Sjef Gevers

Consent systems for post mortem organ donation in Europe.

In the Netherlands, like in many other European countries, there is a considerable shortage of vital organs (hearts, kidneys etc.) for transplantation purposes. While living organ donation is of increasing importance as an alternative source for at least some organs (such as kidneys), the supply is still largely on public authorities, hospitals and other parties involved to do everything to improve on cadaveric organ donation. However, continuing efforts in the field of general information of the public, education of professionals, and organisational measures at hospital level have had so far no or little effect on the number of transplantable organs. Therefore, the question has been raised whether the consent system for post mortal organ removal (that has been laid down in the Organ Donation Act of 1998) should be changed. To answer that question an extensive study has been carried out, including a survey of attitudes of the Dutch population on organ donation, an analysis of the practice of organ retrieval in Dutch hospitals, as well as an international comparison of donation rates in order to identify the relative importance of the consent systems (as a factor influencing the availability of organs). The study also included a comparative analysis of the consent systems in ten European countries. The aim of that part of the study was not only to delineate the similarities and differences between the various systems, but also to help in answering the question whether the change from an opt in to an opt out system could raise the number of cadaveric organ donations. In this article, we present the main results of that comparative part of the study. (aut.ref.)

Opting-out systems: no guarantee for higher donation rates

There are considerable differences in the number of organ donations between countries. It is assumed that opting‐out systems have a significantly positive impact on the national organ donation rate. The aim of our study was to establish whether different consent systems explain the difference in organ donation rates between countries when taking into account the difference in relevant mortality rates. For this study, we compared data on donation and relevant mortality rates for 10 different countries as well as information on the existing consent systems. This international comparative study shows that there is a strong correlation between mortality rates and donation rates (Spearmans ρ = 0.81 (P < 0.01). International comparative legal research has shown that the differences between decision systems are marginal. When the national organ donation rates are corrected for mortality rates, these findings are confirmed: the donor efficiency rate shows that opting‐out systems do not automatically guarantee higher donation rates than opting‐in systems.

The potential of legislation on organ donation to increase the supply of donor organs

OBJECTIVES The aim of this paper is to assess the possibilities to adapt the 1998 Dutch Organ Donation Act, taking account of fundamental principles such as the right to physical integrity, equitable access to and equal availability of care, and the non-commerciality principle, with a view to increasing the organ supply. METHODS In 2008 the Dutch Taskforce on Organ Donation presented several proposals to amend the Act and to increase the supply of organs. This paper describes the proposals to amend the Act and evaluates them by assessing their intrinsic adherence to basic principles and the available evidence that these proposals will indeed increase the organ supply. RESULTS Several proposals could constitute an infringement of fundamental principles of the Act. Moreover, evidence for their impact on the organ supply is lacking. Changing the consent system is possible, as this would not incur legal objections. There are diverging views regarding the impact of consent systems on the organ supply. CONCLUSIONS The scope for changing the Act and its impact on organ procurement is at best limited. Relying on legislation alone will possibly not bring much relief, whereas additional policy measures may be more successful.

Parents who wish no further treatment for their child

Background In the ethical and clinical literature, cases of parents who want treatment for their child to be withdrawn against the views of the medical team have not received much attention. Yet resolution of such conflicts demands much effort of both the medical team and parents. Objective To discuss who can best protect a childs interests, which often becomes a central issue, putting considerable pressure on mutual trust and partnership. Methods We describe the case of a 3-year-old boy with acquired brain damage due to autoimmune-mediated encephalitis whose parents wanted to stop treatment. By comparing this case with relevant literature, we systematically explored the pros and cons of sharing end-of-life decisions with parents in cases where treatment is considered futile by parents and not (yet) by physicians. Conclusions Sharing end-of-life decisions with parents is a more important duty for physicians than protecting parents from guilt or doubt. Moreover, a request from parents on behalf of their child to discontinue treatment is, and should be, hard to over-rule in cases with significant prognostic uncertainty and/or in cases with divergent opinions within the medical team.

Donor education campaigns since the introduction of the Dutch organ donation act: increased cohesion between campaigns has paid off

Governments utilize special policy measures to increase and maintain positive attitudes among their citizens towards consent registration and organ donation. Little has been published on these national strategies. Some studies report on the impact of single policy measures shortly after their implementation, whereas the assessment of the impact of a national strategy on organ donation over a long period of time has been lacking. The aim of this study is to assess the impact of the Dutch donor education strategy (1998–2008) on the availability of donor organs, by trying to disentangle the impact of education from other factors. In this study, we have devised a research strategy to assess the impact of policy measures at national level, while providing information about Dutch initiatives to increase registration and procurement rates, and demonstrating and explaining these increases. The increased resources and improved strategies employed to educate the public in relation to organ donation have paid off, but the impact decreases over time. The question remains whether the effects of these policy measures will further level off over time and what levels of increase in donor registration rates and efficiency of donor procurement are realistic targets to achieve.

Third Trimester Abortion for Fetal Abnormality

Developments in medical technology have increased the possibility of diagnosing severe structural abnormalties in the fetus. If these occur, a woman may request termination of her pregnancy. This raises serious ethical and legal questions, in particular if the anomalies are discovered in the third trimester when the fetus is considered viable. Should doctors be allowed to act upon a request for abortion in such a situation, and, if so, which safeguards should be in place? These questions are discussed with special reference to the Netherlands where a commission established by the government recently published a report on this matter.

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.

Physician Assisted Suicide in Psychiatry: An Analysis of Case Law and Professional Opinions

For more than two decades euthanasia and assisted suicide have been openly debated in the Netherlands. One issue that has raised considerable debate over the last few years is the acceptability of physician assisted suicide in psychiatry. In Dutch medical practice these cases are very rare. In a survey carried out in 1996 amongst half of the Dutch psychiatrists 37% of the respondents indicated that they had at least once received an explicit, persistent request for physician assisted suicide. Twelve respondents had complied. The researchers estimate that there are 320 requests a year in psychiatric practice and two to five assisted suicides. Nevertheless, the issue of physician assisted suicide in psychiatry has attracted much attention, partly because of a number of recent court decisions. However, interest is certainly also related to the fact that the issue raises fundamental questions concerning the limits of euthanasia and assisted suicide.

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.

News and Views 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 patients 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.