Bereavement Protocols in Pediatric Hospitals

Abstract

How do you handle the death of a child in a Pediatric Hospital?  Grief, loss and despair is different for each parent. The loss can be from a trauma, unexpected or from a prolonged illness.  The parent, sibling and extended family do not only feel grief and loss, the staff that have taken care of the child also feel it. As a Pediatric trauma nurse, I have felt the loss in all circumstances.  It has been stated by many of my contemporary colleges in nursing that it will get better with time, it never does.  Cincinnati Children’s Hospital studied the way Pediatric facilities handled the bereavement process and if protocols were in place. 

Introduction

 The death of a child is difficult and individualized.  The experience of grief, especially for parents, is extremely personal and the pain can be excruciating (Borg, Meyer, Fitzgerald; 2014).  In 2005 Cincinnati Children’s Hospital Medical Center began a program to ensure that all bereaving families were given support, information, and resources in a consistent manner. The difficulty arose when departments were completing it differently and support was not consistent throughout the facility (Borg, Meyer, Fitzgerald 2014). The bereavement process was then centralized to minimize overlap and enhance consistency (Borgman, Meyer, Fitzgerald; 2014)

 The Mission of Cincinnati Children’s Hospital is:

Cincinnati Children’s will improve child health and transform delivery of care through fully integrated, globally recognized research, education and innovation.

For patients from our community, the nation and the world, the care we provide will achieve the best:

•Medical and quality-of-life outcomes

•Patient and family experience

•Value

 today and in the future. (About Cincinnati Children’s; 2018).

 U.S. News and World Report ranked Cincinnati Children’s #2 in the nation among Honor Roll hospitals in 2018-2019 Best Children’s Hospitals ranking (Harder, Comarow; 2018).

Survey

In 2011, researchers from Cincinnati Children’s Hospital questioned if the range of bereavement services provided were consistent with those being offered at other pediatric facilities and to identify opportunities for improvement and expansion of the current bereavement program (Borgman, Meyer, Fitzgerald; 2014).

These exploratory study participants included primary bereavement specialists from each of the acute care hospitals or medical centers affiliated with the National Association Children’s Hospitals and Related Institutions that provided services to dying children (Borgman, Meyer, Fitzgerald; 2014). These included children’s hospitals, acute care hospitals with pediatric units and hospice facilities. This enabled the researchers to establish if there is a set protocol within these facilities or if one needs to be established.  Since Cincinnati Children’s Hospital already had a bereavement protocol in place, it will help to note any changes or improvements that might be needed or facilitated.

The survey used was valid in establishing their goals.  Of the 188 surveys emailed to the participants, 92% worked at pediatric hospitals or acute care hospitals with pediatric units. (Borgman, Meyer, Fitzgerald; 2014).  This makes the data easier to analyze and less likely to skew for adult bereavement.

Types of Support

 The support offered by facilities dealing with pediatric death varied.  98% of the hospitals provide some type of bereavement support including Memorial Services, counseling for parent and sibling, and grief related materials and information  (Borgman, Meyer, Fitzgerald; 2014).  90% of the respondents states they do some type of follow-up with frequency being different among the participants (Borgman, Meyer, Fitzgerald; 2014).  The most distinguishing difference noted in the study pertained to documentation.  Over two-thirds of the respondent’s document, but there is no consensus as to the proper way and place to document.  Location varied from databases created by individuals, chart of the deceased child, care plan or individual counseling note.  (Borgman, Meyer, Fitzgerald; 2014).

Organizational effect

 This study will improve Cincinnati Children’s Hospital bereavement program. Implementing new and streamlined ways to assist grieving families with the loss of a child.  Having set protocols and programs in place will make the adjustment process for family’s smoother.  Long-term follow-up and sibling programs will enable a stable recovery for the entire family, focusing on the whole family, not just the parent.  Death encompasses all and the need for support for the entire family is necessary.  This includes not just the nuclear family but also extended including grandparents and all affected by the loss. 

 In a hospital that cares for critically ill children, life and death becomes a way of life.  If a hospital can cope with the tragedy of pediatric death as well as it deals with life, it can be one of the most effective children’s hospitals.  This is evident in Cincinnati Children’s rise to number 2 in the nation in pediatric care. 

 Changes

 I would not make any initial changes to this survey.  The information obtained is valuable to all who provide pediatric care.  I would complete a follow-up to this study focusing on the parent’s response to the grief assistance given to them.  The difficult part with this follow-up would be in the timing of the survey.  Each parent and sibling goes through the five stages of grief in their own time.  Establishing a time line for the administration of this survey would be difficult, but necessary.  The hospital does not want to come off as crass when sending the survey, but to portray it in the light of assisting and helping other families that are dealing with the grief over losing a child.  Parents who have lost children form a very strong bond with each other and response would be greater in taking this approach.

Conclusion

 Because the death of a child can be a uniquely devastating experience for families, it is critical that healthcare professionals provide follow-up information, referral, and/or services to support bereaved families (Borgman, Meyer, Fitzgerald; 2014).  This program needs to have full time management in large Children’s Hospitals.  Whether the chaplain manages this program, social services, or nursing it needs full time support.  This program can be a joint program administrated by a combination of all three departments to facilitate smooth transition.  Directing bereaved parents to available support when their child dies in a hospital should be comparable and treated as a discharge instruction (Borgman, Meyer, Fitzgerald; 2014).  If this became second nature to nursing staff, like the discharge instructions, it would streamline into daily nursing activities with ease.  Bereavement is not an easy conversation, especially with newly grieving parents, but the more discussions; the easier it will become.

APPENDIX 1

Bereavement Services Survey

Q1 What is the professional background of your bereavement coordinator(s)?

 Chaplain  Nurse  Social Worker Other (please specify) ____________________

Q2 What is the minimal educational requirement for your coordinator(s)?

No minimal requirement High School/GED Some College 2-year College Degree 4-year College Degree Master’s Degree Doctoral Degree

Q3 Do you, or any of the coordinators, have additional certification(s) related to bereavement?

No Yes (please specify the type of certification and from where) ____________________

Q4 To what professional organization(s) do you belong?

 American Academy of Bereavement (AAB)  Association for Death Education and Counseling (ADEC)  Association of Professional Chaplains (APC)  Canadian Association for Spiritual Care (CAPPE)  National Association of Catholic Chaplains (NACC) Other ____________________

Q5 What is the name of your facility?

OPEN RESPONSE

Q6 Which best describes your facility?

An acute care pediatric hospital Pediatric unit/services part of an acute care hospital Pediatric hospice facility Other (please specify) ____________________

Q7 How many pediatric deaths did your facility have in 2011?

In-patient Out-patient/off-site

Q8 How many FTE’s (Full-Time Equivalents) are dedicated to your bereavement program?

OPEN RESPONSE

Q9 How is your bereavement program funded?

 Fee for service  Fund-raising  Grants  Hospital/institution funded Other (Please specify) ____________________

Q10 Where is your bereavement program housed?

Pastoral (or Spiritual) Care Department Nursing Social Work or Social Services Hospice Palliative Care Housed independently or stand-alone department

Other (Please specify) ____________________

Q11 Do you offer a Memorial Service to families?

No Yes

Q12 Do you offer grief-related materials/information?

No Yes

Q13 Which of the following do you provide to families?

 Bereavement cards Personalized letter  Anniversary of death cards Other (Please specify) ____________________

Q14 What support groups do you offer?

 We don’t offer support groups Parents/Guardians  Siblings Other (Please specify) ____________________

Q15 What types of counseling, if any, do you offer to families?

 We don’t offer counseling Individual (over phone)  Individual (in person)  Group Other (Please specify) ____________________

Q16 Is the counseling you offer time-limited?

No Yes (What is the time-frame?) ____________________

Q17 Other than support groups or counseling, do you offer any additional types of support/services specifically for siblings?

No Yes (Please describe) ____________________

Q18 How long are families followed in your bereavement program?

We don’t do any follow-up with families Less than one year One year Two years Other (Please specify) ____________________

Q19 What is the frequency of the contact? (e.g., times per month)?

OPEN RESPONSE

Q20 Do you document the contact?

No Yes (Please specify how or when) ____________

Q21 Please describe any additional services – or support – you offer to bereaved families   that we haven’t asked about.

OPEN RESPONSE

Q22 Do you measure the effectiveness of your bereavement services?

No Yes

Q23 What method(s) do you use?

 Evaluation sent to family Focus group feedback  Follow-up phone calls  Pre-Intervention/Post-Intervention Grief or Depression Measurement Other ____________________

Q24 Do you have a committee that provides guidance regarding your Bereavement Program?

No Yes

Q25 What disciplines are represented on the committee?

 Chaplains   Child Life Doctors

 Nurses  Parents  Social Workers  Volunteers Other (Please specify) ____________________

Q26 What, if any, types of support are provided to staff involved in the care of a dying child?

 No types of support are provided to staff  Debriefings provided by support staff  Debriefings provided by an outside agency  Reflection time  One-on-one support  Peer support groups Other (Please specify) ____________________

Q27 May we contact you if additional information is needed?

No Yes

Q28 Would you like to receive a summary of these results?

No Yes

References

• Borgman, C. J., Meyer, M. C., & Fitzgerald, M. (2014). Pediatric Bereavement Services: A Survey of Practices at Children’s Hospitals. Omega: Journal of Death & Dying, 69(4), 421–435. https://doi.org/10.2190/OM.69.4
• Thienprayoon, R., Campbell, R., & Winick, N. (2015). Attitudes and Practices in the Bereavement Care Offered by Children’s Hospitals: A Survey of the Pediatric Chaplains Network. Omega: Journal of Death & Dying, 71(1), 48–59. https://doi.org/10.1177/0030222814568287
• Harder, Ben. & Comarow, Avery. (2018, June 26). Best Children’s Hospitals 2018-19 Honor Roll and Overview. Retrieved from https://health.usnews.com/health-news/best-childrens-hospitals/articles/best-childrens-hospitals-honor-roll-and-overview.
• About Cincinnati Children’s. (n.d.). Retrieved October 1, 2018, from https://www.cincinnatichildrens.org/about/mission