linked to end-of-life legislation and practices. Assisted dying is not just a legal issue. It must be recognised that end-of-life processes involve a much wider range of disciplines. Moreover, public engagement in this debate is crucial. Society needs to consider how to encourage the participation of people who (in the future) may be considering end-of-life options in these fundamental societal debates and how to ensure that the process is democratised. For example, in France in 2023, a citizens' convention made up of randomly selected French citizens came out in favour of authorising medical aid in dying under strict conditions.

Our team includes junior and senior researchers from a variety of backgrounds and jurisdictions. The core team has already met for a two-day workshop at the University of Leuven in Belgium in June 2022. Our short-term aim is to use the workshop to share ideas on the latest developments in each jurisdiction and to explore future directions, taking into account advances in medicine and technology. In the medium term, we aim to produce a significant output which could be an edited volume or an article in an academic journal. Our long-term vision involves the creation of a European network of researchers working on assisted dying. This network will include a mix of early career and experienced researchers from a variety of disciplines and jurisdictions and will foster opportunities for student and academic exchanges and cross-border collaborations. The aim of our workshop and the proposed network is to better understand the various aspects of assisted dying, including patient wishes, practical challenges and normative possibilities, by bringing together perspectives from all relevant disciplines, such as medicine, care sciences, philosophy, bioethics, law, anthropology, sociology and political science, as well as exploring new techno-cultural aspects of dying. We also intend to invite representatives of the private organisations concerned, political players and the technology sector to the workshop.