PEDIATRICS Vol. 122 No. 4 October 2008, pp. e799-e804 (doi:10.1542/peds.2007-3650)
ARTICLE |
Experience of Families During Cardiopulmonary Resuscitation in a Pediatric Intensive Care Unit
Departments of a Pediatrics
c Nursing, Loma Linda University Children's Hospital
b School of Allied Health Professions
d School of Science and Technology, Loma Linda University, Loma Linda, California
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ABSTRACT |
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 TOP ABSTRACT METHODSRESULTSDISCUSSIONCONCLUSIONSREFERENCES |
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OBJECTIVES. Having parents present during cardiopulmonary resuscitation is becoming a common practice in pediatrics. This study aimed to determine parents' perception of the effects of their presence during the resuscitation efforts of their child and whether they would recommend the experience to other families.
METHODS. This study included parents or guardians of children who underwent cardiopulmonary resuscitation, and died at least 6 months before the interview. After telephone consent was obtained, a survey questionnaire was completed. The interviewees answered whether they were asked to be present, whether they had physical contact with their child, and whether the experience frightened them or gave them and their child comfort. The interviewees were asked to express their feelings about what was helpful to them and what could be done to improve the experience.
RESULTS. A total of 41 interviews were conducted, and responders were divided into 2 groups: 21 in the present group and 20 in the not-present group for cardiopulmonary resuscitation. Twelve (60%) of those in the not-present group believed that their presence would have comforted the child, and 50% (10 of 20) believed that it would have helped them accept the child's death. Of those in the present group, 67% (8 of 12) believed that touching their child brought comfort, 29% (6 of 21) felt scared during cardiopulmonary resuscitation, 71% (15 of 21) believed that their presence comforted their child, and 67% (14 of 21) believed that their presence helped them adjust to the loss of the child. The majority in both groups (63% [26 of 41]) would recommend being present during cardiopulmonary resuscitation.
CONCLUSIONS. This study supports encouraging family presence during cardiopulmonary resuscitation. The majority of parents who had been present and those who had not been present believed that all families should be given the option to be present.
Key Words: families presence • cardiopulmonary resuscitation • pediatric intensive care
Abbreviations: CPR—cardiopulmonary resuscitation • PG—present group • NPG—not-present group
The American Academy of Pediatrics and other professional organizations1–3 have taken a position that family presence should be offered during cardiopulmonary resuscitation (CPR). Their recommendations have been encouraged by studies of families who speculated that they would want to be present if their child required CPR4–11 and the presumption that it may help them with the grieving process when there is a death.
Although families express a desire to be present, health care personnel do not always concur. Studies of health care professionals have shown that there is a wide variation of perception and practice for allowing families to be present during CPR.12–22 As noted, families in these published studies have been asked to imagine what they would want during CPR. This study is unique in that it was developed to examine parents' feelings about the actual experience of being present during CPR. We wanted to know whether they found the experience to be a negative or positive one, to determine whether they perceived that their presence helped them in the grieving process, and whether they would recommend the experience to other families.
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METHODS |
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TOPABSTRACTMETHODSRESULTSDISCUSSIONCONCLUSIONSREFERENCES |
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A survey questionnaire was developed with the guidance of our psychology faculty to evaluate retrospectively the experience of parents whose children experienced CPR and subsequently died in a PICU. The questions and interview were designed to give them ample opportunity to express any feelings that they would like to share. Questions structured for a yes or no response determined whether they were invited to be present, where they were located, whether they had physical contact with their child, and whether the experience frightened or gave them and their child comfort. The interviewees were asked to rate the degree to which being present comforted them or helped them to adjust to their loss on a scale of 1 to 5. Qualitative questions gave the interviewees an opportunity to express what they believed was helpful to them, what could be done to improve the experience, and whether they would recommend being present during CPR to other families. The institutional review board approved the survey, interview, and consent process.
The study population included families of patients who were admitted to a 25-bed PICU of a university children's hospital with a policy that encourages parents be offered the opportunity to be present during CPR. Physicians have discretion to determine whether family presence is appropriate. The mortality reports spanning a 4-year period (2002–2006) were reviewed to identify patients who fit the inclusion criteria. Families were chosen when their child had CPR and died at least 6 months before the interview. Families were excluded when they declined the interview, when the child died from nonaccidental trauma, or we were unable to obtain current contact information.
Interviews, consent, and questionnaire were scripted and conducted in English or Spanish, which were the only primary languages spoken by the participants. A pediatric critical care fellow and a pediatric resident were trained to conduct interviews. All interviews were taped and transcribed by the interviewers. The data were examined for total and percentage responses, and a 
2 analysis was used to compare groups and to look for relationships between variables within each group.
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RESULTS |
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TOPABSTRACTMETHODSRESULTSDISCUSSIONCONCLUSIONSREFERENCES |
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Of the 115 families who met the inclusion criteria, only 40 (34.8%) could be contacted. Seven of those families declined the interview, and 33 agreed to participate, which resulted in 41 interviews. In 4 families, both the father and the mother were interviewed. The participants included 30 mothers, 9 fathers, and 2 grandmothers who were the child's guardians at the time of death and are subsequently identified as mothers. Responders were divided into 2 categories: the present group (PG) and the not-present group (NPG) for CPR.
There were no statistical differences between the groups for gender of the parent, age of the patient, and time elapsed from death to interview (Table 1). When the patient was previously healthy, all families wished that they had been present, whereas only 47% of the chronically ill ones did (P = .09). When responders were asked whether they had any suggestions to improve the experience, mothers (61%) were more likely than fathers (0%) to have recommendations for improvement (P = .09).
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Not Present for CPR Responders (NPG)
Twenty participants were in the NPG; 9 (45%) of them were not in the hospital at the time of CPR and could not be invited to be present, whereas 8 (40% of NPG and 19.5% of total interviewed) were not invited to be present during CPR (Table 2). Two declined the invitation to witness CPR, and 1 person responded, "Don't know," to this question. Of those who were not present, 11 (55% of NPG) wished that they had been given an opportunity to be there for the CPR.
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Of those not present, a majority (60%) believed that their presence would have given comfort to their child. When asked to rate the degree of comfort that being present would have brought to their child, the mean was 4.7. One parent said, "I think he felt forgotten in the end... . I still think he could hear me after he had died." Another parent who did not believe that her presence would have comforted her child said, "They told me at that point that he already didn't feel anything, so I don't think so." Half of the NPG believed that their presence would have made acceptance of the child's death easier with a mean degree of acceptance of 4.6. A parent who did not agree commented, "I would have been a lot more scared about it all."
When this group of parents was asked, "What do you think might have been different if you would have been present for CPR?" 8 (40%) expressed a feeling that the child's death would have been harder to deal with. On the contrary, 7 (35%) believed that it would have made it easier for them to deal with the child's death. One response was, "Maybe if I did, I would have known they did everything they could. When you aren't there, you don't know if they did everything." An additional 3 (15%) thought that being present would have given them the opportunity to comfort their child. One responder believed that the outcome would have been different saying, "Sometimes I feel like if I was present he might still be alive."
In the NPG, half said that they would recommend to another parent that they be present during CPR. One added that if parents were present, then they "would feel more peaceful. I always feel a little bad that I could not be there." Nine (45%) said that they could not recommend one way or the other but thought that all parents should be given the opportunity. A parent with this view said, "Some people would not be able to handle it, and other people would want to have that as a final attempt, and they witnessed that everything was done that could be done."
When asked to name something that the staff could have done to help during the CPR, 9 (45%) believed that there could have been better staff updates regarding the resuscitation. One parent's suggestion was to "explain to me what they are doing to my baby and why they felt the need to do CPR on him. At that moment you don't think to ask, but then you go home for the next couple of months and think, ‘Why didn't I ask?’" Two (10%) wished that they had been given the opportunity to be in the room for the CPR. Five (25%) believed that there was nothing that they could suggest to improve the experience.
Present for CPR Responders (PG)
Twenty-one were present for the CPR of their child (Table 3); 9 (43%) were just outside the glass-enclosed patient room, where they could witness the CPR, 4 (19%) were just inside the room, and 8 (38%) were near the bed. Seventeen (81%) said that they were happy with where they were located during the code. A parent who wished to have been closer said, "I would have liked to have been at the head of the bed whispering in his ear that everything was ok... . To comfort him, if he could hear, that someone he knew was there, and help him not be so scared."
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Twelve of those present were able to have physical contact with their child, and 8 (67%) of those believed that physical contact was helpful for them. For one mother, holding her son's hand was not enough, saying, "I wanted more than that, I wanted to hold him." A parent who did not think that contact was needed said, "I kinda wanted to watch and keep my distance, so the doctors could do everything that they needed to do."
Six (29%) interviewees reported feeling scared during the CPR. Some parents qualified their feelings of fear with comments such as, "The whole thing was frightening, but not particularly the CPR," and, "Not because the CPR was happening, just that my baby might not make it through it." One parent who did not report being scared added, "My concerns for my son drowned out the frightening part. I just wanted to focus on my baby."
Fifteen (71%) believed that their presence comforted the child and rated that comfort as a mean score of 4.5. Some pondered whether their presence helped the child, making comments such as, "I don't even know if he knew I was there. He was unconscious the whole time," and, "I think by that point he didn't feel anything." Fourteen (67%) of the parents believed that it helped their adjustment to their child's death, with a mean help scale rating of 4.6. One parent who felt strongly about this said, "Did you guys do everything you were capable of doing? And at least I got to touch him, and see that they did."
The first qualitative question presented to the PG was to name something that helped most during the experience. Nine (43%) mentioned being there for the CPR as the thing that helped them the most. One parent related the following experience, "Everybody worked together as a team. They kept trying. It wasn't just 1 person, it was all of them. And now I can actually say that they cared a lot about me. You never see doctors cry. To see them cry, it was like, dang, you know, they have feelings, too..., but to actually see it in front of me, that meant a lot to me." Another parent added, "I know they did everything they could for him." Five (24%) cited the staff's attention, and frequent updates aided them the most. Another parent expressed how helpful it was to be with her child, saying, "That I got to touch him, and he knew that there weren't just strangers around."
When asked what the hospital staff could have done to help during CPR, 76% of those present for the CPR stated that there was nothing that they could recommend to improve the situation. One person mentioned better staff attention. Another said that they thought the staff were being too unprofessional during the code, "Sometimes I felt like the staff was too detached. Like making jokes and even laughing. They could have been more sensitive." The other 4 (19%) had no recommendations.
Of those present during CPR, 76% (16 of 21) said that they would recommend that other parents be present. One father stated, "If, God forbid, one of my other sons went through something like that, I would want to be there to know they tried their best." Four of the PG responders did not have an opinion but believed that every parent should be given the option. One parent stated, "It just depends on the parent. If they can handle it or not, because it is something that is very hard to see." Another responder in this group believed that parents should not be present and should not be invited to do so, specifically stating, "I think the doctor should say, ‘Just wait in the waiting room, we'll do all we can.’... You are not allowed to watch an operation. Basically it's the same thing."
2 analysis of the PG resulted in only 1 statistically significant relationship and some interesting observations. Parents of older patients were more likely to prefer being closer to the bed; 30% of parents of the patients who were 
40 months of age said that they would like to be closer, whereas none of the parents of patients in the younger age groups felt that way (P = .04). One surprising response was that fathers were more likely to be frightened during the CPR than mothers (60% of fathers reported fright, whereas only 20% of mothers reported it; P = .09). This leads to the next observation that fathers (40%) were more likely to leave during CPR than mothers (7%; P = .07).
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DISCUSSION |
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TOPABSTRACTMETHODSRESULTSDISCUSSIONCONCLUSIONSREFERENCES |
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Family-centered care is a growing movement in pediatric health care. Family-centered approach to care has led to changes in policies, including allowing 24-hour visitation, parents' participating in rounds, families' being presence during CPR, and parents' calling medical rapid response teams. The practitioner's acceptance of family presence during CPR has seemed to evolve into more acceptance of the practice. A study in 2002 by O'Brien et al19 surveyed 245 pediatricians; 65% said that they would not allow family presence during CPR. A more recent study by Gold et al22 in 2006 surveyed 543 pediatric critical care and emergency department physicians, and 83% reported participation with family members present. When asked whether they would allow family presence during CPR, 93% agreed that they would. With the increased acceptance and practice of family presence during CPR, the opinions and perceptions of parents who have experienced the event are increasing in importance. In this study of those who stayed, many believed that the experience was comforting for the child and themselves. Those who related these feelings felt strongly about it, as shown by the high ranking when scaled from 1 to 5 with all having a mean >4. Many parents who were not present regretted not being able to comfort their child in the last moments of life.
Comparing the PG and NPG on the question of what could improve the CPR experience, 76% of those present said that nothing more could be done to help the situation, whereas only 25% of those not present had similar sentiments. This suggests that those who were present for CPR were more satisfied with their experience than those who were absent. A study by Mazer et al23 reported the results of a telephone survey of 408 respondents, and nearly half (49.3%) agreed that they would want to be present while CPR was performed on a loved one. When asked whether family members have the right to be present in the room, 46.8% agreed. This suggests that family members may soon be expecting to be present for the CPR of a loved one.
Practitioners express concern that family presence may increase staff anxiety and affect their performance. This concern is warranted during the high-stress environment of CPR. To defuse stress, often staff may look to humor to reduce tension. The parent's comment that the staff seemed to be detached while making jokes and laughing may stem from an attempt by the CPR team to reduce stress rather than a lack of compassion; therefore, it is valuable to learn how parents perceive the actual experience of CPR presence. We can then modify our practices to ensure that our behavior does not add to parents' distress and pain.
The patient population in this study included only patients who died after CPR. If a similar study were to be performed of families of patients who survived CPR, then the results may be different. As seen in the articles on physicians' opinions on family presence during CPR,23 practitioners believe that presence during CPR is more important when the patient dies during the resuscitation. It is usually difficult to determine whether the CPR being performed would be the patient's "last CPR" or the patient will survive; therefore, most practitioners exclude families from witnessing the event. On the basis of the results of this study and the explicit comments of parents who experienced the death of their child after CPR, however, the motivating factor for family presence during CPR should be the parent's desire to be with his or her child, not the practitioners anticipated outcome of the CPR.
It is difficult for caregivers to predetermine which families will benefit from being present during CPR and which may be frightened, experience psychological trauma, or regret the experience. In the PG, 29% reported feelings of fear during the CPR. In a small study of family members who were present for CPR, it was found that no reported adverse psychological effect was experienced by those who witnessed CPR for a dying relative, and they were satisfied with their decision to remain for CPR.24
Limitations of this study include our inability to locate a significant number of families. As a retrospective study, recall may have been jeopardized by time lag and also by the emotional trauma of the event. This study was not a randomized, controlled investigation because this would have gone against the policy of the PICU and the current recommendations of many professional organizations. In fact, the only previous study done with that design was concluded early22 because of ethical concerns that they were withholding something obviously beneficial by not allowing the family members to be present during CPR.
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CONCLUSIONS |
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TOPABSTRACTMETHODSRESULTSDISCUSSIONCONCLUSIONSREFERENCES |
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This study supports the recommendations of the American Academy of Pediatrics to encourage family presence during CPR. Most important, the majority of parents in this study, regardless of whether they were or were not present for CPR of their child, believed that all families should be given the option to be present. Practitioners must be sensitive to families' wishes and allow them to be present during CPR. Institutions that care for children need to develop policies to train personnel to allow family presence during CPR, ensuring that supportive staff are with them during this stressful experience, give them adequate updates during the CPR process, and present a professional and caring attitude toward the child and the family.
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FOOTNOTES |
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Accepted Jul 1, 2008.
Address correspondence to Cynthia Tinsley, MD, Loma Linda University, Pediatric Critical Care Division, Department of Pediatrics, CPA 1120M, Loma Linda, CA 92350. E-mail: ctinsley{at}llu.edu
The authors have indicated they have no financial relationships relevant to this article to disclose.
| What's Known on This Subject Allowing families to be present during CPR is controversial. Studies to date have asked parents to speculate whether they would want to be present for CPR, and most believe that they would want to stay.
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| What This Study Adds This study is unique because it examined family members' feelings about the actual experience of being allowed to be present or being barred from presence during CPR in a PICU.
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PEDIATRICS (ISSN 1098-4275). ©2008 by the American Academy of Pediatrics
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