Presented by Dr. Thiel at Yale Bioethics

1. Nutrition and Hydration in End-of-Life Decisions Pr Marie-Jo Thiel - University of Strasbourg (CEERE www.ethique-alsace.unistra.fr)

2. Nutrition and Hydration in End-of-Life Decisions The Leonetti Law and the French Legal Framework in End-of-life Decisions On the Ethical Level The Influence of the Surrounding Medical Discourse

3. The Leonetti Law and the French Legal Framework in End-of-life Decisions -1-

4. Leonetti Law : 5 points The right for care and treatment: "Every person in view of his state of health and the emergency of medical interventions that are required, has the right to receive the most appropriate care and to receive the treatment whose effectiveness is recognized and that ensures optimum safety in the light of evidence-based medical knowledge."(Article L1110-5)

5. Leonetti Law : 5 points 2. The Duty not to engage in Futile Treatment: “These acts should not be pursued with unreasonable obstinacy. When they appear unnecessary, disproportionate or having only the effect of maintaining life artificially, they may be withheld or withdrawn. In this case, the physician will safeguard the dignity of the dying patient and ensure the quality of life by providing care under Article L1110-10.” (Article L1110-5)

6. Leonetti Law : 5 points 3) The Right to effective pain medication even if it has the side effect of shortening life "Everyone has the right to receive effective pain medication. […] If the physician finds out that he can relieve pain, in the advanced or terminal phase of a serious and incurable disease, whatever the cause of the disease, only by applying a treatment that can have the side effect of shortening life, he must inform the patient”, the proxy decision maker, the family or, failing that, one of the relatives. (Article L1110-5)

7. Leonetti Law : 5 points 4) The Right to be informed about one’s Health "Everyone has the right to be informed about their health…" (Article L1111-2).

8. Leonetti Law : 5 points 5) Respect for the Autonomy of the Person "The doctor must respect the will of the person after having informed him about the consequences of his choice. If the will of the person to withhold or withdraw treatment endangers his/her life, the doctor must make every effort to convince the patient to accept the required care. He could have recourse to another member of the medical profession. In all cases, the patient must reiterate his decision after a reasonable time. It is recorded in his medical history. […]

9. Leonetti Law : 5 points 5) Respect for the Autonomy of the Person "No act nor any medical treatment can be performed without the free and informed consent of the person and that consent can be withdrawn at any time." (Article L1111-4).

10. Leonetti Law : 5 points 5) Respect for the Autonomy of the Person "Except in an emergency, or in circumstances in which consultation is impossible, no intervention or investigation can be undertaken, without asking the proxy decision maker under Article L. 1111-6, or family, or failing that, one of the relatives." (Article L1111-4).

11. Leonetti Law : 5 points 5) Respect for the Autonomy of the Person "When a person is unable to express his will, the act of withholding or withdrawing treatment that could save his endangered life, cannot be achieved - without respecting a collective medical procedure defined by the code of medical ethics - and without asking the proxy decision maker under Article L. 1111-6 or family or, failing that, one of the relatives - and without consulting the advanced directives of the person. The decision to withhold or withdraw treatment is included in the patient’s medical history." (Article L1111-4)

12. Leonetti Law : explanatory memorandum “By allowing the aware patient to refuse any treatment, this legislation implicitly applies to the right to refuse artificial feeding; this latter practice is considered by the Council of Europe, physicians and theologians, as a treatment."

13. The conscious patient : 1) The patient is informed 2) The patient must reiterate his request after a “reasonable time”; 3) The decision of the patient is recorded in his/her medical history. Withdrawing or withholding treatment

14. The unconscious patient : three requirements: - respect for the will of the individual patient, - right to a consultation with another physician - right to a common medical decision.” Withdrawing or withholding treatment

15. On the Ethical Level - 2 -

16. On the ethicallevel First observation Nourishment and hydration belong de facto to our physiological needs. social imaginary anorexia Orality stage

17. On the ethicallevel First observation : Ethical discernment must take into account both what orality means to the various people involved andwhat a patient experiences when he or she is confronted with an environment that has absolutely nothing in common with the experience of someone who sits at a table at mealtimes.

18. On the ethicallevel Second observation : The status of artificial nutrition and hydration. Is there an intrusion through the skin of the sick person?

19. On the ethicallevel Third observation If artificial nutrition and hydration are treatments rather than basic forms of care, may one "simply" discontinue them by claiming that this therapy is merely prolonging life?

20. On the ethicallevel "One is forbidden to terminate one's life, but one is not obliged to seek all means (even illicit means) to prolong it.” Francisco de Vitoria

21. The Influence of the SurroundingMedicalDiscourse - 3 -

22. The Influence of the SurroundingMedicalDiscourse In medicalizedsocieties, the relevance of artificialhydration-nutrition iscaptive of twodiscourses: that of evidencebasedmedicine and objective evaluationthrough "best practices" and that of the subjectwiththeirownhistory, the stuff of their imagination, theirexperience of foodsincechildhood.

23. The Influence of the SurroundingMedicalDiscourse Basically, all physicians –but alsocaregivers – have to learn to beferrymenratherthantechnicianssubmitting an evidence-baseddiscourse, to be a man or womanwhowalksalongwith the one they are caring for, whoreceive as much as theygive, whoallowsothers to live theirdeathwhen the end becomescloser, while standing in the doorway, watching the othersleaving for anothershore.

24. Personal Bibliography on the Topic Marie-Jo Thiel, “Nutrition and Hydration in the Care of Terminally ill Patients. Ethical and Theological Challenges”, In Linda Hogan (ed.) Applied Ethics in a world Church. The Padua Conference. Orbis Books, Maryknoll-New York, 2008, p.208-215. Marie-Jo Thiel, « Hydratation et alimentations artificielles en fin de vie », Revue des sciences sociales n° 39, 2008, p.132-145. Numéro sur “Éthique et santé”. Codirection du numéro avec Pascal Hintermeyer et David Le Breton. Marie-Jo Thiel, « Alimentation et hydratation en fin de vie – Nutrition and hydrationat the end of life”, Nutrition clinique et métabolisme, 23 (2009) 42–45. Marie-Jo Thiel, « L’hydratation de la personne âgée en fin de vie », Actes des 12e entretiens de nutrition à l’institut Pasteur de Lille, 3-4 Juin 2010. Marie-Jo Thiel, « L’hydratation de la personne âgée en fin de vie », Pratiques en Nutrition, Ed. Elsevier-Masson, N°24, Octobre-Décembre 2010, p.25-29. Marie-Jo Thiel, « Peut-on ne pas nourrir un malade en fin de vie ? ». Actes ERERAL (à paraître).

25. Pr Marie-Jo Thiel, CEERE, Strasbourg (France) - http://www.ethique-alsace.unistra.fr