Navigating the Dangerous Terrain of Moral Distress: Understanding Response Patterns in the NICU

Thorne, Sally; Konikoff, Laura; Brown, Helen; Albersheim, Susan

doi:10.1177/1049732317753585

Cited by 40 publications

(45 citation statements)

References 78 publications

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“…While it is accepted that moral distress is ubiquitous for those who work in healthcare, the true prevalence in the NICU is not well-established (12). Some historical challenges in assessing the prevalence include a focus in the literature on parental moral distress and adult patients, multiple definitions of moral distress, and an emphasis on the nursing profession (13,14).…”

Section: The Scope Of the Problemmentioning

confidence: 99%

Moral Distress in the Neonatal Intensive Care Unit: What Is It, Why It Happens, and How We Can Address It

Mills

Cortezzo

2020

Front. Pediatr.

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Moral distress is prevalent in the neonatal intensive care unit (NICU), where decisions regarding end-of-life care, periviable resuscitation, and medical futility are common. Due to its origins in the nursing literature, moral distress has primarily been reported among bedside nurses in relation to the hierarchy of the medical team. However, it is increasingly recognized that moral distress may exist in different forms than initially described and that healthcare professions outside of nursing experience it. Advances in medical technology have allowed the smallest, sickest neonates to survive. The treatment for critically ill infants is no longer simply limited by the capability of medical technology but also by moral and ethical boundaries of what is right for a given child and family. Shared decision-making and the zone of parental discretion can inform and challenge the medical team to balance the complexities of patient autonomy against harm and suffering. Limited ability to prognosticate and uncertainty in outcomes add to the challenges faced with ethical dilemmas. While this does not necessarily equate to moral distress, subjective views of quality of life and personal values in these situations can lead to moral distress if the plans of care and the validity of each path are not fully explored. Differences in opinions and approaches between members of the medical team can strain relationships and affect each individual differently. It is unclear how the various types of moral distress uniquely impact each profession and their role in the distinctively challenging decisions made in the NICU environment. The purpose of this review is to describe moral distress and the situations that give rise to it in the NICU, ways in which various members of the medical team experience it, how it impacts care delivery, and approaches to address it.

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Section: The Scope Of the Problemmentioning

confidence: 99%

Moral Distress in the Neonatal Intensive Care Unit: What Is It, Why It Happens, and How We Can Address It

Mills

Cortezzo

2020

Front. Pediatr.

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“…Improvements in survival of premature infants, based on a better understanding of pathophysiology and the equipment to treat these babies, again raised concerns related to neurodevelopmental outcomes (4), which resulted in discussions of whether we ought to treat infants who are anticipated to have NDI. 2 Previously we could not treat these premature infants, and could only pity them (5). In the early years of neonatology it was not uncommon if there were concerns of NDI that ventilators were discontinued, resulting in death of the baby.…”

Section: Introductionmentioning

confidence: 99%

“…(1) Moral distress has commonly been appreciated as the discomfiture associated with knowing the right thing to do but not being able to follow this course of action (2). 2 Although the language of treating versus not treating neonates was previously commonplace, today we refer to treatment with intensive care or treatment with palliative or comfort care. 3 In fact, the Baby Doe rules only referred to federal funding requirements for states to receive grants (7).…”

Section: Introductionmentioning

confidence: 99%

The Extremely Preterm Infant: Ethical Considerations in Life-and-Death Decision-Making

Albersheim

2020

Front. Pediatr.

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Care of the preterm infant has improved tremendously over the last 60 years, with attendant improvement in outcomes. For the extremely preterm infant, <28 weeks' gestation, concerns related to survival as well as neurodevelopmental impairment, have influenced decision-making to a much larger extent than seen in older children. Possible reasons for conferring a different status on extremely preterm infants include: (1) the belief that the brain is a privileged organ, (2) the degree of medical uncertainty in terms of outcomes, (3) the fact that the family will deal with the psychological, emotional, physical, and financial consequences of treatment decisions, (4) that the extremely preterm looks more like a fetus than a term newborn, (5) the initial lack of relational identity, (6) the fact that extremely preterm infants are technology-dependent, and (7) the timing of decision-making around delivery. Treating extremely preterm infants differently does not hold up to scrutiny. They are owed the same respect as other pediatric patients, in terms of personhood, and we have the same duties to care for them. However, the degree of medical uncertainty and the fact that parents will deal with the consequences of decision-making, highlights the importance of providing a wide band of discretion in parental decision-making authority. Ethical principles considered in decision-making include best interest (historically the sine qua non of pediatric decision-making), a reasonable person standard, the "good enough" parent, and the harm principle, the latter two being more pragmatic. To operationalize these principles, potential models for decision-making are the Zone of Parental Discretion, the Not Unreasonable Standard, and a Shared Decision-Making model. In the final analysis shared decision-making with a wide zone of parental discretion, which is based on the harm principle, would provide fair and equitable decision-making for the extremely preterm infant. However, in the rare circumstance where parents do not wish to embark upon intensive care, against medical recommendations, it would be most helpful to develop local guidelines both for support of health care practitioners and to provide consistency of care for extremely preterm infants.

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“…Thirdly, putting harm into words helps to uncover the pain involved in the moral dilemmaboth the pain experienced by patients and their loved ones, and agonising decisions that must be made by health professionals. This is reminiscent of 'moral injury' [34,35] and 'moral distress' [36][37][38]. Moral injury 'is present when (1) there has been a betrayal of what is morally right, (2) by someone who holds legitimate authority (in the military a leader) and (3) in a high-stakes situation' [39,40].…”

Section: Discussionmentioning

confidence: 99%

“…[41,42]. Harm in case of moral distress is addressed by Thorne et al They state: 'The ambiguity and complexity of many NICU cases mean that clinicians may inevitably be left, regardless of the professionalism of their actions, feeling that they may not have done enough, other options could have been followed, errors may have been made' [37]. According to Thorne et al, a particularly effective way of combating moral distress in the NICU is to target the structural and cultural elements that cause it.…”

Section: Discussionmentioning

confidence: 99%

Addressing harm in moral case deliberation: the views and experiences of facilitators

2020

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Background: In healthcare practice, care providers are confronted with decisions they have to make, directly affecting patients and inevitably harmful. These decisions are tragic by nature. This study investigates the role of Moral Case Deliberation (MCD) in dealing with tragic situations. In MCD, caregivers reflect on real-life dilemmas, involving a choice between two ethical claims, both resulting in moral damage and harm. One element of the reflection process is making explicit the harm involved in the choice. How harmful are our decisions? We investigated how facilitators of MCD experience the importance of addressing harm in MCD and what participants learn from reflecting on harm. Methods: The study was qualitative, focusing on the views and experiences of the facilitators of MCD. Semi-structured interviews (N = 12) were conducted with facilitators of MCD. The research focuses on the subjective experiences of facilitators. Grounded Theory was used for analysis. Results: The results show two main categories. The first concerns the awareness of tragedy. Within this category, five themes were discerned: making explicit that there is no solution, visualizing consequences, uncovering pain, focusing on emotion, and exploring perspectives on harm. The second category concerns the support for healthcare professionals in dealing with the tragedy of the choices they face. In this category, five themes came forward: acknowledging, offering comfort, managing harm, consideration through dialogue and repairing harm. Conclusion: Our study shows that addressing harm in MCD in tragic situations provides an important moral learning opportunity for participants. By formulating and becoming aware of harm, MCD aids healthcare professionals in the task they are faced with, namely making difficult and painful choices. MCD helps healthcare professionals to repair moral damage, making clear at the same time that harm cannot be undone.

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Navigating the Dangerous Terrain of Moral Distress: Understanding Response Patterns in the NICU

Cited by 40 publications

References 78 publications

Moral Distress in the Neonatal Intensive Care Unit: What Is It, Why It Happens, and How We Can Address It

Moral Distress in the Neonatal Intensive Care Unit: What Is It, Why It Happens, and How We Can Address It

The Extremely Preterm Infant: Ethical Considerations in Life-and-Death Decision-Making

Addressing harm in moral case deliberation: the views and experiences of facilitators

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