Historically, in the emergency department, family

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1 Research Do families want to be present during CPR? A retrospective survey Authors: Theresa A. Meyers, RN, BSN, CEN, CCRN, Dezra J. Eichhorn, RN, MS, CNS, and Cathie E. Guzzetta, RN, PhD, FAAN, Dallas, Tex Introduction The purpose of this study was to interview families who had experienced the death of a loved one to determine their desires, beliefs, and concerns about family presence during CPR. Methods A retrospective, descriptive telephone survey of families of patients who had died because of traumatic injuries while in an emergency department was used. A family presence survey was developed to determine the desires, beliefs, and concerns about family presence during CPR. Results Of the 25 family members surveyed, 80% said they would have wanted to have been in the room during CPR had they been given the option (desires), 96% believed that families should be able to be with their loved ones (beliefs), 68% believed that their presence might have helped their family member (beliefs), and 64% believed that their presence would have helped their sorrow following the death (beliefs). Major themes from family concerns were worry about the seriousness of the patient s condition and whether the patient would survive the resuscitation. Discussion Family members strongly support having the option of being present during CPR. Health care providers should explore ways to implement this program to best meet the needs of families. (J Emerg Nurs 1998;24:400-5) Historically, in the emergency department, family members are prohibited from being present in the room while CPR is in progress. This practice was questioned more than 15 years ago by health care Theresa A. Meyers is Unit Manager, Emergency Services Department, and Dezra J. Eichhorn is Trauma Psychosocial Clinical Nurse Specialist, Trauma Services Department, Parkland Health and Hospital System, Dallas, Tex. Cathie E. Guzzetta is Director, Holistic Nursing Consultants and Nursing Research Consultant, Children s Medical Center of Dallas and Parkland Health and Hospital System, Dallas, Tex. Copyright 1998 by the Emergency Nurses Association /98 $ /1/93508 providers at Foote Hospital in Michigan following 2 CPR situations in which family members demanded to be present. Following these events, the Foote Hospital team conducted a retrospective survey to determine whether family members who had recently experienced the death of a loved one would have wanted to be present during CPR attempts. 1 The results revealed that 13 of 18 families surveyed (72%) wished they had been present during the resuscitation attempt. At our institution not long ago, a similar situation occurred in which the parents of a 13-year-old boy who had been critically injured wanted to see their son while CPR was in progress. One of our experienced trauma nurses (TM), who assessed that bringing the parents to their son s bedside was the right thing to do, was able to overturn institutional routines and obtain approval from the physician in charge of the resuscitation to bring in the parents. Following this incident, we decided to develop a family presence during CPR program and immediately encountered a great deal of resistance from our colleagues. To pave the way for such a program, we decided to follow the path used by the Foote Hospital researchers. We believed that by replicating and expanding their retrospective survey, we could determine whether the findings from their study could be generalized more than a decade later to the families being served by our large Southwest regional, county, teaching hospital. We envisioned that this survey would provide data to justify implementation of such a program at our institution. Thus the purpose of this descriptive, retrospective, telephone survey was to interview family members who had recently experienced the death of a loved one to determine their desires, beliefs, and concerns about the option of being present during CPR. To achieve this purpose, the following research questions were posed for family members who had recently experienced the death of a loved one while in the Emergency Services Department: 1. What are the family members desires, beliefs, and concerns about the option of being present during CPR? 400 Volume 24, Number 5

2 Meyers, Eichhorn, and Guzzetta/JOURNAL OF EMERGENCY NURSING 2. Does a relationship exist between selected demographic data (ie, patient s age and family member s age, education, gender, religion, and relationship to patient) and the family members desires and beliefs about the option of being present during CPR? Review of literature During the past decade, a few informal attempts have been made to survey health care providers about their perceptions regarding the presence of family members during CPR. 2,3 Although the literature suggests that family presence is an appropriate intervention for some grieving families, 4 only one evaluative study on this practice could be found. This study, conducted by the same Foote Hospital researchers who conducted the retrospective study, determined the responses of family members and health care providers who had been present during CPR. 1,5,6 Of the 47 family members who had been present during a resuscitation and responded to the survey, 100% of them believed that the health care team had done everything possible for their loved one. Thirty-six respondents (76%) believed that their adjustment to death had been made easier and their grieving facilitated because they had been present. Thirty respondents (64%) thought that their presence had been beneficial for the dying family member. Forty-four of the 47 respondents (94%) reported that they would be present again during CPR if given the opportunity. Twenty-one staff members (12 nurses, 6 clerks, and 3 physicians) also completed surveys. Although approximately 30% of the staff members reported feeling anxious about their job performance or about possible emotional family disruptions, 71% endorsed the practice of having family members present during CPR. During the period of this study, the hospital s Advanced Cardiac Life Support Committee also reviewed all the resuscitations and found no apparent differences in the activities of the code team during cases that included family participation and other cases. In addition, no events of family disruption or interference were reported. The current movement toward having family members present during CPR is demonstrated by the increasing number of articles published on this topic. In these publications, most authors discuss their experience with family members being present in the hospital setting 2,6-13 and reveal diverse beliefs ranging from those of advocates who support a holistic, patient-family focus to those of opponents who uphold traditional, paternalistic practices In the majority of medical and nursing literature, fears and concerns commonly expressed by health care providers about family presence are disclosed; however, it is evident that many persons who have participated in cases in which family members were present during CPR found that the benefits outweighed the risks. 6-8,17 Although none of these articles is research based, most authors recommend the need for further validation of this practice. The family presence movement was further advanced in 1993, when the ENA responded to the interests voiced by emergency nurses regarding this practice and developed an unprecedented resolution in support of family presence during resuscitation or invasive procedures. 18 In 1994, to make this resolution operational, an 84-page educational booklet outlining family presence guidelines was developed to assist nurses nationwide in implementing family presence programs at their facilities. 19 Methods For families who had recently had a family member die while in the Emergency Services Department, a descriptive, telephone survey was used to obtain information about their desires, beliefs, and concerns related to the option of family presence during CPR. Sample/setting In a 12-month period, 204 trauma patients died at our hospital, and 94 of those patients died in the Emergency Services Department. A convenience sample of family members of these 94 patients was identified and contacted by phone until a total of 25 Englishspeaking family members were interviewed. All telephone interviews were conducted in a quiet office located within a 1000-bed hospital. This hospital is the largest teaching, medical facility in the Southwest and is a regional level I trauma center that provides emergency care 24 hours a day to all patients regardless of financial status. More than 400 patients are triaged per day, and 146,000 patients are treated annually. Instrumentation A retrospective family presence (RFP) survey was developed by the investigators to determine the desires, beliefs, and concerns about the option of family presence during CPR of families who had recently had a family member die while in the Emergency Services Department. The RFP survey is divided into 2 sections with a total of 16 items. Section I consists of 11 patient and family demographic and medical record items; section II consists of 5 structured survey questions (Table 1) with one question measuring desires, 3 questions measuring beliefs, and one question measuring concerns about family presence. The struc- October

3 JOURNAL OF EMERGENCY NURSING/Meyers, Eichhorn, and Guzzetta Table 1 Family presence during resuscitation retrospective structured survey questions Section II 1. If you had been given a chance, would you have wanted to be brought into the room of your loved one just before death while CPR was going on? Yes (Why?) 2. Do you believe that families should be able to be with their loved one just before death, if they want to? Yes (Why) 3. If you had been given a chance to go into the room, do you think it might have helped (patient s name)? Yes (How so?) 4. If you had been given a chance, do you think it would have helped you with your sorrow and sadness after the death of (patient s name)? Yes (How so?) 5. If you had been given a chance to go into the room, what concerns or questions do you think you might have had? Please explain. tured survey with open-ended questions was designed to systematically gather as much information as possible about these concepts. These questions (Table 1) were adapted and expanded from the retrospective and evaluative Foote Hospital studies. 1,5,6 All telephone interviews, which averaged 40 minutes in length, were conducted by 1 of 2 nurse researchers (DE and TM) with use of a standardized script. All family members received an explanation of the purpose of the interview, the extent and voluntary nature of their participation, and a promise of confidentiality. Consent to participate in the study was implied when the respondent agreed to be interviewed. Demographic data were obtained first, and then responses to the 5 structured survey questions in section II were recorded. All responses were hand written on the survey tool by the interviewer as close to verbatim as possible. To establish content validity of the tool prior to its use, the RFP survey was submitted to a panel of nurse content experts to determine the relevancy and clarity of the questions. On the basis of their recommended changes, the survey was revised. To determine inter-rater reliability of the interview data, the 2 nurse interviewers were paired during 6 family member telephone interviews in which they alternated acting as the primary interviewer. During these 6 interviews, they both simultaneously listened to the respondent s answers on a speaker phone and independently recorded the responses on the RFP survey. The written responses from section II of these 6 interviews were analyzed by an independent nursing research consultant (CG) to determine the degree of agreement between the 2 researchers in recording major concepts, words, phrases, or sentences from each interview. The inter-rater reliability coefficient based on percent agreement from this data was From these 6 interviews, it also was learned that asking families first about their well-being and general experiences at the hospital was a desirable approach to use to begin the interview. Data analysis All parametric and nonparametric data were analyzed using SPSS for Windows. The level of statistical significance was set at Frequencies, means, medians, variances, standard deviations, and frequency distributions were computed for all demographic variables and for the nominal data (yes/no answers) of section II (Table 1). In addition, analyses were run on selected demographic data and questions 1, 2, 3, and 4 of section II (Table 1) using a two-tailed Fisher s exact test. Content analysis also was used to identify categories of qualitative responses for each question in section II. The unit of analysis was the word, phrase, or sentence that expressed the respondent s desires, beliefs, and concerns. Results Twenty-five family members of 18 patients who had undergone CPR and died in the Emergency Services Department during a 12-month period were interviewed by telephone. All interviews took place between 8 weeks and 15 months (mean, 7.5 months) after the patient s death. The mean age of the 14 male and 4 female patients was 33 years (range, 8 to 90 years). Ninety-five percent of the patient deaths were caused by traumatic injury, and all occurred within an average of 1 hour after admission. Family members interviewed were on average 42 years of age (range, 13 to 73 years) with a mean educational level of 13 years (range, 7 to 17 years). Sixtyeight percent (n = 17) of the respondents were female. The primary religious preferences of the respondents were Baptist (44%), Catholic (20%), or Jewish (8%); 84% (n = 21) reported that they were actively participating in religion. The relationship of the respondents to the patients who died included parent (n = 9; 36%), child (n = 4; 16%), sibling (n = 4; 16%), spouse (n = 3; 12%), and other (n = 5; ie, uncle, girlfriend, ex-wife, mother-in-law, and grandmother). In response to the first question measuring family members desires (ie, If you had been given a 402 Volume 24, Number 5

4 Meyers, Eichhorn, and Guzzetta/JOURNAL OF EMERGENCY NURSING Figure 1 Four structured survey questions measuring the desires (A) and beliefs (B, C, D) about being present during CPR. chance, would you have wanted to be brought into the room of your loved one just before their death while CPR was going on? ), 80% (n = 20) said yes and 20% (n = 5) said no (Figure 1). Major qualitative themes related to this question included statements such as I wouldn t want my loved one to die with strangers and It would be very important to be with him in his last moments of life. Families also wanted to be present to see and know that everything possible had been done. Families who did not want to be present explained that they would not have wanted to witness the resuscitation or death of their family member. The second, third, and fourth survey questions measured family members beliefs about family presence. In response to the question Do you believe families should be able to be with their loved one just before death if they want to?, 96% (n = 24) said yes and 4% (n = 1) said no. Themes that supported this affirmative response included beliefs that patients are not hospital property and that families need to be given an option and a choice. Family members also believed that they had a right to be present but only if they could handle it emotionally. One woman said, We see stuff like this on tv it s not such a shock for people. Families will know if they can handle it. In answer to another belief question, If you had been given a chance to go into the room, do you think it might have helped (patient s name)?, 68% (n = 17) said yes, 12% (n = 3) said no, and 20% (n = 5) were unsure (Figure 1). One woman believed that her presence might have eased her loved one into death. Others believed that their loved one would have known they were present. In response to the third belief question, If you had been given a chance, do you think it would have October

5 JOURNAL OF EMERGENCY NURSING/Meyers, Eichhorn, and Guzzetta helped you with your sorrow and sadness after the death of (patient s name)?, 64% (n = 16) said yes, whereas 16% (n = 4) said no and 20% (n = 5) were unsure. Family members believed that being present at the time of death would have given them the opportunity to say goodbye or say things that needed to be said and would have given closure to their relationship. One woman stated, I would have less guilt to cope with if I had been there. In response to the last question measuring family concerns (ie, If you had been given a chance to go into the room, what concerns or questions do you think you might have had? ), major themes from family concerns were worry about the seriousness of the patient s condition and whether the patient would survive the resuscitation. Family members were not as concerned about what they might see or hear as they were that their presence might disturb the medical team or hinder the patient s care. Others were unsure of what their concerns might be because, never having had such an experience, imagining what the resuscitation might be like was difficult for them. A significant difference was found between the relationship of the family member to the patient and the family member s belief that their sorrow and sadness would have been helped had they been given an opportunity to be in the room (Fisher s exact test, P =.03). The analysis revealed that respondents who were a parent or the spouse of the deceased patient believed that their sorrow and sadness would not have been ameliorated by being in the room. In contrast, respondents who were a sibling, child, or had some other relationship to the patient believed that their sorrow and sadness would have been lessened by being present. No other significant differences were discovered between other selected demographic data (ie, patient s age or the family member s age, educational level, gender, religion, or relationship to the patient) and the 4 yes/no questions in Table 1. Discussion In a discussion with key medical colleagues at our institution about setting up an optional family presence during resuscitation program, we were first challenged to demonstrate whether such a program might be desired by the population served by our institution. As a result, we replicated and expanded the questions that had been asked of family members at Foote Hospital in 1982 and ,6 Foote Hospital is a 500-bed, urban, community, nonteaching facility with a volume of 53,000 emergency patients treated per year. Despite considerable differences in location, size, volume of emergency visits per year, and teaching emphasis between Foote Hospital and our insti- tution, the findings that 80% of our families would have wanted to be present during CPR had they been given the option are consistent with the 72% who would have wanted to be present from the 1982 retrospective Foote Hospital study. In this current study additional questions were asked that were not included in the 1982 retrospective Foote Hospital study but were similar to those asked in the 1987 evaluative Foote Hospital study, in which family members were surveyed after they were present during CPR. 1 Our findings that 68% of the families believed that their presence might have helped their family member compares similarly with the 64% in the Foote Hospital study who believed that their presence was beneficial to their dying family member. Likewise, the 64% of our families who believed that their sorrow and sadness after the death would have been helped is relatively similar to the 76% in the Foote Hospital study who believed that their adjustment to death and their grieving were made easier. In expanding the Foote Hospital studies, we also asked 2 additional questions regarding beliefs and concerns. An overwhelming 96% of the families in this study believed that individuals have the right to be present if they so desire. These findings underscore the basic beliefs of our sample regarding the wholeness and integrity of the family unit at the time of death, which are needs that must be respected and supported rather than opposed through regulations by health care providers. In addition, we found that the greatest concerns of families were related to whether the patient would survive and whether their presence might somehow interfere with the resuscitation. Some families, however, were unable to voice any concerns because they did not know what to expect. This finding supports the importance of adequately preparing families for the experience before they enter the room. The finding that parents and spouses, in contrast to other family members, did not believe that their sorrow and sadness would be ameliorated by being present in the room during a resuscitation was an unexpected finding. We speculate that the parent/ spousal relationship is so intense that no intervention is possible in reducing the grief that follows the death of a child or spouse. However, because the numbers in this analysis were small, interpreting this finding with confidence is not possible. We believe that our retrospective survey helped justify the need for a family presence program. Conducting the survey was an important step in changing the institutional mindset regarding family presence and in implementing the practice within our 404 Volume 24, Number 5

6 Meyers, Eichhorn, and Guzzetta/JOURNAL OF EMERGENCY NURSING hospital. Currently we are conducting a funded, prospective study* to identify and describe the problems, benefits, feelings, attitudes, factors influencing decision making, and recommendations regarding family presence at the bedside during invasive procedures and resuscitation (using the ENA s family presence guidelines) of patients, family members, and health care providers involved in the experience. The findings from this research will capture an understanding of the experience and demonstrate the benefits and problems of implementing ENA s family presence guidelines. Conclusions The findings from this study reveal that family members strongly support the option of being present during CPR. Health care providers should explore ways to implement this program to best meet the needs of families. Acknowledgment We thank Elizabeth H. Winslow, RN, PhD, FAAN, Mary E. Mancini, RN, MSN, CNA, FAAN, Jorie Klein, RN, Kim Davies, RN, CEN, Ellen Taliaferro, MD, FACEP, and Philip Guzzetta, MD, for their thoughtful review of this article. References 1. Doyle CJ, Post H, Burney RE, Maino J, Keefe M, Rhee KJ. Family participation during resuscitation: an option. Ann Emerg Med 1987;16: Chalk AS. More on family presence during resuscitation [letter]. J Emerg Nurs 1994;20:87. *Family presence during invasive procedures/resuscitation. Researchers: Jorie Diane Klein, RN, Ellen Taliaferro, MD, FACEP, Dezra J. Eichhorn, RN, MS, Theresa A. Meyers, RN, BSN, CEN, CCRN, Thomas G. (Gil) Mitchell, MDiv, and Vicki Patrick, RN, MS, CEN. Funded by the Emergency Medicine Foundation/Emergency Nurses Association Foundation team grant for Osuagwu CC. ED codes: keep the family out [letter]. J Emerg Nurs 1991;17: Hampe S. Needs of the grieving spouse in the hospital setting. Nurs Res 1995;2: Post H. Letting the family in during a code. Nursing : Hanson C, Strawser D. Family presence during cardiopulmonary resuscitation: Foote Hospital emergency department s nine-year perspective. J Emerg Nurs 1992;18: Martin J. Rethinking traditional thoughts [letter]. J Emerg Nurs 1991;17: Yanks KK. More on family presence during resuscitation [letter]. J Emerg Nurs 1993;19: Reese V. Her husband was dying and she wanted to watch the code. Nursing ;April:32S-32V. 10. Kuek L. The least we can do [letter]. J Emerg Nurs 1992;18: Williams M. More on family presence during resuscitation [letter]. J Emerg Nurs 1993;19: Esperson S. ED s code [commentary]. Nursing ; June: Villaire M. Beth Henneman s ICU passion is all in the family. Crit Care Nurse 1994;October: Guzzetta CE, Mitchell TG. Response to high touch in high tech: the presence of relatives and friends during resuscitation efforts. Schol Inq Nurs Pract 1997;11: Huang T. By their side. Dallas Morning News 1997 Dec 8; Sect C: Shelton D. Being there. Am Med Assoc News 1997; 40: Eichhorn DJ, Meyers TA, Mitchell TG, Guzzetta CE. Opening the doors: family presence during resuscitation. J Cardiovasc Nurs 1996;10: Emergency Nurses Association. Resolution 93:02: Family presence at bedside during invasive procedures and/or resuscitation. General Assembly Park Ridge (IL): The Association; Emergency Nurses Association. Presenting the option for family presence [program educational booklet]. Park Ridge (IL): The Association; October