Withdrawing life support from patients in a persistent vegetative state: the law in the Netherlands

This article sets out how a case like that of ms. Schiavo is likely to be decided in a Dutch court and compares that with the law in the United States. In the Netherlands there is one case with striking similarities: the decision of the Arnhem Court of Appeal of 1989. After describing that case (which to a large extent still reflects the legal state of the art), comments are given on several aspects of the issue, such as the labelling of artifical feeding as a medical intervention, the role of the physician, the position of the proxy or surrogate, the ways to resolve dispute in case of conflict, and the significance of advance directives. The analysis will show that, although there is more consensus on the issue now than there was 16 years ago, there are still several questions that need to be addressed in the future.     

Surrogate decision-making for incompetent elderly patients: the role of informal representatives

Informal or unofficial representation refers to the practice (more common in some European jurisdictions than in others), that persons not designed by a court or by the patient himself, make medical decisions on the patient's behalf in case of their incompetence. If the law provides for this, it is usually next of kin (spouse, children, brothers and sisters, etc.) who are allowed to act in such a capacity. Informal representation raises several questions. Are family members always familiar with what their relative would have wished, ready to take responsibility, and not too much reigned by their emotions? The basic legal concern is whether there are sufficient procedural and other safeguards to protect the incompetent patient from representatives who do not serve their best interests. In addressing these issues, after a brief survey of the law in the Netherlands as compared with that in Belgium, Germany and England/Wales, we will argue that informal representation as such is not at variance with international and European standards. However, an 'informal' approach to surrogate decision-making should always go together with sufficient protection of the incompetent patient, including procedural safeguards with regard to the decision that the patient is incompetent, limits to the decision-making power of informal representatives and effective forms of conflict resolution.     

Regulating tissue research: do we need additional rules to protect research participants?

This article explores whether additional rules are needed for the regulation of tissue research in Europe. A human rights-based approach (referring to international documents and illustrative examples from national legislation) is taken to address the question: what is so special about tissue, in particular when compared to personal data? The existing regimes in Europe on data protection and clinical trials are presented and examined for their suitability to govern tissue research, taking into account the differences between data and tissue. Six recommendations are outlined, highlighting important points future legislation on tissue research must take into account.     

Introduction of a national electronic patient record in The Netherlands: some legal issues

The electronic patient record (EPR) is a major technological development within the healthcare sector. Many hospitals across Europe already use institution-based electronic patient records, which allow not only for electronic exchange of patient data within the hospital, but potentially also for sharing medical data with external healthcare providers, involved in the patient's care, such as general practitioners or pharmacists. In this article, we discuss the attempt made by the Dutch government to introduce a nationwide electronic patient record (n-EPR). Describing and analyzing the new legislation that is currently being developed to establish the infrastructure for the n-EPR and the related legal issues, we conclude that the introduction of a n-EPR give rise to some substantial concerns. These vary from technical and quality issues such as the reliability of patient data and sufficient standardization and interoperability of the systems used, to issues in the field of data security and confidentiality. For a successful introduction of the n-EPR within the healthcare sector, a condicio sine qua non is that the related legislation provides sufficient safeguards and clarity with respect to the responsibilities and liabilities of its main users: the healthcare professionals.     

Dementia and the law

The care for patients with dementia raises many legal (and ethical) issues. This article explores some of the more important topics, i.e. (early) diagnosis of the disease, the availability and provision of care, treatment and non treatment decisions, and medical research with dementia patients.