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Abstract |
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 Top Abstract Integrated Literature ReviewSurvey ResearchExperimental ResearchQualitative ResearchEthical-Theoretical PerspectivesCritique of the LiteratureReferences |
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Notice to CE enrollees:A closed-book, multiple-choice examination following this article tests your understanding of the following objectives:
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Standards for the way we deliver resuscitation care in the United States also radically changed when the American Heart Association7 recommended offering the option of FPDR to families in the association’s guidelines on cardiopulmonary resuscitation. Regardless of this paradigm shift and despite nurses’ professional obligation to meet the needs of patients and patients’ families, FPDR remains highly controversial among healthcare providers and thus is far from the norm in practice settings. Supporters of FPDR tend to emphasize the basic human right of patients and patients’ families for the families to be present. Some authors have argued that paternalistically protecting families by barring the families from the resuscitation room is no longer warranted because many bystanders witness critical events in the field. Because of television shows such as ER, many individuals have an idea of what they might see if they are present during resuscitation.8,9 Opponents of FPDR are concerned with possible disruption of the code team, traumatic memories for patients’ families, and the risk of litigation.
| Most patients’ families want to be present during resuscitation and would make the choice again.
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Integrated Literature Review |
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TopAbstractIntegrated Literature ReviewSurvey ResearchExperimental ResearchQualitative ResearchEthical-Theoretical PerspectivesCritique of the LiteratureReferences |
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The studies included in this review were identified primarily by using computerized literature searches of the CINAHL and MEDLINE databases. Key search words included family presence, resuscitative events, codes, invasive procedures, emergency department, and intensive care unit. Hand searching by reviewing the bibliographies of published studies was also used to locate relevant literature. Abstracts, conference proceedings, editorials, and anecdotal commentaries were excluded. Although no date restrictions were applied, the search was narrowed to empirical studies in adult populations only. Because a few studies had the dual purpose of investigating FPDR and invasive procedures, the critical review, organized by type of design, was narrowed to discussion of findings related to FPDR only. The scope of the review was international, yielding a total of 28 studies from 1987 to 2005 that met the preceding criteria. Table 1
outlines the methods and findings of the studies included in this review.
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Survey Research |
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TopAbstractIntegrated Literature ReviewSurvey ResearchExperimental ResearchQualitative ResearchEthical-Theoretical PerspectivesCritique of the LiteratureReferences |
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Survey Studies Focused on Patients and Their Families
In studies of perceptions and experiences of patients and their families with FPDR, researchers have enrolled small numbers of subjects, with sample sizes ranging from 24 to 200. In a study of family members who lost a loved one in the emergency department, Meyers et al15 found that 80% would have wanted to be present if the option had been offered to them. In other studies,2,3,5 94% to 100% of family members who participated in FPDR stated they would do so again in the future. Family members not only emphatically asserted that it was their right to be present but also relayed that FPDR was important and helpful to both patients and the patients’ families. Many family members thought that being present during resuscitation helped them comprehend the seriousness of the patient’s condition and know that everything possible had been done, and it eased their grieving.2,3,5,15 Meyers et al5 also found that no family members had traumatic memories 2 months after the event. In another retrospective survey,16 the majority of bereaved family members stated that they would have appreciated the offer to be present even though they might not have accepted.
| Patients’ families assert their right to be present during resuscitation and think that their presence is helpful to both the patients and the families.
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In other surveys, researchers inquired about the preferences of patients and the patients’ families with respect to FPDR. In the study by Grice et al,26 almost all patients and relatives thought that their preferences for FPDR should be sought before the patient was admitted to the intensive care unit. In another study,31 72% of patients and family members wanted their family present during their own resuscitation; positive responders tended to be younger and nonwhite. Family members most desired to be present were spouses, parents, and children.30,31 Additionally, in one study,30 for most adults, the strongest preference was attending the resuscitation of an adult relative or a minor child; the next, in order, was attending the resuscitation of a spouse.
Survey Studies Focused on Staff
Most FPDR research has been conducted at the descriptive level with staff samples. Hospital staff surveyed have predominantly included nurses and physicians from the emergency department and critical care units, with sample sizes ranging from 21 to 175, similar to those in the surveys of patients and patients’ families. Other researchers have recruited nurses, physicians, and other allied professionals to participate in FPDR surveys through professional organizations. The samples in these studies have been much larger (n = 208–1261).
Hospital Policies. In 2 studies,18,25 many nurses thought that hospitals should have clear policies about FPDR and that a staff member should be prepared to support families who choose to be present during resuscitation. Yet, in a sample of almost 1000 nurses,25 only 5% of staff worked in a unit that had formal policies about FPDR. Despite the lack of policies, more than one third of these nurses had taken patients’ family members to the bedside, and almost 25% would do so in the future. Similar findings were reported by Chalk,11 who found that almost 50% of the nurses with FPDR experience would do it again. In a prevalence survey of 172 emergency departments in the United Kingdom, FPDR was allowed by 79% of emergency departments.29
| Although a third of nurses take patients’ families to the bedside during resuscitation, only 5% of these nurses work in a unit with a family presence policy.
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FPDR Preferences. Weslien and Nilstun23 found that most nurses and physicians thought that few members of patients’ families would want to be present during a resuscitation. In the same study, almost twice as many nurses as physicians (20% vs 12%) stated that they would always respect the wishes of families who wished to be present. In contrast, Redley and Hood12 discovered that a significantly higher proportion of staff (62%) would consider inviting patients’ family members to be present under controlled circumstances.
When asked about their own preferences, staff have indicated strong support in favor of FPDR.12 More than half of nurses and physicians in 2 studies12,24 indicated personal preference for FPDR, although this preference was stronger among nurses in the study by Redley and Hood.12 FPDR was desired by nurses to fulfill many roles for patients’ family members such as giving comfort and reassurance, providing emotional and spiritual support, meeting the families’ expectations, providing knowledgeable explanations, advocating for correct procedures, exercising the belief that FPDR is a "right" and not an option, assisting in end-of-life decision making, and facilitating grieving.24
Advantages and Disadvantages. Staff members have reported several advantages of FPDR. Advantages include helping meet the emotional and spiritual needs of patients’ families and assisting families to understand the patient’s condition and to appreciate that the code team did its best to help the patient.5,12,29 Only 15% of staff in the study by Meyers et al5 thought that resuscitation efforts were more aggressive than the efforts would have been if the patient’s family had not been present.
Alternatively, staff members have expressed more disadvantages than benefits associated with FPDR. Namely, they perceive that FPDR could interfere and disrupt the resuscitation process by impairing the function of the code team. In an early study,2 such attitudes were especially prevalent before implementation of FPDR programs. Additionally, many staff members worry about performance anxiety and that not enough personnel will be available to fully support patients’ families because of the focus on resuscitation care.2,28 All of these reasons may explain why healthcare providers often think FPDR would increase their stress. In a descriptive survey by Boyd and White,20 almost a quarter of staff reported 2 or more symptoms of acute stress after a nontraumatic adult code; however, the staff members’ symptoms did not differ between codes with and codes without FPDR.
| Concerns that having a patient’s family present during resuscitation would be disruptive and traumatic psychologically for the family are unsubstantiated.
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Staff members’ concerns about the effect of FPDR on patients’ families generally are related to fears that the public is not equipped to deal with being present during a code. As a result, the procedures that patients’ families witness could lead to psychological trauma. Such untoward responses during the resuscitation could also interfere with the performance of the code team because of demands on the team’s time. Other staff members worry that their own behavior during the code could be offensive to patients’ families.12,16,22,24,26,28 Nurses in the study by Ellison24 were concerned about the limited capacity of patients’ families to understand what the families were observing during a code. This concern could partially explain why so many staff members cite potential litigation as a major disadvantage of FPDR. However, no evidence indicates any litigation arising from FPDR. And despite these overall perceived risks, Booth et al29 found that few problems with or interference by patients’ family members were encountered during FPDR in 172 emergency departments surveyed in the United Kingdom.
| No evidence supports the notion that litigation occurs as a result of family presence during resuscitation.
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Role Differences in FPDR Support. As the preceding discussion suggests, researchers have found various levels of support for FPDR among healthcare providers. Mitchell and Lynch13 found that 63% of nurses and physicians in the emergency department were not in favor of FPDR. Similarly, more than 75% of Asian nurses and physicians in one study28 did not think that patients’ relatives should be present during resuscitation. Large surveys of professional organizations have also found disparate results among nurses and physicians. Helmer et al19 found that more members of the American Association for the Surgery of Trauma (AAST) than members of the ENA thought that FPDR was inappropriate during all phases of resuscitation because it would interfere with patients’ care and increase the stress of the trauma team. Furthermore, more AAST members did not think that FPDR was a right of patients. Although most AAST and ENA members had experience with FPDR, impressions of the experience differed widely; 64% of ENA members and only 18% of AAST members indicated that FPDR was beneficial. In another large survey by McClenathan et al,22 fewer physicians (20%) than nurses and allied health professionals (39%) would allow FPDR in adults. Interestingly, nurses were more likely than residents to support FPDR, and more attending physicians than residents supported FPDR.5 In the study by Ong et al,28 more nurses than physicians thought that the decision to allow FPDR should be a team decision, whereas physicians thought that the senior medical officer should have decision-making authority.
Mitchell and Lynch13 found that FPDR was more likely to be adopted by healthcare providers with higher seniority, which coincided with increased experience, confidence, and competence in dealing with resuscitation procedures and distressed members of patients’ families. Higher education, specialization in emergency nursing, ENA certification, and practicing in Midwestern states were other factors that correlated positively with FPDR attitudes.22,24
Endorsement of FPDR Programs. Despite the disadvantages of FPDR that staff members have perceived, staff members do in fact endorse FPDR programs. In one of the earliest studies, Doyle et al3 found that although 30% of staff members thought that FPDR hampered patients’ care because of disruptive behavior or performance anxiety, 71% endorsed FPDR because it made patients "more human." Similar findings were reported by Meyers et al,5 who found that 76% of staff supported FPDR; 88% thought that an FPDR program should continue. Grice et al26 found that more than half of physicians and nurses favored giving patients’ relatives the option of being present during resuscitation. In other studies,10,11 almost three quarters of nurses thought that patients’ family members should be able to be present and would allow the families’ presence if the family members were informed and were supported by dedicated personnel.
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Experimental Research |
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TopAbstractIntegrated Literature ReviewSurvey ResearchExperimental ResearchQualitative ResearchEthical-Theoretical PerspectivesCritique of the LiteratureReferences |
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Psychological Effect of FPDR
Robinson et al6 investigated the psychological effect of FPDR on patients’ family members by randomizing patients to standard care or FPDR. In a survey used to assess anxiety, depression, grief, intrusive imagery, and avoidance behavior at 1, 3, and 9 months, psychological disturbance did not differ in the 2 groups. All family members who participated in FPDR were also satisfied with their decision to remain with their loved one.
Effect of Education on Nurses’ Attitudes
In the second study, Bassler17 used a quasi-experimental pretest and posttest design to determine if an educational program could change nurses’ beliefs about FPDR. The intervention involved a class in which nurses from the emergency department and critical care nurses learned about hospital policy, risk management perspectives, obstacles to letting patients’ families be present during codes, and a protocol for offering FPDR. The educational program significantly increased the proportion of nurses who thought that patients’ families should be given the option of FPDR (from 56% before to 89% after) and who planned to offer this option to families (from 11% before to 79% after). In addition, nurses from the emergency department were 2 times more likely than critical care nurses to allow patients’ families to be present during resuscitation. Qualitative comments reflected why nurses favored or opposed FPDR. Proponents advocated that FPDR is a right and that support from physicians and changes in hospital policy are needed. Opponents voiced concern with current policies against FPDR, small rooms for patients, protecting patients’ privacy, lack of supportive staff, fears of focusing on the needs of patients’ families rather than on the needs of the patients, and possible reaction of patients’ families during the code. These advantages and disadvantages of FPDR mirror the previous survey findings of nurses, physicians, and allied healthcare professionals.2,5,12,18,22,24
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Qualitative Research |
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TopAbstractIntegrated Literature ReviewSurvey ResearchExperimental ResearchQualitative ResearchEthical-Theoretical PerspectivesCritique of the LiteratureReferences |
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Patients’ Experiences
In the single qualitative study21 of patients’ experiences with FPDR (n = 1) or invasive procedures (n = 8), 7 main themes emerged. These themes centered on being comforted, receiving help, reminding others of patients’ "personhood," maintaining connectedness between patients and their family members, discerning FPDR as a right, and perceiving how FPDR affected patients’ families and the healthcare environment.
Lived Experience of Patients’ Families
Phenomenological methods were used in 2 studies9,27 to examine the lived experience of patients’ family members who were present during a resuscitation. Wagner27 interviewed family members of code survivors to elicit the members’ thoughts, experiences, and perspectives related to the immediate FPDR event. The major theme identified was "should we go or should we stay," reflecting the struggle of family members in deciding whether to remain with their loved one or to take care of other needs. Once families received indications that it was safe to leave, they wanted to know what was going on and then turned over their trust to the staff to do the job of resuscitating the families’ loved ones. Family members also maintained vigilance as they waited to receive more information about what was happening to their loved ones.
In the second phenomenological study, van der Woning9 explored long-term effects of FPDR. The lived-experience themes included a sense of presence and connectedness as patients’ family members described a feeling that the patients knew the family members were present physically and emotionally. Discomfort and recollection were other themes experienced by patients’ families during and after the resuscitative event. Sixty-percent of family members were still experiencing stress upon recollection of FPDR 6 to 12 months after the event.
Perspectives of the Healthcare Team
In exploring the perspectives of healthcare providers toward FPDR, Timmermans14 found 3 main points of view. From the survival perspective, the only goal of resuscitation is to save a human life. This perspective was subscribed to most often by inexperienced or uncertain nurses and physicians. From the bifurcated perspective, a second goal of caring for the needs of a patient’s family was identified in addition to saving lives—a philosophy held by most healthcare providers. Last, from the holistic perspective, survival of the patient is the central goal, alongside informing the patient’s family members and helping them be active participants in the resuscitation process. This perspective occurred most often as a transition from the bifurcated perspective through the personal crusade of a chaplain, nurse, or physician.
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Ethical-Theoretical Perspectives |
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TopAbstractIntegrated Literature ReviewSurvey ResearchExperimental ResearchQualitative ResearchEthical-Theoretical PerspectivesCritique of the LiteratureReferences |
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Teleological, or consequence-based, theories were the most common perspectives. This ethical theory is concerned with actions that bring about the most benefit to all, identifying the foreseeable good and harm that can result in a given situation.33 Studies included in this critical review emphasized the universal ethical principles of autonomy (respect for a person’s values and decisions), beneficence (to do good and help people), and nonmaleficence (to do no harm) in support of FPDR. These ethical principles were illustrated by concerns about the consequences of FPDR: the benefits of FPDR for patients, patients’ families, and staff members (beneficence)2,6,23,24 and the long-term effects on family members,6,9 including the effects on family members’ roles to watch out for and protect their loved one (autonomy and beneficence)24 and on grieving if a family member is left out (nonmaleficence).17
Other research included mixed frameworks with deontological and teleological elements. Deontology is a duty-based theory that emphasizes moral duties and principles rather than consequences of action.33 Some authors3,12 emphasized the duty to care for patients’ families to meet the families’ needs, and others12,23 emphasized the duty to prevent psychological harm. Autonomy and justice (treating like cases alike by distributing benefits and burdens fairly) were the 2 universal ethical principles raised in support of FPDR, as authors either advocated that patients’ families have the right to be present (autonomy) or questioned the fairness of excluding patients’ family members (justice).3
The study by Helmer et al19 is an example of a mixed ethical framework with an emphasis on deontological principles. Almost categorically refuting the right of patients’ family members to be present during codes, Helmer et al stated that the first imperative is to advocate for the patient. Of all the arguments given against FPDR, only 2 were directly focused on the effects on patients or patients’ families. In the first, intermediate ethical concepts were used to argue that FPDR may violate confidentiality and thus a patient’s right to privacy, indicating concern for the ethical principle of nonmaleficence. Second, Helmer et al suggested FPDR could lead to posttraumatic stress disorder because resuscitation "is not an appropriate sight for distraught family members to witness,"19(p1018) representing a consequentialist view focused again on nonmaleficence. Other teleological explanations for why FPDR should not be adopted came from the perspective of the healthcare provider, including the issue of distraction during the performance of critical tasks, the safety of the healthcare team (and patient) if adequate prescreening of patients’ families did not occur, and increased medicolegal risks from possible misunderstanding of resuscitative procedures.19
Beyond the researchers’ perspectives, staff responses in these studies2,3,5,10–14,17–20,22–26,28,29,32 can be examined to identify ethical points of view. Table 2 outlines the perceived risks and benefits associated with FPDR from the vantage point of nurses, physicians, and allied healthcare professionals who participated in the studies reviewed here. This table highlights evidence that staff members have concern for both moral duties (deontology) and the consequences (teleology) of FPDR for patients, patients’ families, and staff members. The principles of autonomy, beneficence, nonmaleficence, and justice also served as the foundation for the ethical perspectives of nurses, physicians, and interdisciplinary team members toward FPDR.
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Critique of the Literature |
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Overall, use of survey methods was the predominant design. Despite promising data from these studies, FPDR remains in the early phases of knowledge development. Although this exploratory-descriptive research has collectively built knowledge in this area, limitations of these studies include the use of convenience samples, small sample sizes, low response rates, and lack of description of sample characteristics. These sampling issues create difficulties in generating conclusions and comparing samples, not to mention the generalizability of findings and the inability to replicate studies. Overinterpretation of findings appears to be another limitation of these designs; conclusions were often based on the results from small convenience samples. In addition, the patients studied were from a wide range of ages. It may not be reasonable to compare the psychological responses of the parent of an adult child with the response of a spouse or sibling of adult patients, because various coping skills may be used by different-aged family members or relatives of adult patients. This issue merits further investigation.
Most descriptive studies also used very simple retrospective surveys to inquire about family or staff opinions, attitudes, and beliefs about FPDR. Most researchers2,3,12,13,18,22,23 did not describe the content of the survey items or any validation of the tools beyond face validity or psychometric testing. Pilot testing of the survey items and content validity must be addressed before survey research is conducted, especially research on a controversial issue such as family presence, to ensure that items are not worded in such a way that they reflect a certain desired point of view. A few researchers provided more detail about the instruments used in other surveys of patients’ families and staff,5,15,19,24,25,32 some in which reliability and validity were reported.5,15,25,32
In summary, the lack of consistency of survey instruments used in FPDR research to date makes it difficult to compare results across studies. Furthermore, many of these design elements may have led to a selection bias for both family and staff samples and therefore limit the external validity of the findings. Clearly, FPDR research must go to the next level and experimental methods must be used to investigate the short- and long-term effects of FPDR on patients, patients’ families, and staff members. The role of qualitative research in expanding our understanding of the experiences and perspectives of patients, patients’ family members, and healthcare providers, however, cannot be overstated.
Directions for Future Research
In this critical review, I discovered a number of gaps in knowledge about FPDR. The most obvious gap is the absence of the patient’s voice. Researchers explored the preferences and responses of patients’ families in a number of studies2,3,5,6,9,15,16,26,27,30,31 but only 3 (11%) of the 28 studies21,26,31 addressed patients’ preferences or experiences with FPDR. Even though reliable statistics on resuscitation are not available,34 studies of this nature are a challenge, because many patients do not survive in-hospital resuscitation efforts. Qualitative interviews with surviving patients would help fill the gap in knowledge about how patients think FPDR assisted them in their survival and recovery, as well as in helping the adjustment and psychological outcomes of the patients’ families. Furthermore, because many patients are unconscious, it is not always clear what they may have wanted, pointing to the need to educate members of the public to discuss FPDR desires with the members’ families much as the members should discuss advance directives.
| The most obvious gap in the literature is the lack of the patient’s voice.
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Because of the limited knowledge that exists, research should continue in emergency departments, trauma units, critical care areas, and other hospital settings. More research in trauma settings is especially warranted, because of the strong opposition to FPDR voiced in the trauma community. Because of the generally small samples of patients’ families, little is known about those members who found FPDR unhelpful. Additional studies with larger sample sizes and in various populations of patients, as well as experimental designs with more longitudinal follow-up, are necessary to clearly discern the psychological effects of FPDR on patients’ family members. Further research is needed to explore whether stress reactions of family members documented in 1 study9 constitute posttraumatic stress disorder or are part of an expected grief response, especially because the results of 2 studies8,9 indicated that patients’ family members who were present during resuscitation had no more traumatic memories at 1, 2, 3 or 9 months than did family members who were not present. The influence of personal characteristics such as age, sex, culture, educational level, and religion or spirituality on a family member’s decision to participate in FPDR, as well as on the psychological effects of the experience, also should be explicated.
Staff-focused studies are critical to expand our knowledge of FPDR. At the attitude and belief level, studies are needed on the influence of religious or spiritual beliefs and cultural background on staff members’ willingness to have patients’ family members present during codes. Additionally, to what extent does past experience with FPDR (either professional or personal) affect staff members’ attitudes toward FPDR? It is also not known what programs or interventions can influence nurses and other healthcare providers to adopt a holistic framework that supports FPDR. Studies are needed that test the effectiveness of various approaches to develop and prepare staff to be effective family-support personnel so that FPDR efforts are offered in a way that promotes the best possible outcomes for patients and patients’ families. For instance, research is needed to determine whether "critical incident stress debriefing" interventions35,36 that help staff cope with distressed families influence staff members’ willingness to allow FPDR and help the staff members be more effective as family-support facilitators during codes. Furthermore, more research is needed to investigate the effects of FPDR on stress responses of the entire multidisciplinary team.
Except in 1 study,6 the authors of the studies reviewed here did not investigate the effect of providing a designated staff member to support patients’ family members during FPDR. The clinical FPDR literature is replete with descriptions of family facilitators to provide psychosocial-spiritual and informational support to family members who choose to be present during resuscitation.1,7,32,37–44 The presence or absence of a formal FPDR program with such designated support roles and debriefing interventions after the code may influence the reactions of patients’ families and of staff members; thus, this issue requires scientific investigation.
Organizationally, studies are needed that compare hospitals that have formal policies about FPDR with hospitals that lack such policies. From these studies, researchers can determine if hospital policies on FPDR affect the level of support for this intervention among members of the healthcare team. Globally, to what degree do hospital policies on FPDR instill a family-centered care environment? Investigations of how FPDR programs affect the extent and continuation of heroic efforts in various populations and settings are also needed. Preliminary findings of Meyers et al5 suggest that FPDR does not necessarily prolong resuscitative efforts. More research is needed to determine whether FPDR hinders or helps patients’ families make code decisions.
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TopAbstractIntegrated Literature ReviewSurvey ResearchExperimental ResearchQualitative ResearchEthical-Theoretical PerspectivesCritique of the LiteratureReferences |
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| HOME | HELP | FEEDBACK | SUBSCRIPTIONS | ARCHIVE | SEARCH | TABLE OF CONTENTS |
