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Abstract
Objective To synthesise evidence from qualitative studies on the experiences of healthcare personnel (HCP) in the neonatal intensive care unit (NICU) caring for dying neonates.
Methods We conducted a systematic search, in accordance with Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines (PROSPERO: CRD42021250015), of four databases (PubMed, Embase, PsycINFO and CINAHL) from date of inception of the databases to 31 December 2021 using MeSH terms and related keywords. Data were analysed using three-step inductive thematic synthesis. Quality assessment of included studies was performed.
Results Thirty-two articles were included. There were 775 participants, majority (92.6%) of whom were nurses and doctors. Quality of studies was variable. The narratives of HCP coalesced into three themes: sources of distress, coping methods and the way forward. Sources of distress encompassed HCP’s discomfort with neonatal deaths; poor communication among HCP and with patient’s family; lack of support (from organisations, peers and HCP’s family) and emotional responses (guilt, helplessness and compassion fatigue). Methods of coping included setting emotional boundaries, support from colleagues, clear communication and compassionate care and well-designed end-of-life workflows. Steps taken by HCP to move forward and overcome the emotionally turbulent effects of NICU deaths included finding meaning in death, building deeper relationship with patients’ families and the NICU team and embracing purpose and pride in work.
Conclusion HCP face several challenges when a death occurs in the NICU. HCP can provide better end-of-life care if their undesirable experiences with death are mitigated by better understanding and overcoming factors causing distress.
- Intensive Care Units, Neonatal
- Qualitative research
Data availability statement
The data that support the findings of this study are available from the corresponding author, ZA, on reasonable request.
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WHAT IS ALREADY KNOWN ON THIS TOPIC
Healthcare personnel (HCP) working in neonatal intensive care units (NICU) may endure prolonged moral distress after deaths of newborns under their care.
WHAT THIS STUDY ADDS
Doctors and nurses share common experiences in dealing with neonatal deaths which ranges from feelings of distress to positive methods of coping and finding meaning in death.
Experiences of HCP with death in NICU can be categorised into three themes: sources of distress, coping methods and the way forward.
Undesirable experiences with death can be mitigated by understanding and overcoming factors causing distress.
HOW THIS STUDY MIGHT AFFECT RESEARCH, PRACTICE OR POLICY
A common framework for work processes and support systems involving all categories of HCP may create a positive experience of dealing with death.
Studying better and efficient ways to support HCP and help them deal with neonatal deaths can improve end-of-life care in the NICU.
Introduction
Despite global efforts to reduce neonatal mortality,1 deaths still occur in the neonatal intensive care unit (NICU). Deaths, whether occurring unexpectedly in seemingly well newborns or anticipated in infants with life-limiting conditions, are understandably significant events.
Existing literature on experiences of NICU deaths by healthcare personnel (HCP) mainly focus on HCP’s needs, tasks performed and challenges faced.2–5 For example, a systematic review in 2016 by Prentice et al described how HCP in the neonatal and paediatric intensive care units (ICUs) faced moral distress when they perceived disproportionate use of interventions which were not in the dying child’s interests and often practised within a negative ethical climate.2 Nurses’ distress comprised of emotional and psychological components, whereas doctors faced dilemmas in decision-making and resultant ethical confrontations. Beltran and Hamel’s 2020 review of qualitative and quantitative primary studies and secondary publications on HCP’s perspectives of neonatal palliative care in the USA3 revealed several gaps: provider’s personal attitudes, inexperience in delivering care, practice approaches, education and training needs. Critical care nurses in emergency departments and paediatric and neonatal ICUs experienced having a blurred line between personal and professional selves while caring for the dying child.4 The review by Huang et al in 2021, using the Ring Theory of Personhood, elaborated that caring for dying neonates leaves a deep imprint on HCP’s inner, individual, relational and societal rings affecting multiples spheres such as values, belief, ideals, motivation and action. The authors highlighted HCP’s emotional and physical struggles, coping mechanisms, conflicts and the need for timely and individualised support.5
We undertook this review to include wider range of HCP (doctors, nurses and allied health personnel) with an intention to capture a more balanced view of HCP’s experiences beyond the distress with a hope of creating a better support platform. Therefore, this review addressed three unanswered questions: (1) What are the experiences of different groups of HCP? (2) Do HCP have positive experiences with death in the NICU? and (3) How can HCP overcome moral distress to achieve professional and personal growth?
Methods
We conducted a systematic review of qualitative studies according to Preferred Reporting Items for Systematic Reviews and Meta-Analyses6 and Enhancing Transparency in Reporting the Synthesis of Qualitative Research guidelines.7 We registered the protocol on PROSPERO (ID: CRD42021250015) on 8 May 2021.
Search strategy
We searched PubMed, Embase, PsycINFO and CINAHL from inception of the databases to 31 December 2021 using the following MeSH terms and related keywords: ‘neonatal’, ‘intensive care unit’, ‘death’, ‘attitude to death’ and ‘healthcare personnel’ (online supplemental material 1). We also searched bibliography of included articles and relevant reviews.
Supplemental material
Inclusion and exclusion criteria
We included qualitative studies (narrative threads, interviews and focus groups) published in English describing HCP’s experience with death in the NICU. We excluded quantitative studies, commentaries, conference abstracts and systematic reviews.
Study selection and data extraction
Three authors (JQHW, JSC, HTM) reviewed the search results and independently screened titles, abstracts and full texts; discrepancies were resolved after discussion with senior authors (TSZT, YPMN, ZA).
Data synthesis
We analysed data according to the three-step inductive thematic synthesis.8 Three authors (JQHW, JSC, HTM) independently performed line-by-line coding of extracted data from primary studies. Similarities and differences between codes were compared and grouped into hierarchical structures. We created new codes to encompass the meaning of the groups of initial codes. Next, we derived descriptive themes by incorporating similar elements of the codes. Finally, we synthesised analytical themes through a reiterative process of comparison, synthesis and linking. We resolved discrepancies through team discussions.
Quality assessment
We assessed quality of the included studies using the 32-item Consolidated Criteria for Reporting Qualitative Studies (COREQ) checklist.9
Results
Our preliminary search retrieved 7227 studies. After removing duplicates, 5551 studies underwent title and abstract screening, and 304 studies were selected. Eligibility was assessed for the available 245 full-text articles and 32 studies were included (online supplemental material 1) in the qualitative synthesis (figure 1). There were 775 participants from 10 countries, the majority (92.6%) of whom were nurses and doctors; this included 503 nurses and nurse technicians, 215 doctors, 5 allied health workers and 52 HCP whose jobs were unspecified. Twenty-three studies involved nurses/nurse technicians only, while three studies involved doctors only; the remaining six involved both doctors and nurses. Two studies (33 and 40) include allied health personnel along with doctors and nurses. Two pairs of articles (23 and 24, and 43 and 44; online supplemental material 2)10–13 involved the same participants but addressed different research questions. Quality of the included studies was variable, with 6 studies demonstrating good COREQ compliance (≥25 items)), 17 with moderate compliance (17–24 items) and 9 with poor compliance (9–16 items). We included all studies regardless of quality (online supplemental material 3). Online supplemental material 2 summarises details of the included studies.
PRISMA flow diagram. EOL, end of life; NICU, neonatal intensive care unit; PRISMA, Preferred Reporting Items for Systematic Reviews and Meta-Analyses.
The narratives of HCP coalesced into three broad themes: (i) sources of distress, (ii) coping methods and (iii) the way forward. Representative quotes are shown in online supplemental material 4, while figure 2 displays the themes and subthemes.
Diagram illustrating the relationship between the themes arising from inductive thematic synthesis of the varied experiences of HCP with death in the NICU. HCP, healthcare professionals; NICU, neonatal intensive care unit.
Sources of distress
Discomfort with death
Nurses’ discomfort with NICU deaths arose from three factors: (1) their limited experience with end-of-life (EOL) care; (2) uncertain EOL plans and (3) deaths occurring in newborns. Some nurses had limited training and experience in providing EOL care14–20 due to low patient numbers in their units,15–17and preferential allocation of ill patients to senior nurses.14–17 These nurses subsequently faced difficulty in shifting from a curative to a palliative care mindset, and felt overwhelmed when caring for dying neonates.14 16–21 HCP faced moral dilemmas due to unclear EOL care guidelines15 20 22 23 and differing management plans from various teams within the same NICU.17 18 Many questioned the need for neonates with poor prognosis and uncertain quality of life to continue receiving invasive treatments.15 18–20 22 23 They also questioned goals of care and significance of their duties in the NICU.20 22 23 HCP’s sorrow from their patients’ sufferings and death was compounded by the unique situation of experiencing death when life had just begun,20 24–26 and the unnaturalness of a child’s death.15 24 27 HCP empathised with parents’ grief22 24 25 and were also emotionally attached to long-staying neonates.22 24
Poor communication
Differences of opinions in providing a newborn palliative care, with a dichotomy between comfort-focused care and disease-directed curative treatment, often led to intrateam conflict.10 12 18 21 Nurses felt they were helpless, especially when they disagreed with treatment decisions made by doctors,16 25 28 and felt compelled to obey doctors’ instructions.26 Many nurses wished for more multidisciplinary team meetings, hoping to find a safe space to voice their views.11 16
Communication breakdown with the family also exacerbated HCP’s emotional distress. The main cause was differences in values and beliefs about patients’ prognosis and treatment plans.23 25 29 30 Other causes included lack of trust and transparency,10 language barriers10 and parents’ inability to understand medical information,19 especially when parents were in a state of shock or grieving.11 15 18 26 31
Lack of support
HCP felt they did not receive sufficient support from their organisations, peers and loved ones. Workplaces did not provide consistent psychological support.18 30 Debriefing sessions were infrequent, poorly facilitated or conducted too late.32 A perceived lack of emotional support from their colleagues and management18 32 33 aggravated HCP’s distress and sense of isolation as they felt that friends and relatives, being laypersons, could not understand their sufferings.32 Manpower shortage made it difficult for the nurses to attend to the parents’ needs which resulted in a more stressful work environment.26 33 34
Emotional struggles
HCP suffered from feelings of guilt, helplessness and compassion fatigue. HCP felt guilty when they perceived care decisions potentially caused more suffering to the child15 20 22 23 25 or when they felt unable to answer parents’ questions about the child’s uncertain prognosis.29 31 Some HCP also felt guilty for their own emotional responses.29 HCP reported helplessness when witnessing suffering and eventual death of their patients. Many ascribed patients’ deaths to failure of their professional duty.18 22 25 33 35–38 They also felt helpless when dealing with grieving parents, especially those they were unfamiliar with,15 17 26 31 and when they had to communicate bad news.15 16 22 24 28 33 35 39 HCP experienced compassion fatigue in long-term care settings17 19 25 27 36 and after experiencing deaths of many patients.19 32 HCP described consciously or subconsciously distancing themselves from patients for self-protection.19 23 32 37 Many questioned the meaning of their profession and duties19 24 36 and became physically and emotionally exhausted.19 24 27 32 36
Methods of coping
Personal care
HCP expressed the importance of setting emotional boundaries, remaining calm and making objective decisions when facing stressful situations at work.18 19 33 Nurses avoided thinking of patients’ poor prognosis and concentrated on providing care.18 20 Some HCP shared their grief by crying and praying for their patients, while others preferred to express their emotions alone in private.20 35 36 HCP engaged in recreational activities such as reading, exercising and listening to music for their physical, emotional and mental well-being.17 20 Some separated their personal and professional life spheres, referring to self-care routines as a ‘little escape’ from work.36 39
Support from colleagues
Overwhelmed HCP appreciated being able to share their emotions with colleagues who could relate to their feelings and struggles. Some of their peers temporarily took over their work, allowing them to recalibrate and recover from the emotional onslaught.20 25 30 36 Good NICU leadership and mentoring also provided HCP with assistance and guidance in difficult situations.17 36
Clear communication and compassionate care
By providing compassionate care and clear communication about the dying infant’s condition, treatment plans and potential complications with the family, the healthcare team facilitated shared decision-making and mental preparation for future scenarios.12 15 26 31 32
Well-designed systems and protocols
HCP recognised the importance of involving a multidisciplinary team, comprising psychologist, social worker and obstetrics staff, to fulfil patients’ complex care needs.16 17 Flexible workflow, protocols and rosters maintained adequate staffing and increased staff’s efficiency and comfort in providing EOL care.19 20 36 Through experience, HCP became more knowledgeable, skilful and confident in decision-making, care provision and communication.20 25 27 30 32 37 Palliative care courses strengthened staff’s competency and comfort with EOL care.18 Formal debriefing sessions allowed HCP to safely express their opinions, reconcile their grief and validate their actions through mutual support.40
The way forward
Finding meaning in death
HCP acknowledged death as a natural part of life and that every life has a purpose and were relieved when they felt they had done their best.12 25 37 Some HCP embraced their religious and spiritual faith which strengthened their belief about death as an integral part of life and that their ability to care of a dying child was a gift from God.31 33 37 Recognising each neonate’s individuality in a positive light, and honouring his/her life, further aided the HCP’s acceptance of death.12 13 By helping families with meaningful acts of service after death (eg, holding their child in privacy, taking photos and creating memory diaries),12 13 19 20 27 32 41 HCP were also able to achieve closure for themselves.
Building deeper relationships
By forging deeper relationships within the healthcare system and with the infant’s family, HCP could appreciate a positive experience with death. This required team members respecting each other’s unique roles and perspectives and working together to enhance intrateam communication.37 Doctors felt supported and confident when the entire NICU team was in consensus with their decision before embarking on management.29 37 Shared decision-making also enabled nurses to feel heard and respected. Mutual trust and transparency between HCP and family alleviated HCP’s distress when the baby died.10 11 17 20
Discussion
Our review captures the experiences of HCP with death in the NICU, ranging from feelings of distress, to coping with resilience and achieving a way forward. HCP’s distress in dealing with death results from both internal (eg, feeling of helplessness and discomfort with death) and external factors (eg, poor communication and lack of support). HCP cope through self-care, peer support and setting emotional boundaries. HCP who manage to cope well with death can achieve a state of acceptance, calmness and composure during challenging situations.
Nurses and doctors appear to struggle similarly at multiple levels in caring for dying neonates and grieving families. These struggles are exemplified by personal emotional turmoil, conflicts within healthcare teams and families and variability of EOL care. The universality of experiences faced by all HCP is an important finding. The recognition that ‘we are in the same boat’ can unify HCP into a collegial community capable of providing compassionate and effective care for dying babies, their families and for each other. Conversely, poor communication, perceived or true exclusion of nurses in critical decision-making processes and unsupportive environment aggravate HCP’s struggles with NICU deaths. Fortunately, these factors are rectifiable through systemic approaches: creating common palliative care guidelines, combined training in EOL, supportive leadership, structured timely debriefing sessions and promoting an environment of mutual respect in the healthcare institution.3
It is important to emphasise EOL care as a crucial element of care in NICU. Education in palliative care, long under-represented in nursing and medical curriculum,42 43 should be strengthened and contextualised to incorporate the uniqueness of newborn deaths. Support systems for HCP at work, both formal (eg, professional psychological support) and informal (eg, mutual respect, peer network), are important. These support systems need to be nuanced and targeted as an individual’s experience with death can be varied at different stages in their journey.
Encouragingly, we found that experiences with death can be positive—an empowering and fulfilling experience where inner struggles and hostilities in the environment are overcome with acts of altruism, higher calling and belief in self and the team. These experiences strengthen the stamina and staying power of HCP to remain within the profession. A dynamic relationship may exist, where an individual HCP may experience elements within the three themes depending on circumstances surrounding the death, personal factors and available support.
The limitations of this review include inclusion of only English language articles; underrepresentation of other HCP (apart from nurses and doctors) and predominance of HCP from Western countries. More research is needed on effective interventions to help HCP cope with NICU deaths.
Conclusion
HCP face many challenges when dealing with death in the NICU, from individual feelings of loss and grief, to relationship difficulties with families and within the healthcare team. Many of these difficulties are surmountable through both systematic and informal support systems. When they better cope with neonatal deaths, HCP can provide better EOL care as a united NICU team.
Data availability statement
The data that support the findings of this study are available from the corresponding author, ZA, on reasonable request.
Ethics statements
Patient consent for publication
Ethics approval
Not applicable.
Acknowledgments
We thank Ms Annelissa Chin, Medical Librarian, Yong Loo Lin School of Medicine, for her help in formulating the search strategy. We thank Ms Sheena Nishanti Ramasamy, medical writer, Department of Paediatrics, Khoo Teck Puat—National University Children’s Medical Institute, National University Hospital for editing and formatting the manuscript for submission.
References
Supplementary materials
Supplementary Data
This web only file has been produced by the BMJ Publishing Group from an electronic file supplied by the author(s) and has not been edited for content.
Footnotes
JQHW and JSC are joint first authors.
Contributors The idea of the review was germinated by JQHW, JSC and HTM and who performed primary data acquisition. ZA, TSZT and YPMN provided mentorship and guidance. All authors jointly performed data interpretation, formal analysis and conceptualisation of the themes. ZA is guarantor.
Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.
Competing interests None declared.
Provenance and peer review Not commissioned; externally peer reviewed.
Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.