We motivate the possibility of using notions and methods derived from quantum physics, and more specifically from the research field known as ‘quantum cognition’, to optimally model different situations in the field of medicine, its decision-making processes and ensuing practices, particularly in relation to chronic and rare diseases. This also as a way to devise alternative approaches to the generally adopted double-blind gold standard.

Advances in neonatology have led to improved survival for periviable infants. Immaturity still carries a high risk of short- and long-term harms, and uncertainty turns provision of life support int...

The parents of some terminally ill children have reported that being asked to authorise removal of life-sustaining measures is akin to being requested to sign a “death warrant”. This dilemma leaves families not only enduring the grief of losing a loved one, but also with feelings of ambivalence, anxiety and guilt. A straightforward method by which the parents of terminally ill children can entrust the role of healthcare surrogate to the treating physician is presented. The cornerstone of this paradigm is (...) parental awareness that the physician will act in the child’s best interest, even if that means discontinuing life-sustaining measures. The goal is to mitigate parental guilt and fear of misperception, by self and others, of having given up on their child. From a moral standpoint this concept is an appealing option as it conforms to the four basic principles of medical ethics. While laws in the USA and several European nations prevent members of the medical team from taking on the responsibilities of healthcare surrogate for terminally ill patients, formal and informal precedence for this option already exists in France, The Netherlands, Norway, Sweden, Switzerland, and the Canadian province of Manitoba. (shrink)

The aim of this study was to explore neonatal nurses’and mothers of preterm infants’experiences of daily challenges. Interviews took place asking for good, bad and challenging experiences. Data were analysed using qualitative content analysis and findings were clustered in two categories: good and challenging experiences, each containing three themes. The good experiences were: managing with success as a nurse, small things matter for mothers, and a good day anyhow for mothers and nurses. The challenging experiences were: mothering in public, being (...) pulled between responsibilities, and adverse things stick under the nurses’skin. The study shows that small daily clinical matters become big issues and could lead to moral distress, and that nurses integrate ethics of justice and ethics of care while mothers are concerned about health and well-being of their specific infant only. The challenge for nursing to integrate fairness and sensitive care in family-oriented neonatal care is discussed. (shrink)

The purpose of this overview of published articles on decision making in paediatric care was to identify important aspects of its possible use in clinical practice and to obtain a base for future research. A literature review was undertaken utilizing snowball sampling to identify articles because of the diversity present within the area of decision making in paediatric care. The databases PubMed and CINAHL were used. The search was limited to articles published in English during the period 1994-2004. The analysis (...) entailed a series of comparisons across articles, focusing on major areas of enquiry and patterns of results. Various levels of decision making are described because these seem to form a basis for how decisions are made. Concepts found to be of importance for decision making are described under the following headings: competence, the child’s best interests, knowledge, values and attitudes, roles and partnership, power, and economy. Further research is suggested. (shrink)

In this paper, a personalist ethical perspective on end-of-life care of severely ill newborns is presented by posing two questions. (1) Is it ethically justified to decide not to start or to withdraw life-sustaining treatment in severely ill newborns? (2) Is it ethically justified, in exceptional cases, to actively terminate the life of severely ill newborns? Based on five values—respect for life and for the dignity of the human person, quality of life, respect for the process of dying, relational autonomy, (...) and justice—an ethical assessment is conducted that brings us answers to the two ethical questions. (1) Noninitiation or withdrawal of life-sustaining medical treatment in severely ill newborns is ethically acceptable, and might even be a moral duty, when initiation or continuation of medical treatment can be considered futile or even harmful. (2) However, according to the personalist approach, it is not ethically acceptable to actively terminate the life of a severely ill newborn. (shrink)

Ethical dilemmas in critical care may cause healthcare practitioners to experience moral distress: incoherence between what one believes to be best and what occurs. Given that paediatric decision-making typically involves parents, we propose that parents can also experience moral distress when faced with making value-laden decisions in the neonatal intensive care unit. We propose a new concept—that parents may experience “moral schism”—a genuine uncertainty regarding a value-based decision that is accompanied by emotional distress. Schism, unlike moral distress, is not caused (...) by barriers to making and executing a decision that is deemed to be best by the decision-makers but rather an encounter of significant internal struggle. We explore factors that appear to contribute to both moral distress and “moral schism” for parents: the degree of available support, a sense of coherence of the situation, and a sense of responsibility. We propose that moral schism is an underappreciated concept that needs to be explicated and may be more prevalent than moral distress when exploring decision-making experiences for parents. We also suggest actions of healthcare providers that may help minimize parental “moral schism” and moral distress. (shrink)

The aim of this study was to explore the ethical challenges in home mechanical ventilation based on a secondary analysis of qualitative empirical data. The data included perceptions of healthcare professionals in hospitals and community health services and family members of children and adults using home mechanical ventilation. The findings show that a number of ethical challenges, or dilemmas, arise at all levels in the course of treatment: deciding who should be offered home mechanical ventilation, respect for patient and family (...) wishes, quality of life, dignity and equal access to home mechanical ventilation. Other challenges were the impacts home mechanical ventilation had on the patient, the family, the healthcare services and the allocation of resources. A better and broader understanding of these issues is crucial in order to improve the quality of care for both patient and family and assist healthcare professionals involved in home mechanical ventilation to make decisions for the good of the patient and his or her family. (shrink)

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 child9s 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. (shrink)

We motivate the possibility of using notions and methods derived from quantum physics, and more specifically from the research field known as ‘quantum cognition’, to optimally model different situations in the field of medicine, its decision-making processes and ensuing practices, particularly in relation to chronic and rare diseases. This also as a way to devise alternative approaches to the generally adopted double-blind gold standard.