Struggling to do what is right for the child

Carnevale, Franco A.; Farrell, Catherine; Cremer, R.; Canouï, Pierre; Séguret, Sylvie; Gaudreault, Josée; Bérail, Brune de; Lacroix, Jacques; Leclerc, Francis; Hubert, Philippe

doi:10.1177/1367493511420184

Cited by 18 publications

(19 citation statements)

References 45 publications

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“…45,46 They considered aspects of social justice such as harms for other patients in cases of limited resources. However, these are considerations from the point of view of social ethics, while the medical indication refers to the individual patient.…”

Section: Discussionmentioning

confidence: 99%

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Medical indication regarding life-sustaining treatment for children: Focus groups with clinicians

Lotz

Jox²,

Meurer³

et al. 2016

Palliat Med

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Background:Decisions about medical indication are a relevant problem in pediatrics. Difficulties arise from the high prognostic uncertainty, the decisional incapacity of many children, the importance of the family, and conflicts with parents. The objectivity of judgments about medical indication has been questioned. Yet, little is known about the factors pediatricians actually include in their decisions.Aim:Our aims were to investigate which factors pediatricians apply in deciding about medical indication, and how they manage conflicts with parents.Design:We performed a qualitative focus group study with experienced pediatricians. The transcripts were subjected to qualitative content analysis.Setting/participants:We conducted three focus groups with pediatricians from different specialties caring for severely ill children/adolescents. They discussed life-sustaining treatment in two case scenarios that varied according to diagnosis, age, and gender.Results:The decisions about medical indication were based on considerations relating to the individual patient, to the family, and to other patients. Individual patient factors included clinical aspects and benefit–burden considerations. Physicians’ individual views and feelings influenced their decision-making. Different factors were applied or weighed differently in the two cases. In case of conflict with parents, physicians preferred solutions aimed at establishing consensus.Conclusion:The pediatricians defined medical indication on a case-by-case basis and were influenced by emotional reasoning. In contrast to prevailing ethico-legal principles, they included the interests of other persons in their decisions. Decision-making strategies should incorporate explicit discussions of social aspects and physicians’ feelings to improve the transparency of the decision-making process and reduce bias.

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Section: Discussionmentioning

confidence: 99%

“…5,45,48 In order to facilitate such discussions, pediatricians’ communication skills need to be improved by communication trainings and guides. 17 Adult approaches to communication in conflictual meetings with relatives could be adapted.…”

Section: Discussionmentioning

confidence: 99%

Medical indication regarding life-sustaining treatment for children: Focus groups with clinicians

Lotz

Jox²,

Meurer³

et al. 2016

Palliat Med

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“…Introducing the option for withdrawal of LST outside the IC setting requires IC and PPC staff to balance the potential extension of a child's suffering with the need to compassionately provide parents with complex information,22 32 33 to enable informed contribution to decision making. PICU's report wide variations in timelines for end-of-life decision making 10.…”

Section: Discussionmentioning

confidence: 99%

Withdrawal of ventilatory support outside the intensive care unit: guidance for practice

Laddie

Craig

Brierley

et al. 2014

Archives of Disease in Childhood

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ObjectiveTo review the work of one tertiary paediatric palliative care service in facilitating planned withdrawal of ventilatory support outside the intensive care setting, with the purpose of developing local guidance for practice.MethodsRetrospective 10-year (2003–2012) case note review of intensive care patients whose parents elected to withdraw ventilation in another setting. Demographic and clinical data revealed common themes and specific incidents relevant to local guideline development.Results18 children (aged 2 weeks to 16 years) were considered. Three died prior to transfer. Transfer locations included home (5), hospice (8) and other (2). Primary pathologies included malignant, neurological, renal and respiratory diseases. Collaborative working was evidenced in the review including multidisciplinary team meetings with the palliative care team prior to discharge. Planning included development of symptom management plans and emergency care plans in the event of longer than anticipated survival. Transfer of children and management of extubations demonstrated the benefits of planning and recognition that unexpected events occur despite detailed planning. We identified the need for local written guidance supporting healthcare professionals planning and undertaking extubation outside the intensive care setting, addressing the following phases: (i) introduction of withdrawal, (ii) preparation pretransfer, (iii) extubation, (iv) care postextubation and (v) care postdeath.ConclusionsPlanned withdrawal of ventilatory support outside the intensive care setting is challenging and resource intensive. The development of local collaborations and guidance can enable parents of children dependent on intensive care to consider a preferred place of death for their child, which may be outside the intensive care unit.

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“…The use of this concept involves the premise that any decision involving the health of the child should be the one in which the benefits to the child outweigh the potential harm and in which the focus is on the child and his or her well-being rather than that of the family or guardians. ( 15 , 16 ) The lack of homogeneity for the definition of what the "best interests" of the child are, in fact, is a limiting factor for its use in clinical practice. This occurs because a convergence of beliefs and values between the team, family and child is not always possible.…”

Section: Introductionmentioning

confidence: 99%

“…This occurs because a convergence of beliefs and values between the team, family and child is not always possible. ( 16 ) In addition, difficulties in the physician-nurse relationship, professionals' concerns about how to consider the child's voice in the decision-making process and fears of making mistakes, in addition to the need to take care of the family as a whole, add to the complications in this matter. ( 15 , 16 ) In this type of situation, feelings of doubt about the correct conduct can result in moral distress for professionals.…”

Section: Introductionmentioning

confidence: 99%

Difficult decisions in pediatric practice and moral distress in the intensive care unit

Santos¹,

Garros²,

Carnevale³

2018

Revista Brasileira De Terapia Intensiva

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In an ethical dilemma, there is always an option that can be identified as the best one to be chosen. When it is impossible to adopt such option, the situation can lead professionals to experience moral distress. This review aims to define the issue of moral distress and propose coping strategies. Systematic searches in the MEDLINE/PubMed and SciELO databases were conducted using the keywords "moral distress" and "moral suffering" in articles published between 2000 and 2017. This review was non-exhaustive and contextual, with a focus on definitions, etiologies and methods of resolution for moral distress. In the daily practice of intensive care, moral distress was commonly related to the prolongation of patients' suffering and feelings of helplessness, as well as difficulties in communication among team members. Coping strategies for moral distress included organizational, personal and administrative actions. Actions such as workload management, mutual support among professionals and the development of techniques to cultivate open communication, reflection and questioning within the multidisciplinary team were identified. In clinical practice, health professionals need to be recognized as moral agents, and the development of moral courage was considered helpful to overcome ethical dilemmas and interprofessional conflicts. Both in pediatric and adult intensive care, professionals are challenged by questions about their practice, and they may experience moral distress. This suffering can be minimized and solved by understanding that the focus is always on the patient and acting with moral courage and good communication in an environment of mutual respect.

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Struggling to do what is right for the child

Cited by 18 publications

References 45 publications

Medical indication regarding life-sustaining treatment for children: Focus groups with clinicians

Medical indication regarding life-sustaining treatment for children: Focus groups with clinicians

Withdrawal of ventilatory support outside the intensive care unit: guidance for practice

Difficult decisions in pediatric practice and moral distress in the intensive care unit

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