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When a Child Dies in the PICU: Practice Recommendations From a Qualitative Study of Bereaved Parents*

Butler, Ashleigh E. PhD1,2; Copnell, Beverley PhD3; Hall, Helen PhD2

Pediatric Critical Care Medicine: September 2019 - Volume 20 - Issue 9 - p e447-e451
doi: 10.1097/PCC.0000000000002040
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Objectives: Around the world, the PICU is one of the most common sites for hospitalized children to die. Although ensuring the best possible care experience for these children and their families is important, clear recommendations for end-of-life and bereavement care, arising from the parents themselves, remain limited within current literature. This report aims to describe bereaved parents’ recommendations for improvements in end-of-life care and bereavement follow-up when a child dies in intensive care.

Design: Thematic analysis of incidental data from a larger grounded theory study.

Setting: Four Australian PICUs.

Subjects: Twenty-six bereaved parents participated in audio-recorded, semi-structured interviews in 2015–2016. Interviews explored their experiences of having a child die in intensive care and their experiences of end-of-life care and bereavement follow-up. Data pertaining to this report were analyzed via thematic analysis.

Interventions: None.

Measurements and Main Results: Bereaved parents identified several areas for care delivery and improvement across three time periods: during hospitalization; during the dying phase; and during bereavement. During hospitalization, parents’ recommendations focused on improved communication, changes to the physical environment, better self-care resources, and provision of family support. During the dying phase, parents suggested private, de-medicalized rooms, familiar staff members, and support to leave the hospital. Recommendations for care after death focused mainly on the provision of ongoing support from the hospital or local bereavement services, as well as improved information delivery.

Conclusions: Findings from this study offer many concrete recommendations for improvements in care both during and after a child’s death. These recommendations range from simple practice changes to larger organizational modifications, offering many potential avenues for change and improvement both on an individual healthcare provider level and within individual PICUs.

1The Louis Dundas Centre for Children’s Palliative Care, University College London Great Ormond Street Institute of Child Health, London, United Kingdom.

2School of Nursing and Midwifery, Monash University, Melbourne, VIC, Australia.

3School of Nursing and Midwifery, La Trobe University, Melbourne, VIC, Australia.

*See also p. 901.

Supported, in part, by grant from the Australian College of Critical Care Nurses Novice Researcher Grant, and the Australian College of Children and Young People’s Nurses Sister Mary Dorothea Sheehan Scholarship.

Dr. Butler received support for article research from Australian College of Critical Care Nurses Novice Researcher Grant, Australian College of Children and Young People’s Nurses Sister Mary Dorothea Sheehan Scholarship, and Australian Government Research Training Program Stipend (formerly Australian Postgraduate Award). Dr. Copnell received funding from the Australian College of Critical Care Nurses. Dr. Hall disclosed that she does not have any potential conflicts of interest.

For information regarding this article, E-mail: Ashleigh.butler@ucl.ac.uk

Each year, 2–10% of all children admitted to PICUs will die during their stay (1–4), making it one of the most common locations for children to die in hospital (56). Almost universally, these children will be accompanied by a number of family members, such as their parents or guardians, their siblings, their grandparents, or other members of their extended family. It is well known that the family experiences of their time in hospital can have significant and long-lasting impacts on their memories of their dying child, and their subsequent bereavement journey (7–10). Within the current literature, there are many recommendations for improvements in end-of-life care delivery from qualitative studies exploring parental experiences, most commonly focusing on elements such as communication, the provision of resources, or having “compassionate” staff members (11–14). However, the recommendations made within research reports are often vague, with little discussion of how to translate these into actual, meaningful, clinical change. Many authors, for example, suggest “improvements in communication,” without articulating what this means for changes to current clinical practice. In order to begin to address this gap, this short report offers explicit recommendations for improvements in end-of-life care delivery and bereavement follow-up, as suggested by bereaved parents themselves.

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MATERIALS AND METHODS

The Bereaved PICU Parent Study utilized a constructivist grounded theory methodology to explore 26 bereaved parents’ experiences of their child’s death in one of four Australian PICUs and their interactions with healthcare providers during this time. A detailed description of our recruitment methods (15), and the main study findings (16–20), are available elsewhere. Briefly, bereaved parents were contacted via mailed letters or hospital-based social workers 6–48 months after their child’s death and were invited to take part in semi-structured, audio-recorded face-to-face or telephone interviews with the first author, a PICU nurse, and qualitative researcher. Interviews with 18 mothers and 8 fathers of 18 deceased children were conducted during 2015 and 2016, focusing on parents’ experiences in PICU and their interactions with the healthcare staff. During their interviews, many parents spontaneously offered suggestions for improvements in end-of-life care or bereavement follow-up. These comments were treated as supplementary data, with thematic analysis used to identify key themes within the parents’ recommendations (21). All interviews were transcribed verbatim and entered into NVivo 10 (QSR International, Melbourne, Australia) for analysis by the first author. Line by line coding was undertaken, enabling familiarization of the data. Further analysis and coding undertaken by the research team then enabled the collation of similar codes into concepts and categories. The use of diagrams enabled the identification of similar categories, which were then organized according to various timeframes within the parents’ journey.

This study was reviewed and approved by the four Human Research Ethics Committees. Written informed consent was provided by all participants prior to their interviews.

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RESULTS

Parents’ recommendations pertained to three key time periods across their journey: during hospitalization, during the dying phase, and during bereavement. A brief overview of the parents’ key recommendations within each of these time periods is described below, and outlined in Table 1, with supporting illustrative quotes provided in Table 2.

TABLE 1.

TABLE 1.

TABLE 2.

TABLE 2.

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During Hospitalization

Bereaved parents emphasized the need for honesty. They wanted to be clearly and directly told that their child’s chances of survival were limited, as early as possible, using unambiguous language. Parents also suggested all information be both oral and written, including the use of pictures and diagrams, and reiterated multiple times to enhance recall and understanding. In addition, parents recommended the provision of a parents’ respite room that included snacks, toiletries, facilities for showering or washing clothes, and phone charging access. The provision of meals and overnight accommodation was also commonly noted as important, as were improvements in car parking facilities and costs, easier access to the PICU, and bigger rooms with more natural lighting. Finally, although parents felt supported by the staff in the hospital, they recommended referral to appropriate community-based support services (such as counselors, bereavement or disease-specific support groups, or pastoral care workers) earlier in their child’s illness, as well as improved support and resources for the sick child’s siblings.

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During the Dying Phase

When their child was imminently dying, most parents preferred to be in a private room out of the main thoroughfare, which had natural light, was large enough for other family members to visit, and was de-medicalized as much as possible. Parents also recommended continuity of carer for all end-of-life discussions and life-support removal. Creation of mementos, particularly photos, was also commonly mentioned.

Parents also strongly recommended that staff members continue to stay with them after their child had died. They wanted assistance to wash their child, pack their belongings, and walk out of the PICU and to their cars. A waiver of car parking fees was also commonly suggested. Additionally, many parents suggested improved information about visiting their child in the morgue, and an improved visiting room to spend time with their child’s body after they had left the PICU.

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During Bereavement

All parents strongly recommended that follow-up care, such as phone calls, letters, meetings with staff, or staff presence at funerals, be routinely offered. Parents stressed the importance of including the whole family in follow-up care, not just the mother or the person who answers the phone each time, and recommended that follow-up begin a few days after the child’s death and be gradually tapered off over 12 months.

In addition, parents wanted more information about what happened next: going home, planning a funeral for a child, the postmortem examination, normal grief symptoms, and attending counseling or bereavement support groups. They also suggested they be given lists of local bereavement services as they were leaving the hospital, or a few days later during bereavement follow-up. Finally, some parents recommended connecting newly bereaved parents to others who have also had a child die, either through a hospital-based bereavement support group or via a parent buddy system.

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DISCUSSION AND CONCLUSIONS

The findings from this study offer many avenues for improvements in care delivery both during and after the time a child dies in the PICU, suggested by bereaved parents themselves. Generally, our findings reflect common themes identified in both PICU and general pediatric end-of-life care delivery over the past 2 decades, including the need for improved communication, better provision of resources for families of hospitalized children, the need to create mementos, and the strong need for provision of bereavement aftercare (91122–25). Despite the relatively simple, low cost nature of many of the suggestions to improve care delivery made by bereaved parents across more than 20 years of research, our findings would suggest that the translation of these recommendations into clinical practice has not been well achieved, or has not been implemented in ways that are meaningful to the parents themselves. Although it is understandable that saving lives is prioritized in the allocation of resources, many of the recommendations made by bereaved parents are low cost and do not require significant allocation of either staff time or PICU or hospital funding. The reasons why it still remains challenging to implement these recommendations are unclear; further research is needed to pinpoint the barriers and identify ways to overcome them.

As such, we believe it is time to shift the focus of research away from exploring the experiences of bereaved families and move toward integrating recommendations of both researchers and families into clinical practice. Our findings offer many concrete suggestions that could be easily integrated into daily practice. Although we do not advocate for the standardization of end-of-life or bereavement follow-up care, the recommendations provided here may be helpful to staff when exploring the needs of individual families and the possible services or interventions that may be offered to them.

Some interventions, such as the provision of written information to supplement face-to-face discussions, are relatively simple but may help to improve parents’ perceptions of communication and care. Other recommendations are more difficult to implement and may require longer-term planning and institutional change, such as the development of dedicated bereavement follow-up services or the provision of continuity of carer during end-of-life discussions. Although it may not be feasible or even desirable for each PICU around the world to implement every suggestion made by the parents in this study, it is important to strive for the implementation of evidence-based care delivery despite the challenges it may pose. We need to begin to close the gap between research and practice by developing parental recommendations into achievable, realistic interventions, so that meaningful improvements to parents’ end-of-life and bereavement care experiences can be achieved.

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REFERENCES

1. Australian and New Zealand Paediatric Intensive Care Registry (ANZPICR): Report of the Australian and New Zealand Paediatric Intensive Care Registry 2016. Avaliable at: https://www.anzics.com.au/annual-reports/. Accessed July 10, 2018
2. Burns JP, Sellers DE, Meyer EC, et al. Epidemiology of death in the PICU at five U.S. teaching hospitals*. Crit Care Med 2014; 42:2101–2108
3. Devictor DJ, Latour JM; EURYDICE II study group: Forgoing life support: How the decision is made in European pediatric intensive care units. Intensive Care Med 2011; 37:1881–1887
4. Kipper DJ, Piva JP, Garcia PC, et al. Evolution of the medical practices and modes of death on pediatric intensive care units in southern Brazil. Pediatr Crit Care Med 2005; 6:258–263
5. Brandon D, Docherty SL, Thorpe J. Infant and child deaths in acute care settings: Implications for palliative care. J Palliat Med 2007; 10:910–918
6. Stark Z, Hynson J, Forrester M. Discussing withholding and withdrawing of life-sustaining medical treatment in paediatric inpatients: Audit of current practice. J Paediatr Child Health 2008; 44:399–403
7. Butler A, Hall H, Willetts G, et al. Parents’ experiences of healthcare provider actions when their child dies: An integrative review of the literature. J Spec Pediatr Nurs 2015; 20:5–20
8. Butler AE, Hall H, Willetts G, et al. Family experience and PICU death: A meta-synthesis. Pediatrics 2015; 136:e961–e973
9. Meert KL, Briller SH, Schim SM, et al. Examining the needs of bereaved parents in the pediatric intensive care unit: A qualitative study. Death Stud 2009; 33:712–740
10. van der Geest IM, Darlington AS, Streng IC, et al. Parents’ experiences of pediatric palliative care and the impact on long-term parental grief. J Pain Symptom Manage 2014; 47:1043–1053
11. Steele AC, Kaal J, Thompson AL, et al. Bereaved parents and siblings offer advice to health care providers and researchers. J Pediatr Hematol Oncol 2013; 35:253–259
12. Brooten D, Youngblut JM, Seagrave L, et al. Parent’s perceptions of health care providers actions around child ICU death: What helped, what did not. Am J Hosp Palliat Care 2013; 30:40–49
13. Falkenburg JL, Tibboel D, Ganzevoort RR, et al. Parental physical proximity in end-of-life care in the PICU. Pediatr Crit Care Med 2016; 17:e212–e217
14. Meyer EC, Ritholz MD, Burns JP, et al. Improving the quality of end-of-life care in the pediatric intensive care unit: Parents’ priorities and recommendations. Pediatrics 2006; 117:649–657
15. Butler AE, Hall H, Copnell B. Ethical and practical realities of using letters for recruitment in bereavement research. Res Nurs Health 2017; 40:372–377
16. Butler AE, Copnell B, Hall H. Welcoming expertise: Bereaved parents’ perceptions of the parent-healthcare provider relationship when a critically ill child is admitted to the paediatric intensive care unit. Aust Crit Care 2017; 32:34–39
17. Butler AE, Copnell B, Hall H. “Some were certainly better than others” - bereaved parents’ judgements of healthcare providers in the paediatric intensive care unit: A grounded theory study. Intensive Crit Care Nurs 2018; 45:18–24
18. Butler AE, Hall H, Copnell B. The changing nature of relationships between parents and healthcare providers when a child dies in the paediatric intensive care unit. J Adv Nurs 2018; 74:89–99
19. Butler AE, Hall H, Copnell B. Becoming a team: The nature of the parent-healthcare provider relationship when a child is dying in the pediatric intensive care unit. J Pediatr Nurs 2018; 40:e26–e32
20. Butler AE, Hall H, Copnell B. Gradually disengaging: Parent–health care provider relationships after a child’s death in the pediatric intensive care unit. J Fam Nurs 2018; 24:470–492
21. Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol 2006; 3:77–101
22. Macnab AJ, Northway T, Ryall K, et al. Death and bereavement in a paediatric intensive care unit: Parental perceptions of staff support. Paediatr Child Health 2003; 8:357–362
23. McGraw S, Truog R, Solomon M, et al. “I was able to still be her mom” parenting at end of life in the PICU. Pediatr Crit Care Med 2012; 13:350–356
24. Meert K, Briller S, Schim S, et al. Exploring parents’ environmental needs at the time of a child’s death in the pediatric intensive care unit. Pediatr Crit Care Med 2008; 9:623–628
25. Midson R, Carter B. Addressing end of life care issues in a tertiary treatment centre: Lessons learned from surveying parents’ experiences. J Child Health Care 2010; 14:52–66
Keywords:

bereavement; child; hospitalized; death; health personnel; intensive care unit; pediatric; parents

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