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The Moral and Legal Issues Surrounding the Treatment and Health Care of Patients in Persistent Vegetative State

  • Abstract:
    In this project, those problems were being discussed, which relatives, doctors, nursing staff and other people involved are facing when treating patients in the persistent vegetative state (PVS). The questions arising already start with an appropriate definition of the disease pattern; they range from criteria of a certain diagnosis and prognosis over problems connected to the determination of type and dimension of the therapy, to the safeguarding of the necessary conditions regarding care and rehabilitation. Medical and care-giving aspects are closely connected to ethical, legal and health-political aspects.
    It was the goal of this project to elaborate the similarities and differences as regards the answering of the said questions and the regulations that are legally effective in the countries involved, to ask for the reasons and principles lying behind as well as to debate about appropriate solutions.
    The project was successful in contributing to inform more intensively about the diagnostic and therapeutic opportunities for the patients affected in order to form a basis on which the diagnostic-prognostic insights can be fuelled and the conditions in care and rehabilitation can be improved, especially in those countries where rehabilitation, as of yet, had not been developed far enough.

    In the ethical-legal discussion, which was fuelled by public conferences, criteria could be accentuated for the decisions to be made, which do justice to the leading beliefs – which, in the European context, means: the dignity of the affected patient and the resulting rights to protection. After a conference at the Royal College of Physicians in London in March 1995, which focused on medical problems, and prior to a conference at the Centrum voor Bio-Medische Ethiek en Recht of the Katholieke Universiteit in Leuven in October 1997 dealing with legal questions, the Institute for Science and Ethics (IWE) hosted an international symposium at the Science Center in Bonn on December 8th and 9th, 1996; this symposium was organized within the scope of this project, was funded by the German Research Foundation (dfg) as well as the Georg and Margot Clever-Foundation and had at its focus ethical questions concerning the treatment of patients in an absolute persistent vegetative state.

    For the first time, this conference discussed the difficult ethical questions related to the named disease patterns within a European context. It had been planned as a symposium of the involved disciplines in which representatives of both the relatives and the nursing professions contributed. Of the questions that arose from the perspective of the nursing professions and the familial care, the conference in Bonn could only discuss those questions that were of direct ethical relevance. A synopsis of the results has been published (Lanzerath 1997).
    As one contribution to the overall project, the King’s College in London developed a comprehensive questionnaire, which was sent to doctors in various European countries (Great Britain, Ireland, Germany, France, Belgium, the Netherlands, Greece, Poland), who deal with intensive care and rehabilitation of according patients. In the spring of 1995, the Institute for Science and Ethics (IWE) took over the shipping of this questionnaire to doctors (neurologists, neurosurgeons, rehabilitation-clinicians) within Germany with the expectation of, that way, having the specific opinions influencing the treatment of this group of patients in Germany become obvious in a European comparison.

    The questions apply to decision-making situations the individual doctor is being confronted with. The questionnaire’s results confirm the presumption that doctors in different European countries are guided in their decisions to act, in particular as regards the termination of treatment and renouncement of treatment, by ethical positions that strongly differ. While the termination of treatment in the form of a termination of the total parenteral nutrition is being dismissed by the majority of German doctors even in cases of a bad prognosis concerning a PVS, in the British and Dutch questionnaire, for instance, a respective majority of doctors questioned found a termination of the total parenteral nutrition to be generally justifiable under certain circumstances.
    The existing discrepancies show that it is not reasonable to advocate a scheme for standardized European regulations for such cases. Obviously, the decision-making is dependent on a particular cultural context and can always only be made on a case-by-case basis.

    The results of the German questionnaire have met positive response amongst the relatives’ association “Schädel-Hirnpatient in Not” (“craniocerebral patient in need”) and are documented in the association’s journal Wachkoma 5 (1998), pages 10-16.
    The Institute for Science and Ethics (IWE) has published the German results of the questionnaire in combination with the results yielded in the other participating countries in an ethical commentary (Lanzerath, Honnefelder, Feeser 1998).


  • Contributing:
    Prof. Andrew Grubb
    Centre of Medical Law and Ethics, King's College London, Great Britain (Coordinator)

    Dr. Keith Andrews, M.D., M.B.B.S., F.R.C.P., M.R.C.P.
    Royal Hospital for Neuro-disability, London, Great Britain

    Dr. Dolores Dooley
    Department of Philosophy University College Cork, Ireland

    Prof. Dr. jur. Dr. h.c. Albin Eser, M.C.J.
    Max-Planck-Institut für ausländisches und internationales Strafrecht, Freiburg i.Br.

    Tina Garanis-Papadatos
    National School of Public Health, Athen, Griechenland

    Prof. Dr. phil. Dr. h.c. Ludger Honnefelder
    Institut für Wissenschaft und Ethik, Bonn

    Prof. Bryan Jennett, C.B.E., M.D., F.R.C.S.
    Institute of Neurological Sciences, Glasgow, Großbritannien

    Dr. jur. Hans-Georg Koch
    Max-Planck-Institut für ausländisches und internationales Strafrecht, Freiburg i.Br.

    Prof. Marie-Louise Lamau
    Centre d'Éthique Médicale, Universität Lille, Frankreich

    Dr. Neil Lambe
    Centre of Medical Law and Ethics, King's College London, Großbritannien

    Dr. phil. Dirk Lanzerath
    Deutsches Referenzzentrum für Ethik in den Biowissenschaften, Bonn

    Dr. Halina Niec
    Human Rights Centre, Jagiellonian University, Krakau, Polen

    Prof. Dr. theol. Paul Schotsmans
    Centrum voor Bio-Medische Ethiek en Recht, Universität Leuven, Belgien

    Dr. Maurice de Wachter
    Instituut voor Gezondheidsethiek, Maastricht, Niederlande

    Dr. Pat Walsh
    Centre of Medical Law and Ethics, King's College London, Großbritannien

 

  • Funding:
    BIOMED 1 der Europäischen Kommission

 

  • Funding period:
    Juni 1994 - Mai 1997

 

  • Publications:
    Honnefelder, L.: Medizinische Ethik und ärztliche Teleologie. Zu den ethischen Aspekten der Behandlung irreversibel bewußtloser Patienten. In: Honnefelder, L., Streffer, C. (Hg.): Jahrbuch für Wissenschaft und Ethik, Bd. 2, Berlin, New York 1997, 169-180.

    Lanzerath, D.: Selbstbestimmung und Lebensrecht. Die 2. Europäische Fachkonferenz im Rahmen des BIOMED 1 Projekts «The moral and legal issues surrounding the treatment and health care of patients in persistent vegetative state (PVS)» am 8./9. Dezember 1995 in Bonn. In: Honnefelder, L., Streffer, C. (Hg.): Jahrbuch für Wissenschaft und Ethik, Bd. 2, Berlin, New York 1997, 253-276.

    Lanzerath, D.: Art.: Koma, irreversibles/irreversibel Komatöse, 2. ethisch. In: Lexikon der Bioethik, Bd. 2, Gütersloh 1998, 410-412.

    Lanzerath, D., Honnefelder, L., Feeser, U.: Nationaler Bericht der europäischen Befragung: «Doctors' views on the management of patients in persistent vegetative state (PVS)» im Rahmen des Forschungsprojekts «The moral and legal issues surrounding the treatment and health care of patients in persistent vegetative state». In: Ethik in der Medizin 10 (1998), 152-180.
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