1. Guidelines toward an ethical though of quality Pr. VENTURA Manfredi Centre de traumatologie et de Réadaptation Bruxelles Belgique

2. Directives pour mener une réflexion éthique de qualité Pr. VENTURA Manfredi Centre de traumatologie et de Réadaptation Bruxelles Belgique

3. Target groups Persistent vegetative state: – VS persisting after a period of 1 month post insult (acute traumatic or non traumatic lesion) Permanent vegetative state – After 3 months of non traumatic cerebral lesion – After 12 months of traumatic cerebral lesion Minimally conscious state – Major difference in clinical and ethical appreciation Distinction has to be done with the above mentioned groups

4. Key issues Patients in permanent (persistent) VS (or to a lower extent MCS) have lost own will and auto-determination Everything has to be made in the best of their interests – Ideally patient has written a anticipative declaration (will) – Otherwise the patients presumed will should be determined and taken into account Diagnosis and even prognosis are frequently uncertain Uncertainty with these 2 last points complicates even further the care of these patients mainly for ethical reasons

5. Prognosis and decision Permanent vegetative state is quite certainly irreversible – Fixed situation with no hope of improvement Minimal conscious patients have limited possibilities of improvement – very high probability of staying with severe cognitive and physical impairments Those patients are at high risk of complications – Increasing discomfort – Escalading of treatment – Limitation of possibilities of care

6. Specific questions Value of life Meaning of life Dignity of life and...patient Meaning of care and treatment Value of care and treatment Right – To care – To live – …to die

7. Ethical discussion and guidelines Specific workgroup devoted to initiate this discussion as: – Highly delicate and sensitive topic, especially in this group of patients – Law on euthanasia not of application for this peculiar group – No international consensus – All patients in Belgium should have equal opportunity in confrontation with life and death – Long term care facilities do not usually have formal contact with ethical committee – Public attention and expectations on these matters are very high

8. Ethical workgroup mission No formal advice but recommendations – Within the Belgian juridical framework Missions of the ethical subgroup : 1. Conditions related to ethics to which the centers implicated in the network have to comply to benefit from the structural financing 2. Elaboration of a procedure of ethical thinking about quality for the target group of patient To be reported to the Belgian bioethical consultative committee An ethical dialogue should be recommended at any moment with any involved person – Family / confidence person – Carer

9. Directives for ethical thinking Working out and communication of correct medical diagnosis and realistic prognosis (as precise as possible) Ethical thinking has to take into account the values of – Patient – Family and relatives – Carers – Institution – Society

10. Specific procedures Initiation (prolongation) of treatment Abstention (stopping) of treatment Instruments that can be of use: – Institutional elaboration of ethical politic Recommendation of the creation in each institution of an ethical charter defining the philosophical view to which staff could rely and to give (patients and) family a clear view of the local options – Designation of a contact person (or group) for ethical questions related to those patients – Use of DNR procedure (code) – Use of specific ethical thinking transfer document – Setting up of ethical formation for professional carers and managers

11. Conclusions VS and MCS patients are a specific population – With specific needs – With specific ethical considerations In this field medical decisions and ethical considerations are closely related and even linked A peculiar thought is needed as usual laws and medical considerations are usually not relevant Thanks to this pilot project Belgium could be one of the first country to establish formal, concrete and practical ethical consideration for this important target group

12. Many thanks and acknowledgments to… All the actors implicated in the network – Expertise centers and long term care units All the members of the federal platform and especially to: – His past president Mrs. D. Simoens, – His current coordinator Mr. Wiet Raes, (Public Health Ministry) – His current president Mr. W. Baeckelandt The Ethical committee subgroup – its president Mrs. L. Leunens (Juridic Service of Public Health Ministry)