Being There: Inpatients’ Perceptions of Family Presence During Resuscitation and Invasive Cardiac Procedures

The study design was exploratory-descriptive⁴¹  and employed qualitative methods. The convenience sample consisted of alert, physiologically stable adult inpatients who had experienced life-threatening events and contributed data 13 to 96 hours after the event. Events included in-hospital resuscitations, defined as clinical conditions requiring immediate intervention by resuscitation teams, typically including chest compressions and artificial airway maintenance; in-hospital near-resuscitations, defined as clinical conditions requiring immediate intervention by emergency teams but not involving chest compressions and artificial airway maintenance; and unplanned cardiac interventions requiring hospitalization, including placement of stents, pacemakers, and internal defibrillators. In this study, “family presence” was synonymous with family presence during resuscitation and unplanned invasive cardiac procedures, defined as family members positioned so as to see their loved ones during treatment for life-threatening events.

Data were collected at Indiana University Health Ball Memorial Hospital, which did not have a policy regarding family presence during life-threatening events. Decisions about family presence during resuscitation were usually made by the health care team on a case-by-case basis, with general openness to such presence in most units. However, there was very little openness to patients’ family members being present during cardiac procedures. No sampling criteria were set regarding the presence or absence of patients’ families during the focal event.

All inpatients who gave consent were interviewed by the same doctorally prepared member of the research team (R.T.) because she had extensive experience in research interviewing. The initial interview question was, “Thinking of your recent life-threatening event here in the hospital, please share your thoughts on having family members present beside you as the care team intervened.” The interviewer followed an interview guide with 13 possible follow-up questions and probes. Interviews were audio-recorded and transcribed verbatim. Interviews ranged from 4 to 30 minutes (mean, 14 minutes). The study was approved by 2 institutional review boards.

Through a recommended approach to thematic analysis,⁴¹  5 members of the research team immersed themselves independently in the transcripts, marking the text manually or by computer. After reading and rereading the data to allow prolonged engagement, each researcher identified initial codes and themes. Researchers then met and discussed individual codes and themes, comparing various schemata with the data. One team member who was experienced in qualitative analysis (C.T.) guided the discussion. The team unanimously agreed that there was saturation of the data, as no new ideas were arising from the last 10 interviews. Themes were merged until consensus was reached on 4 major themes, which were labeled with participants’ own words. Decision points were recorded to create an audit trail.

The sample (N = 48) consisted of an equal number of males and females, primarily white with a high school education. Approximately half of the participants experienced an unplanned cardiac procedure, one-fourth experienced resuscitation, and one-fourth experienced near-resuscitation. Twenty percent of participants had family members with them during the life-threatening event (Table 1). Response rate was 85%. All but 1 respondent participated 13 to 96 hours after the life-threatening event.

More than 60% (n = 29) of the responding patients preferred family presence. Of the 19 who did not, 17 had experienced an unplanned cardiac procedure. During the interview, 5 of the 19 changed their preference and desired at least 1 family member to be present. More than 90% of the respondents who experienced resuscitations or near-resuscitations preferred family presence.

Of the 19 respondents who were negative or unsure about family presence, 10 would want to be present if the situation were reversed and they were a family member of a loved one who was being resuscitated. Two respondents’ commented on their conflicting preferences:

Nine respondents did not want family presence as a patient or a family member.

Respondents most frequently described family presence as “being there.” Four themes emerged: “Being there is beneficial,” “Being there is hard,” “Families in the way,” and “Desire for control” (Table 2).

Two-thirds of respondents described the importance of families being together during life-threatening events. One subtheme was familycentered benefit. Families could know “everything was done,” receive timely information, experience “closure,” and “cope better.”

A second subtheme was patient-centered benefit. Family presence was comforting to patients; patients (n = 17) benefited when families prayed, talked to them, and kept them calm.

Fourteen respondents who had experienced family presence in the past as a patient or family member shared freely their positive experiences. Only 2 respondents did not prefer to be present again because of the troubling nature of the visual images. Participants suggested that nurses should be with families to explain the developments.

Respondents reported family presence was “hard,” specifically “hard to watch” for families and, for patients, “hard to decide who” should be present. For the subtheme “hard to watch,” participants worried about effects on families. Participants who did not prefer family presence wanted to protect families from stress. Four respondents mentioned they wanted to be remembered the way they were. Three commented that families should not be present if events were bloody or disfiguring.

Related to the subtheme “hard to decide who,” the phrase “it depends” was common. Respondents’ desire for family presence depended on whether or not family members would behave appropriately and knew about health care.

Relationships between patients and family members influenced patients’ decisions about who should be present. All married participants (n = 24) desired spouses to be present, even if it was difficult for the spouse. Respondents who preferred family presence tended to characterize their families as “close” and wanted multiple family members present. However, at least half of respondents wanted to be selective about who was present.

One-third hinted at discord in family relationships, which made it “hard to decide.”

Of the 15 respondents who commented about who owned the decision, 6 thought patients should decide, often sharing how they would think through the hard decisions.

Eight believed that families should decide; only 1 respondent thought that the health team should decide because the patient and family may not fully understand a complex situation.

The theme around which respondents (85%) most strongly agreed was that family members might “get in the way” of the care team. One subtheme was “not enough space in hospital rooms.”

A second subtheme was that families might interrupt the care team by “asking questions,” “crying,” “yelling,” “passing out,” or becoming “emotional” and “hysterical.” Participants believed emotional responses might distract the care team and divert efforts away from patients.

In addition, emotional family responses could upset the patient.

A fourth theme mentioned by 12 respondents was a desire for control related to family presence. Respondents tried to predict out-of-control behaviors of family members, which was the first subtheme.

Five respondents wanted to control how families saw them.

No respondents expressed concern about controlling confidentiality of information.

Most respondents preferred family presence and described it as “being there.” Although family presence could be hard, it was perceived as holding benefits, as long as families did not get in the way and patients had desired control. Not all respondents preferred family presence, a finding consistent with other studies of hospitalized patients.^{11,13,17,37,42} 

Our findings paralleled those found in a qualitative study³⁷  of European patients, 21 of whom experienced resuscitation. Being there, ensuring the care team was uninterrupted, and concern about effects on patients’ families were similar themes in both studies. Dissimilarly, in our study, perceptions differed markedly between respondents who experienced resuscitation and those with unplanned cardiac procedures. Overwhelmingly, respondents who experienced cardiac procedures did not want family presence; concerns of family being in the way during the procedure were particularly strong, with several noting the small size of the procedure room. Equally strong was the voice in favor of family presence among those experiencing resuscitations or near-resuscitations.

The most pervasive concern of respondents was that patients’ families would impede the care team. Similarly, health professionals have expressed concerns about performance anxiety and family interruptions.^9,23,43,44  However, studies have not documented increased stress on the medical team or changes in care delivery.^17,45  Only 1 study’s findings suggested that overtly vocal families may impede physicians’ functioning during a resuscitation, which was conducted as a simulation.²²  More research is needed on this crucial aspect of family presence.⁴⁴ 

Many concerns of respondents could be readily addressed through having a family facilitator during family presence. Family facilitator roles are recommended by the American Association of Critical-Care Nurses (AACN)²⁸  and supported by other professional guidelines.^29,30  The family facilitator role holds much promise for reducing (a) the risk of families getting in the way, (b) patients’ anxiety about families’ responses, and (c) families’ misunderstanding of events.^28,46  The AACN Practice Alert²⁸  also recommends the formation of institutional policies and procedures in support of family presence (Table 3). Patients’ preferences for family presence might be different and concerns might be fewer if this study were replicated at a site where family facilitators and policies are in place.

Our study, like others,^37,38  did not reveal any concerns among patients about confidentiality during family presence. Similarly, perceived benefits of family presence in our study aligned closely with studies of patients, patients’ families, and health professionals.^{9,11,15,16,18–21,37,42}  No new benefits emerged from our data, confirming a growing and strong consensus about benefits.

A new perspective that our study offers is an explication of how hard family presence can be—hard for families to witness, hard for care teams if families get in the way, and especially hard for patients to decide. Participants offered rich accounts of being selective and making “hard” decisions that “depended” on many factors. Previously undescribed decision processes emerged. For example, respondents considered the nature of family relationships. Respondents who characterized families as “close” preferred family presence more strongly. Married respondents clearly preferred spousal presence. Presence by adult children sometimes created uncertainty and required deliberation, especially if family dynamics were tense. Respondents tried to predict how family members would respond and how they would be affected. They expressed perceived responsibility for inviting only persons who would not be out of control, yet reflected with tears their desire to stay connected to family during crisis. As respondents deliberated, some changed from being against family presence to being in favor. This shift occurred most commonly when respondents realized that, if they were the family member, they would want to be present.

As in other studies,^11,13,37  respondents clearly believed that patients and their families owned the decision about family presence, in contrast to published opinions of health professionals who believed that the health professionals should decide.^{19,27,47–49}  Family presence can be a source of moral distress for health care professionals when patients’ wishes conflict with institutional policies or the preferences of other powerful voices, such as physicians.⁵⁰  After 2 decades of debate, unresolved aspects of family presence exist and require thoughtful consideration and further study.

This single-site study had a predominately white sample. The design did not allow generalization of results. The methods did not permit an analysis of the influence of demographic variables on the results. Despite efforts to ensure rigor in the data analysis, researcher bias could have influenced the results. Finally, we do not claim to have exhausted all possible potentially identifiable themes. Only a small number of participants had family members present during the target life-threatening event; thus, although all participants had the experience of a life-threatening event, most did not have the experience of family presence.

Health professionals should facilitate discussions about family presence before life-threatening events, perhaps when advanced directives are reviewed. Decisions about family presence require time to process. Future research can map patients’ decision-making process, perhaps through grounded theory approaches, so that health professionals can have the knowledge to anticipate and support decision making. Models for patients’ decision making during crises could be developed, perhaps building on existing knowledge about patients’ preferences for end-of-life care and advanced directives. More research is needed on larger samples of patients who have experienced only invasive cardiac procedures or experienced only resuscitation and survived.

These results add to a growing consensus that most hospitalized adults experiencing crisis events prefer family presence. Although “being there” can be hard, family presence holds benefits, as long as families do not impede the care team. Our study revealed new information about previously undescribed decision points that patients encounter when considering family presence. In addition, patients’ preferences may vary with the nature of life-threatening events. Integrating family facilitators into family-centered care and hospital policies could alleviate decisional burdens on patients, provide support for families, and reduce anxiety among members of health care teams.