Staff Perceptions of Dying and Death in a Pediatric Cardiac Intensive Care Unit During COVID-19

We performed a single-site cross-sectional survey and medical record review of all deaths at a quaternary pediatric CICU in 2 years (June 30, 2019, to July 1, 2021). The detailed methodology, institutional review board approval, and survey validation were previously published.⁸  Interdisciplinary staff including bedside nurses, allied health staff (social workers, child-life specialists, and respiratory therapists), and medical providers (attending physicians, nurse practitioners, and trainees) involved in a decedent’s care were invited to complete a survey with consent implied by their voluntary completion. The survey included PICU-QODD questions and 2 additional global items rating quality of the moment of death and quality of life in the 7 days preceding death, with opportunity for free-text responses. The PICU-QODD consists of 20 items evaluating the dying process (including family presence) and death that are scored on a Likert scale (from 0 [terrible] to 10 [ideal]). Standardized overall scores (0-100) were calculated for surveys with at least 80% responses.^7,8  Surveys returned within 14 days of the child’s death were included.

Patient-level data included demographics, diagnoses, palliative care involvement, and medical therapies in the 7 days preceding death. Medical intensity was dichotomized as low (not requiring cardiopulmonary resuscitation [CPR] or mechanical support, receiving inotropes without respiratory support, or noninvasive/invasive ventilation with ≤1 inotrope) or high (invasive ventilation with >1 inotrope, open chest, mechanical support, or CPR). Mode of death was defined as follows: maximal resuscitation (CPR), treatment limitation, discontinuation of life-sustaining therapy (DLST), comfort care only (no interventions), and brain death.¹⁰ 

To examine the effect of our institutional visitation policy at EOL on staff perceptions of QODD, we divided the original cohort into prepandemic and pandemic epochs.⁸  Starting in March 2020, only the same 2 adult CICU visitors were permitted at bedside throughout admission, a change from the prepandemic policy of no limitations. Siblings and other family members were allowed to visit proximate to EOL with unit nursing and physician leadership oversight. Symptomatic staff underwent COVID-19 testing, and sick calls related to COVID-19 were recorded by occupational health and safety (OHS) staff, who investigated cases for on-site exposures to determine nosocomial infection. We obtained aggregate results for CICU staff during the study period from OHS records.

Staff respondent and patient characteristics were compared between epochs by use of Fisher exact or Wilcoxon rank sum tests. To compare survey responses, logistic regression with Huber-White estimates of SEs accounted for correlations between multiple surveys per patient. Analyses were performed in Stata version 16. Free-text responses related to COVID-19 were manually searched by using terms related to “virus” and “visitation.”

We received 713 completed surveys (n = 455 [64%] in the pandemic epoch), with a 72% response rate for 60 patient deaths (n = 38 [63%] in the pandemic epoch). Staff respondent variables between epochs were not significantly different (see Table). Patient-level and clinical-level variables did not differ significantly between epochs apart from the older age of patients during the pandemic (see Table). Standardized PICU-QODD scores did not differ significantly between epochs (mean difference, 0.9 [95% CI, 3.6, -1.8], P = .51). Individual items related to family presence, quality of moment of death, and quality of life in the 7 days preceding death also did not differ significantly between epochs (see Table and Figure, panel A). Results for the PICU-QODD and individual items did not differ significantly between epochs when compared across staff discipline, years of clinical experience, intensity of EOL therapies, or palliative care referral.

Of 312 total free-text responses (n = 97 [31%] prepandemic and n = 215 [69%] pandemic), only 4 (1.9%) specifically related to COVID-19 or visitation restrictions (see Figure, panel B).

There were no documented nosocomial COVID-19 infections in CICU staff (of 258 patient-facing CICU employees) during the study period. The patient infection rate was 0.71%.

The pandemic did not negatively influence CICU staff PICU-QODD scores or perceptions of quality of the moment of death, or quality of life in the 7 days preceding death, despite similar clinical care provision. This result is in the context of less stringent restrictions at EOL compared with publications from other institutions.^2,4  We also observed low nosocomial infection rates. Despite the immense impacts of COVID-19 on daily life and health care provision generally, the pandemic and visitation restrictions were explicitly mentioned in less than 2% of free-text responses.

Health care administrators have the unenviable position of balancing pandemic safety precautions with harms of precluding the physical presence of loved ones at EOL.¹¹  Compared with our pandemic-related institutional policies, significantly stricter visitor restrictions were reported in adult medicine and other pediatric centers.⁴  Despite the well-intentioned rationale, no evidence supports that stringent caregiver restriction policies reduce nosocomial spread of COVID-19.^3,12  Adult critical and pediatric palliative care providers have reported moral distress from enforcing restrictive family visitation policies.^4,13  Restrictions to visitation have been heavily criticized, particularly in pediatrics.^3,12  Physical connection between parents and their dying child is a critical component of a “good death” experience.^14,15  To overcome obstacles, pediatric CICU staff, like adult providers, have endeavored to “fill the gap” by using innovative communication methods to connect patients and relatives.¹³ 

Limitations must be considered when interpreting these results. This study was performed in a single pediatric quaternary center, thus limiting the generalizability of our findings without the ability to make comparisons between different visitation policies. Relative to adult centers, we report overall low patient infection rates, although parents were not routinely tested. Additionally, staff were not directly tested as part of this study. Noninstitutional testing results were voluntarily provided by staff when they notified OHS of their need for absence. This factor may influence inferences relating to absent nosocomial infection with more liberal visitation restrictions. We did not include the perspectives of family members directly affected by visitor restrictions. Our objective was to study the clinicians’ perspective, which is justified for several reasons.^4,7,8,16  Interdisciplinary staff in the CICU play an integral role in supporting children and families at EOL. Moral distress surrounding EOL care is a key driver of poor staff health, and this distress was heightened during the pandemic.⁵  Enhancing the experience of staff caring for patients at EOL may promote staff well-being, a core priority in contemporary health care. Because clinicians are often involved in multiple pediatric deaths during their career, they can provide comparative reference frames. Finally, the absence of robust, validated clinical pediatric EOL care quality indicators combined with challenges ascertaining perspectives of newly bereaved family members make staff perceptions a valuable way of measuring the quality of provision of EOL care.^16,17 

Our data support that staff perceptions of QODD were not adversely affected by the visitor restrictions due to the pandemic, although we note that our study institution had more lenient policies than other institutions. Affording some flexibility to visitation at EOL may mitigate the staff distress caused by the absence of the family at the bedside and did not result in elevated staff infection risk. These results may have implications for developing visitation policies in future global health challenges that require balancing infection risk with the distress associated with restrictive visitation policies.

The authors thank Stacy Van Putten, BSM, for administrative and recruitment support; the CICU interdisciplinary team who participated; the occupational health and safety team at Boston Children’s Hospital; and CICU leadership who supported the study, including Ravi Thiagarajan, MBBS, Catherine Allan, MD, Jason Thornton, DNP, and Patricia Hickey, PhD. This study was performed at Boston Children’s Hospital, Boston, Massachusetts.