For Whom The Bell Tolls . . .
Article Outline
Although the concept of “family-centered care” is nearly a half a century old, its impact on changing the “hospital culture” is most apparent over the last two decades.1 Listening to and understanding the parental perspective regarding death follow-up meetings is an implementation of family-centered care values within our hospitals and medical practice. Many books and medical journals have reported the emotions and opinions of parents during the days, months, and years after the death of their child.2, 3, 4, 5 One of the recurring themes is the parents’ need for information about their children’s hospital care and death. In addition, parents reflect on the quality of communication (verbal and nonverbal) that existed between the family, physicians, nurses, and staff. How do physicians and hospitals facilitate these well-documented parental needs? Are we providing a service that parents find beneficial? An evaluation of a parent’s perspective regarding death follow-up meetings would be desirable to provide insight into our practice methodology to achieve these family-centered goals.
See related article, p 50
In this issue of The Journal, Meert et al6 report a descriptive survey of the parent’s perspective of the desirability, content, and conditions for physician-parent meeting after the death of their child in the ICU. The parental responses were obtained by telephone interview after initial contact by mail. Parental responses were documented on several important issues, including the parent’s desire to meet with the physician, timing and location of the meeting, and who would attend the meeting. Limitations of the study are 1) a relatively small sample size, 2) the interviews were conducted within a time span of 4 to 15 months after the child’s death, and 3) parental responses were obtained from only English- and Spanish-speaking participants, thus potentially limiting data concerning cultural variation. Despite these limitations, valuable insights are provided about parents’ perspectives of medical practice after the death of patients, and these insights should encourage us to examine our death follow-up meeting practices.
Not surprisingly, 59% of parents desired to meet with the child’s intensive care physician at some point. Unfortunately, only 13% of parents had a scheduled meeting with any physician to discuss their child’s death; 82% of the participants were willing to return to the hospital for a scheduled meeting to discuss events leading to pediatric ICU admission and death, cause of death, treatment, autopsy results, and seeking advice about how to communicate about the death with other family members. Clearly, parents desire to participate in death follow-up meetings. Some that chose not to follow up commented that they were satisfied with the information already provided. The median time of request for interview was 8 months after the child’s death. Such postponement may have influenced some parents not to participate, especially if the parents felt there was no new information to be shared. Slightly more than one third of those parents who did not wish to return for a meeting stated that they were dissatisfied with the physician’s availability and communication skills. Parents requested an appointment that would include both parents; some preferred the inclusion of a grandparent and one of the child’s ICU nurses.
When is the appropriate time to hold death follow-up meetings? Loss and helplessness are two painful and paralyzing conditions that overwhelm a family after the death of a child.2 The literature suggests that families may be in an emotional and cognitive “fog” during the immediate days after the death. Perhaps these meetings should be scheduled after the preliminary autopsy results are available. In most cases, preliminary autopsy results should be available by 4 to 6 weeks after the death. Reviewing the details of the death and autopsy results will reinforce the medical history, recognizes the existence and value of the child’s life, and provides a healing opportunity for the follow-up team to attempt to dispense any feelings of parental guilt.2 Meeting with the family may or may not provide new medical information; however, availability demonstrates our “willful connection” to the family. Nonabandonment represents a central ethical obligation for physicians to our patients and their families.7
Who should be invited to death follow-up meetings? Parents in this study chose their closest support person-usually a spouse. Some requested the child’s grandparents or another family member who might help the parents facilitate communication of medical details to other family relatives. Not only is the death follow-up meeting an informative and healing service to the family, but it is also an educational opportunity for physicians and the entire health care team. Therefore, fellows and residents, who may have developed a close rapport with the family, should be included as well. How else is their education in the conduct of this sensitive meeting to be developed? Exposure and participation in this activity will strengthen their ability to communicate effectively and with appropriate empathy and sensitivity.8
The complexities and pitfalls of communication between physicians and parents are well described in the article by Fox et al.9 Parents who cited dissatisfaction with the physician’s availability and communication skills provide us with an opportunity to improve our communication practices in intensive care medicine and to avoid parental feelings of mistrust.
How we communicate with families about palliative care and end-of-life issues during the hospitalization of their children significantly affects the success of future communications with the families.4, 9, 10 Quill et al10 have examined our responses during end-of-life situations and have provided instructive advice on empathic communications with families.
It is encouraging to see a study that examines the parental perspective of death follow-up meetings. The Institute of Medicine Committee on Palliative and End-of-Life Care for Children and Their Families has endorsed further scientific research regarding this subject and recommended that the NIH establish priorities to fund studies in this area.11 Further studies involving family death follow-up meetings will provide insights into the communication practices used in our pediatric and newborn intensive care units. These insights should provide direction for future investigation to improve the quality of our practice. Evaluating the parental perspective on our death follow-up practices is a challenge for all health care providers to “look into the mirror” and see the reflection of our communication skills and humanity. Will we like what we see?
Who benefits by participating in death follow-up meetings? We all do. Perhaps the seventeenth century writer John Donne had death follow-up meetings in mind when he wrote, “[A]ny man’s death diminishes me, because I am involved in mankind, and therefore never send to know for whom the bell tolls; it tolls for thee.”12
References
- . Family-centered care and the pediatrician’s role. Pediatrics. 2003;112:691–696
- . In: The Worst Loss: How Families Heal from the Death of a Child. New York: Henry Holt and Company, LLC; 1994;p. 290
- . Parents interviewed after their child’s death. Arch Dis Child. 1986;61:711–715
- . Improving the quality of end-of-life care in the pediatric intensive care unit: parents’ priorities and recommendations. Pediatrics. 2006;117:649–657
- . In: After the Death of a Child. New York: The Free Press; 1996;p. 1–273
- Parents’ perspectives regarding a physician-parent conference after their child’s death in the pediatric intensive care unit. J Pediatr. 2007;151:50–55
- . Nonabandonment: a central obligation for physicians. Ann Intern Med. 1995;122:368–374
- . Medical education about end-of-life care in the pediatric setting: principles, challenges, and opportunities. Pediatrics. 2000;105:575–584
- . Talking About the Unthinkable: Perinatal/Neonatal Communication Issues and Procedures. In: Hermansen MC editors. Clinics in Perinatology. Philadelphia: Elsevier; 2005;p. 157–170
- . ‘I wish things were different’: expressing wishes in response to loss, futility, and unrealistic hopes. Ann Intern Med. 2001;135:551–555
- . In: When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families. Washington, DC: National Academies Press; 2003;p. 1–16
- . In: Devotions Upon Emergent Occasions: Meditation XVII. London: John W. Parker; 1839;p. 574–575
PII: S0022-3476(07)00381-2
doi:10.1016/j.jpeds.2007.04.038
© 2007 Mosby, Inc. All rights reserved.
Refers to article:
- Parents’ Perspectives Regarding a Physician-Parent Conference after Their Child’s Death in the Pediatric Intensive Care Unit
