Symposium on decision making process regarding medical treatment in end of life situations 30 November – 1 December 2010 Palais de l’Europe, Strasbourg, France Conference organised by the Steering Committee on Bioethics (CDBI) of the Council of Europe The speakers: abstracts, full texts and biographical notes TABLE OF CONTENT Mr Jean Leonetti (France) - Introductory message ............................................................ 3 Prof. Eugenijus Gefenas (Lithuania) – Medical End-of-Life Decisions: Conceptual Clarifications and Ethical Implications .............................................................................. 7 Prof. Stein Kaasa (Norway) - Shared historical evolution and international comparison ... 13 Mrs Isabelle Erny (France) – What is at Stake in the Symposium in Relation to the Principles of the Convention on Human Rights and Biomedicine ................................... 17 Prof. Andreas Valentin (Austria) - Nature of possible decisions in end of life situations in intensive care ........................................................................................................................ 26 Prof. Inez de Beaufort (The Netherlands) – Nature of Possible Decisions in End-of-Life Situations .......................................................................................................................... 32 Prof. Dr. Dr. Jochen Vollmann (Germany) – The Person, Even Though Sick, is in Full Capacity to Participate in the Decision Process ............................................................... 40 Prof. Thérèse St Laurent Gagnon (Canada) – End-of-Life Decisions in the Case of Children ............................................................................................................................ 46 Prof. Ergun Özsunay (Turkey) – Participation in the Decision by the Person who is in a Situation that Affects or Limits His/Her Capacity to Express Will ................................. 49 Dr. Irma Pahlman (Finland) – Previously Expressed Wishes: Advanced Directives/Living Will/Continuing Power of Attorney .................................................... 61 Prof. Pablo Simón Lorda (Spain) - Advance Directives in Europe and Spain: Situation and Challenges ............................................................................................................................ 66 Alzheimer Europe (Patient organisation) – The Use of Advance Directives by People with Dementia – the Views of Alzheimer Europe ........................................................... 73 Prof. Emmanuel Agius (Malta) – Safeguarding the Unconscious Patients’ Overall Benefit: Towards a “Consensus Building’ Approach” .................................................... 77 Prof. Jane Seymour (United Kingdom) – The Person Cannot Take Part in the Decision 86 Prof. Anatoly Zilber (Russian Federation) – Making Decision and Special Care in End- of-Life Patients ................................................................................................................. 92 Mrs Andrée Endinger (France) – The Person Cannot Participate in the Decision Process .......................................................................................................................................... 94 European Multiple Sclerosis Platform (patient organisation) – A Time to Reflect and a Time to Share… the Perspective of Patients .................................................................... 99 General rapporteur: Dr Regis Aubry (France) ............................................................... 105 Dr Beatrice Gabriela Ioan (Romania) ............................................................................ 107 Dr Takis Vidalis (Greece) .............................................................................................. 115 2 Mr Jean Leonetti (France) - Introductory message Mayor of Antibes Juan-les-Pins Deputy of Maritimes Alps President of the Town Community of Sophia-Antipolis First Vice-President of the UMP Group UMP at the National Assembly Text read by the Coordinator Ladies and gentlemen, I regret that I am unable to personally participate in this Symposium. I would nevertheless like to share with you some thoughts concerning the French experience and in particular the process which brought about the adoption of the Act. I would just like to say how much I welcome the holding of this symposium. The subject of this meeting covers a wide range of ethical, medical, legal and social issues, which is why the multidisciplinary approach chosen, associating physicians specialising in palliative care, law- yers and ethicists, was highly appropriate. The European dimension of this symposium is also a first, and should enable us to compare experi- ences and arrive at conclusions on medical practices which will ultimately be fairly similar. The debate you will be holding will therefore be very useful for three reasons: - it can help clarify such concepts as treatment withdrawal, terminal sedation, dual effect and withdrawal of artificial feeding; - it can clarify the places of the patient, the physician, and family and relatives in decisions to withhold or withdraw treatment, since there is often major confusion about their respec- tive roles; - lastly, society needs precise rules on responsibilities for decisions to withdraw treatment, in order to distinguish between treatment withdrawal and what would provide an opening to a right to die, in the form either of a lethal injection administered by the physician or of assisted suicide. Our Spanish friends are well aware of this, since they seem to be head- ing towards legislation on treatment withdrawal, possibly to be enacted in March 2011. However, the debate on euthanasia and assisted suicide is completely different, and is not the subject of this meeting At this stage, as an introduction to our day-and-a-half of work, I think I can only put a number of questions which will hopefully fuel your discussions. I would like to mention the matter of the procedure for withholding and withdrawing treatment from three different angles, namely those of the patient, family and relatives and the physician. Where the patient is concerned, you will have to differentiate between patients who are conscious and unconscious in end-of-life situations. The latter case would require particular attention. You will have to assess the criteria for the patients’ autonomy, consider the requisite interpretation of their ad- vance directives, their relationship with their condition, and the priority to be given to these directives in terms of the role played in this procedure by a surrogate appointed by the patient. Should we simp- ly use general advance directives or, on the contrary, should we demand specific directives, as hap- pens in Germany and the United Kingdom? Should they have binding force? How are we to over- come any contraction between these directives and the therapeutic option considered most appropri- 3 ate by the physician? Should there be an order of priority between the advance directive and the sur- rogate? Can we be sure that the opinion of the surrogate fully reflects that of the patient? Should the surrogate be different from the person to be notified? The place of family and relatives is essential, but the latter are not always in full agreement. It can happen, as in the Terri Schiavo case in the United States, that not all the members of the same family agree on the advisability of withdrawing treatment. The physician must get to know the family, dia- logue with them and establish relations based on trust. The choice of words and the approach to rela- tives, especially where the patient is unable to take decisions, are vitally important. This whole area requires time, and we should not forget that the palliative approach also involves the patients’ rela- tives. The place of the physician. The physician must analyse the therapeutic alternatives, comparing them with the choices of the patients and their families. He or she will consider the traditional ethical principles of beneficence and non maleficence. Which questions are most relevant to physician: should we prioritise survival with further chemotherapy, for example, or is it better to move on to pallia- tive treatment? Is there any risk in treating the patient in an unreasonably obstinate manner? This is not always easy to assess. How are we to evaluate, for instance, unreasonable obstinacy in intensive care departments looking after patients with acute cerebral lesions? How is a physician to manage the ambivalence of the patient and his family, who waver between the survival instinct, a refusal to give up and treatment withdrawal? How are we to achieve a clinical evaluation of the patient and in- corporate a pluridisciplinary dimension into this process? How are we to announce a fatal prognosis to a patient? What responsibility must the physician take for deciding to abstain from or withdraw therapy? Should the final decision go the physician, the surrogate or the close relatives when the patient is unconscious and in an end-of-life situation? We in France considered these questions at great length when preparing the 2005 legislation on the rights of patients in end-of-life situations and once again in 2008, when the Prime Minister and the President of the National Assembly assigned me the task of evaluating this legislation. I would just like to take this opportunity to describe the working method we chose and the content of this legislation. I am not trying to “sell” this