Michael van Manen

Early childhood outcomes of infants born with gastroschisis

PURPOSE To describe neonatal and childhood outcomes of a contemporary cohort of infants with gastroschisis. METHODS Observational, single center, inception cohort of children born with gastroschisis from January 2005 to December 2008. RESULTS Of 63 infants, 61 survived to hospital discharge and 39 were seen for follow-up. Complications included sepsis (37%), necrotizing enterocolitis (10%), parenteral nutrition related cholestasis (25%), and short bowel syndrome (13%). Of survivors, 5% had visual impairment and 10% had hearing loss. No child tested had mental delay or cerebral palsy. Early gestational age predicted death or disability (OR 0.60, 95% CI 0.38, 0.96; p=0.033). There was a high incidence of prescription medications for presumed gastroesophageal reflux (90%). Some infants continued to require tube feeds (15%). There were improvements in longitudinal growth reflected in increasing z-scores. CONCLUSIONS Although children with gastroschisis are at risk for disability, childhood outcomes are encouraging.

On Ethical (In)Decisions Experienced by Parents of Infants in Neonatal Intensive Care

This study was a phenomenological investigation of ethical decisions experienced by parents of newborns in neonatal intensive care. I explore the lived meanings of thematic events that speak to the variable ways that ethical situations may be experienced: a decision that was never a choice; a decision as looking for a way out; a decision as thinking and feeling oneself through the consequences; a decision as indecision; and a decision as something that one falls into. The concluding recommendations spell out the need for understanding the experiences of parents whose children require medical care and underscore the tactful sensitivities required of the health care team during moral–ethical decision making.This study was a phenomenological investigation of ethical decisions experienced by parents of newborns in neonatal intensive care. I explore the lived meanings of thematic events that speak to the variable ways that ethical situations may be experienced: a decision that was never a choice; a decision as looking for a way out; a decision as thinking and feeling oneself through the consequences; a decision as indecision; and a decision as something that one falls into. The concluding recommendations spell out the need for understanding the experiences of parents whose children require medical care and underscore the tactful sensitivities required of the health care team during moral-ethical decision making.

A descriptive report of end-of-life care practices occurring in two neonatal intensive care units

Background: In Canada and other developed countries, the majority of neonatal deaths occur in tertiary neonatal intensive care units. Most deaths occur following the withdrawal of life-sustaining treatments. Aim: To explore neonatal death events and end-of-life care practices in two tertiary neonatal intensive care settings. Design: A structured, retrospective, cohort study. Setting/participants: All infants who died under tertiary neonatal intensive care from January 2009 to December 2013 in a regional Canadian neonatal program. Deaths occurring outside the neonatal intensive care unit in delivery rooms, hospital wards, or family homes were not included. Overall, 227 infant deaths were identified. Results: The most common reasons for admission included prematurity (53.7%), prematurity with congenital anomaly/syndrome (20.3%), term congenital anomaly (11.5%), and hypoxic ischemic encephalopathy (12.3%). The median age at death was 7 days. Death tended to follow a decision to withdraw life-sustaining treatment with anticipated poor developmental outcome or perceived quality of life, or in the context of a moribund dying infant. Time to death after withdrawal of life-sustaining treatment was uncommonly a protracted event but did vary widely. Most dying infants were held by family members in the neonatal intensive care unit or in a parent room off cardiorespiratory monitors. Analgesic and sedative medications were variably given and not associated with a hastening of death. Conclusion: Variability exists in end-of-life care practices such as provision of analgesic and sedative medications. Other practices such as discontinuation of cardiorespiratory monitors and use of parent rooms are more uniform. More research is needed to understand variation in neonatal end-of-life care.

Canadian Guidelines for Controlled Pediatric Donation After Circulatory Determination of Death—summary Report*

Objectives: Create trustworthy, rigorous, national clinical practice guidelines for the practice of pediatric donation after circulatory determination of death in Canada. Methods: We followed a process of clinical practice guideline development based on World Health Organization and Canadian Medical Association methods. This included application of Grading of Recommendations Assessment, Development, and Evaluation methodology. Questions requiring recommendations were generated based on 1) 2006 Canadian donation after circulatory determination of death guidelines (not pediatric specific), 2) a multidisciplinary symposium of national and international pediatric donation after circulatory determination of death leaders, and 3) a scoping review of the pediatric donation after circulatory determination of death literature. Input from these sources drove drafting of actionable questions and Good Practice Statements, as defined by the Grading of Recommendations Assessment, Development, and Evaluation group. We performed additional literature reviews for all actionable questions. Evidence was assessed for quality using Grading of Recommendations Assessment, Development, and Evaluation and then formulated into evidence profiles that informed recommendations through the evidence-to-decision framework. Recommendations were revised through consensus among members of seven topic-specific working groups and finalized during meetings of working group leads and the planning committee. External review was provided by pediatric, critical care, and critical care nursing professional societies and patient partners. Results: We generated 63 Good Practice Statements and seven Grading of Recommendations Assessment, Development, and Evaluation recommendations covering 1) ethics, consent, and withdrawal of life-sustaining therapy, 2) eligibility, 3) withdrawal of life-sustaining therapy practices, 4) ante and postmortem interventions, 5) death determination, 6) neonatal pediatric donation after circulatory determination of death, 7) cardiac and innovative pediatric donation after circulatory determination of death, and 8) implementation. For brevity, 48 Good Practice Statement and truncated justification are included in this summary report. The remaining recommendations, detailed methodology, full Grading of Recommendations Assessment, Development, and Evaluation tables, and expanded justifications are available in the full text report. Conclusions: This process showed that rigorous, transparent clinical practice guideline development is possible in the domain of pediatric deceased donation. Application of these recommendations will increase access to pediatric donation after circulatory determination of death across Canada and may serve as a model for future clinical practice guideline development in deceased donation.

Policy Change for Infants Born at the “Cusp of Viability”: A Canadian NICU Experience

Resuscitation and life-support treatments for infants born at the “cusp of viability” continue to be subject to clinical and ethical debate. Reported positive outcomes for these infants led our Neonatal Program to critically review our historic practice of discouraging resuscitation of infants born at <24 weeks’ gestational age. This practice change required a multifaceted, collaborative approach including neonatal, perinatal, and obstetric efforts. An exceptional experience was the formation of a dedicated working group that included invaluable input from parents who had lived the NICU experience. The inclusion of family members in the development of clinical policy was a novel experience for NICU staff, which we feel ultimately resulted in a more ethically sound approach to the care of these infants and their families. In this article, we explore our experience of the process of policy change, which although detailed and transparent was also complex and challenging in development and implementation.

Use of Paralysis in Silo-Assisted Closure of Gastroschisis

OBJECTIVE To examine the association between pre-closure neuromuscular paralysis and time to final surgical closure for infants with gastroschisis undergoing silo reduction. STUDY DESIGN This study was an exploratory review of observational variables obtained from the Canadian Pediatric Surgery Network database. The focus was on the subset of infants with gastroschisis undergoing silo reduction between May 2005 and March 2009. Of the 186 infants, paralysis use could be ascertained for 167 infants (79 received pre-closure paralysis and 88 received none). Groups were compared by using statistical tests, with relationships explored using regression analysis. RESULTS Infants receiving paralysis took longer to achieve closure by an average of 3 days (8 versus 5 days; P < .001) and had greater mean number of ventilation days (12 versus 7 days; P < .001). The relationship between paralysis and days to closure remained after adjusting for other variables. CONCLUSIONS In infants with gastroschisis undergoing silo reduction, use of paralysis was associated with longer time to closure. Pre-closure paralysis should be carefully weighed in this population.

The Ethics of an Ordinary Medical Technology

Some routinely applied hospital technologies may have unintended consequences for patients and their families. The neonatal cardiorespiratory monitor, a computer-like display used to show an infants vital functions, is one such technology that may become part of a parents day-to-day being with his or her hospitalized child. In this phenomenological study, I explored how the monitor may mediate parental sensibilities, reshaping the contact of parent and child. This exploration speaks to understanding the relational ethics of even the seemingly most ordinary of medical technologies in clinical contexts.Some routinely applied hospital technologies may have unintended consequences for patients and their families. The neonatal cardiorespiratory monitor, a computer-like display used to show an infant’s vital functions, is one such technology that may become part of a parent’s day-to-day being with his or her hospitalized child. In this phenomenological study, I explored how the monitor may mediate parental sensibilities, reshaping the contact of parent and child. This exploration speaks to understanding the relational ethics of even the seemingly most ordinary of medical technologies in clinical contexts.

The Ventricular Assist Device in the Life of the Child: A Phenomenological Pediatric Study

What is it like for a child to live with an artificial heart? The use of some medical therapies in children requires developmental considerations, is associated with psychosocial consequences, and calls for ethical sensitivities. A critical case is the ventricular assist device (VAD), a mechanical pump used to support the functioning of a failing heart. As a pediatric therapy, the device can be used as a temporary solution for poor heart function, a bridge to transplantation or recovery, or as a destination therapy. While the mechanical-technical operation of the VAD is well understood, the clinical-technical aspects of young people living with this device are largely unexplored. Drawing on interviews of school-aged children, the aim of this phenomenological study is to explore how a VAD may structure or condition a child’s meaningful experience of their world outside the hospital. The driveline of an implanted VAD is the peripheral attachment, extruding through the skin to connect the controller-power su...What is it like for a child to live with an artificial heart? The use of some medical therapies in children requires developmental considerations, is associated with psychosocial consequences, and calls for ethical sensitivities. A critical case is the ventricular assist device (VAD), a mechanical pump used to support the functioning of a failing heart. As a pediatric therapy, the device can be used as a temporary solution for poor heart function, a bridge to transplantation or recovery, or as a destination therapy. While the mechanical-technical operation of the VAD is well understood, the clinical-technical aspects of young people living with this device are largely unexplored. Drawing on interviews of school-aged children, the aim of this phenomenological study is to explore how a VAD may structure or condition a child’s meaningful experience of their world outside the hospital. The driveline of an implanted VAD is the peripheral attachment, extruding through the skin to connect the controller-power supply. The materiality of the device may be interruptive, restrictive, and disturbing to the psycho-physical being and sense of self-identity of the child as a child. And while a child equipped with a VAD is not necessarily conspicuous among other children, the child may experience the device as an exposing presence, while living with the worry of a caregiver who takes on the role not simply of parent but of watchful health professional. A phenomenological understanding of the VAD should assist parents and caregiving health professionals knowing how to deal with specific issues arising in the life of the VAD child.

Technics of touch in the neonatal intensive care

Medical technologies, although often crucial for the provision of healthcare, may carry unintended significance for patients and their families. The highly technicised neonatal intensive care unit (NICU) is the place where parents of hospitalised baby have their early encounters with their child. The aim of this study is to investigate phenomenologically how the contact and relation between parent and child may be affected by the mediating presence and use of the techno-medical features and equipments of the NICU. Three common technologies are examined for the ways they condition the kinds of contact afforded between parents and child: the isolette, the feeding tube and the brain imaging equipment. The concluding recommendations speak of the need for understanding the relational experiences of parents of hospitalised babies, and the tactful sensitivities required of the healthcare teams who provide care to these families.

Teaching Phenomenological Research and Writing

In this article, we describe our approach and philosophical methodology of teaching and doing phenomenology. The human science seminar that we offer involves participants in the primary phenomenological literature as well as in a variety of carefully engaged writing exercises. Each seminar participant selects a personal phenomenological project that aims at producing a publishable research paper. We show how the qualitative methodology of hermeneutic phenomenology requires of its practitioner a sensitivity and attitudinal disposition that has to be internalized and that cannot be captured in a procedural or step-by-step program. Our experience is that seminar participants become highly motivated and committed to their phenomenological project while involved in the rather intense progression of lectures, workshop activities, readings, and discussions.