A proposal for joint popular initiatives on the end of life treatments reforms in the European Union. First step: time for the European Living Will.
This document is an overview of the initiative promoted by EUMANS for a European Living Will. The initiative is organised in collaboration with Associazione Luca Coscioni.
PROPOSALS FOR A EUROPEAN LIVING WILL
having regard to art. 2, 4, 45, 168 TFEU, of art. 9 Oviedo Convention, of art. 3, 8 of European Convention of Human Rights, of art. 1, 2, 3, 4, 7, 35, 45 of the European Charter of Fundamental Rights,
having regard to the Council of Europe Recommendation CM/Rec(2009)11 on principles concerning continuing powers of attorney and advance directives for incapacity
having regard to the Directive 2011/24/EU on the application of patients’ rights in cross-border healthcare,
having regard to European Court of Human Rights Case Lambert and others v. France (no. 46043/14) stating that 1) in examining a possible violation of Article 2 given by the withdrawal of life-sustaining treatments, a reference to Article 8 of the Convention, to the right to respect for private life and to the notion of personal autonomy which it encompasses must be made (par. 142) and stating that 2) among Council of Europe Member States “there is (...)consensus as to the paramount importance of the patient’s wishes in the decision-making process, however, those wishes are expressed (par.147)”,
Having regard to the Manifesto on the discrimination on the fundamental right to a voluntary death between EU States of 2017 through which 41 MEPs requests the European Parliament 1) to undertake research on end-of-life decisions, especially on citizens forced to travel abroad to die and on clandestine euthanasia practices; 2) to urge all Member States to regulate euthanasia and medically assisted suicide,
Having regard to the Recommendation nr 24 adopted on 28 February 2022 within the citizens’ panels of the Conference on the Future of Europe stating that “We recommend the EU should support palliative care and assisted death [euthanasia] following a concrete set of rules and regulations. We recommend this because it would reduce the pain of the patients and families and it would ensure a decent end of life. “
Acknowledging that in 2012, ADMD Belgium and RtDE called the Benelux parliament to investigate the possibilities of mutual recognition of living will and advanced healthcare directives and that in 2014 the Benelux Parliament rejected the possibility to pursue mutual recognition of living wills given differences in legal systems.
believe that the European Commission should play a role in ensuring the right to self-determination and dignity to its citizens.
Therefore the above-mentioned organisations jointly propose the development of the following measures.
We believe that the freedom of movement of EU citizens (art. 45 TFEU) may imply the possibility for all citizens to exercise their rights wherever they are in the EU. The portability of civil rights, including those related to self-determination, is, indeed, to be protected and respected as a human right.
The proposal is aimed at facilitating the access to and the legal recognition and binding nature of the content of the living will by medical staff, no matter in which Member State it has been written.
In order to achieve the goal of an European “citizenship of rights” also when referred to end-of-life decisions, we urge the Commission to:
- Issuing guidelines to the Member States aimed at finding common definitions
Not all Member States have introduced rules for advance healthcare directives in their legislations. At the moment, only 15 MSs have developed specific rules on advance healthcare directives and within each Member State, different templates exist. The heterogeneity of content increase confusion and prevent medical staff from fully implementing patients’ end-of-life provisions.
Elaborating common definitions and seeking common minimum standards could, therefore, be an initial needed step.
- Requirements and conditions that would legitimise the refuse of medical treatments;
- Parameters to unambiguously identify the fiduciary and his\her powers;
- Requirements to check the patients’ capacity of judgment at the moment when the living will had been set in order to avoid that doctors may opt out refusing to recognize the patient’s capacity of judgement and therefore the binding nature of expressed wishes.
Common definitions could avoid misunderstandings and disputes across the European Union and ensure that every EU citizen\patient may be sure that his\her wishes may be understood and respected in the same way, wheresoever in the European Union.
- Issuing a Recommendation to Member States to guide medical staff
We call for the European Commission to issue a Recommendation to the Member States in terms of guidelines regarding how medical staff should act in case they meet a patient unable to express his\her wills during their professional activity.
Namely, the Commission should promote protocols to clarify:
- the procedures to proactively access patients’ living wills,
- the binding obligation for medical staff to seek and consult the fiduciary,
- the consequences for medical staff in case of non-compliance with patients’ living wills.
- Introducing a European Living Will Pass
We advocate for the introduction of a European Living Will Pass. Learning from Covid pandemic which has accelerated the digital transformation, the proposal consists of the development of a technology enabling the reading of the living will’s content. This would facilitate the prompt exchange of information regarding end of life provisions among the Member States which have already introduced the living will in their legislations.
Having not all Member States introduced rules for advance healthcare directives in their legislations, our proposal only regards the exchange of information among MSs where advance directives are possible. Taking into consideration the current differences in the content of different living wills, doctors would be only bound by the provisions of the living will which are also binding in their MSs.
By the European Living Will, should the EU citizen be unable to make or communicate his\her own decisions regarding e.g. whether or not refusing medical treatments in a different MSs, whether or not the patient wish to be subject to euthanasia, the doctor of another Member State can easily verify the existence of a living will (and of a trustee) and promptly act in accordance to it.
The mutual recognition of living wills and the interconnections of national registers would bring certain advantages in the context of the European Health Union by avoiding bureaucracy delays due to administrative or judicial procedures and litigation.
- Creating a European (Health) Database
The exchange of information provided with the proposed European Living Will Pass would be only an initial step in a desirable broader perspective which would bring, in a long term, to the development of interoperability protocols and interconnections of National and European Databases of Living Wills in the framework of a European Health Union.
Furthermore, we advocate for the development of a common European Health Database that includes not only EU citizens’ living wills but also all clinical information (medical treatments, previous medical treatments, allergies). Likewise, the mechanism of a European Living Will Pass, the mechanism should work on a voluntary basis therefore the patient could share information on this platform upon his\her previous consent.
- BUILDING AN EVIDENCE BASE: Finding cases of non-compliance with patients’ living wills.
- BUILDING A COALITION: Contacting GDPR experts, academia (ULB: Charbans), jurists, MEPs, Right to Die organisations
- SHAPING THE MISSION: Making research on how many Member States provide the possibility to insert the interruption of medical treatments and vital supports (oxygen, hydration and alimentation) in their living wills. This would help to find common standards in the perspective of creating a European Living Will.
- Compliance with patients living wills’ content: ensuring the presence of a proportionate number of medical staff who are not conscientious objectors in medical facilities.
- GDPR compliance: building a structure where the information may be shared on a voluntary basis.
- The problem of translation(s):
The citizen writes his\her living will and submits it to the National Register also providing the consent to upload his\her living will on a European Database where the living will will be translated in all the official languages. The information shared within the European Database will not only be limited to its existence but also to its content. Creating a European Database, firstly filled with living wills sent by national authorities would let, in the future, private citizens from a Member State whose legal system does not include the possibility to write a living will to have his\her wills uploaded in the European Living Will Database, accessible and taken into account in another Member State where the living will is, instead, provided. E.g. A citizen writes his living wills in a Member State where it does not have any legal value and it’s not provided by legal system. (S)he goes to Italy where unfortunately something happened and s\he becomes unable to say whether and to what medical treatments be subjected. His\Her living will can be found in the European Living Will Database and taken into account in Italy where the living will has a binding legal value. (see other schemes where the EU official translation system has been used: EU certificate of succession).
- Possible venues to develop:
- A new tool from the scratch called “European Living Will”:
1.a) Development of QR code technology enabling the reading of the living will’s content from any device. We envisage that a citizen can express his\her advance directives and provide his\her consent in accordance with General Data Protection Regulation 2016/679 to have it published in a national\European database on a voluntary basis scheme. Each living will will be then associated with a QR code.
- European Certificate of Succession: established by Regulation (EU) No 650/2012 to settle the cross-border succession in a certain, speedy and less costly manner, it lets, by showing a uniform certificate, heirs, legatees, executors of the will or administrators of the estate demonstrate their status.
- European Disability Card: To help people with disabilities travel more easily between EU countries, the EU is developing a voluntary system of mutual recognition of disability status and some associated benefits based on an EU disability card. For example, thanks to the QR Code printed on the back, allows citizens to always certify their up-to-date disability status, automatically giving them access to certain services and conventions in Italy and Europe (at the moment the partner MSs are Belgium, Cyprus, Estonia, Finland, Italy, Malta, Romania, Slovenia.)
- Including in existing models:
2.a) eu-ID: in the process of revision of Eidas protocols regulating the digital identity at the EU level, the EU is developing the "digital wallet" o "eu-ID" which should become the standard container for citizens’ credentials. Issuing credentials would be MSs’ responsability. The model would be based on the concept of self-sovereignity identity aimed at allowing citizens the control of their credentials and of whom credentials could be shared with so that avoiding to spread and leave in the cyberspace too many sensitive information.
What to do: contact some NGOs, EU Commission, MEPs following this file.
2.b) Including the end-of-life provisions in the European Health Insurance Card
2.c) Given that EU rules on social security coordination call on the Member States to use digital technologies for the exchange, access and processing of the data required for the application of these rules as well as to offer user-friendly services to citizens enjoying their right to free movement across Europe, we may take advantage of the previously developed pilot project launched to explore the feasibility of a European Social Security Pass to simplify citizens’ interactions with social security institutions, healthcare providers and labour inspectorates.
2.d) Including the national living wills in the list of public documents mentioned by the Regulation (EU) 2016/1191 on promoting the free movement of citizens by simplifying the requirements for presenting certain public documents in the European Union (amending Regulation (EU) No 1024/2012). The Regulation ensures the free circulation and mutual recognition of public documents within the Union.
RESOURCES ABOUT THE INITIATIVE ON THE EUROPEAN LIVING WILL AND END OF LIFE DECISIONS
- 12 October 2021 - Webinar organised by MEP Sophie In't'veld "The EU Citizens Right to Access to End of Life Treatments"
- 13 January 2022 - Online EUMANS Meeting with activists and organisations from the European Union on the proposal of the European Living Will
- 12 March 2022 - Session: "European Living Will: An initiative for the future of individual freedoms in the EU" during EUMANS in Warsaw - The Open Congress of Citizens for Sustainable Peace, Freedom and Democracy
BACKGROUND ON ASSOCIAZIONE LUCA COSCIONI’S ACTIVITIES
Founded in 2002, Associazione Luca Coscioni is an Italian based no-profit organisation aimed to promote civil liberties and human rights, in particular science, self-managed personal assistance, assisted reproductive technology, removal of architectural barriers, end-of-life choices, legalisation of euthanasia, access to medical cannabinoids and worldwide monitoring of laws and policies on science and self-determination. On a European and global scale Associazione Luca Coscioni operates with its partner organisations, Science for Democracy and the pan-European movement of popular initiative EUMANS.
Since 2006, Associazione Luca Coscioni has been at the forefront for the right to choice concerning end of life decisions in Italy. Through strategic litigation, citizens’ initiatives and the civil disobedience of Marco Cappato (Treasurer of Associazione Luca Coscioni and President of EUMANS) and Mina Welby (Co-President of Associazione Luca Coscioni), we are committed to ensure citizens to “be free until the end”.
In 2021, Associazione Luca Coscioni led the campaign for the collection of signatures aimed to call for a referendum to legalise euthanasia in Italy and engaged EU institutions to boost the debate and raise awareness at EU level.
Boosted by evidence of the failure of national approaches in providing a comprehensive response to health issues during Covid pandemic and consequently by the need to build a strong European Health Union, Associazione Luca Coscioni believes it’s time to start a new phase of reforms where EU citizens’ end of life decisions are at the core of EU debate.
Today, we call on experts, academia, NGOs, associations, MEPs, political parties, and EU citizens to engage in a fruitful debate aimed to create the conditions for guaranteeing dignity for all EU citizens. To achieve this goal, we believe that a first step may be represented by the introduction of a European Living Will Pass, an instrument that would facilitate the legal recognition and binding nature of the living will in the EU (see paragraph below “A European Living Will Pass” for more details).
An occasion to launch an awareness campaign at EU level is the EUMANS’ Congress “EUMANS IN WARSAW - The Open Congress of Citizens for Freedom, Democracy and Sustainability”' scheduled to be held in Warsaw on the 11th and 12th March 2022. Associazione Luca Coscioni will participate in the Congress curating the session related to “End of Life Treatments' '. It will be a precious occasion to cooperate to define common goals and strategies for the activation of participatory democracy instruments enabling a response at EU level on end of life choices.
- THE CAMPAIGN FOR A REFERENDUM FOR THE LEGALISATION OF EUTHANASIA IN ITALY (AND THE CONTRIBUTION OF ITALIANS ABROAD).
In April 2021, Associazione Luca Coscioni launched a campaign for the collection of 500.000 certified signatures aimed to call for a referendum to partially abrogate art. 579 of criminal code (“Murder of the consenting party”) which punishes anyone who causes the death of a man, with his consent, with imprisonment from six to fifteen years.
Thanks to the outstanding participation of civil society, 1.239.423 certified signatures were collected in the short period of 1 July - 30 September 2021.
Howbeit, the astounding result did not stop us from keeping the debate alive.
Unfortunately, on 15 February 2022, the Italian Constitutional Court has evaluated the referendum question inadmissible denying citizens their right to vote on this sensitive issue.
Far from stopping us, the ruling has, in fact, marked the beginning of a new chapter of initiatives, including civil disobedience, strategic litigation and advocacy, aimed at ensuring dignity and freedom to all EU citizens till the end of their lives.
Why do we need the referendum?
- Institutions are silent.
- In 1984, 37 years ago, Loris Fortuna, Socialist Party parliamentarian, prepared the first draft of a law on end of life, which has never been discussed as well as other drafts submitted afterwards.
- In 2013, a bill of popular initiative for the legalization of euthanasia (67 thousand signatures) was deposited at the Italian Chamber of Deputies. The Italian Parliament has been silent for years and has never tabled a discussion.
- In 2018, the Constitutional Court acknowledged the lack of adequate protection for certain situations by the Italian end-of-life regulatory framework and gave the Parliament one year to intervene with appropriate discipline. Nevertheless, the Parliament has never intervened. Its silence brought the Constitutional Court to declare the partial unconstitutionality of Article 580 of the Criminal Code in the ruling 249\2019 Cappato\Dj Fabo.
- Possible Discriminations.
In Italian current legislation,
> active euthanasia is prohibited by both in the direct version (art. 579 cp murder of the consenting party) and in the indirect version (art. 580 c.p. incitement and suicide aid), without prejudice to the discriminatory requirements introduced by the Constitutional Court ruling 242\2019 (Cappato\Dj Fabo)
> passive euthanasia is considered criminally licit especially when the interruption of treatment has the aim of avoiding the c.d. "therapeutic obstinacy” and has been positivized by law 219/2017 (on the living will).
Possible discriminations arise because:
> There are ambiguous cases that often do not allow easy to distinguish whether it is euthanasia by action or omission.
> There are cases in which the simple interruption of treatments may not lead serious and suffering patients to death.
> The Constitutional Court Ruling 242/2019 (Cappato/Dj Fabo) allows the person to procure assisted death only autonomously, but there are cases in which this person cannot physically take the drug, due to totally incapacitating illness.
- SEEDS FOR AN EU LEVEL END OF LIFE CAMPAIGN
- What we did
On 22 July 2021, together with some MEPs from Renew Europe political group, Associazione Luca Coscioni has addressed a letter to the President of the European Commission Ursula Von Der Leyen and to the Commissioner for Health and Food Safety Stella Kyriakides aimed to raise attention over the state of play of end-of-life treatments across the European Union and to call for your action to guarantee dignity and the right to self-determination for all European citizens.
Namely, we focused on 5 issues:
- The need to collect more qualitative data in order to inform and influence policy-makers
- EU funding to cover all Europeans’ voices and choices
- Enhancing dialogue with civil society
- The cross-border portability of the living will
- The free circulation of patients within the EU for end of life treatments
The content of the letter has been translated into a proposal for the Conference on the Future of Europe.
On 11 October 2021, the European Commission replied as follows:
- Regarding data availability, the Commission is working on a European Health Data
Space (EHDS), making it one of the building blocks of a stronger Health Union, for a trustworthy health data ecosystem. This will enable better measurement of health
outcomes, empower citizens and create capabilities for the reuse of data for research and development and will enable over time the exchange of data across the full continuum of care from the development of medicines and treatments through the full patient journey.
- Regarding the EU funding, the Commission invested over EUR 129.9 million to support research and innovation in the area of palliative care, end-of-life care, and empowerment of cancer patients and survivors under the former framework programme for research and innovation, Horizon 2020. This support is expected to be continued under the new programme, Horizon Europe. Moreover, end-of-life care is also an issue that will be addressed in the context of Europe’s Beating Cancer Plan and the Mission on Cancer under the Horizon Europe Framework Programme for Research and Innovation (2021-2027).
- Regarding dialogue with civil society on health matters, the Commission has launched the EU Health Policy Platform. At the request of its users, the Health Policy Platform can open networks to facilitate dialogue on any topic supported by the health community.
- Regarding cross-border application of patients’ rights, the Commission mentioned the Directive on the application of patients ’ rights in cross-border healthcare that gives EU citizens the right to seek healthcare in another Member State and to be (partially) reimbursed for the costs in accordance with the conditions of their health insurance. The definition of the healthcare benefits, including end-of-life treatment, is a matter for the national competent body. The content of the ‘baskets of benefits’ varies widely between countries.
On 12 October 2021, Associazione Luca Coscioni participated in the webinar organised by MEP Sophie in ‘t Veld “EU Citizens’ right to access to end of life treatments”.
On 13 January 2022, EUMANS, Associazione Luca Coscioni and Science for Democracy held a meeting with European Right to Die organisations (NVVE Netherlands, Dignitas Switzerland, RtDE, World Federation of Right to Die Societies, ADMD Belgium, ADMD Spain, ADMD Luxembourg) and activists in order to build a coalition and debate on the possible legal venues and margin of intervention to shape the content of the European Living Will
- What the European Parliament is doing:
Upon the initiative of MEP Sophie in ‘t Veld, the Renew Europe political group within the Civil Liberties, Justice and Home Affairs Committee of the EP asked for a study on the “Right to Die in Dignity across Europe”. The proposal was adopted and the study will probably be published in 2022.