Background, initiator and participants

The National Council of Ethics for the Life Sciences (CNECV) launched a national debate on end of life issues which included, in addition to euthanasia, several ethical questions related to end of life care.

The initiative started in Lisbon in May 2017, followed by a series of public debates. There were 14 debates, attended by large numbers of members of the public, that were held in 12 different cities all over the country.

Objective: To raise public awareness and encourage the promotion of free and informed debate among all citizens to allow a responsible participation in democratic decisions.

The question

Several questions were raised during the debate, mainly:

• The respect for individual autonomy,
• the limitations of autonomy when requesting euthanasia and assisted suicide,
• how to care at the end of life and the availability and adequacy of end of life care,
• arguments for and against the legalisation of euthanasia and assisted suicide.

Method

All the debates were open to citizens.

Experts were invited to present their views on the dilemmas corresponding to their professional roles (i.e. medical doctors, religion, philosophy, law) but also their personal points of view (e.g. as young people, patient representatives, opinion makers).

In the last conference (the international conference), two approaches were sought regarding the importance of the role of civil society and the deliberation process, and regarding the experts from different countries it was asked not to express their points of view but rather to provide information on the legal and factual situation in their own countries. The “main actors” were the citizens who attended all the conferences and were free to intervene, to ask questions and to exchange experiences.

Society had the chance to discuss relevant issues on the end of life (e.g. palliative care, informed consent) apart from the specific euthanasia issue.

The project ended in December 2017. In the beginning of 2018, the Parliament voted against the proposal to amend the law.

The debates were recorded and largely disseminated by the media. A media partner covered the debates on a regular basis (interviews, photos, announcements and post-debate reporting).

A book called “Deciding on the end of life – cycle of debates” was published with a collection of excerpts from the conferences as well as interventions from the public (with an overview of all the views expressed), which included the texts of the conferences presented at the international seminar. It also included a glossary, a conclusion with the main questions and arguments presented in the debate as well as a short study on comparative legislation.

Notable features and lessons learned

The work was applauded by all the sectors of society that recognized the importance of helping citizens to build their own opinions though open and pluralistic debate.

The involvement of all the main actors in discussions helped citizens understand their views, hopes and fears.

A publication containing the highlights of the debates, the main conclusions, a glossary and a summary of a comparative legal framework was launched on 1 Feb 2019 in a ceremony attended by the President of the Republic. The documentation remains relevant despite the Parliament’s decision against the proposals. It manifests the conclusions of the debates for future reference.

Impact

The debates had considerable impact in local communities as evaluated by the number of media news and opinion articles issued via national and regional broadcasts and press. They acknowledged the format for the audit process and the free and open discussion on the topic, which had never been done before.

Interestingly, several institutions challenged the CNECV to extend the period of public discussions offering to organise initiatives in places that were not included in the original roadmap of debates.

A special volume of the summary of debates was edited containing the most relevant positions of the discussants (speakers and general audience), together with the main consensus conclusions and the key issues generating controversial and opposed opinions.

This volume was disseminated throughout a wide network of bookshops all over the country and sold out in a short period of time. The President of the Republic was present at the launching event having stressed the relevance of the initiative, which made greater the media impact of the book’s content.