On the 22nd of July the Dutch MEP Sophie In't'veld (D66 - Renew Europe) sent a letter addressing the European Commissioner for Health Kyriakides on issues regarding end of life treatments. The letter was signed also by Marco Cappato, President of Eumans and Treasurer of Associazione Luca Coscioni in Italy.
For the past 15 years Marco Cappato led the initiatives for the legalization of euthanasia in Italy, through the activation of participatory democracy instruments, strategic litigation and civil disobedience. In the summer of 2021 a campaign to collect 500.000 signatures in Italy for holding a referendum on end of life decsions was launched by Marco Cappato and multiple civil society organisations. (read the full story of the referendum in Italy on Politico: "Right to Die Activists in Italy hope for a breaktrhough in Italy")
Below you can find the full text of the letter. And you can support these proposals for the Conference on the Future of Europe at this link.
LETTER TO THE EUROPEAN COMMISSION SENT ON 22nd OF JULY 2021
Subject: Raising crucial issues regarding end of life treatments
Dear President Von der Leyen,
Dear Commissioner Kyriakides,
We are addressing you 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, no matter what their personal beliefs and choices are.
Despite acknowledging this topic as a matter of national competence, as confirmed by the European Court of Human Rights in 2012 in the Case Koch v. Germany (no. 497/09), we believe that the right to self-determination regarding end-of-life treatments must be respected as a corollary of the right to private life as enshrined in Art. 8 of the European Convention of Human Rights and confirmed by the European Court of Human Rights in the Case Haas v. Switzerland in 2011 (no. 31322/07). Therefore, we are of the opinion that the European Commission should, within its competencies, play a leading role in providing the widest support to all voices and choices made in relation to end of life and contribute to raise awareness and create scientific evidence on various topics such as palliative care, assisted dying and treatments’ interruption, notably in the context of the European Health Union.
In light of these reflections, we would like to raise the following issues:
1) Collecting qualitative data to inform policy-makers
The topic of end-of-life treatments, although being a reality, is not well-researched. We strongly believe that, in order to design well-suited policies, qualitative and comprehensive data are needed. Relevant data would allow policy-makers to better identify possible shortcomings, and would constitute grounds for recommendations to Member States. Therefore, as an initial point of a much needed debate, we encourage the Commission to start data collection at EU level.
2) EU Funding to cover all voices and choices of Europeans
The EU offers a diverse range of funding opportunities for projects that can help further its policies and objectives. Acknowledging the lack of information and research and, consequently, debate at the EU level regarding this topic, we would like to inquire whether EU funds have ever been granted for projects dealing at least with some aspects of end-of-life treatments and, if so, the exact amount destined for this. Have EU funds ever been destined to religious groups for activities regarding end of life? Given the sensitivity of the topic we are also interested to know whether ethics committees for research have ever raised ethical concerns regarding applications of EU funds in this field.
3) Starting a dialogue with civil society
The topic of end-of-life treatments is still rather taboo, for this reason, we urge the Commission to start an open and inclusive dialogue with civil society, experts, NPOs and associations of medical professionals to collect first-hand testimonies on the topic of end of life treatments. We would like to ask the Commission to set a shared and transparent timeline in order to open the dialogue in a sensitive and respectful manner.
4) The portability of the living will
As enshrined in Art. 9 of the Convention for the Protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine (also known as the Oviedo Convention, 1997), each person shall have the right to choose in advance whether and to which treatments be subjected in case of inability to provide informed consent in the future. The institute of living will is therefore directly applicable in all signatory states. Some Member States have not signed the Oviedo Convention, but have introduced such institute in their national legislation on their own. However, patient's wishes do not cease to exist when he or she crosses the border, nor does the principle of self-determination.
Therefore, we consider it of utmost importance that EU citizens have legal certainty that their wishes will be taken into consideration and their right to self- determination will be respected regardless of where, in EU, they are at that moment and irrespective of where the living will has been expressed. Therefore, we would like to inquire whether the Commission intends to undertake steps in order to ensure that this right is protected and applied across borders and what the Commission is determined to do concretely. We believe that guaranteeing the full portability of the living will would be possible to achieve through interoperability of living will databases across Member States, in full respect of GDPR. However, in order to reach this goal, firstly all Member States would have to introduce or elaborate the institute of living will in their national legislations. Does the Commission intend to encourage Member States to address the shortcoming in this regard? Moreover, significant differences among Member States regarding different standards for this institute would create obstacles for possible interoperability. What is the Commission's view on this?
5) The freedom of circulation of patients within the EU for end of life treatments
In effective application of the right to freedom of movement of persons in the European Union, as a corollary of European citizenship, we call the European Union to assure a free circulation of patients within the EU for access to end-of-life treatments. Yet in 2021, in the European Union, national legal frameworks in this regard are too heterogeneous and risk to be discriminatory in relation to the cost of access to these practices. Rules to access end-to-life treatments are often strictly applied to residents and if not, further underlying rules, such as having a close, long-term relationship with the doctor, result in the overall costs - not supported by the public health system - being prohibitive and discriminatory.
Therefore, we would like to know whether the Commission has considered recommending Member States to remove unnecessary administrative burden for nationals of other Member States to access to end-of-life treatments.
We look forward to your feedback and to the opportunity to discuss further these questions with you.
Sophie IN ‘T VELD, Member of European Parliament (RENEW EUROPE)
Lucia ĎURIŠ NICHOLSONOVÁ , Member of European Parliament (RENEW EUROPE)
Charles GOERENS, Member of European Parliament (RENEW EUROPE)
Valerie HAYER, Member of European Parliament (RENEW EUROPE)
Hilde VAUTMANS, Member of European Parliament (RENEW EUROPE)
Marco ZULLO, Member of European Parliament (RENEW EUROPE)
Marco CAPPATO, Former Member of European Parliament, Associazione “Luca Coscioni”
REPLY BY THE EUROPEAN COMMISSION SENT ON 12th OCTOBER 2021
Dear Honourable Member,
I would like to thank you, and your cosignatories, for your letter addressed to Commissioner Kyriakides and myself, in which you draw the Commission ’s attention to the crucial matter of end-of-life treatments in the EU and call on the Commission to step up its action to guarantee the right to human dignity and self-determination of European citizens.
In your letter, you acknowledge that this matter falls within the sole competence of the Member States, but ask the Commission to collect data, provide support, including financial support, engage in dialogue with civil society and raise awareness on several topics related to end-of-life treatment in the context of the European Heath Union. Finally, you enquire about the Commission ’s intention to ensure the rights of cross-border patients in access to end-of-life treatments, and regarding the cross-border portability of the living will.
I would like to thank you for bringing this important matter to the attention of the Commission and to inform you that the Commission is active in several areas of health policy relevant for the issues you raise.
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 development of medicines and treatments through the full patient journey.
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.
Research addressed the empowerment of patients and self-management in cancer diseases, the use of palliative sedation, and patient-centred survivorship care to improve care quality, effectiveness, cost-effectiveness and accessibility for survivors and caregivers. This support is expected to be continued under the new programme, Horizon Europe. Currently, a research and innovation topic calls for proposals aiming at improved supportive, palliative, survivorship and end-of-life care of cancer patients.
Regarding dialogue with civil society on health matters, the EU Health Policy Platform has proven to be an effective and flexible means for stakeholder debate on a broad variety of topics. At the request of its users, the Health Policy Platform can open networks to facilitate dialogue on any topic supported by the health community.
The Directive on the application of patients ’ rights in cross-border healthcare 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.
The Directive obliges the competent bodies to provide patients with transparent information on the treatments to which they are entitled.
The National Contact Points on cross-border healthcare provide advice to citizens on their rights to treatments abroad. 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). The Mission on Cancer will address the whole cancer control continuum, i.e. from prevention of risk factors to survivorship support and end-of-life care. In regard to survivorship and end-of-life care, the Mission aims to contribute to a better understanding of(late) treatment side effects, symptoms, comorbidities, functional disability and psychosocial needs, to relieve symptoms, improve palliative care and survivorship support. Fundamental for all Mission- related actions is that they will be designed, implemented and evaluated together with those for whom they are of concern.
Please be assured that the Commission is firmly committed to ensuring the protection of fundamental rights, within the limits of its competence as set out in the Treaties, and to promoting a high level of human health protection in all its policies.
Ursula Von Der Leyen,
President of the European Commission
WEBINAR REPLAY: "THE EU CITIZENS' RIGHT TO ACCESS TO END OF LIFE TREATMENTS
Sophie In't'veld - Dutch MEP - sent a video to the EUMANS Members Assembly sharing the proposals she is carrying on within the European Union to raise crucial issues regarding end of life treatments. In't'veld sent a letter to the President of the European Commission Ursula Von der Leyen and Commissioner Kyriakides, and involved Marco Cappato, President of EUMANS and Treasurer of Associazione Luca Coscioni.