The American Journal of Bioethics, Volume 11, Issue 6, Page 43-44, June 2011.

The American Journal of Bioethics, Volume 11, Issue 6, Page 45-46, June 2011.

In her target article “Shared health governance” (AJOB 11(7): 32-45, 2011) and in her book Health and Social Justice (2009), Jennifer Prah Ruger defends an original model of governance dubbed “Shared Health Governance” (SHG). This model borrows elements from many other models of governance, and one may wonder what is the secret sauce that holds together these diverse ingredients. In response, Ruger would perhaps ultimately turn to public moral norms. My comment raises some concerns about the function and content of (...) these norms in her model and their connection to her claims about shared sovereignty within SHG. (shrink)

The American Journal of Bioethics, Volume 11, Issue 6, Page 60-62, June 2011.

The American Journal of Bioethics, Volume 11, Issue 7, Page 53-55, July 2011.

The American Journal of Bioethics, Volume 11, Issue 6, Page 52-53, June 2011.

Continuous deep sedation at the end of life is a practice that has been the topic of considerable ethical debate, for example surrounding its perceived similarity or dissimilarity with physician-assisted dying. The practice is generally considered to be legal as a form of symptom control, although this is mostly only assumed. France has passed an amendment to the Public Health Act that would grant certain terminally ill patients an explicit right to continuous deep sedation until they pass away. Such a (...) framework would be unique in the world. In this paper we will highlight and reflect on four relevant aspects and shortcomings of the proposed bill. First, that the bill suggests that continuous deeps sedation should be considered as a sui generis practice. Second, that it requires that sedation should always be accompanied by the withholding of all artificial nutrition and hydration. In the most recently amended version of the legal proposal it is stated that life sustaining treatments are withheld unless the patient objects. Third, that the French bill would not require that the suffering for which continuous deep sedation is initiated is unbearable. Fourth, the question as to whether the proposal should be considered as a way to avoid having to decriminalise euthanasia and/or PAS or, on the contrary, as a veiled way to decriminalise these practices. The French proposal to amend the Public Health Act to include a right to continuous deep sedation for some patients is a unique opportunity to clarify the legality of continuous deep sedation as an end-of-life practice. Moreover, it would recognize that the practice of continuous deep sedation raises ethical and legal issues that are different from those raised by symptom control on the one hand and assisted dying on the other hand. Nevertheless, there are still various issues of significant ethical concern in the French legislative proposal. (shrink)

In assisted dying, the end-of-life trajectory is shortened to relieve unbearable suffering. Unbearable suffering is defined broadly enough to include cognitive (early dementia), psychosocial or existential distress. It can include old-age afflictions that are neither life-threatening nor fatal in the “vulnerable elderly”. The voluntary refusal of food and fluids (VRFF) combined with continuous deep sedation (CDS) for assisted dying is legal. Scientific understanding of awareness of internal and external nociceptive stimuli under CDS is rudimentary. CDS may blunt the wakefulness component (...) of human consciousness without eradicating internal affective awareness of thirst and hunger. Patients may suffer because of the slow dying process following dehydration and starvation. The difficulty to adequately control distress, without bringing the dying process to a rapid conclusion by lethal pharmacological interventions, can cause feelings of guilt among hospice and medical staff. Furthermore, the double-effect principle is not applicable in these situations because the primary objective of VRFF is to hasten death. Legal and societal debate should focus on sharpening the boundaries between assisted dying and palliative care. This separation is necessary to: 1) uphold trust in the patient-phyician relationship, and 2) preserve integrity and ethics of the medical profession. (shrink)

The American Journal of Bioethics, Volume 11, Issue 6, Page 65-66, June 2011.

The American Journal of Bioethics, Volume 11, Issue 7, Page 55-57, July 2011.

The American Journal of Bioethics, Volume 11, Issue 6, Page 48-49, June 2011.

The application of continuous deep sedation in the treatment of intractable suffering at the end of life continues to be tied to a number of concerns that have negated its use in palliative care. Part of the resistance towards use of this treatment option of last resort has been the continued association of CDS with physician-associated suicide and/or euthanasia, which is compounded by a lack clinical guidelines and a failure to cite this treatment under the aegis of a palliative care (...) approach. I argue that reinstituting a palliative care-inspired approach that includes a holistic review of the patient’s situation and the engagement of a multidisciplinary team guided by clearly defined practice requirements that have been lacking amongst many prevailing guidelines will overcome prevailing objections to this practice and allow for the legitimization of this process. (shrink)

The American Journal of Bioethics, Volume 11, Issue 6, Page 41-42, June 2011.

The American Journal of Bioethics, Volume 11, Issue 6, Page 57-59, June 2011.

The main premise of the Royal Dutch Medical Association's (RDMA) guideline on palliative sedation is that palliative sedation, contrary to euthanasia, is normal medical practice. Although we do not deny the ethical distinctions between euthanasia and palliative sedation, we will critically analyse the guideline's argumentation strategy with which euthanasia is demarcated from palliative sedation. First, we will analyse the guideline's main premise, which entails that palliative sedation is normal medical treatment. After this, we will critically discuss three crucial propositions of (...) the guideline that are used to support this premise: (1) the patient's life expectancy should not exceed 2 weeks; (2) the aim of the physician should be to relieve suffering and (3) expert consultation is optional. We will conclude that, if inherent problematic aspects of palliative sedation are taken seriously, palliative sedation is less normal than it is now depicted in the guideline. (shrink)

The American Journal of Bioethics, Volume 11, Issue 6, Page 55-57, June 2011.

In 2016, a law came into force in France granting terminally ill patients the right to continuous deep sedation until death. This right was proposed as an alternative to euthanasia and presented as the ‘French response’ to problems at the end of life. The law draws a distinction between CDS and euthanasia and other forms of sympton control at the end of life. France is the first country in the world to legislate on CDS. This short report describes the particular (...) context and underlying social values that led to this piece of legislation, and explores its meaning in the wider French context. (shrink)

In 2016, a law came into force in France granting terminally ill patients the right to continuous deep sedation until death. This right was proposed as an alternative to euthanasia and presented as the ‘French response’ to problems at the end of life. The law draws a distinction between CDS and euthanasia and other forms of sympton control at the end of life. France is the first country in the world to legislate on CDS. This short report describes the particular (...) context and underlying social values that led to this piece of legislation, and explores its meaning in the wider French context. (shrink)

Palliative sedation is an option of last resort to control refractory suffering. In order to better understand palliative-care nurses’ attitudes to palliative sedation, an anonymous questionnaire was sent to all nurses (589) employed in palliative care in Flanders (Belgium). In all, 70.5% of the nurses (n = 415) responded. A large majority did not agree that euthanasia is preferable to palliative sedation, were against non-voluntary euthanasia in the case of a deeply and continuously sedated patient and considered it generally better (...) not to administer artificial floods or fluids to such a patient. Two clusters were found: 58.5% belonged to the cluster of advocates of deep and continuous sedation and 41.5% belonged to the cluster of nurses restricting the application of deep and continuous sedation. These differences notwithstanding, overall the attitudes of the nurses are in accordance with the practice and policy of palliative sedation in Flemish palliative-care units. (shrink)

The American Journal of Bioethics, Volume 11, Issue 6, Page 49-51, June 2011.

The American Journal of Bioethics, Volume 11, Issue 7, Page 47-49, July 2011.

The American Journal of Bioethics, Volume 11, Issue 7, Page 57-59, July 2011.

The American Journal of Bioethics, Volume 11, Issue 6, Page 62-64, June 2011.

The American Journal of Bioethics, Volume 11, Issue 6, Page 54-55, June 2011.

ZusammenfassungDas Lindern von Leiden ist eine zentrale Aufgabe der Medizin. Seit einigen Jahren ist eine verstärkte Inanspruchnahme des Leidensbegriffs im medizinischen Kontext zu beobachten. Eine Reflexion und Klärung dessen, was mit dem Begriff „Leiden“ und Begriffen wie „unerträgliches Leiden“ gemeint ist, bleibt aber weitgehend aus. Diese Tatsache wirft eine Reihe von theoretischen und praktischen Problemen auf, die im vorliegenden Beitrag identifiziert und diskutiert werden. Dazu werden zunächst die Schwierigkeiten bei der Anwendung des Leidensbegriffs in der medizinischen Praxis am Beispiel der (...) Indikationsstellung für eine tiefe und kontinuierliche palliative Sedierung dargestellt. Anschließend wird das Problem auf theoretischer Ebene angegangen. Es wird sich zeigen, dass im medizinischen Kontext mit einem Konzept des Leidens operiert wird, das a) eine starke normative Valenz hat, b) bei dem primär der subjektive Charakter des Leidens im Vordergrund steht und das c) inhaltlich nicht ausreichend differenziert ist. Anschließend werden zwei Konzepte des Leidens vorgestellt und im Hinblick auf ihre Operationalisierbarkeit im medizinischen Kontext befragt. Auf dem Hintergrund anthropologischer Vorannahmen, werden schließlich in einem letzten Abschnitt Perspektiven zum Umgang mit dem Leidensbegriff in der Medizin entwickelt. (shrink)

Jennifer Prah Ruger (2011) rightly points out that social cooperation is essential for achieving health justice. But she is unhappy with the approach to cooperation that social scientists and philosophers have taken. Her main objection is that their models are based on narrow self-interest. Her own proposal, which she calls "shared health governance", is based on public moral norms instead. If individuals and institutions internalized and followed such norms, justice in health could be achieved. -/- In this commentary, I show (...) that Ruger fundamentally misdiagnoses the problem of social cooperation and health justice. Because of the faulty diagnosis, her own proposal is at best unworkable, at worst utopian. (shrink)

The American Journal of Bioethics, Volume 11, Issue 7, Page 51-53, July 2011.

The American Journal of Bioethics, Volume 11, Issue 6, Page 46-47, June 2011.

Debates on morally acceptable and lawful end-of-life practices in pediatrics were reignited by the recent amendment in Belgian law to allow euthanasia for minors of any age who meet the criteria for capacity. Euthanasia and its legalization in pediatrics are often opposed based on the availability of aggressive palliative sedation. For terminally ill patients, this type of sedation is often identified as continuous and deep sedation until death. We demonstrate that this reasoning is based on flawed assumptions: CDS is a (...) morally preferable alternative to euthanasia; CDS can meet the same patient needs as euthanasia; children lack the capacity and experience to make EOL decisions; unlike euthanasia, CDS does not raise capacity issues. Our aim is not to reject CDS as a valid option at the EOL, nor to offer a clear-cut defense of euthanasia for minors, but to emphasize the ethical issues with both practices. (shrink)

Terminally ill people might want to discuss the options they have of hastening their deaths with their psychologists who should therefore know the law that regulates euthanasia in the jurisdictions where they practice. The legal, and therefore ethical, situation that influences psychologists’ position and terminally ill people’s options, however, differs notably across jurisdictions. Our aim is to provide a brief moral-legal historical context that explains how the law reform processes in different jurisdictions created these different legal contexts and options that, (...) in turn, influence psychologists’ ethical position. We conclude by considering 8 specific ethical issues at a conceptual level that might confront psychologists irrespective of where they practice. (shrink)