Traditional/Restrictive vs Patient-Centered Intensive Care Unit Visitation: Perceptions of Patients' Family Members, Physicians, and Nurses Bettina H. Riley, Joseph White, Shannon Graham and Anne Alexandrov Am J Crit Care 2014;23:316-324 doi: 10.4037/ajcc2014980 © 2014 American Association of Critical-Care Nurses Published online http://www.ajcconline.org Personal use only. For copyright permission information: http://ajcc.aacnjournals.org/cgi/external_ref?link_type=PERMISSIONDIRECT
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Families in Critical Care
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RADITIONAL/RESTRICTIVE
PATIENT-CENTERED INTENSIVE CARE UNIT VISITATION: PERCEPTIONS OF PATIENTS’ FAMILY MEMBERS, PHYSICIANS, AND NURSES VS
By Bettina H. Riley, RN, PhD, Joseph White, RN, DNP, NE-BC, Shannon Graham, RN, DNP, and Anne Alexandrov, RN, PhD, CCRN, NVRN-BC, ANVP-BC
This article is followed by an AJCC Patient Care Page on page 325. ©2014 American Association of Critical-Care Nurses doi: http://dx.doi.org/10.4037/ajcc2014980
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Background Patient-centered intensive care units (ICUs) are advocated by professional organizations for critical care nursing and medicine. The patient-centered ICU paradigm recognizes the patient-family unit as inseparable and supports visitation designed to meet the needs of patients and patients’ families. Objectives To understand perceptions about patient-centered ICUs among patients’ family members, physicians, and nurses from 5 ICUs that had restrictive visitation and to guide development of a patient-centered, open visitation paradigm. Methods Patients’ family members, nurses, and physicians from 5 ICUs with a traditional/restrictive visitation policy at a southeastern academic, tertiary care hospital were invited to participate in focus group meetings to understand perceptions about patient-centered care. All qualitative work was taped, transcribed, reviewed, and corrected after each session. Corrected transcripts and observer notes were integrated and coded. Results Patients’ families identified facilitators of patientcenteredness as nurses’ and physicians’ communication, concern, compassion, closeness, and flexibility. However, competing roles of control over the patient’s health care served as barriers to a patient-centered paradigm. Conclusions Patient-centered care is an expectation among patients, patients’ families, and health quality advocates. These exploratory methods increased understanding of the powerful perceptions of family members, physicians, and nurses involved with patient care and provided direction to plan interventions to implement patient-centered, family-supportive ICU services. (American Journal of Critical Care. 2014;23:316-324)
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raditional, non-patient-centered environments prevent patients’ families from visiting their loved ones except during predesignated, time-limited periods interspersed throughout a long hospital day.1,2 Dissatisfaction with this traditional visitation paradigm has pushed families to become more involved in their loved one’s care with a greater focus on the transparency of health-care quality.3-11 This focus is evidenced by calls to action for hospitals to examine their current intensive care unit (ICU) visitation practices12-19 and to try entirely open, nonrestrictive ICU visiting, labeling any visiting restrictions as a relic, unnecessary, and potentially harmful to the patient’s safety.13,14
Open visitation is among the defining elements of a patient-centered approach.12 Patientcentered care revolves around the patient, not the physician, nurses, or the facility, and is a priority identified by the American Association of CriticalCare Nurses (AACN).15 In addition, to achieve a Magnet Recognition Program, exemplifying excellence in nursing practice, hospitals must adopt a conceptual framework that includes family-centered care.16 Family-centered care and patient-centered care are simultaneous approaches toward self-governance of health care.11 Despite worldwide and national priorities/standards incorporating families into the decision making and care of ICU patients,10-19 as many as 90% of ICUs in US hospitals have a restrictive visitation policy.1 Restricted ICU visitation traditions foster beliefs that visitors obstruct nursing and medical care, exhaust patients, interfere with healing and/or cause negative physiological effects, pose an increased infection risk, jeopardize patients’ privacy, and create unsafe environments.13,17,20-22 Other studies12,13,20,21,23-28 have shown contrary findings; family visitation contributed to improved physiological measures and
About the Authors Bettina H. Riley is an assistant professor at University of South Alabama, College of Nursing, Mobile, Alabama. Joseph White is a nurse manager in the heart lung transplant unit at University of Alabama at Birmingham (UAB) Hospital in Birmingham, Alabama. Shannon Graham is Magnet program director and advanced nursing coordinator, Center for Nursing Excellence, UAB Hospital. Anne Alexandrov is assistant dean for program evaluation, professor, and program director, doctor of nursing practice and NET SMART, UAB School of Nursing and UAB Comprehensive Stroke Research Center, Birmingham, Alabama. Corresponding author: Bettina H. Riley, RN, PhD, University of South Alabama, College of Nursing, Baldwin County Campus, 161 North Section Street, Suite C, Fairhope, Alabama 36532 (e-mail: [email protected]).
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lower stress for patients and increased job satisfaction for nurses. As this study was the first phase of a patientcentered care project, the aims were to examine perceptions related to traditional/restricted ICU visitation among patients’ families, nurses, and physicians, to understand barriers and issues, and to gauge the generalizability of others’ work. Understanding the barriers to patient-centered care may support future interventions aimed at reshaping the current ICU culture to align with a patient-centered paradigm.
Methods
Open visitation is among the defining elements of a patient-centered approach.
This study’s setting was an academic, tertiary care, Magnet Recognition Program hospital with a level I trauma center designation and 900 licensed adult beds. Approval was obtained from the institutional review board for human subjects research. Five of 8 ICUs adhering to a traditional restrictive visitation policy were the focus of this project (trauma, surgical, medical, neurosurgical, cardiothoracic surgery), each with 20 to 28 beds. All 5 units posted similar strictly enforced visiting hours, limiting visitation to 2 people for 30-minute visits, 4 times a day.
Design Focus Groups Criteria for participation were as follows: the family member’s patient must be 18 years or older with a minimum ICU stay of 72 hours, and the family member participant must be 18 years or older, speak English, and must have visited the ICU patient at least twice. Three family focus group meetings were held on different days and preceded 2 focus groups for nurses and 1 focus group for physicians that met on the same day. Participants
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Table 1 Roles in the intensive care unit (ICU) Role Patient’s family
Function and examples Provide a calming effect: “I’ve asked them that when he starts to wake up, could I be in there because I know that when I’m with him I can have a calming effect on him.” Role as surrogate: “I feel real safe and secure that they’re in there treating him, but I need to know sometimes, my husband’s in a paralytic state so he can’t speak for himself, so I’m the one they need to be telling things [to] and keep me informed of what’s going on with him.” Provide motivation: “I want him to hear my voice. I want to talk soothingly to him; I want to tell him, to motivate him to keep fighting.” Provide reassurance: “…having that loving family care, just to let them know that we’re here, that we didn’t just leave you here and let these people take care of you. We’re still out here, and we still love you.”
Physician
Not in support of open family visitation: “Twenty-four hour visitation is not preferred. It is not possible.” Role of the family prominent when [patient] discharged from the ICU: “…it is an integral part of what we’ve done for that patient, have their family visit. It’s important for the family, because the family is who’s going to take care of this patient when they make it out of the ICU.” Opposition to open visitation seen as safeguarding the [patient’s] family and patient: “I think it would be too stressful for many family members to see the scalpel being used to place a tube inside somebody’s chest.”
Nurse
Open visitation negatively affects patient care: “…if I’m gonna spend an hour talking to [the patient’s] family, that is an hour of patient care that I’m not giving.” Patient’s family should not be denied visitation: “…the fact is, these patients, belong to family who care about them and who should not be denied the opportunity to, have interaction, that, that’s my opinion.”
included attending physicians practicing in the ICUs and nurses chosen from all shifts in the 5 ICUs. Data Collection and Analyses All focus group sessions were voice recorded and facilitated by 1 group leader and 1 assistant. Written informed consent was provided by all focus group participants. Transcriptions from the voicerecorded tapes were analyzed by following procedures and guidelines developed by Lee et al,22 Dawson et al,29 and Miles and Huberman.30
Results The focus groups consisted of 8 different female family members representing 4 of the 5 ICUs; 2 male physicians and 1 female physician represented rotations in all but the surgical ICU; and 1 male nurse and 6 female nurses represented all 5 ICUs. Feelings and beliefs about families’ ICU visitation experiences varied among the patients’ families, physicians, and nurses. Role of Families Patients’ family members thought that they knew their ICU family member better than anyone and were in the best position to provide a voice for
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and emotional support to their loved one (Table 1). Through vigilant watchfulness, interpretations of body movements or noises (eg, tracheotomy sounds, facial expressions), and recognition of the patient’s needs (eg, repositioning), the family member performed, assisted, or initiated an intervention. As surrogates, patients’ family members believed that they “should always be involved” and should have the opportunity to ask as many questions as necessary to satisfy their decision-making needs. In addition, the physicians and nurses needed to explain to them what was occurring with their family member’s medical care (Table 1). Physicians agreed that patients’ families had a role in the ICU; they did not agree that this role coincided with a stationary physical presence in the ICU. Physicians were not in support of open family visitation but viewed the role of patients’ families as prominent once the patients are discharged from the ICU (Table 1). Physicians saw themselves as opposing 24-hour visitation to safeguard the patients’ families and patients (Table 1). Nurses were divided about the roles of patients’ families in the ICU, with beliefs ranging from opposing open visitation in the ICU, to stating that open visitation would detract from patient care (Table 1),
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Table 2 Communication Role Patient’s family
Function and examples Felt scared: “…it would be nice to have them every 2 or 3 days, or even…once a week would be nice, instead of waiting until it’s something major, and then they all crowd around you, you know like they’re fixing to take him to surgery…and they’re just all there, like instantly come out from everywhere and you’re forced to make these decisions all at once. It’s kinda scary.” Want health-care workers to demonstrate empathy, suggesting that they need: “…some way to let them help touch the experience without actually ever having it.” Communication process taken for granted: “I’ve been here 7 weeks now. They would come in, when we would come in, ask us, if we had any questions or introduce [themselves], if they were the nurse....now we’ve been here this long, sometimes they do, sometimes they don’t.” When describing nurses caring for other patients as well as their loved one, this family member went on to say, “…they’ll come in later cause they’d have to answer their main patient first. They seem not to, to want to share as much, I guess you could say.” Wanted more face time with their physician: “…if they could make a time, or some, some way that the doctor could speak with you. I know they can’t speak with us every day, but at least every 2 days.”
Physician
No time to spare for family communication: “My duty and my obligation is to that patient first, and not the [patient’s] family.”
Nurse
Families became demanding: “I think the longer the patient is there, the pickier the [patient’s] family gets, and it gets harder. It’s like daddy’s not getting any better, so it must be your fault, … he’s not getting any better, cause you’re not taking care of him.” “…that family member doesn’t understand that you cannot be over there to answer the questions.…you might say, ‘Hi,’ real quick, cause you have to be in this room…you know they’re dying.”
to the belief that patients belong to their families who care about them and that patients’ families should not be denied visitation opportunities. Nurses’ beliefs also included that the best examinations of patients occurred when patients’ families were present and that taking care of the patients’ family might be the only gift that a nurse can give to a dying patient (Table 1). Communication Patients’ families, physicians, and nurses believed that sharing information about a patient’s health status was important and necessary. Families felt “panic” if their loved one’s health status was not reported in a timely manner and felt scared making caregiver decisions that were based on infrequent medical updates (Table 2). Families felt comforted when greeted with personal inquiries and given a progress report on their loved one’s condition. In addition, patients’ families wanted health status information delivered from the physician, referencing “adequate” delivery from nurses but that physicians were the only ones who could provide certain information (eg, prognosis). Communication content was also important. One family member anticipated her husband’s discharge when told that her husband was “stable,” but the physician stated, “No, stable means ‘critically stable’ in the ICU”; the family member labeled
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“critically stable” as a “new word” but paradoxical. Another family member stated that health care workers needed to “learn how to talk to patients’ family members” and to demonstrate empathy (Table 2). One family member mentioned that the longer the ICU stay, the more the communication process was taken for granted (Table 2). Physicians shared beliefs that patients’ families, as the primary caregivers outside the ICU, should receive detailed information about patients. Yet, physicians also believed their primary obligation was to patient care. Physicians stated that making rounds included acute interventions and there was no time to spare for communicating with patients’ families (Table 2), and as teachers, they attributed their time constraints to new, stricter, rounding schedules for their resident physicians. Physicians stated that communication with patients’ families could be delegated to other members of the health-care team (eg, resident physicians, nurses). Nurses believed that they were advocating for patients when they sought information from physicians, from patients’ medical reports, and shared it with patients’ families, but felt that depending on the hospital unit, in addition to workload, emergent
Nurses believed that the best examinations of patients occurred when patients’ families were present.
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Table 3 Convenience and flexibility of visiting times in the intensive care unit (ICU) Role Patient’s family
Function and examples The wait to visit perceived as a helpless period: “You’ve had to care for someone as deeply as we do, and then wonder what’s going on, on the other side of that door… feel so helpless.” Nurses and physicians needed time to perform procedures or medical routines: “…I’m okay with that, but you know I’d stay in there all the time, stand in the corner somewhere.” Delay visitation: “… he was naturally asleep and…I know that when a sick person is asleep their body is healing better then, so I don’t want to wake him up,” or if they became overwhelmed, “… he’s never been in ICU before…and I couldn’t stay, somedays I didn’t even stay in their 5 minutes, because of his condition, and I could not cope with it.” Special visits: “…he may not make it…time is very precious right now.” Visitation times: “…very tiring being here from early in the morning to that late at night, and the first morning visit was too late in the day; …I know that in the mornings they’re probably doing the baths and getting everything ready, but when you can’t see somebody ‘til 10:30 AM, sometimes that’s a little late for me.”
Physician
Patients’ rights as a barrier to open visitation: “Our ICUs are not set up logistically to allow throughput of people at any time of the day and protect patients’ rights.”
Nurse
Family naïve of actual needs and health status of patient: “We make ‘em look good, we clean ‘em up, we prop their hands up on pillows, they look perfect…and they think they’re fine.”
situations were a barrier to timely communication with patients’ families (Table 2). Nurses also believed that the longer a patient’s ICU stay or when the patient’s condition had deteriorated, the more demands from patients’ families (Table 2). Convenience and Flexibility of Visiting Times Patients’ families, physicians, and nurses were far from similar in their beliefs about visitation. An ICU family described the wait to visit as a period of being helpless (Table 3). Patients’ families preferred to have access to visitation on a continual basis but expressed an understanding that nurses and physicians needed time to perform procedures or medical routines (Table 3). Patients’ families wanted options to delay or postpone visitation when the patient was unavailable (eg, asleep, undergoing a procedure); patients’ families feared that the patient might not survive procedures (Table 3). Furthermore, patients’ family members did not prefer visitation times at or later than 8:30 PM or before 10:00 AM, believing that the late evening times placed them in an unsafe inner city environment and the late morning time was too late in the day (Table 3). Physicians believed that 24-hour visitation was “not preferred; not an option.” In addition, physicians stated that providing procedural oversight/instruction to residents or medical students might reduce the family’s confidence in the delivery of medical treatment. Physicians also identified patients’ rights as a barrier
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to open visitation (Table 3). However, physicians were not opposed to some flexibility in visitation, recognizing that when patients’ family members first arrive from out of town, or any time after a surgery or procedure, they may need additional visitation time “to see . . . that their loved one’s okay.” Nurses were varied in their feelings about open visitation. Some endorsed open visitation, believing that patients’ families are naïve of patients’ needs and health status when allowed only “snapshots in time” (Table 3). Furthermore, if exposed to a medical procedure, families might understand better the complexities and demands of ICU care; if at the bedside longer, they could assist with activities of daily living. However, other nurses thought that if patients’ families were there longer, nurses’ workload would increase, while others believed that open visitation did not necessarily equate to constant bedtime presence because patients’ families would visit only intermittently. Many nurses had a flexible visitation approach, allowing substituted visits for missed visits, an extra visit before a procedure, or prolonged visits. Confidence, Trust, and Relationships Patients’ families qualified their perceptions about ICU visitation on the basis of the individuals involved. Ideals or “favorites” were identified by patients’ family members as those nurses who were compassionate, caring, professional, knowledgeable, flexible, informative, accessible, approachable,
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Table 4 Confidence, trust, and the relationship with nurses and physicians Role Patient’s family
Function and examples Ideals or “favorites” were identified by family members; better outcomes: “I don’t go home unless she’s going to be on duty those 2 days. That’s how confident I am in her, I really am.” “Well, I can tell you that my patient has had some favorites, and you can tell the ones that are so good because his numbers (physiological measures on the bedside monitor) look better...” Offering advice – inappropriate role: “A nurse who I had never spoken to before…told me that I needed to consider just how long we were going to keep him on life support, that…I need to have a talk with him and we needed to decide just when we were going to take him off of life support.” Continuing, this family member stated, “And it still upsets me, because when we started this ordeal, his primary care doctor told me, ‘sometimes in a case like this we reach a point where there’s nothing else that we can do.’ And he said, ‘if that time comes, I will be the one to come and discuss it with you.’” Frustrated with lack of relationship with the physician: “…they know when the visiting hours are. And they don’t have a problem doing a procedure when it’s visiting hours…they could take the time to come and spend it with the family.”
Physician
Not enough time: “If I were rounding and taking care of patients and the family member stopped me for every single question they wanted to know, I wouldn’t be able to deliver adequate care to the next person…it’s just not physically possible…I want to help the family…but that is my secondary concern.” Too many physicians seeing a patient in an academic facility: “…the patient is not necessarily being seen by the same doctor every day, the same resident, so there’s a lack of continuity…that inhibits their ability to feel truly connected and configured into the plan.”
Nurse
Instruct family about the family member’s conduct during the visit: “I think as nurses we have to…say, ‘let’s have a quiet visit…I know that you want to visit with her, but this may be an appropriate time to just hold their hands, and just accept the fact that they’re gonna sleep, and I would appreciate it if you would let them sleep.’ …I’ve done that so many times as a bedside nurse, and I think they appreciate that as long as you give them a reason why.” Family aggression and conflict were common: “…in a trauma setting…we have family members that come up that are fighting mad.” “And there have been nights where if there was not a door between us and them, they would come after us.” Feelings of being “policed”: “…it doesn’t matter if they come from whatever kind of nursing background, or social work background…they’re policing us. That’s their job, and they’ll stand at the bedside to police us, to make sure we’re doing what we’re supposed to do.” Provide too much education and at inopportune times: “…sometimes I feel that our education comes at inopportune moments…we inundate them with all of this information and then expect you to understand every time you come in…every time you call…it seems like we expect people to understand way too fast.”
available, funny, and trustworthy (Table 4). In contrast, patients’ families identified unprofessional behaviors of providing no explanation when barred from visiting or when a nurse new to the family member provided unsolicited, disturbing “advice” about removing her husband from life support after he had started treatment with dialysis only 4 hours earlier (Table 4). Furthermore, patients’ family members stated that nursing care was better when the patient to nurse ratio was 1 to 1. Patients’ families wanted a better relationship with more face time with their physician, recognizing that there could be numerous physicians involved in the care of their loved one (Table 4). One family member was frustrated with not seeing the doctor at least during visitation and another wanted, aside from emergency communications, weekly updates.
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The physicians wanted the patients’ families to know that the physicians were accessible, but the physicians believed that they did not have the time to spend with patients’ families and still accomplish their priority: direct patient care (Table 4). Existing relationships were often not face to face, and although physicians expressed a preference to meet in person initially, doing so was not a priority and phone contact after rounding was seen as a practical way of responding to the concerns of patients’ families. Physicians agreed with patients’ families that the volume of physicians seeing a patient in an academic facility was a barrier to an ideal relationship between physicians and patients’ families (Table 4). ICU nurses described their relationship with visiting patients’ family members on the basis of the individual, with each having “completely different”
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expectations such as undivided and complete availability of the nurse. Unfulfilled expectations of patients’ families might result in complaints to the nurse’s manager. In 1 case, a patient’s family did not believe a diagnosis and a representative was chosen to look at the patient’s records to “make sure that we’re doing our job like we’re supposed to,” leading to feelings of being “policed” (Table 4). Furthermore, nurses felt “frightened by the situations that patients bring with them to the hospital,” such as fights between family members and visitors “threatening to finish the job” and assumed the responsibility of “keeping people safe, that’s the biggest thing ever.” Several nurses also reported being physically injured by families of patients and feeling unsafe at work.
A nurse-led initiative showed that participation of patients’ families did not significantly slow down rounds.
Discussion The aims of this study were to understand the barriers to patient-centered care. Understanding the barriers will aid in the design and implementation of patient-centered milieus. Role of Families Empowerment of patients’ families is essential in advancing family roles in a patient-centered care environment.31 The integration of patients’ families in physicians’ rounds benefits the families’ surrogate decision-making and patient care processes.7 In spite of the physicians’ and nurses’ stance that open visitation was a barrier to patient care, a nurseled initiative showed that participation of patients’ families did not significantly slow down rounds, but eliminated the need for lengthy family conferences.32 However, Cypress,33 in her review of the literature, stated that sparse research in this area called for advanced practice nurses to examine the roles of patients’ family members, physicians, and nurses during unrestricted visiting, rounds, and end-of-life situations.
Implementation of a partnership model of care may reduce communication deficits.
Communication Effective communication, being empathetic and available, avoiding personalization, and listening therapeutically are integral parts of patient-centered care.34,35 Deficits in physicians and nurses’ availability, engagement, and therapeutic communication found here could be addressed by the implementation of a
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partnership model of care, which has reduced communication deficits and improved role confusion in other settings.32 By providing a welcoming environment, involving patients’ family members in ICU operations with open visitation, bedside reporting, manager rounding, including patients’ family members in physician rounding, enabling patients’ families to call for a rapid response team and request an ethics consultation, this model conserved time for physicians contributing hours back to direct patient care, and improved evaluations of communication between patients’ families and nurses and job satisfaction scores among nurse managers. Ratings by patients’ families (not physicians or nurses) of satisfaction with ICU team communication were increased by addition of a family support person,36 indicating the need to determine further what barriers to communication exist for physicians and nurses. Furthermore, the intervention of a communication facilitator (nurse or social worker) revealed that the breakdowns in communication were more common and serious after ICU discharge, the opposite of what physicians here thought was most important,37 suggesting that a communication process initiated before a patient’s’ discharge should be examined to prevent a total disconnect with the patient. Burnout in nurses could be the answer to the decline in health-care workers’ communication that patients’ families experienced with longer stays in the ICU and the increased caregiver burden experienced by patients’ families who had members with extended ICU stays. Among the reasons for burnout in nurses and physicians are relationships between coworkers and supervisors, conflicts with patients, and caring for dying patients.38 Placement of a clinical nurse specialist who provides education about working with patients in difficult situations and burnout assists in reducing burnout and increasing job satisfaction among nurses.39 These findings also supported quality-of-life discussions in the ICU that were not regularly recognized, managed, or appropriately discussed.40 Consideration should be given to training staff in communications related to end of life by using techniques40 such as forming a support team or use of bereavement carts stocked with information and resources, hand casts, and books on grieving.32 Convenience and Flexibility of Visiting Times Viewing visitation as a privilege, not a right, was not uncommon in the ICUs, where the nurses were clearly in charge of visitation and where, depending on the nurse’s attitude, some families clearly
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benefited, while others experienced stress from rigid rules. Open visitation installed through a partnership model of care using a major change intervention facilitated this major culture shift.32 Use of this same model allowed reduction in ICU interruptions stemming from outside sources (eg, phone calls) by 40%, and practical needs (food, hotels, pillows, blankets) were addressed by support personnel rather than clinical staff.32,36 Physicians’ concerns related to residents practicing in an open visitation environment remain an area of needed research. Confidence, Trust, and Relationships Patients’ families in this study and in a similar study41 valued trust of the health-care provider; however, confidence, trust, and relationships between patients’ families, physicians, and nurses varied from intimate to nonexistent. Role confusion and poor communication contribute to poor outcomes in these areas between these key stakeholders.35 One study’s intervention that improved these relationships was focused on physician and manager rounding with patients’ families.32 Researchers in other studies36 reported that establishment of a familysupport position assisted patients’ families in communication and resulted in higher satisfaction ratings among patients’ families. To assist ICU nurses working under duress from abusive families of patients, a communication tool that includes suggestions for behavioral interventions42 was recommended. Supervision of the clinical staff by a clinical nurse specialist helps resolve difficult situations and increase job satisfaction, reduce burnout, and increase retention.39 In addition, the unresolved distress and emotional intensity disclosed in these sentinel events signal a need for nurses’ debriefing, possible counseling38,43 and administrative management of unsafe working conditions. This study provided data about a gap in the literature regarding roles, communication, and relationships of the trio of families of ICU patients, physicians, and nurses. Our findings were not unlike the results reported by others who have explored some aspects of intensive hospital visitation policies,3-9 making a number of solutions applicable to aid movement toward a patient-centered model.
Limitations Patients’ families were reluctant to express the truth because of fear of retribution: “I don’t want to get her into trouble for fear, you know, she’d be left there with him.” Patients’ families, physicians, and nurses had difficulty scheduling participation because of their perceived need to remain near the ICU.
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Generalizability of findings is limited, future research should include more males in focus groups and contrast and compare findings among patients’ families, nurses, and physicians on units that do and do not embrace a patient-centered philosophy.
Conclusions These exploratory methods have shown merit in understanding the issues, potential barriers, and needs of patients’ families, nurses, and physicians related to ICU visitation at a large, academic, tertiary care, inner city, medical center. These findings are essential for building meaningful and impactful change interventions as part of a project aimed to embed a patient-centered ICU culture throughout the hospital. FINANCIAL SUPPORT A University of Alabama at Birmingham School of Nursing Dean’s Scholar Award was provided to Dr Alexandrov as support for this project. eLetters Now that you’ve read the article, create or contribute to an online discussion on this topic. Visit www.ajcconline.org and click “Responses” in the second column of either the full-text or PDF view of the article.
SEE ALSO For more about family presence in critical care, visit the Critical Care Nurse Web site, www.ccnonline.org, and read the article by Bishop, et al, “Family Presence in the Adult Burn Intensive Care Unit During Dressing Changes” (February 2013).
REFERENCES 1. Liu V, Read JL, Scruth E, Cheng E. Visitation policies and practices in US ICUs. Crit Care. 2013;17:1-7. 2. Farrell J, Joseph DH, Schwartz-Barcott D. Visiting hours in the ICU: finding balance among patient, visitor, and staff needs. Nurs Forum. 2005;40(1):18-28. 3. Engström A, Söderberg S. The experiences of partners of critically ill persons in an intensive care unit. Intensive Crit Care Nurs. 2004;20:299-308. 4. Söderström I, Saveman B, Benzein E. Interactions between family members and staff in intensive care units: an observation and interview study. Int J Nurs Stud. 2006;43:707-716. 5. Hughes F, Bryan K, Robbins I. Relatives’ experiences of critical care. Nurs Crit Care. 2005;10:23-30. 6. McKiernan M, McCarthy G. Family members’ lived experience in the intensive care unit: a phenomenological study. Intensive Crit Care Nurs. 2010;26:254-261. 7. Cypress B. The lived ICU experience of nurses, patients and family members: a phenomenological study with Merleau-Pontian perspective. Intensive Crit Care Nurs. 2011;27 (5):273-280. 8. Karlsson C, Tisell A, Engström A, Andershed B. Family members’ satisfaction with critical care: a pilot study. Nurs Crit Care. 2011;16(1):11-18. 9. Eriksson T, Bergbom I, Lindahl B. The experiences of patients and their families of visiting whilst in an intensive care unit: a hermeneutic interview study. Intensive Crit Care Nurs. 2011;27(2):60-66. 10. World Health Organization. Health Promoting Hospitals Network. World Health Organization website. http://www .euro.who.int/en/health-topics/Health-systems/public-healthservices/activities/health-promoting-hospitals-network-hph. Accessed May 5, 2014.
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11. Centers for Medicare and Medicaid Services. Hospital consumer assessment of healthcare providers and systems. Hospital Consumer Assessment of Healthcare Providers and Systems website. http://www.hcahpsonline.org. Accessed April 12, 2013. 12. Institute of Patient- and Family-Centered Care. Visiting/family presence. Institute of Patient- and Family-Centered Care website. http://www.ipfcc.org/advance/topics/family-presence.html. Accessed April 22, 2014. 13. Berwick D, Kotagal M. Restricted visiting hours in ICU’s: time to change. JAMA. 2004;292:736-737. 14. Don Berwick’s challenge: eliminate restrictions on visiting hours in the intensive care unit. Institute for Healthcare Improvement Web site. http://www.ihi.org/knowledge/Pages /ImprovementStories/DonBerwicksChallengeEliminate RestrictionsonVisitingHoursintheIntensiveCareUnit.aspx. Published April 2011. Accessed April 22, 2014. 15. AACN Practice Alert. Family Presence: Visitation in the Adult ICU. American Association of Critical-Care Nurses website. http://www.aacn.org/WD/practice/docs/practicealerts /family-visitation-adult-icu-practicealert.pdf. Published November 2011. Accessed April 22, 2014. 16. American Nurses Credentialing Center. Forces of magnetism. American Nurses Credentialing Center website. http:// www.nursecredentialing.org/Magnet/ProgramOverview /HistoryoftheMagnetProgram/ForcesofMagnetism. Accessed April 22, 2014. 17. Institute for Patient- and Family-Centered Care. Frequently Asked Questions. Institute for Patient- and Family-Centered Care website. http://www.ipfcc.org/faq.html. Published December 2010. Accessed April 22, 2014. 18. Obama B. Presidential Memorandum: Hospital Visitation. Washington, DC: The White House; April 15, 2010. 19. Society of Critical Care Medicine. Clinical practice guidelines for support of the family in the patient-centered intensive care unit: American College of Critical Care Medicine Task Force 2004-2005. Crit Care Med. 2007;35:605-622. 20. Sims JM, Miracle VA. A look at critical care visitation: the case for flexible visitation. Dimens Crit Care Nurs. 2006;25:175-180. 21. Livesay S, Gilliam A, Mokracek M, Sebastian S, Hickey J. Nurses’ perceptions of open visiting hours in neuroscience intensive care unit. J Nurs Care Qual. 2005;20:182-189. 22. Lee MD, Friedenberg AS, Mukpo DH, Conray K, Palmisciano A, Levy MM. Visiting hours policies in New England intensive care units: strategies for improvement. Crit Care Med. 2007;35(2):497-501. 23. Slota M, Shearn D, Potersnak K, Haas L. Perspectives on family-centered, flexible visitation in the intensive care unit setting. Crit Care Med. 2003;31(5 suppl):S362-S365. 24. Krapohl G. Visiting hours in the adult intensive care unit: using research to develop a system that works. Dimens Crit Care Nurs. 1995;14(5):245-258. 25. Eriksson T, Bergbom I. Visits to intensive care unit patients: frequency, duration, and impact on outcome. Nurs Crit Care. 2007;12(1):20-26. 26. Davidson JE, Powers K, Hedayat KM, et al. Clinical practice guidelines for support of the family in the patient-centered intensive care unit: American College of Critical Care Medicine Task Force 2004-2005. Crit Care Med. 2007;35(2):605-622. 27. Gonzalez CE, Carroll DL, Elliott JS, Fitzgerald PA, Vallent HJ. Visiting preferences of patients in the intensive care
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unit and in a complex care medical unit. Am J Crit Care. 2004;13(3):194-197. Roland P, Russell J, Richards KC, Sullivan SC. Visitation in critical care: processes and outcomes of a performance improvement initiative. J Nurs Care Qual. 2001;15(2):18-26. Dawson S, Manderson L, Tallo VL. WHO Social and Economic Research, & UNDP/World Bank/ Who Special Programme for Research and Training in Tropical Diseases: A Manual for the Use of Focus Groups. Boston, MA: International Nutrition Foundation for Developing Countries; 1993. Miles M, Huberman A. Qualitative Data Analysis. 2nd ed. Beverly Hills, CA: Sage; 1994. Curtis J, White D. Practical guidance for evidence-based ICU family conferences. Chest. October 2008; 134(4):835843. Gooding T, Pierce B, Flaherty K. Partnering with family members to improve the intensive care unit experience. Crit Care Nurs Q. 2012;35(3):216-222. Cypress B. Family presence on rounds. Dimens Crit Care Nurs. 2012;31(1):53-64. The Joint Commission. Advancing Effective Communication, Cultural Competence, and Patient- and Family-Centered Care: A Roadmap for Hospitals. Oakbrook Terrace, IL: The Joint Commission; 2010. Smith D. Nurse-patient communication. In: Keltner NL, Bostrom CE, McGuinness TM, eds. Psychiatric Nursing. 6th ed. St Louis, MO: Elsevier Treece, Mosby; 2011:60-66. Moore CD, Bernardini GL, Hinerman R, et al. The effect of a family support intervention on physician, nurse, and family perceptions of care in the surgical, neurological, and medical intensive care units. Crit Care Nurs Q. 2012;35(4):378-387. Curtis JR, Ciechanowski PS, Downey L, et al. Development and evaluation of an interprofessional communication intervention to improve family outcomes in the ICU. Contemp Clin Trials. 2012;33:1245-1254. Embriaco N, Papazian L, Kentish-Barnes N, Pochard F, Azoulay E. Burnout syndrome among critical care healthcare workers. Curr Opin Crit Care. 2007:13(5):482-488. Wolf ZR, Robinson-Smith G. Strategies used by clinical nurse specialists in ‘‘difficult’’ clinician-patient situations. Clin Nurs Spec. 2007;21(2):74-84. Douglas SL, Daly BJ, Lipson AR. Neglect of quality-of-life considerations in intensive care unit family meetings for long-stay intensive care unit patients. Crit Care Med. 2012; 40(2):461-467. Obringer K, Hilgenberg C, Booker K. Needs of adult family members of intensive care unit patients. J Clin Nurs. 2012; 21:1651-1658. Thomson A, Makic MB. ICU visitation guidelines: embracing best practice. Crit Care Nurse. 2012;32(2):e42. May DD, Grubbs LM. The extent, nature, and precipitating factors of nurse assault among three groups of registered nurses in a regional medical center. J Emerg Nurs. 2002; 28(1):11-17.
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Families in Critical Care
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RADITIONAL/RESTRICTIVE
PATIENT-CENTERED INTENSIVE CARE UNIT VISITATION: PERCEPTIONS OF PATIENTS’ FAMILY MEMBERS, PHYSICIANS, AND NURSES VS
By Bettina H. Riley, RN, PhD, Joseph White, RN, DNP, NE-BC, Shannon Graham, RN, DNP, and Anne Alexandrov, RN, PhD, CCRN, NVRN-BC, ANVP-BC
This article is followed by an AJCC Patient Care Page on page 325. ©2014 American Association of Critical-Care Nurses doi: http://dx.doi.org/10.4037/ajcc2014980
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Background Patient-centered intensive care units (ICUs) are advocated by professional organizations for critical care nursing and medicine. The patient-centered ICU paradigm recognizes the patient-family unit as inseparable and supports visitation designed to meet the needs of patients and patients’ families. Objectives To understand perceptions about patient-centered ICUs among patients’ family members, physicians, and nurses from 5 ICUs that had restrictive visitation and to guide development of a patient-centered, open visitation paradigm. Methods Patients’ family members, nurses, and physicians from 5 ICUs with a traditional/restrictive visitation policy at a southeastern academic, tertiary care hospital were invited to participate in focus group meetings to understand perceptions about patient-centered care. All qualitative work was taped, transcribed, reviewed, and corrected after each session. Corrected transcripts and observer notes were integrated and coded. Results Patients’ families identified facilitators of patientcenteredness as nurses’ and physicians’ communication, concern, compassion, closeness, and flexibility. However, competing roles of control over the patient’s health care served as barriers to a patient-centered paradigm. Conclusions Patient-centered care is an expectation among patients, patients’ families, and health quality advocates. These exploratory methods increased understanding of the powerful perceptions of family members, physicians, and nurses involved with patient care and provided direction to plan interventions to implement patient-centered, family-supportive ICU services. (American Journal of Critical Care. 2014;23:316-324)
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raditional, non-patient-centered environments prevent patients’ families from visiting their loved ones except during predesignated, time-limited periods interspersed throughout a long hospital day.1,2 Dissatisfaction with this traditional visitation paradigm has pushed families to become more involved in their loved one’s care with a greater focus on the transparency of health-care quality.3-11 This focus is evidenced by calls to action for hospitals to examine their current intensive care unit (ICU) visitation practices12-19 and to try entirely open, nonrestrictive ICU visiting, labeling any visiting restrictions as a relic, unnecessary, and potentially harmful to the patient’s safety.13,14
Open visitation is among the defining elements of a patient-centered approach.12 Patientcentered care revolves around the patient, not the physician, nurses, or the facility, and is a priority identified by the American Association of CriticalCare Nurses (AACN).15 In addition, to achieve a Magnet Recognition Program, exemplifying excellence in nursing practice, hospitals must adopt a conceptual framework that includes family-centered care.16 Family-centered care and patient-centered care are simultaneous approaches toward self-governance of health care.11 Despite worldwide and national priorities/standards incorporating families into the decision making and care of ICU patients,10-19 as many as 90% of ICUs in US hospitals have a restrictive visitation policy.1 Restricted ICU visitation traditions foster beliefs that visitors obstruct nursing and medical care, exhaust patients, interfere with healing and/or cause negative physiological effects, pose an increased infection risk, jeopardize patients’ privacy, and create unsafe environments.13,17,20-22 Other studies12,13,20,21,23-28 have shown contrary findings; family visitation contributed to improved physiological measures and
About the Authors Bettina H. Riley is an assistant professor at University of South Alabama, College of Nursing, Mobile, Alabama. Joseph White is a nurse manager in the heart lung transplant unit at University of Alabama at Birmingham (UAB) Hospital in Birmingham, Alabama. Shannon Graham is Magnet program director and advanced nursing coordinator, Center for Nursing Excellence, UAB Hospital. Anne Alexandrov is assistant dean for program evaluation, professor, and program director, doctor of nursing practice and NET SMART, UAB School of Nursing and UAB Comprehensive Stroke Research Center, Birmingham, Alabama. Corresponding author: Bettina H. Riley, RN, PhD, University of South Alabama, College of Nursing, Baldwin County Campus, 161 North Section Street, Suite C, Fairhope, Alabama 36532 (e-mail: [email protected]).
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lower stress for patients and increased job satisfaction for nurses. As this study was the first phase of a patientcentered care project, the aims were to examine perceptions related to traditional/restricted ICU visitation among patients’ families, nurses, and physicians, to understand barriers and issues, and to gauge the generalizability of others’ work. Understanding the barriers to patient-centered care may support future interventions aimed at reshaping the current ICU culture to align with a patient-centered paradigm.
Methods
Open visitation is among the defining elements of a patient-centered approach.
This study’s setting was an academic, tertiary care, Magnet Recognition Program hospital with a level I trauma center designation and 900 licensed adult beds. Approval was obtained from the institutional review board for human subjects research. Five of 8 ICUs adhering to a traditional restrictive visitation policy were the focus of this project (trauma, surgical, medical, neurosurgical, cardiothoracic surgery), each with 20 to 28 beds. All 5 units posted similar strictly enforced visiting hours, limiting visitation to 2 people for 30-minute visits, 4 times a day.
Design Focus Groups Criteria for participation were as follows: the family member’s patient must be 18 years or older with a minimum ICU stay of 72 hours, and the family member participant must be 18 years or older, speak English, and must have visited the ICU patient at least twice. Three family focus group meetings were held on different days and preceded 2 focus groups for nurses and 1 focus group for physicians that met on the same day. Participants
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Table 1 Roles in the intensive care unit (ICU) Role Patient’s family
Function and examples Provide a calming effect: “I’ve asked them that when he starts to wake up, could I be in there because I know that when I’m with him I can have a calming effect on him.” Role as surrogate: “I feel real safe and secure that they’re in there treating him, but I need to know sometimes, my husband’s in a paralytic state so he can’t speak for himself, so I’m the one they need to be telling things [to] and keep me informed of what’s going on with him.” Provide motivation: “I want him to hear my voice. I want to talk soothingly to him; I want to tell him, to motivate him to keep fighting.” Provide reassurance: “…having that loving family care, just to let them know that we’re here, that we didn’t just leave you here and let these people take care of you. We’re still out here, and we still love you.”
Physician
Not in support of open family visitation: “Twenty-four hour visitation is not preferred. It is not possible.” Role of the family prominent when [patient] discharged from the ICU: “…it is an integral part of what we’ve done for that patient, have their family visit. It’s important for the family, because the family is who’s going to take care of this patient when they make it out of the ICU.” Opposition to open visitation seen as safeguarding the [patient’s] family and patient: “I think it would be too stressful for many family members to see the scalpel being used to place a tube inside somebody’s chest.”
Nurse
Open visitation negatively affects patient care: “…if I’m gonna spend an hour talking to [the patient’s] family, that is an hour of patient care that I’m not giving.” Patient’s family should not be denied visitation: “…the fact is, these patients, belong to family who care about them and who should not be denied the opportunity to, have interaction, that, that’s my opinion.”
included attending physicians practicing in the ICUs and nurses chosen from all shifts in the 5 ICUs. Data Collection and Analyses All focus group sessions were voice recorded and facilitated by 1 group leader and 1 assistant. Written informed consent was provided by all focus group participants. Transcriptions from the voicerecorded tapes were analyzed by following procedures and guidelines developed by Lee et al,22 Dawson et al,29 and Miles and Huberman.30
Results The focus groups consisted of 8 different female family members representing 4 of the 5 ICUs; 2 male physicians and 1 female physician represented rotations in all but the surgical ICU; and 1 male nurse and 6 female nurses represented all 5 ICUs. Feelings and beliefs about families’ ICU visitation experiences varied among the patients’ families, physicians, and nurses. Role of Families Patients’ family members thought that they knew their ICU family member better than anyone and were in the best position to provide a voice for
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and emotional support to their loved one (Table 1). Through vigilant watchfulness, interpretations of body movements or noises (eg, tracheotomy sounds, facial expressions), and recognition of the patient’s needs (eg, repositioning), the family member performed, assisted, or initiated an intervention. As surrogates, patients’ family members believed that they “should always be involved” and should have the opportunity to ask as many questions as necessary to satisfy their decision-making needs. In addition, the physicians and nurses needed to explain to them what was occurring with their family member’s medical care (Table 1). Physicians agreed that patients’ families had a role in the ICU; they did not agree that this role coincided with a stationary physical presence in the ICU. Physicians were not in support of open family visitation but viewed the role of patients’ families as prominent once the patients are discharged from the ICU (Table 1). Physicians saw themselves as opposing 24-hour visitation to safeguard the patients’ families and patients (Table 1). Nurses were divided about the roles of patients’ families in the ICU, with beliefs ranging from opposing open visitation in the ICU, to stating that open visitation would detract from patient care (Table 1),
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Table 2 Communication Role Patient’s family
Function and examples Felt scared: “…it would be nice to have them every 2 or 3 days, or even…once a week would be nice, instead of waiting until it’s something major, and then they all crowd around you, you know like they’re fixing to take him to surgery…and they’re just all there, like instantly come out from everywhere and you’re forced to make these decisions all at once. It’s kinda scary.” Want health-care workers to demonstrate empathy, suggesting that they need: “…some way to let them help touch the experience without actually ever having it.” Communication process taken for granted: “I’ve been here 7 weeks now. They would come in, when we would come in, ask us, if we had any questions or introduce [themselves], if they were the nurse....now we’ve been here this long, sometimes they do, sometimes they don’t.” When describing nurses caring for other patients as well as their loved one, this family member went on to say, “…they’ll come in later cause they’d have to answer their main patient first. They seem not to, to want to share as much, I guess you could say.” Wanted more face time with their physician: “…if they could make a time, or some, some way that the doctor could speak with you. I know they can’t speak with us every day, but at least every 2 days.”
Physician
No time to spare for family communication: “My duty and my obligation is to that patient first, and not the [patient’s] family.”
Nurse
Families became demanding: “I think the longer the patient is there, the pickier the [patient’s] family gets, and it gets harder. It’s like daddy’s not getting any better, so it must be your fault, … he’s not getting any better, cause you’re not taking care of him.” “…that family member doesn’t understand that you cannot be over there to answer the questions.…you might say, ‘Hi,’ real quick, cause you have to be in this room…you know they’re dying.”
to the belief that patients belong to their families who care about them and that patients’ families should not be denied visitation opportunities. Nurses’ beliefs also included that the best examinations of patients occurred when patients’ families were present and that taking care of the patients’ family might be the only gift that a nurse can give to a dying patient (Table 1). Communication Patients’ families, physicians, and nurses believed that sharing information about a patient’s health status was important and necessary. Families felt “panic” if their loved one’s health status was not reported in a timely manner and felt scared making caregiver decisions that were based on infrequent medical updates (Table 2). Families felt comforted when greeted with personal inquiries and given a progress report on their loved one’s condition. In addition, patients’ families wanted health status information delivered from the physician, referencing “adequate” delivery from nurses but that physicians were the only ones who could provide certain information (eg, prognosis). Communication content was also important. One family member anticipated her husband’s discharge when told that her husband was “stable,” but the physician stated, “No, stable means ‘critically stable’ in the ICU”; the family member labeled
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“critically stable” as a “new word” but paradoxical. Another family member stated that health care workers needed to “learn how to talk to patients’ family members” and to demonstrate empathy (Table 2). One family member mentioned that the longer the ICU stay, the more the communication process was taken for granted (Table 2). Physicians shared beliefs that patients’ families, as the primary caregivers outside the ICU, should receive detailed information about patients. Yet, physicians also believed their primary obligation was to patient care. Physicians stated that making rounds included acute interventions and there was no time to spare for communicating with patients’ families (Table 2), and as teachers, they attributed their time constraints to new, stricter, rounding schedules for their resident physicians. Physicians stated that communication with patients’ families could be delegated to other members of the health-care team (eg, resident physicians, nurses). Nurses believed that they were advocating for patients when they sought information from physicians, from patients’ medical reports, and shared it with patients’ families, but felt that depending on the hospital unit, in addition to workload, emergent
Nurses believed that the best examinations of patients occurred when patients’ families were present.
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Table 3 Convenience and flexibility of visiting times in the intensive care unit (ICU) Role Patient’s family
Function and examples The wait to visit perceived as a helpless period: “You’ve had to care for someone as deeply as we do, and then wonder what’s going on, on the other side of that door… feel so helpless.” Nurses and physicians needed time to perform procedures or medical routines: “…I’m okay with that, but you know I’d stay in there all the time, stand in the corner somewhere.” Delay visitation: “… he was naturally asleep and…I know that when a sick person is asleep their body is healing better then, so I don’t want to wake him up,” or if they became overwhelmed, “… he’s never been in ICU before…and I couldn’t stay, somedays I didn’t even stay in their 5 minutes, because of his condition, and I could not cope with it.” Special visits: “…he may not make it…time is very precious right now.” Visitation times: “…very tiring being here from early in the morning to that late at night, and the first morning visit was too late in the day; …I know that in the mornings they’re probably doing the baths and getting everything ready, but when you can’t see somebody ‘til 10:30 AM, sometimes that’s a little late for me.”
Physician
Patients’ rights as a barrier to open visitation: “Our ICUs are not set up logistically to allow throughput of people at any time of the day and protect patients’ rights.”
Nurse
Family naïve of actual needs and health status of patient: “We make ‘em look good, we clean ‘em up, we prop their hands up on pillows, they look perfect…and they think they’re fine.”
situations were a barrier to timely communication with patients’ families (Table 2). Nurses also believed that the longer a patient’s ICU stay or when the patient’s condition had deteriorated, the more demands from patients’ families (Table 2). Convenience and Flexibility of Visiting Times Patients’ families, physicians, and nurses were far from similar in their beliefs about visitation. An ICU family described the wait to visit as a period of being helpless (Table 3). Patients’ families preferred to have access to visitation on a continual basis but expressed an understanding that nurses and physicians needed time to perform procedures or medical routines (Table 3). Patients’ families wanted options to delay or postpone visitation when the patient was unavailable (eg, asleep, undergoing a procedure); patients’ families feared that the patient might not survive procedures (Table 3). Furthermore, patients’ family members did not prefer visitation times at or later than 8:30 PM or before 10:00 AM, believing that the late evening times placed them in an unsafe inner city environment and the late morning time was too late in the day (Table 3). Physicians believed that 24-hour visitation was “not preferred; not an option.” In addition, physicians stated that providing procedural oversight/instruction to residents or medical students might reduce the family’s confidence in the delivery of medical treatment. Physicians also identified patients’ rights as a barrier
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to open visitation (Table 3). However, physicians were not opposed to some flexibility in visitation, recognizing that when patients’ family members first arrive from out of town, or any time after a surgery or procedure, they may need additional visitation time “to see . . . that their loved one’s okay.” Nurses were varied in their feelings about open visitation. Some endorsed open visitation, believing that patients’ families are naïve of patients’ needs and health status when allowed only “snapshots in time” (Table 3). Furthermore, if exposed to a medical procedure, families might understand better the complexities and demands of ICU care; if at the bedside longer, they could assist with activities of daily living. However, other nurses thought that if patients’ families were there longer, nurses’ workload would increase, while others believed that open visitation did not necessarily equate to constant bedtime presence because patients’ families would visit only intermittently. Many nurses had a flexible visitation approach, allowing substituted visits for missed visits, an extra visit before a procedure, or prolonged visits. Confidence, Trust, and Relationships Patients’ families qualified their perceptions about ICU visitation on the basis of the individuals involved. Ideals or “favorites” were identified by patients’ family members as those nurses who were compassionate, caring, professional, knowledgeable, flexible, informative, accessible, approachable,
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Table 4 Confidence, trust, and the relationship with nurses and physicians Role Patient’s family
Function and examples Ideals or “favorites” were identified by family members; better outcomes: “I don’t go home unless she’s going to be on duty those 2 days. That’s how confident I am in her, I really am.” “Well, I can tell you that my patient has had some favorites, and you can tell the ones that are so good because his numbers (physiological measures on the bedside monitor) look better...” Offering advice – inappropriate role: “A nurse who I had never spoken to before…told me that I needed to consider just how long we were going to keep him on life support, that…I need to have a talk with him and we needed to decide just when we were going to take him off of life support.” Continuing, this family member stated, “And it still upsets me, because when we started this ordeal, his primary care doctor told me, ‘sometimes in a case like this we reach a point where there’s nothing else that we can do.’ And he said, ‘if that time comes, I will be the one to come and discuss it with you.’” Frustrated with lack of relationship with the physician: “…they know when the visiting hours are. And they don’t have a problem doing a procedure when it’s visiting hours…they could take the time to come and spend it with the family.”
Physician
Not enough time: “If I were rounding and taking care of patients and the family member stopped me for every single question they wanted to know, I wouldn’t be able to deliver adequate care to the next person…it’s just not physically possible…I want to help the family…but that is my secondary concern.” Too many physicians seeing a patient in an academic facility: “…the patient is not necessarily being seen by the same doctor every day, the same resident, so there’s a lack of continuity…that inhibits their ability to feel truly connected and configured into the plan.”
Nurse
Instruct family about the family member’s conduct during the visit: “I think as nurses we have to…say, ‘let’s have a quiet visit…I know that you want to visit with her, but this may be an appropriate time to just hold their hands, and just accept the fact that they’re gonna sleep, and I would appreciate it if you would let them sleep.’ …I’ve done that so many times as a bedside nurse, and I think they appreciate that as long as you give them a reason why.” Family aggression and conflict were common: “…in a trauma setting…we have family members that come up that are fighting mad.” “And there have been nights where if there was not a door between us and them, they would come after us.” Feelings of being “policed”: “…it doesn’t matter if they come from whatever kind of nursing background, or social work background…they’re policing us. That’s their job, and they’ll stand at the bedside to police us, to make sure we’re doing what we’re supposed to do.” Provide too much education and at inopportune times: “…sometimes I feel that our education comes at inopportune moments…we inundate them with all of this information and then expect you to understand every time you come in…every time you call…it seems like we expect people to understand way too fast.”
available, funny, and trustworthy (Table 4). In contrast, patients’ families identified unprofessional behaviors of providing no explanation when barred from visiting or when a nurse new to the family member provided unsolicited, disturbing “advice” about removing her husband from life support after he had started treatment with dialysis only 4 hours earlier (Table 4). Furthermore, patients’ family members stated that nursing care was better when the patient to nurse ratio was 1 to 1. Patients’ families wanted a better relationship with more face time with their physician, recognizing that there could be numerous physicians involved in the care of their loved one (Table 4). One family member was frustrated with not seeing the doctor at least during visitation and another wanted, aside from emergency communications, weekly updates.
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The physicians wanted the patients’ families to know that the physicians were accessible, but the physicians believed that they did not have the time to spend with patients’ families and still accomplish their priority: direct patient care (Table 4). Existing relationships were often not face to face, and although physicians expressed a preference to meet in person initially, doing so was not a priority and phone contact after rounding was seen as a practical way of responding to the concerns of patients’ families. Physicians agreed with patients’ families that the volume of physicians seeing a patient in an academic facility was a barrier to an ideal relationship between physicians and patients’ families (Table 4). ICU nurses described their relationship with visiting patients’ family members on the basis of the individual, with each having “completely different”
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expectations such as undivided and complete availability of the nurse. Unfulfilled expectations of patients’ families might result in complaints to the nurse’s manager. In 1 case, a patient’s family did not believe a diagnosis and a representative was chosen to look at the patient’s records to “make sure that we’re doing our job like we’re supposed to,” leading to feelings of being “policed” (Table 4). Furthermore, nurses felt “frightened by the situations that patients bring with them to the hospital,” such as fights between family members and visitors “threatening to finish the job” and assumed the responsibility of “keeping people safe, that’s the biggest thing ever.” Several nurses also reported being physically injured by families of patients and feeling unsafe at work.
A nurse-led initiative showed that participation of patients’ families did not significantly slow down rounds.
Discussion The aims of this study were to understand the barriers to patient-centered care. Understanding the barriers will aid in the design and implementation of patient-centered milieus. Role of Families Empowerment of patients’ families is essential in advancing family roles in a patient-centered care environment.31 The integration of patients’ families in physicians’ rounds benefits the families’ surrogate decision-making and patient care processes.7 In spite of the physicians’ and nurses’ stance that open visitation was a barrier to patient care, a nurseled initiative showed that participation of patients’ families did not significantly slow down rounds, but eliminated the need for lengthy family conferences.32 However, Cypress,33 in her review of the literature, stated that sparse research in this area called for advanced practice nurses to examine the roles of patients’ family members, physicians, and nurses during unrestricted visiting, rounds, and end-of-life situations.
Implementation of a partnership model of care may reduce communication deficits.
Communication Effective communication, being empathetic and available, avoiding personalization, and listening therapeutically are integral parts of patient-centered care.34,35 Deficits in physicians and nurses’ availability, engagement, and therapeutic communication found here could be addressed by the implementation of a
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partnership model of care, which has reduced communication deficits and improved role confusion in other settings.32 By providing a welcoming environment, involving patients’ family members in ICU operations with open visitation, bedside reporting, manager rounding, including patients’ family members in physician rounding, enabling patients’ families to call for a rapid response team and request an ethics consultation, this model conserved time for physicians contributing hours back to direct patient care, and improved evaluations of communication between patients’ families and nurses and job satisfaction scores among nurse managers. Ratings by patients’ families (not physicians or nurses) of satisfaction with ICU team communication were increased by addition of a family support person,36 indicating the need to determine further what barriers to communication exist for physicians and nurses. Furthermore, the intervention of a communication facilitator (nurse or social worker) revealed that the breakdowns in communication were more common and serious after ICU discharge, the opposite of what physicians here thought was most important,37 suggesting that a communication process initiated before a patient’s’ discharge should be examined to prevent a total disconnect with the patient. Burnout in nurses could be the answer to the decline in health-care workers’ communication that patients’ families experienced with longer stays in the ICU and the increased caregiver burden experienced by patients’ families who had members with extended ICU stays. Among the reasons for burnout in nurses and physicians are relationships between coworkers and supervisors, conflicts with patients, and caring for dying patients.38 Placement of a clinical nurse specialist who provides education about working with patients in difficult situations and burnout assists in reducing burnout and increasing job satisfaction among nurses.39 These findings also supported quality-of-life discussions in the ICU that were not regularly recognized, managed, or appropriately discussed.40 Consideration should be given to training staff in communications related to end of life by using techniques40 such as forming a support team or use of bereavement carts stocked with information and resources, hand casts, and books on grieving.32 Convenience and Flexibility of Visiting Times Viewing visitation as a privilege, not a right, was not uncommon in the ICUs, where the nurses were clearly in charge of visitation and where, depending on the nurse’s attitude, some families clearly
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benefited, while others experienced stress from rigid rules. Open visitation installed through a partnership model of care using a major change intervention facilitated this major culture shift.32 Use of this same model allowed reduction in ICU interruptions stemming from outside sources (eg, phone calls) by 40%, and practical needs (food, hotels, pillows, blankets) were addressed by support personnel rather than clinical staff.32,36 Physicians’ concerns related to residents practicing in an open visitation environment remain an area of needed research. Confidence, Trust, and Relationships Patients’ families in this study and in a similar study41 valued trust of the health-care provider; however, confidence, trust, and relationships between patients’ families, physicians, and nurses varied from intimate to nonexistent. Role confusion and poor communication contribute to poor outcomes in these areas between these key stakeholders.35 One study’s intervention that improved these relationships was focused on physician and manager rounding with patients’ families.32 Researchers in other studies36 reported that establishment of a familysupport position assisted patients’ families in communication and resulted in higher satisfaction ratings among patients’ families. To assist ICU nurses working under duress from abusive families of patients, a communication tool that includes suggestions for behavioral interventions42 was recommended. Supervision of the clinical staff by a clinical nurse specialist helps resolve difficult situations and increase job satisfaction, reduce burnout, and increase retention.39 In addition, the unresolved distress and emotional intensity disclosed in these sentinel events signal a need for nurses’ debriefing, possible counseling38,43 and administrative management of unsafe working conditions. This study provided data about a gap in the literature regarding roles, communication, and relationships of the trio of families of ICU patients, physicians, and nurses. Our findings were not unlike the results reported by others who have explored some aspects of intensive hospital visitation policies,3-9 making a number of solutions applicable to aid movement toward a patient-centered model.
Limitations Patients’ families were reluctant to express the truth because of fear of retribution: “I don’t want to get her into trouble for fear, you know, she’d be left there with him.” Patients’ families, physicians, and nurses had difficulty scheduling participation because of their perceived need to remain near the ICU.
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Generalizability of findings is limited, future research should include more males in focus groups and contrast and compare findings among patients’ families, nurses, and physicians on units that do and do not embrace a patient-centered philosophy.
Conclusions These exploratory methods have shown merit in understanding the issues, potential barriers, and needs of patients’ families, nurses, and physicians related to ICU visitation at a large, academic, tertiary care, inner city, medical center. These findings are essential for building meaningful and impactful change interventions as part of a project aimed to embed a patient-centered ICU culture throughout the hospital. FINANCIAL SUPPORT A University of Alabama at Birmingham School of Nursing Dean’s Scholar Award was provided to Dr Alexandrov as support for this project. eLetters Now that you’ve read the article, create or contribute to an online discussion on this topic. Visit www.ajcconline.org and click “Responses” in the second column of either the full-text or PDF view of the article.
SEE ALSO For more about family presence in critical care, visit the Critical Care Nurse Web site, www.ccnonline.org, and read the article by Bishop, et al, “Family Presence in the Adult Burn Intensive Care Unit During Dressing Changes” (February 2013).
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