Journal of Critical Care 30 (2015) 866–870

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E-ICU/Communication

Sharing intimacy in “open” intensive care units Valentina Di Bernardo a,b, Nicola Grignoli b,c,⁎, Chantal Marazia b,d, Jennifer Andreotti e, Andreas Perren f, Roberto Malacrida b a

Intensive Care Unit, Ospedale Regionale di Lugano, Ente Ospedaliero Cantonale, Lugano, Switzerland Sasso Corbaro Medical Humanities Foundation, Bellinzona, Switzerland Psychiatry Consultation Liaison Service, Organizzazione Sociopsichiatrica Cantonale, Mendrisio, Switzerland d Département d’Histoire des Sciences et de la Vie et de la Santé, University of Strasbourg, Strasbourg, France e Department of Psychiatric Neurophysiology, University Hospital of Psychiatry, Bern, Switzerland f Intensive Care Unit, Ospedale Regionale Bellinzona e Valli, Bellinzona, Switzerland b c

a r t i c l e

i n f o

Keywords: Intensive care Critical care Ethics Psychology Surrogate decision making ICU visiting policy

a b s t r a c t Purpose: Opening intensive care units (ICUs) is particularly relevant because of a new Swiss law granting the relatives of patients without decision-making capability a central role in medical decisions. The main objectives of the study were to assess how the presence of relatives is viewed by patients, health care providers, and relatives themselves and to evaluate the perception of the level of intrusiveness into the personal sphere during admission. Material and methods: In a longitudinal and prospective design, qualitative questionnaires were submitted concomitantly to patients, relatives, and health care providers consecutively over a 6-month period. The study was conducted in the 4 ICUs of the public hospitals of Canton Ticino (Switzerland). Results: The questionnaires collected from patients, relatives, and health care providers were 176, 173, and 134, respectively. The analysis of the answers of 120 patient-relative pairs showed consistent results (P b .0001), whereas those of health care providers were significantly different (P b .0001), regarding both the usefulness of opening ICUs to patient relatives and what was stressful during admission. Conclusions: Relatives in these “open” ICUs share a great deal of intimacy with the patients. Their presence and the deriving benefits were seen as very positive by patients and relatives themselves. Skepticism, instead, prevailed among health care providers. © 2015 Elsevier Inc. All rights reserved.

1. Introduction Liberalization of intensive care unit (ICU) visiting policies is still a subject of debate [1,2] and is a topic of particular relevance following the implementation of the new Swiss law, which grants the relatives of patients who no longer have decision-making capacities a central role in medical decisions [3]. The law establishes the physician's obligation to respect the previously stated wishes of the patients and the opinion of the surrogates in the decision-making process [4]. An “open ICU” is conceived as a unit in which visiting policies allow a better interaction between patients, relatives, and health care providers [5]. Various studies have shown that the opening up of ICUs has the advantage of improving communication with relatives [6–9], which is essential for an effective cooperation in the decision-making process as well as beneficial for both patients and family [10–13]. Opening up the units and cooperating with relatives are 2 practices that are regarded as a guarantee of the respect of the patients' autonomy and of the quality of care [10,14,15]. On the other hand, other articles have also highlighted a ⁎ Corresponding author at: Sasso Corbaro Medical Humanities Foundation, via Lugano 4b, CH-6500 Bellinzona, Switzerland. Tel.: +41 91 811 14 25; fax: +41 91 811 14 26. E-mail address: [email protected] (N. Grignoli). http://dx.doi.org/10.1016/j.jcrc.2015.05.016 0883-9441/© 2015 Elsevier Inc. All rights reserved.

persistent reluctance on the part of health care providers to the opening up of ICUs [16–19], the need for an organizational and psychological preparation for the liberalization of visiting hours [8–10,20], and the difficulties that the greater participation of relatives in the treatment process causes to all parties involved [7,21,22]. These factors may explain why—despite numerous international recommendations and guidelines suggesting a liberalization of visiting hours—both in Western Europe and in the United States, most ICUs continue to adopt a restrictive visiting policy [23–26,17,27]. Swiss ICUs have less restrictive visiting policies as compared with other Western countries and United States, but only few Swiss ICUs have unrestricted visiting hours [28]. Our study aimed, firstly, at assessing how the presence of relatives is viewed by patients, health care providers, and relatives themselves and, secondly, at evaluating the perception of the level of intrusiveness into the patient’s personal sphere during ICU admissions. Finally, we intended to compare the assessments provided by patients, relatives, and health care providers regarding relational aspects. To explore these aspects, we chose for our survey the term intimacy, intended as a close personal relationship based on exchange of feelings and emotions [29]. The reason for this choice is to go beyond the concept of confidential information (privacy) to include aspects that are in effect more emotional and linked to the personal sphere of

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the patients [30,31] and in relation to which relatives can have a representative role. The hypothesis tested in our study is that, in ICUs, the safeguarding of the intimacy of the patients can be better achieved through the mediation of relatives, who are more capable than health care providers of sharing patients' personal values during hospitalization.

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on duty during the study period. No exclusion criteria were defined for health care professionals. The study was approved by the Cantonal Ethics Committee, and patients and relatives were requested to sign a written informed consent. 2.3. Data collection

2. Materials and methods 2.1. Setting Our study, longitudinal and prospective, was carried out at the 4 ICUs of the hospitals belonging to the Ente Ospedaliero Cantonale (EOC), which is made up of the public hospitals of Canton Ticino, the Italian-speaking part of Switzerland (population 340 000 people as of 2012). These mixed ICUs located in the towns of Bellinzona, Locarno, Lugano, and Mendrisio have a total of 34 beds and treat about 3200 adult patients per year. Among the 159 nurses (with various degrees of occupation), 70% are critical care registered, whereas the remaining ones are registered nurses on specific training. Patient to nurse ratio is usually 1.5:1 during daytime and 2:1 during the evening and night shifts. The practice of involving patient relatives in the decision-making process has been in operation for a number of years in the ICUs of the hospitals belonging the EOC group. In these ICUs, formal access is allowed for 8 hours during the day; but in fact, visits are allowed during 24 hours and particular attention is paid for relatives’ participation in the care process. In this context, a meeting with family members is organized as soon as possible at the time of admission and at regular intervals during hospitalization, with a variable frequency depending on the patient’s clinical conditions and their evolution. The discussions involve the intensivist, the nurse in charge of the patient, and the specialist consultant involved in patient care (eg, neurosurgeon, surgeon, nephrologist). The interviews are documented in the patient folder. The nursing team, subsequently, has the task of answering questions that family members pose during their stay at the bedside and of organizing further meetings to clarify any doubts and provide them with more information and updates. This practice is intended to establish a relationship of trust and sharing between the ICU staff and family members, regardless of the need to make decisions with respect to the continuation of care [32,33]. 2.2. Procedures For this study, we designed an anonymous questionnaire with 21 multiple-choice questions on a Likert-4 scale with 3 different versions for patients (P), relatives (R), and health care providers (H). The survey questions were defined during an explorative phase that involved health care providers from different ICUs in Europe. The questions included in the final version of the questionnaire cover 2 pages and are preceded by a personal data section (see Supplementary Materials 1, 2, and 3 presenting the 3 questionnaires and relevant accompanying letters). The first 9 questions concern an overall evaluation of the presence of relatives in the ICUs. The following 12 questions investigate the issue of respect of the intimacy in the ICUs. In addition, relevant data including age, sex, length of stay, and Simplified Acute Physiology Score II were collected for all patients included in the study. All patients admitted to the ICUs between December 2011 and May 2012 and their relatives were screened for enrollment. For each admitted patient, 2 prestamped and numbered envelopes containing the questionnaires for the patient and 1 relative, respectively, were prepared. The contact nurse proposed the study to patients and relatives (identified as the most frequent accompanying person) during the first 48 hours of hospitalization in the ICU. The only exclusion criterion for patients was the inability to fill in the questionnaire. No exclusion criteria were defined for relatives. The questionnaire for health care providers was filled in by each physician, nurse, and care assistant who was

In the study period (6 months), 349 completed questionnaires were received from the 4 ICUs involved, corresponding to 173 patients and 176 relatives, with a response rate for patients, depending on the unit, ranging between 18.2% and 28.1% (mean, 23.5%) and for relatives ranging between 16.4% and 26.7% (mean, 24.1%). Among health care providers, 134 questionnaires were returned, corresponding to a response rate, depending on the unit, ranging between 51% and 90.6% (mean, 68.7%: physicians, n = 13; nurses, n = 108; care assistants, n = 13). The 2011 data on all patients admitted to the 4 ICUs were comparable to those of the study population, with the exception of the Simplified Acute Physiology Score II [34,35], which was lower in the study subjects (27.2 ± 11.3 in the study population vs 32.7 ± 17.4 in the 2011 general population, P b .010). One hundred and twenty dyads of patients and relatives were consecutively enrolled, and this sample is representative of the patients usually admitted in the 4 ICUs with a less severe clinical state and their relatives. The relatives designed by patients were in most cases spouses or partners (51.0%), children (23.8%), and parents (14.3%). Brothers and sisters (5.4%), friends (1.4%), and others classes (4.1%) were less represented. The relatives of patients who were either unconscious or incapable of responding (n = 14) were also included in the study; because of their limited number, these cases have not been analyzed separately. The 3 groups of patients, relatives, and health care providers could be compared because the same measuring instrument was used. 2.4. Statistical analysis All statistical analyses were performed with the IBM SPSS Statistics 20 software. The comparison of categorical data among groups was performed with the χ2 test or, in the case of aggregated groups with small frequency, with the Fisher exact test. Bonferroni correction was applied for multiple testing of pairs of groups. In addition, a logistic regression model was used to include age and sex as covariates in the analysis. Spearman rank correlation coefficient was used to analyze the relationship with ordinal variables. For the comparison of continuous variables, t-tests were used. Statistical significance was declared if the corrected rounded 2-tailed P value was b.05. 3. Results First of all, an important observation was that patients and relatives tended to answer in similar ways, whereas the answers of health care providers differ significantly from those of patients and relatives in all cases except one (Figs. 1, 2, and 3 and Supplementary Materials 1, 2, and 3). In addition, we tested the explanatory power on the answers of age, sex, severity, and duration of the period spent in hospital in all questions; and a statistically significant difference was found only for age in some questions. However, as age varied in the patients, relatives, and caregivers group, to understand if differences in perceiving intimacy were driven by age, a logistic regression was used including age as a confounder; and it was found that differences were better explained by the group variable than by the age. 3.1. Sharing of medical information regarding therapeutic procedures The first questions in the questionnaire evaluated the perceived medical information, presence of relatives, and their influence on the

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35.6%. The difference between pairs of groups is for both answers highly significant (Fig. 2 and Supplementary Materials 4, 5, and 6). 3.3. Presence of relatives in open ICUs and respect for the intimacy of the patient

Fig. 1. Information given by health care providers during care assistance. Differences among groups (χ2) and pairs of groups (patients, relatives/health care providers): P value = not significant.

quality of care. All 3 groups judged the medical information given on therapeutic procedures highly satisfactory. A total of 94.1% of patients and 96.5% of relatives said that they were often or always informed about the treatment in progress, and 92% of health care providers confirmed that they explained the treatment to the patients (Fig. 1).

3.2. Presence of relatives and quality of care The presence of relatives in the ICUs was judged as having a positive impact on the quality of care by the majority of patients (79.4%) and relatives (72.4%) and also, but to a lesser degree, by health care providers (53.3%). Another question asked to the patients was if the presence of relatives during treatment was helpful. The relatives and health care providers were asked instead what they thought the patient's answer to the question could be. A comparison of the data shows an error of perception of health care providers regarding the patients' point of view. In fact, patients and relatives answered positively (patients, 82.8%; relatives, 80.9%), whereas health care providers underestimated the help relatives provide to patients with a negative response rate of

Fig. 2. a) Presence of relatives improves quality of care, b) Presence of relatives is of help. Differences among groups (χ2) and pairs of groups (patients, relatives/health care providers): P = .0001.

The second half of the questionnaire concerned the risk of invading the intimacy of the patients (in particular, the personal sphere for which the concept of “intimacy” was used) with the presence of relatives in the ICUs. Collecting clinical history data through relatives is not a problem for most patients (91%) and relatives (97.7%), whereas it is problematic for health care providers (57.4%). Another aspect of the intimacy that could be of concern for patients is to be questioned about their own emotional experiences. Like the previous answers, the health care providers resulted to be more sensitive to this problem (health care providers 54.4%), whereas most of the patients and relatives did consider it less problematic (patients, 89.8%; relatives, 91.6%). With respect to gathering information on the patient's emotional experience via the relatives, 63.2% of health care providers believe that it represents an invasion of the patient’s intimacy, whereas only 14.4% of patients and 9.6% of relatives believe this to be the case. These results should be considered also in light of the answers given on the invasion of the intimacy by invasive techniques performed on an unconscious patient: 52.6% of the health care providers believe that this could be experienced as invasive by the patients, whereas 14.3% of patients and 10.2% of relatives feel the same way. These percentages are comparable to those related to the collection of data regarding the clinical history and the emotional experience. The difference between pairs of groups is for these answers highly significant (Fig. 3 and Supplementary Materials 4, 5, and 6). 4. Discussion With respect to the 3 objectives of our study, the collected data show that patients and relatives have a similar perception about different aspects of the hospitalization in ICU, whereas the perspective of the health care providers differs significantly from that of these 2 groups. In assessing how the 3 groups see the presence of relatives, we found that patients and their relatives judge positively this presence also for the quality of care. These results are in line with those of other studies showing that relatives of high-risk ICU patients judge their presence at the bedside as fundamental to improve the safety and comfort of their loved ones through an extensive contribution to the patient’s care [13,14] and pointing out that ICU patients feel less vulnerable when their relatives are present because visitors offered moderate levels of reassurance, comfort, and calming effects [36,37]. The health care providers, instead, underestimate the value of the presence of relatives and the help that they offer to patients. In this regard, our research confirms, in accordance with the literature, that the health care providers are more skeptical about the opportunity to consider the relatives’ visit as a beneficial circumstance [7,16–19,38]. The second aim of our study was to evaluate the perception of the level of intrusiveness into the personal sphere during an ICU stay. Also in this case, the distribution of groups is in line with the previous one. Patients and relatives tend to have similar perspectives, whereas the health care providers vary from them. In particular, the health care providers judge the care’s procedures more intrusive as compared with patients and relatives. These data are confirmed by those of other studies that show how health care providers perceived the intensity of stressors as significantly greater than both families and patients [39,40]. Finally, we would like to underline an aspect of particular interest regarding the discussion on liberalization of visiting hours in ICUs. Our results show that relatives, in a setting of “open” ICUs, are involved in daily explanations regarding treatment. These results are in line with those of previous studies, which show how opening up the ICUs to relatives allows the exchange of information and communication between patients

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Fig. 3. a) Anamnesis through relatives is an invasion of intimacy, b) Emotional questioning is an invasion of intimacy, c) Emotional questioning through relatives is an invasion of intimacy, d) Invasive procedures while unconscious are a violation of intimacy. Differences among groups (χ2) and pairs of groups (patients, relatives/health care providers): P = .0001.

and relatives as well as within the health care team [10,41–43]. Moreover, according to other studies [7,10,11,13], we can hypothesize that this practice has an impact on the agreement on therapeutic procedures and prevention of conflicts. Furthermore, our study highlights relational difficulties of the health care providers in collecting clinical or personal and emotive information through the relatives. The main result of our study is in fact that relatives share significant aspects of the values regarding the personal sphere with the patients admitted in the ICUs. Patients and relatives judge positively the presence of the families in ICUs, they believe that the presence of relatives has a good impact on the quality of care, and they accept without problems that the health care providers collect personal and clinical data through the relatives and do not perceive as intrusive the procedures necessary for the care. On the other side, the health care providers tend to underestimate the benefits that the presence of the relatives offers to the patients and overestimate the intrusiveness of the procedures they administer and of the collection of data on the clinical and personal history of their patients. The consistency in the evaluations of patients and relatives and the discrepancies with respect to the answers of health care providers are statistically significant and confirm the hypothesis that relatives are more able than health care providers to understand the values of patients admitted in ICUs. In addition to these results, our study highlights how—even in departments where a liberalization of the visiting policy has been applied for a long time—difficulties in the relation with families may persist among health care providers. This is crucial in light of what is stated in the literature on the subject of the opening of the ICUs. In fact, some studies have pointed out that health care providers—especially nurses—can be exposed to a greater emotional burden and workload after the liberalization of the visiting policy in their wards [7–9]. A recent work [8] has established a correlation between the partial liberalization of ICU visiting policies and a small but significant increase in staff members’ burnout level. In this study, the assessment was performed at 6 months and 1 year after the opening. Our data show that the difficulties, especially as regards the communication, may last longer. Based on these results and in line with the literature, we can thus conclude that the opening of ICUs is certainly an organizational and cultural change that needs to be prepared and followed in its implementation [20,41,42]. In our reality, the communication approach adopted with family members (see 2.1 Setting) has proven useful to reduce the emotional burden related to the presence of family members at the bedside because all team members are aware of what information was provided to the patient and his/her family, participate in group discussions, and are prepared to answer questions from patients and family members

during the daily care. Furthermore, all team members have the opportunity to clarify their position and opinion about the therapeutic process because rounds between caregivers, particularly for the more severely ill patients, precede meetings with family [44]. Our study suggests however that the role of the relatives in the care of patients needs to be constantly monitored to achieve a real and effective collaboration among all parties involved. Our study presents some limits. Data are collected in a specific cultural context and language-homogeneous region, which implies that generalization of the results in others countries must be transposed with caution even if, in the explorative phase, some ICUs from non– Italian-speaking regions have been involved. For a wider use in the ICU community, the study questionnaire would need to be validated for psychometric properties in a multicenter and international setting. Only few data from relatives of unconscious or incapable of communicating patients were collected, and these could not be analyzed. Their point of view could be of major interest, and more attention to this class of relatives should be paid in further studies.

5. Conclusions The agreement in the evaluations of the patients and relatives observed in this study confirms that relatives in the “open” ICUs in Southern Switzerland share a great deal of intimacy with the patients. This element is particularly important in Switzerland because of the recent reform of the Federal Law on anticipate directives and surrogates, which assigns to relatives of patients who have lost the ability to discern a primary role in the decision-making process. The presence of relatives and the deriving benefits were seen as very positive by patients and relatives. Skepticism was significantly greater in health care providers as regards the benefits that relatives can offer to the ICUs as well as regarding the communication with relatives about personal and emotional aspects related to the care of patients. In an environment such as ICUs, the desire and the need to protect themselves from the emotional burden resulting from confrontation with the suffering and needs of patients’ families can lead to a desire to “keep the doors closed.” Nowadays, we know not only that this solution is unethical but also that its adoption would mean giving up the great and undeniable benefits that the presence of families makes for themselves, patients, and caregivers. It will be necessary, through continuing education and interdisciplinary dialogue, to try to find the best solutions and to optimize the existing ones. Supplementary data to this article can be found online at http://dx. doi.org/10.1016/j.jcrc.2015.05.016.

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Acknowledgments The authors are most grateful to all patients and relatives participating to the study. We thank nurses, care assistants and physicians from the ICUs of Bellinzona, Locarno, Lugano, and Mendrisio for their active participation. We especially thank Prof Cristiana Sessa of the Clinical Trial Unit, EOC, for important advice and for valuable comments. Grants were received from Advisory Board of Scientific Research of Ente Ospedaliero Cantonale and from Sasso Corbaro Medical Humanities Foundation.

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Sharing intimacy in "open" intensive care units.

Opening intensive care units (ICUs) is particularly relevant because of a new Swiss law granting the relatives of patients without decision-making cap...
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