New parents suddenly come face to face with myriad issues that demand careful attention but appear in a context unlikely to provide opportunities for extended or clear-headed critical reflection, whether at home with a new baby or in the neonatal intensive care unit. As such, their capacity for autonomy may be compromised. Attending to new parental autonomy as an extension of reproductive autonomy, and as a complicated phenomenon in its own right rather than simply as a matter to be balanced (...) against other autonomy rights, can help us to see how new parents might be aided in their quest for competency and good decision making. In this paper I show how a relational view of autonomy – attentive to the coercive effects of oppressive social norms and to the importance of developing autonomy competency, especially as related to self-trust – can improve our understanding of the situation of new parents and signal ways to cultivate and to better respect their autonomy. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Convention for Protection of Human Rights and Dignity of the Human Being with Regard to the Application of Biology and Biomedicine: Convention on Human Rights and BiomedicineCouncil of EuropePreambleThe Member States of the Council of Europe, the other States and the European Community signatories hereto,Bearing in mind the Universal Declaration of Human Rights proclaimed by the General Assembly of the United Nations on 10 December 1948;Bearing in mind the (...) Convention for the Protection of Human Rights and Fundamental Freedoms of 4 November 1950;Bearing in mind the European Social Charter of 18 October 1961;Bearing in mind the International Covenant on Civil and Political Rights and the International Covenant on Economic, Social and Cultural Rights of 16 December 1966;Bearing in mind the Convention for the Protection of Individuals with Regard to Automatic Processing of Personal Data of 28 January 1981;Bearing also in mind the Convention on the Rights of the Child of 20 November 1989;Considering that the aim of the Council of Europe is the achievement of a greater unity between its members and that one of the methods by which that aim is to be pursued is the maintenance and further realisation of human rights and fundamental freedoms;Conscious of the accelerating developments in biology and medicine;Convinced of the need to respect the human being both as an individual and as a member of the human species and recognising the importance of ensuring the dignity of the human being; [End Page 277]Conscious that the misuse of biology and medicine may lead to acts endangering human dignity;Affirming that progress in biology and medicine should be used for the benefit of present and future generations;Stressing the need for international co-operation so that all humanity may enjoy the benefits of biology and medicine;Recognising the importance of promoting a public debate on the questions posed by the application of biology and medicine and the responses to be given thereto;Wishing to remind all members of society of their rights and responsibilities;Taking account of the work of the Parliamentary Assembly in this field, including Recommendation 1160 (1991) on the preparation of a Convention on bioethics;Resolving to take such measures as are necessary to safeguard human dignity and the fundamental rights and freedoms of the individual with regard to the application of biology and medicine;Have agreed as follows:Chapter IGeneral provisionsArticle 1. (Purpose and object)Parties to this Convention shall protect the dignity and identity of all human beings and guarantee everyone, without discrimination, respect for their integrity and other rights and fundamental freedoms with regard to the application of biology and medicine.Each Party shall take in its internal law the necessary measures to give effect to the provisions of this Convention.Article 2. (Primacy of the human being)The interests and welfare of the human being shall prevail over the sole interest of society or science.Article 3. (Equitable access to health care)Parties, taking into account health needs and available resources, shall take appropriate measures with a view to providing, within their jurisdiction, equitable access to health care of appropriate quality. [End Page 278]Article 4. (Professional standards)Any intervention in the health field, including research, must be carried out in accordance with relevant professional obligations and standards.Chapter IIConsentArticle 5. (General rule)An intervention in the health field may only be carried out after the person concerned has given free and informed consent to it.This person shall beforehand be given appropriate information as to the purpose and nature of the intervention as well as on its consequences and risks.The person concerned may freely withdraw consent at any time.Article 6. (Protection of persons not able to consent)1. Subject to Articles 17 and 20 below, an intervention may only be carried out on a person who does not have the capacity to consent, for his or her direct benefit.2. Where, according to law, a minor does not have the capacity to consent to an intervention, the intervention may only be carried out with the authorisation of his or her representative or an authority or a person or... (shrink)

The aim of this article is to generate knowledge about parents’ participation in life-and-death decisions concerning their very premature and/or critically ill infants in hospital neonatal units. The question is: what are parents’ attitudes towards their involvement in such decision making? A descriptive study design using in-depth interviews was chosen. During the period 1997-2000, 20 qualitative interviews with 35 parents of 26 children were carried out. Ten of the infants died; 16 were alive at the time of the interview. The (...) comparative method (grounded theory) was used to analyse the data. The analysis was carried out continuously and in parallel with data collection. Six categories were revealed by the analysis: indecision and uncertainty (ambivalence); information and communication; participate, but do not decide; seeming to be included; the parents’ child; and individual consideration. The findings appear to indicate that parents agree that they should not have the final word in decisions concerning their infants’ future life or death. Such a responsibility would put too heavy a burden on parents who lack the medical knowledge and the professional experience needed to make such a decision, and would be likely to lead to them experiencing strong feelings of guilt. The findings show that parents should be well informed and listened to during the whole decision-making process. Their primary concern was how nurses and physicians communicate with parents who are experiencing a crisis, and how this serious information is presented. (shrink)

As a part of a research project on Dignity and Older Europeans Programme) I explore in this paper a set of notions of human dignity. The general concept of dignity is introduced and characterized as a position on a value scale and it is further specified through its relations to the notions of right, respect and self-respect. I present four kinds of dignity and spell out their differences: the dignity of merit, the dignity of moral or existential stature, the dignity (...) of identity and the universal human dignity. Menschenwürde pertains to all human beings to the same extent and cannot be lost as long as the persons exist. The dignity of merit depends on social rank and position. There are many species of this kind of dignity and it is very unevenly distributed among human beings. The dignity of merit exists in degrees and it can come and go. The dignity of moral stature is the result of the moral deeds of the subject; likewise it can be reduced or lost through his or her immoral deeds. This kind of dignity is tied to the idea of a dignified character and of dignity as a virtue. The dignity of moral stature is a dignity of degree and it is also unevenly distributed. The dignity of identity is tied to the integrity of the subject's body and mind, and in many instances, although not always, also dependent on the subject's self-image. This dignity can come and go as a result of the deeds of fellow human beings and also as a result of changes in the subject's body and mind. (shrink)

Inasmuch as unmitigated pain and suffering areoften thought to rob human beings of theirdignity, physicians and other care providersincur a special duty to relieve pain andsuffering when they encounter it. When pain andsuffering cannot be controlled it is sometimesthought that human dignity is compromised.Death, it is sometimes argued, would bepreferred to a life without dignity.Reasoning such as this trades on certainpreconceptions of the nature of pain andsuffering, and of their relationships todignity. The purpose of this paper is to laybare these (...) preconceptions. The duties torelieve pain and suffering are clearly mattersof moral obligation, as is the duty to respondappropriately to the dignity of other persons.However, it is argued that our understanding ofthe phenomena of pain and suffering and theirrelationships to human dignity will be expandedwhen we explore the aesthetic dimensions ofthese various concepts. On the view presentedhere the life worth living is both morally goodand aesthetically beautiful. Appropriate``suffering with'''' another can help to maintainand restore the dignity of the relationshipsinvolved, even as it preserves and enhances thedignity of patient and caregiver alike. (shrink)

The current debate on euthanasia in the Lowlands is a perfect examplification of the predominance of the principle of respect for autonomy in present-day medical-ethical decisionmaking. The aim of this article is the exploration of the more fundamental philosophical issues concerning the current status of autonomy in medical ethics. The starting point for this exploration is an analysis of the principle of respect for autonomy. The authors argue that the view on autonomy in contemporary bioethical discussions is more related to (...) the Millian understanding of autonomy rather than to Kant’s conception of respect for autonomy. The uncompromising veneration of personal autonomy and the subsequent view on the human self as unencumbered is placed under critique because this portrayal of the human person is rather unreal especially in medical-ethical decisionmaking where the fragility of human life is at stake. Furthermore, extending the claims of autonomy risks to undermine the public sphere. The defence of the principle of autonomy is taken on by the quality-of-life ethic that values human life because of its qualities. Being capable of making autonomous decisions is one of this main qualities. By this, the quality-of-life approach runs counter to an idea that is deeply ingrained in medicine, viz. the sanctity of human life that holds both the inviolability and the equal value of human life. These two approaches can, however, be integrated in Christian ethics by adopting a view on quality-of-life judgements in which the proportionality of benefits and burdens has a pivotal function. To conclude this article, the authors argue for a non-absolutist account of autonomy based on two modes of decentrement of the human self: the fundamental passivity at the core of the human person and the intersubjectivity of the human existence. (shrink)

Pioneering researchers claim that telepsychiatry presents the possibility of improving both the quality and quantity of patient care for populations in general as well as for those in rural and remote locations. The prevalence of, and literature on telepsychiatry has increased dramatically in the last decade, covering all aspects of research endeavors. However, little can be found on the topic of ethics in telepsychiatry. Using various clinical scenarios we may provide insight into the moral challenge in telepsychiatry—the lack of in-person (...) contact. The difficulty is to articulate what the significance of in-person contact is and further, its meaning in the therapeutic relationship between the patient and the physician. Using the personalist perspective and related philosophical approaches we may sketch an idea of the patient as person, existentially considered as a relational and bodily human being. By applying Brennan’s model for health technology assessment we may evaluate the morally troubling aspect of telepsychiatry—a lack of in-person contact—on this philosophical sketch of the person. This consideration is crucial when developing policies to guide the use of telepsychiatry in order to maintain the quality of care. (shrink)

Jotkowitz, Glick, and Gesundheit (2008) rightly critique Manninen (2006) for an errant analysis of the Groningen protocol. However, they draw conclusions about the protocol itself that are not justified. Because of the nature of the care of infants, the Groningen protocol doesn't break new ethical ground. We already have to treat infants without direct access to their autonomous preferences or values; therefore, we are already making the decisions that Jotkowitz, Glick, and Gesundheit argue we are beginning to take once active (...) euthanasia of infants is allowed. (shrink)

The growing support for voluntary active euthanasia is evident in the recently approved Dutch Law on Termination of Life on Request. Indeed, the debate over legalized VAE has increased in European countries, the United States, and many other nations over the last several years. The proponents of VAE argue that when a patient judges that the burdens of living outweigh the benefits, euthanasia can be justified. If some adults suffer to such an extent that VAE is justified, then one may (...) conclude that some children suffer to this extent as well. In an attempt to alleviate the suffering of extremely ill neonates, the University Medical Center Groningen developed a protocol for neonatal euthanasia. In this article, I first present the ethical justifications for VAE and discuss how these arguments relate to euthanizing ill neonates. I then argue that, even if one accepts the justification for VAE in adults, neonatal euthanasia cannot be supported, primarily because physicians and parents can never accurately assess the suffering of children. I argue that without the testament of the patient herself as to the nature and magnitude of her suffering, physicians can never accurately weigh the benefits and burdens of a child’s life, and therefore any such system would condemn to death some children whose suffering is not unbearable. I conclude that because the primary duty of physicians is to never harm their patients, neonatal euthanasia cannot be supported. (shrink)

Policies and position statements regarding decision-making for extremely premature babies exist in many countries and are often directive, focusing on parental choice and expected outcomes. These recommendations often state survival and handicap as reasons for optional intervention. The fact that such outcome statistics would not justify such approaches in other populations suggests that some other powerful factors are at work. The value of neonatal intensive care has been scrutinized far more than intensive care for older patients and suggests that neonatal (...) care is held to a higher standard of justification. The relative value placed on the life of newborns, in particular the preterm, is less than expected by any objective medical data or any prevailing moral frameworks about the value of individual lives. Why do we feel less obligated to treat the premature baby? Do we put newborns in a special and lesser moral category? We explore this question from a legal and ethical perspective and offer several hypotheses pertaining to personhood, reproductive choices, “precious children,” and probable evolutionary and anthropological factors. (shrink)

Pioneering researchers claim that telepsychiatry presents the possibility of improving both the quality and quantity of patient care for populations in general as well as for those in rural and remote locations. The prevalence of, and literature on telepsychiatry has increased dramatically in the last decade, covering all aspects of research endeavors. However, little can be found on the topic of ethics in telepsychiatry. Using various clinical scenarios we may provide insight into the moral challenge in telepsychiatry—the lack of in-person (...) contact. The difficulty is to articulate what the significance of in-person contact is and further, its meaning in the therapeutic relationship between the patient and the physician. Using the personalist perspective and related philosophical approaches we may sketch an idea of the patient as person, existentially considered as a relational and bodily human being. By applying Brennan’s model for health technology assessment we may evaluate the morally troubling aspect of telepsychiatry—a lack of in-person contact—on this philosophical sketch of the person. This consideration is crucial when developing policies to guide the use of telepsychiatry in order to maintain the quality of care. (shrink)

A summary of the existing literature related to moral distress (MD) and the paediatric intensive care unit (PICU) reveals a high-tech, high-pressure environment in which effective teamwork can be compromised by MD arising from different situations related to: consent for treatment, futile care, end-of-life decision making, formal decision-making structures, training and experience by discipline, individual values and attitudes, and power and authority issues. Attempts to resolve MD in PICUs have included the use of administrative tools such as shift worksheets, the (...) implementation of continuing education, and encouragement to report. The literature does not yet show these approaches to be effective in the resolution of MD. The need to acknowledge MD among PICU teams is discussed and an argument made that, to facilitate understanding among team members, practice stories need to be shared. (shrink)

The Groningen Protocol allows active euthanasia of severely ill newborns with unbearable suffering. Defenders of the protocol insist that the protocol refers to terminally ill infants and that quality of life should not be a factor in the decision to euthanize an infant. They also argue that there should be no ethical difference between active and passive euthanasia of these infants. However, nowhere in the protocol does it refer to terminally ill infants; on the contrary, the developers of the protocol (...) take into account the future quality of life of the infant. We also note how the Nazi Euthanasie Programm started with the premise that there is some life not worthy of living. Therefore, in our opinion, the protocol violates the traditional ethical codes of physicians and the moral values of the overwhelming majority of the citizens of the world. (shrink)

One of the most recent controversies to arise in the field of bioethics concerns the ethics for the Groningen Protocol: the guidelines proposed by the Groningen Academic Hospital in The Netherlands, which would permit doctors to actively euthanise terminally ill infants who are suffering. The Groningen Protocol has been met with an intense amount of criticism, some even calling it a relapse into a Hitleresque style of eugenics, where people with disabilities are killed solely because of their handicaps. The purpose (...) of this paper is threefold. First, the paper will attempt to disabuse readers of this erroneous understanding of the Groningen Protocol by showing how such a policy does not aim at making quality-of-life judgements, given that it restricts euthanasia to suffering and terminally ill infants. Second, the paper illustrates that what the Groningen Protocol proposes to do is both ethical and also the most humane alternative for these suffering and dying infants. Lastly, responses are given to some of the worries expressed by ethicists on the practice of any type of non-voluntary active euthanasia. (shrink)

Several criticisms of the Groningen Protocol rest on misunderstandings about how it works or which babies it concerns. Some other objections—about quality‐of‐life judgments and parents' role in making decisions about their children—cannot be easily cleared away, but at least in the context of Dutch culture and medicine, the protocol is acceptable.

The number of people suffering from dementia will rise considerably in the years to come. This will have important implications for society. People suffering from dementia have to rely on relatives and professional caregivers when their disorder progresses. Some people want to determine for themselves their moment of death, if they should become demented. They think that the decline in personality caused by severe dementia is shocking and unacceptable. In this context, some people consider euthanasia as a way to avoid (...) total deterioration. In this article, we discuss some practical and ethical dilemmas regarding euthanasia in persons with severe dementia based on an advance euthanasia directive. We are using a personalist approach in dealing with these ethical dilemmas. (shrink)

(2011). Standards, Norms, and Guidelines for Permissible Withdrawal of Life Support From Seriously Compromised Newborns. The American Journal of Bioethics: Vol. 11, No. 2, pp. 33-34.

Substitute decision-makers for severely disabled neonates who can be kept alive but who will require constant medical interventions and will die at the latest in their teens are faced with a difficult decision when trying to decide whether to keep the infant alive. By and large, the primary focus of their decision-making centers on what is in the best interests of the newborn. The best-interests criterion, in turn, is importantly conditioned by quality-of-life considerations. However, the concept of quality of life (...) is logically and ethically different for patients with a developing as opposed to a developed awareness. Unfortunately, this difference is ignored by current quality-of-life considerations, there are no quality-of-life measures that take this difference into account, and decision-making proceeds entirely without acknowledging this fact. This note outlines why this is a problem and why there is a need for a new set of tools that incorporates this distinction if the substitute decision-makers are to apply the best-interest criterion in a meaningful way. (shrink)

In the twenty-first century, decisions to withhold or withdraw life-supporting measures commonly precede death in the neonatal intensive care unit without major ethical controversy. However, caregivers often feel much greater turmoil with regard to stopping medical hydration and nutrition than they do when considering discontinuation of mechanical ventilation or circulatory support. Nevertheless, forgoing medical fluids and food represents a morally acceptable option as part of a carefully developed palliative care plan considering the infant’s prognosis and the burdens of continued treatment. (...) Decisions to stop any form of life support should focus on the clinical circumstances, not the means used to sustain life. (shrink)

Conflicts between bioethicists and disability theorists often arise over the permissibility of euthanasia and physician assisted suicide. Where mainstream bioethicists propose universalist guidelines that will direct action across a range of effectively disembodied situations, and take for granted that moral agency requires autonomy, feminist bioethicists demand a contextualisation of the circumstances under which moral decision making is conducted, and stress a more relational view of autonomy that does not require strict standards of independent agency. Nonetheless, neither traditional nor feminist perspectives (...) have fully engaged with the critique of disabled people that they are consistently subjected to discriminatory, even life-threatening, practice and policy in biomedical and health care. The paper revisits some of the issues that drive the often highly polarised debate between bioethicists and disability theorists around the question of end of life decisions involving disabled people. While many bioethicists have doubtless been indifferent to the difference that disability makes, I am also concerned that the very proper demand of disability activists and theorists to scrutinise all end of life decisions for signs of discrimination and even violence has segued into something damagingly restrictive that silences internal dissension and stifles external debate. Given that euthanasia and physician assisted suicide may be issues where conventional argument on either side will founder on deeply felt convictions, I make the radical move to speculate on an entirely different, quasi-Deleuzian, approach to the value of life in order to shake up entrenched positions, and begin to think differently. (shrink)