Background: The parent of a child with profound cognitive disability will have complex decisions to consider throughout the life of their child. An especially complex decision is whether to place a tracheotomy to support the child’s airway. The decision may involve the parent wanting a tracheotomy and the clinician advising against this intervention or the clinician recommending a tracheotomy while the parent is opposed to the intervention. This conflict over what is best for the child may lead to a bioethics (...) consult. Objective: The study explores the conflicts that may arise around tracheotomy placements. Research design: This study is a retrospective cohort study of pediatric patients for whom a tracheotomy decision required a bioethics consult. Participants and research context: Pediatric patients aged birth to 18 years old with a bioethics consult for a tracheotomy decision conflict between April 2010 and December 2016. A standardized data collection tool was used to review notes entered by the palliative care team, social workers, primary clinical team interim summaries, and the bioethics consult service. Ethical considerations: The study was reviewed and approved by the medical center’s institutional review board. Results: There were 248 clinical bioethics consults during the identified study period. There were 31 consults involving 21 children where the word tracheotomy was mentioned in the consult, and 13 of the 21 consults were for children with profound cognitive disability. Discussion and conclusion: Clinicians need to be aware of their own biases when discussing a child’s prognosis and treatment options while also understanding the parents’ values and what the parent might consider to be burdensome in the care of their child and the acceptable burden for the child to experience. (shrink)

The Truth and Reconciliation Commission of Canada made it clear that understanding the historical, social, cultural, and political landscape that shapes the relationships between Indigenous peoples and social institutions, including the health care system, is crucial to achieving social justice. How to translate this recognition into more equitable health policy and practice remains a challenge. In particular, there is limited understanding of ways to respond to situations in which conventional practices mandated by the state and regulated by its legal apparatus (...) come into direct conflict with the values and autonomy of Indigenous individuals, communities, and nations. In this paper, we consider two cases of conflict between Indigenous and biomedical perspectives to clarify some of the competing values. We argue for the importance of person‐ and people‐centered approaches to health care. These value conflicts must be understood at multiple levels to clarify their personal, social, cultural, and political dimensions. Taking into account the divergence between epistemic cultures and communities allows us to understand the multiple narratives deployed in decision‐making processes in clinical, community, and juridical contexts. Recognizing the knowledge claims of Indigenous peoples in health care can help clinicians avoid reinforcing the divides created by the structural and institutional legacy of colonialism. This analysis also provides ways to adjudicate conflicts in health care decision‐making by disentangling cultural, political, medical, and pragmatic issues to allow for respectful dialogue. Insofar as the engagement with cultural pluralism in health care rights is conducted with reciprocal recognition, the medical community and Indigenous peoples can address together the difficult question of how to integrate different epistemic cultures in the health care system. (shrink)

Volume 20, Issue 8, August 2020, Page 38-40.

Prader-Willi syndrome (PWS) is one of the 25 syndromic forms of obesity, in which patients present—in addition to different degrees of obesity—intellectual disability, endocrine disturbs, hyperphagia and/or other signs of hypothalamic dysfunction. In front of a severe/extreme obesity and the failure of non-invasive treatments, bariatric surgery is proposed as a therapeutic option. The complexity of the clinical condition, which could affect the long-term effects of bariatric surgery, and the frequent association with a mild to severe intellectual disability raise some ethical (...) concerns in the treatment of obese PWS adolescents. This article analyses these issues referring to the principles of healthcare ethics: beneficence/non-maleficence (proportionality of treatments; minimisation of risks); respect of autonomy; justice. Based on these principles, three hypothetical scenarios are defined: (1) obese PWS adolescent, capable of making an autonomous decision; (2) obese PWS adolescent with a severe intellectual disability, whose parents agree with bariatric surgery; (3) obese PWS adolescent with a life-threatening condition and a severe intellectual disability, whose parents do not agree with bariatric surgery. The currently available evidence on efficacy and safety of bariatric surgery in PWS adolescents with extreme or severe obesity and the lack of adequate long-term follow-up suggests great caution even in a very life-threatening condition. Clinicians must always obtain a full IQ assessment of patients by psychologists. A multidisciplinary team is needed to analyse the clinical, psychological, social and ethical aspects and organise support for patient and parents, involving also the hospital ethical committee or, if necessary, legal authorities. (shrink)

Background Best interests is a ubiquitous principle in medical policy and practice, informing the treatment of both children and adults. Yet theory underlying the concept of best interests is unclear and rarely articulated. This paper examines bioethical literature for theoretical accounts of best interests to gain a better sense of the meanings and underlying philosophy that structure understandings. Methods A scoping review of was undertaken. Following a literature search, 57 sources were selected and analysed using the thematic method. Results Three (...) themes emerged. The first placed best interests within the structure of wider theory, noting relationships with consequentialism, deontology, prudential value theory, rights and political philosophy. The second mapped a typology of processes of decision-making, among which best interests was ambiguously positioned. It further indicated factors that informed best interests decision-making, primarily preferences, dignity and quality of life. The final theme considered best interests from a relational perspective. Conclusions Characterisation of best interests as strictly paternalist and consequentialist is questionable: while accounts often suggested a consequentialist basis for best interests, arguments appeared philosophically weak. Deontological accounts, found in law and Kantianism, and theories of political liberalism influenced accounts of best interests, with accounts often associating best interests with negative patient preferences (i.e. individual refusals). There was much more emphasis on negative interests than positive interests. Besides preference, factors like dignity and quality of life were held to inform best interests decisions, but generally were weakly defined. To the extent that preferences were unable to inform decision making, decisions were either made by proxy authority or by an intersubjective process of diffuse authority. Differing approaches reflect bifurcations in liberal philosophy between new liberalism and neo-liberalism. Although neither account of authority appears dominant, bias to negative interests suggests that bioethical debate tends to reflect the widespread ascendancy of neo-liberalism. This attitude was underscored by the way relational accounts converged on private familial authority. The visible connections to theory suggest that best interests is underpinned by socio-political trends that may set up frictions with practice. How practice negotiates these frictions remains a key question. (shrink)

Families and clinicians approaching a child’s death in the paediatric intensive care unit (PICU) frequently encounter questions surrounding medical decision-making at the end of life (EOL), including defining what is in the child’s best interest, finding an optimal balance of benefit over harm, and sometimes addressing potential futility and moral distress. The best interest standard (BIS) is often marshalled by clinicians to help navigate these dilemmas and focuses on a clinician’s primary ethical duty to the paediatric patient. This approach does (...) not consider a clinician’s potential duty to the patient’s family. This paper argues that when a child is dying in the PICU, the physician has a duty to serve both the patient and the family, and that in some circumstances, the duty to serve the family becomes as important as that owed to the child. We detail the limitations of the BIS in paediatric EOL care and propose the relational potential standard as an additional ethical framework to guide our decisions. (shrink)

Zusammenfassung Behandlungsentscheidungen bei Frühgeburten an der Grenze der Lebensfähigkeit stellen eine große Herausforderung dar. In der Neonatologie hat sich das Konzept einer prognostischen Grauzone etabliert, die als ein Grenzbereich verstanden wird, in dem sich aus medizinischer Sicht die Nutzen-Risiko-Abwägung aufgrund der unsicheren Prognose sehr schwierig gestaltet und sich aus ethischer Sicht sowohl eine kurative als auch eine palliative Versorgung prinzipiell rechtfertigen lassen. Innerhalb der Grauzone wird zumeist eine gemeinsame Entscheidungsfindung mit den Eltern in Form eines „shared-decision making“ (SDM) favorisiert, die (...) sich an dem besten Interesse des Neugeborenen orientieren soll. Allerdings findet sich kein Konsens dazu, wie diese Anforderungen umzusetzen sind. Im vorliegenden Beitrag werden unter Einbeziehung der empirischen Studienlage ethische Anforderungen an die Umsetzung des SDM formuliert. Es wird gezeigt, dass Eltern bzw. Schwangere unterschiedliche Präferenzen hinsichtlich der Art ihrer Einbindung haben. Hieraus ergibt sich aus ethischer Sicht die Anforderung, im Rahmen des SDM gemeinsam herauszuarbeiten, welche Rolle sie bei der Entscheidungsfindung einnehmen wollen und welche Präferenzen und Werte für sie bei der Therapieentscheidung von Relevanz sind. Zudem wird in unserer Untersuchung auf die Frage eingegangen, inwiefern die zu erwartende Lebensqualität der Kinder in die Bestimmung des besten Interesses der Neugeborenen einbezogen werden kann. Es wird gezeigt, dass in der prognostischen Grauzone neben den Präferenzen der Eltern bzw. Schwangeren gegenwärtig kaum Kriterien zur inhaltlichen Bestimmung des besten Interesses des Neugeborenen zur Verfügung stehen – ein wesentlicher Grund, der aus ethischer Sicht für die Implementierung des skizzierten Modells des SDM spricht. (shrink)

In 2014, Article 3 of the the Belgian Euthanasia Act (2002) (the Euthanasia Act) was amended (‘the Amendment’) to include the ‘capacity for discernment’ requirement. This paper explores the implications of this highly controversial Amendment. I remain unconvinced of the benefits for children < 12 years old suffering chronic or terminal illnesses. In Part One, I argue that the phrase ‘capacity for discernment’ is problematic and vulnerable to abuse; neither a consistent, widely accepted definition of the phrase has been established (...) nor a standardised method or procedure to adequately gauge a minor’s capacity for discernment. In Part Two I advance the argument that specifically for children < 12 years, aggressive and sophisticated paediatric palliative care treatment, which risks, but does not intend death, is more ethically justified than Euthanasia treatment. A definition of a child’s interests is best achieved through a care-based ethics framework; namely, the child’s relationship with their parents and family members, their doctors and medical practitioners is held to be an interest of crucial importance for the child. I conclude that paediatric palliative care arguably better promotes and upholds this interest. (shrink)

Malm and Navin (2020) argue that it is wrong to withhold varicella vaccine from children to let wild virus circulate purely to prevent zoster in older adults. They demonstrate how this practice acc...

People are using innovative internet of things technologies to gain individualised management of their type 1 diabetes. The #WeAreNotWaiting movement supports them to build their own hybrid closed loop systems and access their real time blood sugar data via any web connected device. A small number of parents in Australia use such DIY looping systems to manage their child’s type 1 diabetes, but these systems have not been approved by the Therapeutic Goods Administration in Australia, creating ethical dilemmas for clinicians (...) about how to respond to the use of medical devices that are not registered on the Australian Register of Therapeutic Goods. This article considers whether the use of DIY looping is in the best interests of the child and, if not, whether intervention in parental decision making is justified to prevent harm to the child. It addresses the ongoing duty of healthcare professionals to provide care to children who are ‘looping.’ Reference is made to findings from a study, Personalised Closed Loop Systems for Childhood Diabetes, to illustrate stakeholders’ perceptions of benefits and harms of DIY looping systems. I conclude that the decision of parents to use DIY looping technology could be considered to be in a child’s best interests, broadly defined, and falls within the Zone of Parental Discretion, however healthcare practitioners who support parents may have professional concerns in doing so. (shrink)

Although rapid genomic sequencing (RGS) is improving care for critically ill children with rare disease, it also raises important ethical questions that need to be explored as its use becomes more widespread. Two such questions relate to the degree of consent that should be required for RGS to proceed and whether it might ever be appropriate to override parents’ decisions not to allow RGS to be performed in their critically ill child. To explore these questions, we first examine the legal (...) frameworks on securing consent for genomic sequencing and how they apply to the specific context of RGS for critically ill children. We then use a tool from clinical ethics, the Zone of Parental Discretion, to explore two case studies and identify under which circumstances it might be appropriate for parental refusal of RGS to be overridden. We argue that RGS may be a context where, in addition to assessing the complexity of the test offered, it is ethically appropriate to consider an effect on patient outcomes when deciding the degree of consent required. We also suggest that there are some contexts where it may be ethically justified to perform RGS, even when it is actively against the wishes of the parents. More work is needed to examine exactly how ‘time-sensitive’ exceptions to current guidance on consent for genomic sequencing could be formulated and operationalised for RGS for critically ill-children. (shrink)

The Internet has vastly expanded the opportunity for patients and families to share their medical narratives with the general public. Yet blogs and social media posts can also prove a source of con...

Background There is considerable variation in the functionality of bioethical services in different institutions and countries for children in hospital, despite new challenges due to increasing technology supports for children with serious illness and medical complexity. We aimed to understand how bioethics services address bioethical concerns that are increasingly encountered in paediatric intensive care. Methods A qualitative descriptive design was used to describe clinician’s perspectives on the functionality of clinical bioethics services for paediatric intensive care units. Clinicians who were members (...) of formal or informal clinical bioethics groups, or who were closely involved with the process of working through ethically challenging decisions, were interviewed. Interviews took place online. Resulting transcripts were analysed using thematic analysis. Results From 33 interviews, we identified four themes that described the functionality of bioethics services when a child requires technology to sustain life: striving for consensus; the importance of guidelines; a structure that facilitates a time-sensitive and relevant response; and strong leadership and teamwork. Conclusions Clinical bioethics services have the potential to expand their role due to the challenges brought by advancing medical technology and the increasing options it brings for treatment. Further work is needed to identify where and how bioethics services can evolve and adapt to fully address the needs of the decision-makers in PICU. (shrink)

BackgroundClinical ethics case consultations (CECCs) provide a structured approach in situations of ethical uncertainty or conflicts. There have been increasing calls in recent years to assess the quality of CECCs by means of empirical research. This study provides detailed data of a descriptive quantitative and qualitative evaluation of a CECC service in a department of cardiology and intensive care at a German university hospital.MethodsSemi-structured document analysis of CECCs was conducted in the period of November 1, 2018, to May 31, 2020. (...) All documents were analysed by two researchers independently.ResultsTwenty-four CECCs were requested within the study period, of which most (n = 22; 92%) had been initiated by physicians of the department. The patients were an average of 79 years old (R: 43–96), and 14 (58%) patients were female. The median length of stay prior to request was 12.5 days (R: 1–65 days). The most frequent diagnoses (several diagnoses possible) were cardiology-related (n = 29), followed by sepsis (n = 11) and cancer (n = 6). Twenty patients lacked decisional capacity. The main reason for a CECC request was uncertainty about the balancing of potential benefit and harm related to the medically indicated treatment (n = 18). Further reasons included differing views regarding the best individual treatment option between health professionals and patients (n = 3) or between different team members (n = 3). Consensus between participants could be reached in 18 (75%) consultations. The implementation of a disease specific treatment intervention was recommended in five cases. Palliative care and limitation of further disease specific interventions was recommended in 12 cases.ConclusionsTo the best of our knowledge, this is the first in-depth evaluation of a CECC service set up for an academic department of cardiology and intensive medical care. Patient characteristics and the issues deliberated during CECC provide a starting point for the development and testing of more tailored clinical ethics support services and research on CECC outcomes. (shrink)