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Research Letters |

The Development of Practical Guidelines for the Care of Deceased Children Is Perhaps a Utopia? FREE

Franca Benini, MD; Anna Ferrante, MD; Chiara Po', MD; Momcilo Jankovic, MD
[+] Author Affiliations

Author Affiliations: Department of Pediatrics, University of Padua, Padua (Drs Benini, Ferrante, and Po'), and Division of Pediatrics, University of Milano-Bicocca, San Gerardo Hospital, Monza (Dr Jankovic), Italy.


Arch Pediatr Adolesc Med. 2012;166(3):291-292. doi:10.1001/archpediatrics.2011.889.
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For parents, when a child dies, the concluding and irreversible separation is a devastating experience. Studies demonstrate how the care of the deceased child immediately after death is extremely important and how it can impact the families' capacity to cope with bereavement.14 Commonly experienced wishes and needs for parents after their child's death are to be with their child; clean, arrange, and dress the body; accompany the child to the mortuary and then continue to see the child; and have privacy, adequate time, and space.5,6 Currently, no official guidelines on the procedures to follow during this delicate phase are available.

In 2009, to collect information and data regarding the care of deceased children in hospitals, Veneto Region Healthcare Agency circulated a questionnaire to all the 31 pediatric departments of Veneto Region (pediatric population aged 0-18 years: 816 000 patients with 240 child deaths per year). Items on the survey were based on parents' wishes and needs as described in the literature; they inquired about the presence of specific policy for the child's body, care of the body, time for removal of the body, and access of the family to the body.

Answers were received by 27 of 31 pediatric departments (87%) compiled by the directors of each department. Only 7% of hospitals had a specific policy for deceased children; in 80% of hospitals, the body was removed from the ward within 3 hours of death (Italian legislation states that both adult and children's bodies should be removed within 2 hours). In 55% of hospitals, the body was placed in the mortuary where access was restricted (<5 hours/d); in 14% of hospitals, access was permitted for only 1 to 2 hours immediately before the coffin was closed. In 77% of hospitals, the family could help to dress the child's body. In only 33% of the hospitals were there areas where the body could be prepared according to different religious/cultural practices.

During the final stages of the child's illness, the family is continuously present, providing full and constant support, and yet, after death, the family abruptly loses any supportive role. Death represents a double separation trauma: first, from the person, and second, from the body. Together with poorly defined guidelines, aspects such as culture, religion, attitudes, and the course of the illness can severely condition and limit the practical management of a child's body after death. On the basis of the critical issues that emerged from our survey, the Italian Pediatric Society has discussed and drawn up a series of recommendations for the care of deceased children and their families:

  1. Deceased children should be handled differently from deceased adult patients.

  2. The period before the deceased child's body is removed from the ward should vary depending on the family's request and potentially extend over the 2 hours indicated indifferently for adults and children in Italian legislation.

  3. Clear information on after-death arrangements and the families' participation should be provided.

  4. Private areas/rooms specifically for deceased children should be available.

  5. Families should be allowed private access to the child's body for at least 8 hours.

  6. The family should be offered the possibility of participating in the preparation of the child's body.

  7. Access to the mortuary/private rooms should be straightforward.

  8. Different religious cultures and customs should be respected.

  9. Bereavement counselors should be on hand to provide expert support to the family.

We believe this topic should be discussed and addressed as an important aspect of child and family care and a socially relevant issue.

Correspondence: Dr Benini, Department of Pediatrics, University of Padua, via Giustiniani, Padua 35128, Italy (benini@pediatria.unipd.it).

Author Contributions:Study concept and design: Benini and Ferrante. Acquisition of data: Benini and Ferrante. Analysis and interpretation of data: Benini, Ferrante, Po', and Jankovic. Drafting of the manuscript: Benini and Po'. Critical revision of the manuscript for important intellectual content: Benini, Ferrante, Po', and Jankovic. Statistical analysis: Ferrante. Study supervision: Benini and Jankovic.

Financial Disclosure: None reported.

Goldman A, Hain R, Liben S. Oxford Textbook of Palliative Care for Children. Oxford, England: Oxford University Press; 2006
European Association of Palliative Care (EAPC) Taskforce.  IMPaCCT: standards for pediatric palliative care in Europe.  European J Palliat Care. 2007;14(3):2-7http://www.hospitalteachers.eu/kbank/engels/eapc.pdf
American Academy of Pediatrics. Committee on Psychosocial Aspects of Child and Family Health.  The pediatrician and childhood bereavement.  Pediatrics. 2000;105(2):445-447
PubMed   |  Link to Article
Himelstein BP. Palliative care for infants, children, adolescents, and their families.  J Palliat Med. 2006;9(1):163-181
PubMed   |  Link to Article
Borasino S, Morrison W, Silberman J, Nelson RM, Feudtner C. Physicians' contact with families after the death of pediatric patients: a survey of pediatric critical care practitioners' beliefs and self-reported practices.  Pediatrics. 2008;122(6):e1174-e1178
PubMed   |  Link to Article
Hongo T, Watanabe C, Okada S,  et al.  Analysis of the circumstances at the end of life in children with cancer: symptoms, suffering and acceptance.  Pediatr Int. 2003;45(1):60-64
PubMed   |  Link to Article

Figures

Tables

References

Goldman A, Hain R, Liben S. Oxford Textbook of Palliative Care for Children. Oxford, England: Oxford University Press; 2006
European Association of Palliative Care (EAPC) Taskforce.  IMPaCCT: standards for pediatric palliative care in Europe.  European J Palliat Care. 2007;14(3):2-7http://www.hospitalteachers.eu/kbank/engels/eapc.pdf
American Academy of Pediatrics. Committee on Psychosocial Aspects of Child and Family Health.  The pediatrician and childhood bereavement.  Pediatrics. 2000;105(2):445-447
PubMed   |  Link to Article
Himelstein BP. Palliative care for infants, children, adolescents, and their families.  J Palliat Med. 2006;9(1):163-181
PubMed   |  Link to Article
Borasino S, Morrison W, Silberman J, Nelson RM, Feudtner C. Physicians' contact with families after the death of pediatric patients: a survey of pediatric critical care practitioners' beliefs and self-reported practices.  Pediatrics. 2008;122(6):e1174-e1178
PubMed   |  Link to Article
Hongo T, Watanabe C, Okada S,  et al.  Analysis of the circumstances at the end of life in children with cancer: symptoms, suffering and acceptance.  Pediatr Int. 2003;45(1):60-64
PubMed   |  Link to Article

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Resilience
Posted on May 22, 2012
Giuseppe Masera, MD
Dept. of Pediatrics, Univ. of Milano-Bicocca, Monza
Conflict of Interest: None Declared
The topic presented in the Research Letter is a relevant issue which deserves more attention from Pediatricians, Psychologists and Health Care Operators.When a child dies, the family faces one of the most dramatic experiences of life.The specific policy for the child’s body describes by the authors is one important part of the process of bereavement.Other aspects should be considered in order to limit the long-term post-traumatic distress, and to promote the possible post-traumatic growth (resilience).For example:- sharing the medical decisions during the disease, in particular in the last period of life- the communication with the different members of the staff, and with the child in particular- a meeting few months after the death, promoted by one of the treating doctors, in order to listen to the parents and possibly to clarify doubts and to receive criticisms or even thanks- the need of a psychological support in some specific cases.  Based on the experience of the authors, it should be welcome and useful a comment on the different aspects of an holistic approach to the family before, during and after the death of a child.
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