op Emerg Med Vol. 26, Not. pp. 61-7 © 2004 Lippincott Williams & Wilkins, Inc Family Presence During Invasive Procedures and Resuscitation The Experience of Family Members, Nurses, and Physicians Theresa A. Meyers, BSN, CCR. Dezra J. Eicbborn, MS, RN, CNS; Cathie E, Guzzetta, PhD, RN, HN Angela P. Clark, PhD, RN, CS, FAAN; Jorie D. Klein, R} Ellen Taliaferro, MD, FACEP; Amy Calvin, MSN, RN Is the presence of family comforting to the patient, distressing to the fumily members observing procedures, or uncomfortable for the caregivers? Little research has been reported on the effects of families at the bedside while their loved ones undergo cardiopulmonary resuscitation (CPR) or invasive procedures (IPs). The need for this study was made clear when a future team member, Theresa Meyers, advocated having the parents of a fatally injured teenager present in the inten: sive care unit (ICU) while staff performed CPR. Basing our protocol for family presence (FP) on guidelines developed by the Emergency Nurses Association and using quantitative and qualitative methods, we conducted a descriptive study in the emergency department of our regional level trauma center. We surveyed 39 family members and 96 healthcare providers (60 registered nurses, 22 physician residents, and 14 attending physicians), following 43 instances of FP (which included 24 emergency IPs and 19 incidences of CPR), regarding the attitudes and experiences of those interviewed, including perceived benefits of and problems arising from FP We found that families perceived visitation as a positive experience and that they believed being with the patient was their right. Family members involved in FP viewed themselves as active participants in the care process, which met their needs for knowing about, providing comfort to, and connecting with the patient, All the participating family members surveyed believed that visitation was helpful to A poster presentati This project was funded by the 1996-97 team grant of American College of this article was given at the -Emergeney Physicians sctentific symposium, San Diego, Calif, October 11-13, 1998 the Emergency: Medicine Foundation and Emergency Nursing Foundation, Dallas, tex. The ‘acknowledge the following for thetr expertis authors wish 10 and sup. Reprinted wht permisston from the American Journal of port: Rick Risser, MS, Ron J Anderson, MD, Martanne Nursing, 2000:100(2):32-42. ‘Chula, DNSc. RN. Philip © Guzzetta, MD, Judson Randolph, MD, Elizabeth Tornquist, MA, Jobn A. Weigelt ‘rom the Emergency Department, Presbyterion Hospl- ip, ttisabeth H. Winslow, PDD, RN, Allan B. Wolfson. tal of Balas, Tex (Ms Meyers); the Parkland Health ip. Thomas 6. Mitchell, MDiv, Viekl Patrick, MS, RNC € Hospital System. Dallas, Tex (Ms Eichborn and Dr jeer Cornea MD, fanies Hlayea, MD. Josep Mio Guzzetta): the Children’s Stedical Genter of Daitas, Tex MD. Mary Elizabeth Mancint, MSN, RN, and Angela ta. They expross their gratitude to the patients, families, nurses, and physicians who participated in this study (Dr Guzzetta); the University of Texas at Austin (Dr Gap arke and Ms Calvin); the Trauma Services Depart ‘ment, Parkland Health & Hospital System, Dallas, Tex (Ms Jorie); and the Violence Intervention and Prover: tion Center, Parkland Health & Hospital Syatem, Dallas, Corresponding author: Theresa A. Meyer, BSN. CORN Tex, and Division of Emergency Medicine, University CEN, Presbylerlan Hospital of Dallas, Emergency De Of Texas Southwestern Medical Center of Dallas (Dr partment, 8200 Walnut Hill Lane, Dallas, TX 75231 Taliaferro). Comal: meverst@PHScare or. 6162 ToPicS IN EMERGENCY MEDICINE/JANUARY-MARCH 2004 them and noted tha they would do it again. We found that fa nily members who visited with their loved ones during emergency care suffered no ill psychological effects, The views of the healthcare providers differed significantly: more nurses (96%) and attending physic ing resusc than did residents (19%) (P ‘was significantly higher among re providers thought FP should be continued jurses than among residents (98% and 50%, respectively; P < ns (79%) supported FP 001 for both comparisons), And though 88% of {our institution, the approval rite for FP 00D, ‘Thirty-cight percent of providers expressed concern about possible disruptions by family members during the visits, though no such incidents benefits of FP justify implementing family presence pro Parkland Health & Hospital System, approved a hospit irred during the study. We concluded that the ns. In November 1999, our institution ‘wide protocol for family presence during IPs and CPR. Key words: cardiopulmonary resuscitation, emergency medicine, family needs. family presence, family-witne LLOWING the patient bedside during IPs or CPR is a relatively new concept. Traditionally, fam- ilies have been excluded during. these in- family members to remai terventions because of concerns that clin. ical activities might be disrupted, that the event might be too traumatic for the fam- ily to witness, and that the institution's I ability risk might “15 However, re searchers pioneering the practice of FP dur- ing CPR reported no disruption in medi team operation during 47 episodes of FP, and nearly all participating family members as- cribed benefits attained to the expe The 1995 development of the Emergency Nurses Association's (ENA’s) national guide- lines for FP during IPs and CPR—including patient and family assessment, preparation of families for the visit, and support during and after the experience—provided the catalyst for investigating the benefits and problems of this pra ‘6 More recent studies demon- strate that FP alleviates the family’s anger about being separated from the patient dur- ing a crisis, reduces their anxiety, their doubts about what was done to assist the patient, and facilitates grieving, #7-'517.18 Now, FP is attracting considerable sional attention!?-”? and media coverage. But no studies describe the FP experience during both IPs and CPR using the ENA’s guidelines. Therefore, using these guidelines for FP as a foundation, we designed a study with the objectives of examining the atti tudes, benefits, and problems expressed by families and healthcare providers involved in FP during IPs or CPR and identifying demo- graphic factors of the respondents that might tice ninates profes- sed CPR, invasive procedures, patient need expl rceptions, We were guided in developing this study by the holistic framework, which directs the caring activities of the healtheare provider in preserving the wholeness, dignity, and integrity of the family unit from birth to death.’ in differences in p STUDY METHODOLOGY This descriptive study, conducted in the emergency department (ED) of 940-bed, uni- versity affiliated, regional, level trauma cen- ter in the Southwest, was approved by the hospital institutional review board. Both qual tative and quantitative research methods were used to examine the phenomenon of FP. We surveyed a convenience sample of 39 fam- ly members and 96 healthcare providers yolved in FP, and informed consent wa tained from each participant. To be eligible for inclusion in the study, dividuals were considered family members if they shared an established relationship (rela- fe of significant other)'° with the patient Additional criteria included age of 18 years or older (modified in 1 case); the ability to speak English; the absence of comba treme emotional instability, or behaviors sug, gesting intoxication or an altered ment and, if offered the FP option, agreement to participate. Registered nurses and physicians involved also were invited to participate in the study tiveness, ex- Outcomes measures To determine attitudes about and perceived benefits and problems of FP, we used a 37-item family survey (FS) to interview participatingFamily Presence During Invasive Procedures and Resuscitation 63 ‘The ENA Position on FP We adapted our famity presence protocol from the Emergency Nurses Association’ “Presenting the Option for Famity Presence,” an 84-page educational booklet (1995) that includes a literature review. guidelines for developing a program, and institutional, staff educational, and selfassessment tools. To obtain the booklet, contact the ENA at (800) 2GETENA, Following are adapted excerpts from the ENA position statement “Family Presence at the Bedside During Invasive Procedures and/or Resuscitation {In most instances, the family is the patient”s primary support system. The patient and family members are the indivi luals who have the most personal stake in the outcome of the procedure, and therefore should have the authority to make the decision regarding presence. Family members are frequently not gi ssusci .n the opportunity to remain with th a efforts, The ENA goes on to note that based on early FP research, family members of criticall the need to be with the patient, be helpful to the pa be comforted and supported by fami be accepted, comforted, 3 patient during wasive procedures, including, ill patients have be informed of the patient"s condition Ginclucing impending death). \d supported by healthcare personnel feel that the patient was receiving the best possible care. Family presence during resuscitation efforts allows the patient and the family to support each other and facilitates the grieving process. family members and a 33-item healthcare provider survey (HCPS) to survey involved physicians and nurses, These investigator- developed surveys contained a family pres- ence attitude scale (FPAS) adapted for families (FPAS-FM) and healthcare providers (FPAS- HP), and used a 4point Likert scale to mea- sure respondents’ agreement with statements about the problems and benefits of FP. Re sponses were averiged to obtain the mean FPAS score (ranging from 1, “strongly agree,” to 4, “strongly disagree"), with a low score indicating a highly positive attitude toward FP, The surveys also included semistructured questions to gather other quantitative and qualitative data about perceived benefits and problems of FP. (For information on. valid: ity and reliability, see More on Methods and Statistics.) Family presence protocol We defined FP as the attendance of the fam- ily member(s) in a location that afforded vi- sual or physical contact with the patient dur- ing IPS or CPR. A nurse or chaplain trained in ‘ordance with the ENA’s guidelines in FP sumed the family facilitator role, assessed reactions of family members as they were given the initial briefing on patient status, and thereby determined family suitability for in- clusion in the study. Once individuals were d as appropriate FP candidates, phy: cian and patient Gf conscious) agreement for the visit was obtained, and the family mem- ber(s) was then offered the visitation option. If the family member declined, that deci was supported by the facilitator. ‘The family facilitator prepared family mem- bers for the visit by informing them about * the patient's appearance. + the procedures to be performed. * the value of the supportive role (talking to and touching the patient). + bedside time restrictions (usually 3-5 minutes for CPR; no predetermined time mit was set for IPS), tions which might necessitate their being escorted from the room (if they became overwhelmed or disruptive, for exampte).!° ‘The facilitator accompanied family mem- bers to the patient's room, prepared a place for them to stand or sit, and guided them through the experience by explaining inte: ventions, interpreting medical jargon, answer- ing questions, and providing opportunities to64 Tories 1 EMER More on Methods and Statistics Instrument validity and reliability. Five nurse experts and 2 physician experts rated the individ item and the overall relevance of the PS and HCPS (© establish content va Three research team members revised the surveys before bey tems were deleted by the researchers if there was not 70% agre by the content experts. Reliability of the 15 items included in the FPAS-FM and the 18 itemsinthe | FPASHP, calculated by Cronbach’ alpha, revealed overall consistency indexes of 92 respectively, indicating high internal consistency for both scales. Statistical analysis. Comparisons between respondents based on presence during an IP versus CP! \d groups defined by demographic characteristics were dor Jent’s test oF a | relevance of the instrument test for categorical survey items oF the St performed for test for significant ANOVAS. Statistic The au verbati jotaped family | data Content analysis using the cons theme desivation, and interpretat | methodology read the transcriptions to gain examined line by line | obtained from e performed sequentially, and categor from compared using thematic analysis, and interpreted to discern the mean validated through review, veri reviewed the finding for ace interpretation, Participa ‘emerged from the analysis" ‘Thus, the crit including adequacy, auditability, and credibility see, touch, and speak to the patient, Follow ing the visit, family members were escorted back to the waiting room where the facili- tator addressed their further questions and concerns, Within 72 hours of the FP event, nurses and physicians were given the HCPS to com- plete and return, Approximately 2 months after the FP event (a time consistent with crisis resolution), an investigator, trained in interviewing and data collection procedures using a standardized protocol, conducted follow-up audiotaped interviews with families members using the FS.1!- scores. Fisher's exact test was calculated to compare the dichotomous (yes/no) survey responses of healthcare providers by job title. Post boc pair-wise comparisons were completed using the Bonferroni technique of dividing the overall alpha level (.05) by the number of comparison ngency table analyses with more than 2 groups or using the Bor alyses were performed using SAS software, Version 6.12." Twortailed P values of less than 0.05 were conside: cerviews and written health 1. The transcriptions were compared to the audiotaped recordings or written responses to verify accuracy and then entered into NUD"IST (Nonnumerical Unstructured Data * Indexing, Searching, and Theorizing), a computer software program for managing and analyzing qualitative ‘nt. comp n.440- First, two investigators trained in quali n overall sense of the experience, The data were then, and categories emerging from the data were Compared with responses lier interviews to establish commonalties and differences, (Interviews were 's emerging from later interviews were compared with those ier interviews), Data collected from family members and healthcare providers wer in which segments of data are coded, grouped, clustered, linked, of the FP tion, and consen established by reconding the decisions used to categorize the data. Four other coinvestigators icy and independent corroboration of category themes and | ‘s were enrolled until saturation of data occurred and no new findings NCY MEDICINE/JANUARY- MARCH 2004 ty of inning the study Lon the relevance of th item 191 using Fisher's exact or chi-square alysis of variance (ANOVA) for attitude ed significant. provider responses were transcribed rison technique was done with data coding, -xperience.* Primary thet ified and s of the two analysts, ane! an auclit trail wats were met for rigor in qualitative research, DEMOGRAPHIC SURVEY Ri Forty-three cases of FP were studied, con- ng of 24 (56%) IPs and 19 (44%) CPR cases, Patients in both groups were compara ble with regard to age, gender, race, and pri mary diagnosis (see Demographic and Clin- ical Characteristics of Patients). Although most FP events occurred in the ED, 5 cases G instances of cardiac arrest and 2 of IPs) took place in other hospital locations (in these in- , the investigators were notified of the event). Overall patient mortality was 56%, and it was significantly higher in the CPR group stanceFamily Pi Invasive Procedures Performed Endotracheal intubation Central line insertion Lumbar punctu Chest tube insertion Orthopedic reduc Nasogastric insertion } Intracranial pressure line insertion Diagnostic peritoneal lavage External pacing Pleural Endot ‘heal extubation | Open-wwound exploration 1 ——s than in the IP group (90% vs 29%, respectively; P< .001). The IPs most frequently performed during FP included endotracheal intubatio! central line placement, lumbar puncture, chest tube insertion, and orthopedic reduc- tion (see Invasive Procedures Performed). Seven of the 54 (13%) family members as- sessed as suitable candidates for FP declined the visitation option. Of the 47 family mem- bers who experienced FP 6 were lost to followup, 2 refused to be interviewed, and 39 (83%) were interviewed for approximately 30 minutes 2 months following the event In most instances (82%), one family member was interviewed per case. Parents or children of the patient were present more often dur ing IPs (64%), Whereas more spouses were present during CPR (57% P=.04) (see De- mographics of Family Members and Health- care Providers). No significant differences were found in age, gender, education, cat gorical survey responses, and attitude scores between family members in the IP group and those in the CPR group, nor were there di ferences in survey response based on family member relationship to the patient. Because of the homogeneity of the data, survey re sponses from families present during IPs and CPR are reported together. Of the 121 healthcare providers who par ticipated in FP. 96 (79.3%) completed returned the survey once, an average of 17 days alter the event. Responses came from 60 (62%) nurses and 36 (38%) physicians (22 res- and ence During Invasive Procedures and Res scitation — 65 idents and 14 attending physicians). Providers in the IP and CPR groups were comparable in job title, age, gender, categorical survey re- sponses, and attitude scores (except for one question dealing with support, which is repo- rted below). Because of the homogeneity of the data, survey responses from providers in the IP and CPR groups are reported together. FAMILY MEMBER AND PROVIDER ATTITUDES Family members The mean FPAS-FM score was 1.54 (£0.39), indicating @ positive attitude toward visita- tion. Most family members (97.5%) indicated that they had a right to be present during IPs and CPR and all would do it again. In a third of the cases (47% involving CPR and 21% IPs), family members were with the patient dur- ing the emergency onset (which occurred in a prehospital setting) and assisted in summon- ing help and giving aid In the qualitative analysis, family members used phrases such as “love has many forms,” you just do it," and “I needed to be there” to express the opinion that it was their right and obligation to be present during treat- ment, providing the patient with support and someone to trust (themes that emerged from the analysis are italicized). They described the FP experience as “powerful,” “natural,” and fecling “right to be with him,” despite having emotional responses they depicted as “fright- ching,” “difficult,” or “scary, but Vd still rather be there.” Healthcare providers ‘The mean FPAS-HP score was 1.91 (£0.48), also indicating 4 positive attitude toward FP Nurses, however, reported significantly more positive attitudes toward FP (FPAS-HP score, 1.69) than did cither attending. physicians (FPAS-HP score, 2.06) of residents (FPAS-HP score, 2.41), and attending physicians had a more positive attitude than did residents (P < 05 for all 3 comparisons), Most providers indicated support of FP dur- ing IPs (73%) and CPR (76%), and said they66 TOPICS IN EMERGENCY MEDICINE/JANUARY-MARCH 2004 Demographic and Clinical Characteristics of Patients* Invasive procedure Resuscitation Total patients (n= 24) __patients(n= 19) (w= 43) Age (years) Mes 454231 5034159 469 £205 Gender Male 12.60) 1263) 2456) Female 1260) 767) 194) Race white 11.46) 5.26) 16a Black 65) 10653) 1667) Hispanic 65) 2ap 819) Other 1a 20) 30) Primary diagnosis at time of event Trauma 8G3) ‘en 128) Medical 1667) 1509) 3102) Patients in both *Values are n foups were comparable with regard to age, gender, race, and primary diagnosis, imbers followed by (percentages) unless otherwise indicated Demographics of Family Members and Healthcare Providers’ Invasive procedure Resuscitation Total Family member Age (years) Mean + SD 38.04 137 4G 117 40.04 13.2 Gender a) 1460) 39.(100) 8G2) 321 11.28) (68) 1.09) 2872) can + SD Bg £25 133.430 B34 ynship to patient” Son/daughter 9.36) 2eD Parent 7428) 923) Spouse a2) 11.28) Sibling 416) 410) Significant other 2@) 348) Healthcare providers 35 (36) 6160 96 (100) Nurses 1964), 1167) 60 (62) Auending physicians saa 95) 14.5) Residents G2) 118) 3) Age (years) Mean + SD 05255 329470 320466 Gender Male 8G) 24 (39) aay Female 1749) 376, 5456) Valles are numbers followed by (percentages) unless otherwise indicated. * Family members in both the CPR and IP groups were comparable in age, gender, and education. ‘The family her relationships were significantly different berween the CPR and IPs groups, P= 04Family Presence During Invasive Procedures and Resuscitation believed the FP program should be contin ued at the institution (88%), though signi icantly more nurses than residents asserted these beliefs (see Differences Among Healt care Providers). Nurses and attending physi cians were comparable in their responses, but attending physicians significantly differed from residents only in their support for FP dur ing CPR (79% vs 19%; P=.001). of healthcare providers as advocates for pat tients and families emerged from the qualita tive analyses but support for the family’s need and right to be present was voiced more often by nurses than by attending physici residents. The theme ns and FAMILY MEMBERS’ PERCEIVED BENEFITS One hundred percent of the families indi cated that it was important and helpful for them to be with their loved one: * “They would have had to call security to keep me out + *T would have handcuffed myself to her to be there Of family members nearly all (95%) said tha the visitation helped them to comprehend the seriousness of the patient's condition and to know that every possible intervention had been done, They (95%) also believed that th visit helped the patient—even when the pa tient was unconscious, Qualitative analysis of family data enlarged these quantitative findings. Family members said FP provided relief from wondering about what was happening to the patient and vi sual and verbal knowledge about the patient's condition and care. * “It would have been harder to sit in the waiting room's sterile environment + Sometimes they forget to speak im lay man’s terms. It helped me to sec exactly what they were doing They also said this knowledge decreased worry, minimized the agony of waiting helped them in facing the reality of the sit uation, lessened helplessness, and fa grieving in later months. tated Differences Among Healthcare Providers* Afra aigerses 2 De youngest ace deg ee procshne?” rps Aegon Po aun yon eb, P= 3 Family members perceived that they pro: vided comfort and protection to a loved one who was in pain, afraid, vulnerable, or defenseless, saying, “There are some things that ER people can’t do as far as making the patient comfortable,” “Being there is like putting a Band-Aid on the wound.” De- scriptions of comforting activities included touching,” “kissing,” “holding,” “praying, calming,” “preventing aloneness,” “decreas. ing fear,” and “giving the patient permission to die.” Regardless of the severity of the pa tient’s condition, family members said they fo- cused on their patient-comforting role rather than on the trauma of the event: “The doctors Were there for the procedure, but I was there for him.” Family members also described themselves as helpers; they were interpreters, signers of consent forms, “knowers” of the patient, providers of information at the Differences Among Healthcare Providers? Aint resporage 2 ‘De you apr anon daring PRE Naess Alediog Physica, P= 05, ‘Aaering Physi vs Residents, P« O01" Categorical items from Healthcare Provider Survey Significant diference at P<.017 (Bonferroni strategy to adjust for multiple comparisons)