[Written advance directives in dementia: useful and relevant]. / Schriftelijke wilsverklaringen bij dementie: bruikbaar en toepasbaar.

According to the Dutch euthanasia law, the current wishes of the patient can be replaced by an advance directive if the patient is unable to give consent. However, Dutch physicians say they have difficulty responding to advance directives in people with dementia. A crucial issue is how to establish whether the patient actually suffers in a specific situation. We argue that the patient's wishes, views and decisions should be discussed in a timely manner, and laid down both in patient directives and in the doctor's files. We also ask for regular discussion, updating and reaffirmation of the advance directive so that the patient can trust the doctor knowing the patient's wishes and what constitutes unbearable suffering for that patient. Through frequent discussion and reaffirmation, the advance directive can play the role intended by the law on euthanasia.

[Advance care planning for people with intellectual disability]. / Advance care planning: proactief medisch beleid bij mensen met een verstandelijke beperking.

Difficult medical decisions regularly need to be made for people with intellectual disability. They are often unable to play a meaningful role in this and the decisions fall to the family or guardians. A useful aid to proactive medical management is advance care planning. This is a long-term care plan which is centred on the well-being of patients and their quality of life. Ideally it should be a matter for patients and those closest to them, the responsible medical practitioner and those tasked with the day-to-day care of patients. It is important to draw up this plan carefully and to regularly review it in the light of current circumstances.

[E-research: problems with anonymity and consent]. / E-research: problemen rond anonimiteit en toestemming.

The Medical Research Involving Human Subjects Act (WMO) requires that participants in medical-scientific studies provide written consent. This requirement makes e-research (online research) unnecessarily difficult and sometimes impossible. Much of e-research involves online interventions that focus on sensitive issues such as sexual dysfunction, addiction and child abuse, for which anonymity is an important condition. WMO procedures, however, strictly interpret the word "written" as "on paper", and participants are not permitted to give consent by email, for example. A second requirement, which mainly makes studies among minors between the ages of 12 and 18 more difficult, is that both parents or the guardian must provide written consent. This undermines anonymity to such an extent that virtually no subjects remain. Participants in medical-scientific studies must always be identifiable to the investigator. But, apart from this, he/she should be possible to guarantee anonymity within the regulatory framework. There is good reason to adapt legal regulations to today's needs.

Dialogical nursing ethics: the quality of freedom restrictions.

This article deals with the question of how ethicists respond to practical moral problems emerging in health care practices. Do they remain distanced, taking on the role of an expert, or do they become engaged with nurses and other participants in practice and jointly develop contextualized insights about good care? A basic assumption of dialogical ethics entails that the definition of good care and what it means to be a good nurse is a collaborative product of ongoing dialogues among various stakeholders engaged in the practice. This article discusses the value of a dialogical approach to ethics by drawing on the work of various nursing scholars. We present a case example concerning the quality of freedom restrictions for intellectually disabled people. Issues for discussion include the role and required competences of the ethicist and dealing with asymmetrical relationships between stakeholders.

Alleviation of pain and symptoms with a life-shortening intention.

This article reports the findings of a study into the role of Dutch nurses in the alleviation of pain and symptoms with a life-shortening intention, conducted as part of a study into the role of nurses in medical end-of-life decisions. A questionnaire survey was carried out using a population of 1509 nurses who were employed in hospitals, home care organizations and nursing homes. The response rate was 82.0%; 78.1% (1179) were suitable for analysis. The results show that in about half of the cases (55.8%) nurses were involved in the decision making by the physician and that nurses were frequently (81.5%) involved in administering the medication. The authors' conclusion is that alleviation of pain and symptoms with a life-shortening intention represents a ;grey' area, in which physicians and nurses act on the basis of personal ethical norms rather than legal rules, professional guidelines or shared moral values.

Euthanasia and assisted suicide in Dutch hospitals: the role of nurses.

AIM: To report a study on the role of nurses in euthanasia and physician-assisted suicide in hospitals, conducted as part of a wider study on the role of nurses in medical end-of-life decisions. BACKGROUND: Issues concerning legislation and regulation with respect to the role of nurses in euthanasia and physician-assisted suicide gave the Dutch Minister for Health reason to commission a study on the role of nurses in medical end-of-life decisions in hospitals, homecare and nursing homes. METHOD: A questionnaire was sent in 2003 to 692 nurses employed in 73 hospital locations. The response suitable for analysis was from 532 (76.9%) nurses. Data were quantitatively analysed using spss version 11.5 for Windows. RESULTS: In almost half of the cases (45.1%), the nurse was the first with whom patients discussed their request for euthanasia or physician-assisted suicide. Consultations between physicians and nurses quite often took place (78.8%). In several cases (15.4%), nurses themselves administered the euthanatics with or without a physician. It is not self-evident that hospitals have guidelines concerning euthanasia/physician-assisted suicide. CONCLUSIONS: In the decision-making process, the consultation between the physician and the nurse needs improvement. In administering the euthanatics, physicians should take responsibility and should not leave these actions to nurses. Guidelines may play an important role to improve the collaboration between physicians and nurses and to prevent procedural, ethical and legal misunderstandings. RELEVANCE TO CLINICAL PRACTICE: Nurses in clinical practice are often closely involved in the last stage of a person's life. Consequently, they are often confronted with caring for patients requesting euthanasia or physician-assisted suicide. The results provide relevant information and may help nurses in defining their role in euthanasia and physician-assisted suicide, especially in case these practices should become legalised.

Dutch nurses' attitudes towards euthanasia and physician-assisted suicide.

This article presents the attitudes of nurses towards three issues concerning their role in euthanasia and physician-assisted suicide. A questionnaire survey was conducted with 1509 nurses who were employed in hospitals, home care organizations and nursing homes. The study was conducted in the Netherlands between January 2001 and August 2004. The results show that less than half (45%) of nurses would be willing to serve on committees reviewing cases of euthanasia and physician-assisted suicide. More than half of the nurses (58.2%) found it too far-reaching to oblige physicians to consult a nurse in the decision-making process. The majority of the nurses stated that preparing euthanatics (62.9%) and inserting an infusion needle to administer the euthanatics (54.1%) should not be accepted as nursing tasks. The findings are discussed in the context of common practices and policies in the Netherlands, and a recommendation is made not to include these three issues in new regulations on the role of nurses in euthanasia and physician-assisted suicide.

Implementation of diversity in healthcare practices: barriers and opportunities.

OBJECTIVE: The aim of this study is to investigate to which extent diversity is part of current healthcare practices and to explore opportunities and barriers in the implementation of diversity dimensions in healthcare practices. METHODS: Nine in-depth, semi-structured interviews and three focus groups were conducted in three healthcare settings (mental health, hospital, nursing home care). RESULTS: Results demonstrate that (the potential of) diversity is an ambiguous issue; diversity is said to be important, but this has not led to adjustments of the neutral, disease-oriented approach of patients. If recognized at all, diversity is reduced to one dimension (sex). Barriers in the implementation of diversity relate to: (a) lacking awareness and knowledge of diversity, (b) poor information and communication, and (c) organizational constraints. Opportunities to implement diversity in healthcare include: (d) an emerging sense of urgency to attend to diversity, (e) the development of good practices, and (f) the political climate. CONCLUSION: Various barriers and some opportunities for the implementation of diversity in healthcare practices have been identified. There is an ambiguity in how professionals deal with diversity. As a result, the neutral approach remains dominant in practice and policy. PRACTICE IMPLICATIONS: In order to raise the awareness and enhance the competence of professionals, educational programmes and learning networks are required.

Patient incompetence and substitute decision-making: an analysis of the role of the health care professional in Dutch law.

In any jurisdiction that takes patient autonomy and patient rights seriously, patient competence is a pivotal concept. Competence, which should be distinguished from criminal responsibility and legal capacity, can be defined as the ability to exercise rights, more in particular the ability to exercise one's right to give or refuse informed consent. It depends upon a patient's competence whether or not this patient has the final say in a health care decision and whether or not the patient can legitimately be subjected to compulsory interventions in that context. These possibly far reaching consequences explain why competence is the topic of a growing amount of legal regulation and why policy attempts are made at operationalising the concept in workable criteria. Although agreed upon criteria for competence do not exist, there is consensus about some preconditions of competence assessment. Two kinds of models of substitute decision-making for incompetent patients are available, i.e. best interests models and representational models. The Dutch Contract of medical treatment Act is treated as an example of the latter. It is shown that in the Dutch model, health care professionals are not at the mercy of patient representatives. On the contrary, health care professionals are supposed to judge their patients' subjective interests and may eventually overrule the representatives. A public debate ought to take place about the basis for this authority.