key: cord-1008566-0xpv1byw
authors: Lopez-Soto, C.; Bates, E.; Anderson, C.; Saha, S.; Adams, L.; Aulakh, A.; Bowtell, F.; Buckel, M.; Emms, T.; Shebl, M.; Metaxa, V.
title: The role of a Liaison Team in ICU family communication during the COVID 19 pandemic
date: 2021-04-21
journal: J Pain Symptom Manage
DOI: 10.1016/j.jpainsymman.2021.04.008
sha: 7c009b990cd6beabb005f7358f9966f6b3cf0ea9
doc_id: 1008566
cord_uid: 0xpv1byw

CONTEXT: In the name of public safety, a general suspension on hospital visiting was imposed in the UK, prohibiting family and friends to visit hospitalised patients, even if they were critically ill. METHODS: A retrospective, mixed-methods analysis of a Family Liaison Team (FLT) formed by redeployed clinicians during the first surge of the 2020 COVID 19 pandemic. RESULTS: The FLT was constituted predominantly of non-ICU consultants (30/39, 77%). Following two 1-hourly webinars around basic communication skills, the FLT facilitated over 12,000 video and telephone calls with 172 patients’ family and friends (PFF). The majority of the PFF interviewed were mostly, very or extremely satisfied by the frequency, ease, understanding, honesty, completeness and consistency of the information provided. Approximately 5% of the interviewees, reported to be slightly or very dissatisfied in one or more of the following 3 categories: frequency, consistency and ease of getting the information. The thematic analysis identified 3 themes: 1) being there/ for the patient; 2) breakdown in communication; 3) disbelief at the speed of deterioration. In 14.9% of cases there was documented discrepancy between the information transmitted by the CC team and that by the FLT, particularly around the severity of the patient's illness and their imminent death. CONCLUSIONS: The formation of a dedicated FLT was feasible and associated with increased levels of satisfaction by the PFF. Friction was created when communication was not consistent and didn't convey the severity of the patient's condition, in order to prepare the PFF for a bad outcome.

Admission with critical illness to an Intensive Care Unit (ICU) is a significant 'lifeevent', which has a major impact on the lives of both the patient and their family. During their ICU stay, patients often experience pain, anxiety, distress, fear, tiredness and thirst, which they are often unable to communicate sufficiently. (1) During this difficult journey, the uncertainty and stress is often worse for the patients' families, who are called to fulfil multiple roles during the ICU admission: information provision, comforting influence, caregiving and surrogate decision-making. Family and friend involvement in care has been advocated as the best model of patient management (2, 3) , despite initial negative perceptions and organisational barriers.(4) Professional ICU bodies support family involvement in care, as there is evidence that it improves patient outcomes, reducing clinician burnout and moral distress. (5) (6) (7) During a Public Health Emergency, standard operating procedures may cease to apply. Physical and social distancing, quarantine of a whole area or country, visiting restrictions in hospitals and a more paternalistic approach to decision-making are some of the measures described previously (8) , and experienced recently. (9, 10) During the current pandemic, the UK government imposed a general suspension on hospital visiting, prohibiting family and friends to visit hospitalised patients, even if they were approaching the end of their life (EoL). (10) As the lockdown brought to the forefront the five basic human emotional needs (to feel safe, connected, calm, useful, and hopeful) (11) , safety measures demanded distancing, intensifying the feelings of fear and separation anxiety. (8) In an attempt to lessen the devastating effects of patient/family separation, without compromising the need for quarantine, the UK medical and nursing professional bodies published guidance around different modes of maintaining communication, such as videoconferencing.(12) We present our institution's attempt to mitigate the restrictions on physical presence by creating a bespoke team of professionals, which focused on communication with patients' family and friends (PFF), during the first surge of the coronavirus disease (COVID 19).

A retrospective, mixed-methods analysis of a service improvement project in a tertiary London hospital was performed during the first surge of the 2020 Covid-19 pandemic (25 th March -1 st June 2020). A retrospective, mixed-methods analysis of a service improvement project in a tertiary London hospital was performed during the first surge of the COVID-19 pandemic (25th March -1st June 2020). During this period, a significant expansion of ICU bed capacity was undertaken (79 to 150).

Baseline demographic data were collected on COVID 19 positive patients admitted in ICU for more than 7 days, as well as on PFFs, the FLT, medical and nursing staff. The timing, frequency, nature and mode of communication (telephone or video calls) were recorded, by reviewing electronic patient records. Only documented telephone or video communication was included in the analysis.

The Interprofessional Collaboration Scale (13) was used to map the interdisciplinary collaboration and communication amongst the FLT, and between the FLT and the ICU staff.

(Appendix 1). Family satisfaction with communication was assessed with the use of the Family Satisfaction with ICU Survey (FS-ICU) (14) and particularly with the 6 questions that address the family's information needs (see Appendix 2) . Friends and family were contacted to participate in a brief, one-time, semi-structured, telephone interview (lasting 20-40 min) to understand their experience with the technology and their feedback regarding the interaction with the FLT. If, at any point, the participants expressed emotional distress or were unwilling to continue, the interview was terminated immediately and a referral to the ICU social worker was made.

The psychological experience of PFF was collected during the interview and themes were generated using an inductive thematic analysis method (15) , which method followed 6 stages: 1) familiarising oneself with the data; 2) generating initial codes; 3) searching for themes; 4) reviewing themes; 5) refining and naming themes; 6) producing a report. The flexibility, theoretical freedom, and descriptive (as opposed to interpretative) character of this method made it preferable to alternative approaches.

The study was endorsed by the Trust's Service Evaluation Committee as a Quality Improvement Project (project ID: KCC30052020CSI) and Research Ethics Committee approval was not deemed necessary. This project did not receive specific grants from any funding agencies. The manuscript followed the SQUIRE framework.(16)

A dedicated team of redeployed healthcare professionals was assembled, with a total of 39 people volunteering. The group was fully established by 20 th April 2020. The vast majority (30/39, 92.3%) were medical and almost all of those (29/30, 96 .7%) at a consultant grade. Approximately 25% (10/39) had an ophthalmology background, neurophysiologists and paediatricians comprised 23% (9/39) each, 7.7% (3/39) were radiologists, whereas only 7.7% were members of the nursing team. Their main responsibilities are shown in table 1.

The teams were allocated to each ICU area, with a maximum FLT member/ patient ratio of 1:10.

The members of the FLT underwent two, 1-hourly, webinars around basic family communication skills, which went through explanatory material, addressing all questions.

The FLT's daily schedule and teaching material are shown in Appendices 3 and 4. Video calls were facilitated throughout the day, by the use of iPads and Android devices that were donated to our Trust by the Life Lines project (17) and a private donation. By the end of the study period, the team had facilitated over 12,000 video and telephone calls, and communicated with more than 90% of PFFs, without any formal complaints.

One hundred and seventy-two patients who tested positive for Covid-19 were included. Their demographics and support during ICU are presented in table 2.

At the end of the study period, 110 (63.9%) had been discharged alive from ICU and 18 (10.5%) were still in critical care, with varying levels of support. Eighty-four patients (48.8%) had left hospital in the same time frame.

Telephone interviews were conducted with 134 PFF, whereas for the remaining 38 patients contact information for the next-of-kin was either missing (12/172, 7%), the receiver of the call declined to participate (3/172, 1.7%) or the patient was still in ICU (18/172, 10.5%) or deceased within the last 2 weeks (5/172, 2.9%), and hence their next-of- When asked whether the FLT addressed their information needs, the vast majority were mostly, very or extremely satisfied in all categories (frequency, ease, understanding, honesty, completeness and consistency). Approximately 5% of the interviewees, reported to be slightly or very dissatisfied in one or more of the following 3 categories: frequency, consistency and ease of getting the information ( fig. 1 ). Neither family demographics, nor the number of actual visits, phone calls or video calls by the FLT were associated with satisfaction reported by the family. Surviving an ICU admission was associated with lower score on the FS-ICU questionnaire, but that result didn't reach statistical significance (p=0.08).

The responses of the participants' interviews were labelled using descriptive and in vivo codes. The codes describing similar contents were grouped together, reviewed, and recoded if necessary, in order to be collated and visualise emergence of themes. These themes were reassessed for internal consistency and validity in relation to the entire data, which resulted in some of them being subdivided, if their contents were too broad, or renamed, to reflect their contents more accurately. (18) The study findings were organised in three themes:

Being there with/for the patient There was a strong desire expressed by the majority of the PFF contacted to be in close physical proximity to their relative/ friend in ICU. The imposed visiting restrictions, although understood and accepted by all, created considerable anxiety. The wife of a patient that was intubated in ICU for weeks became emotional when describing her experience:

"… it was a difficult time for our family… not visiting was horrendous"

The ability to see their relatives and friends with the help of a video call gave an opportunity to reconnect and feel as part of the patient's care, as they would have before the implementation of the visiting restrictions. A relative that used frequent video calls to communicate with her father described it as: Receiving relevant and clear information regarding the patient's condition and the care they received was a way that PFF felt connected to their loved ones. Their inability to be physically present deprived them of the chance to be involved in the patient's journey through ICU and interact directly with the caregivers. When the updates they received didn't contain the information they required, they experienced feelings of frustration and disbelief. The wife of a patient that died in ICU stated the following:

"…lots of explanations were given about going and coming off machines but no one explained the implications of this…" "I feel that the 'specialist' team was not appropriate to communicate with the families… I appreciate their honesty but the information was inconsistent and they couldn't answer any of my questions"

Disbelief at the speed of deterioration Some participants' last impressions were that of the patient leaving their home only slightly breathless. Since they were not able to personally witness the care the patients received or their deterioration, when they were informed that their loved ones were approaching the end of their life, they expressed feelings of anger, disbelief, a sense of unreality and confusion. One of the participants voiced not only incredulity but also suspicion of foul play:

"the nurses were so helpful, the doctors lacked empathy… while she was there (in ICU), there was a coverup; there was a lot they didn't tell us…"

Making sense of the death of a loved during a short illness, involves taking the time to reconcile with the unexpected event and its unwelcome outcome. When only a short time is available between breaking bad news and death, then not being able to be close to the patient can cause feelings of anxiety and leave unanswered questions. As communication between PFF and the clinical team was impaired during the pandemic, transfer of information was disrupted, increasing frustration and anger. Questionnaires were also sent to the 39 members of the FLT and of those, 24 (61.5%) were returned completed in full. More than half (54.2%) were female and 87.5%

were of a medical background. Twenty-five percent of the responders worked one day or less per week as part of the FLT, 66.7% dedicated 2-4 days to the role and 8.3% more than 4 days. Twenty-seven (17.9%) PFF received at least one telephone call in more than 80% of days the patient was in ICU. However, in 59.7% of the cases there was no documentation of an update call for at least half of the patient's ICU days. Similarly, 85% of PFF haven't participated in a video call for more than 50% of the days the patient was in critical care.

In the majority of days (65.7%), the FLT provided an update of the patient's condition, focusing on the trend in organ support. The rest of the calls predominantly involved communicating a deterioration or transition to EoL care (14.2%) and informing the PFF of the patient's discharge from ICU (20.1%). In 14.9% of the patients' notes (20/134), there was documented discrepancy between the information transmitted by the critical care team and that by the FLT. In particular, critical care staff expressed concerns around the ability of the FLT to convey the severity of the patient's illness and prepare the family for a bad outcome, instead of simply imparting organ support parameters, that didn't fully portray their deteriorating trajectory. The Interprofessional Collaboration Scale results are presented in figure 2 , as a comparison between the ICU and FLT teams.

The psychological impact of COVID 19-related separation on ICU patients, families and staff is only just beginning to be recognised. This study presents our experience in creating a dedicated team, tasked with the daily communication and update of the family and friends of ICU patients. Even though satisfaction with information provision was rated as very high by patients' relatives and friends, important difficulties in communicating news from the medical staff to the FLT team and from the FLT to the PFF, especially around EoL, were identified.

The literature indicates that family and friends feel the need to be near the patient during a critical illness not only in an emotional but also in a physical sense. (38, 39) It is possible that the relative relaxation of the restrictions around a patient's EoL was translated into the increased satisfaction score that was observed in the PFF.

The separation of patients from the ones closest to them revealed another issue around decision-making, which became much more complicated. Before the pandemic, PFF were granted unlimited visiting rights and were present to witness the clinical deterioration of the patient, as well as the efforts of the staff to support them, which was possible during the pandemic. This probably explains the frequently documented disbelief of the family ("they kept telling us he was stable… then they called us to tell us he was dead (…) how is this possible?") and the lower reported scores in the 'completeness' and 'consistency' of information sections of the FS-ICU questionnaire.

This study has several limitations. First and foremost, it is a retrospective evaluation of a service evaluation project, which used self-reported questionnaires for the assessment of both family satisfaction and interprofessional collaboration. Despite their widespread use, patient reported outcomes are prone to recall bias (40) , which may have affected the reliability of the results. Nonetheless, the unexpected and rapidly evolving nature of the pandemic made the undertaking of any other study design logistically very challenging.

Second, participation of clinical staff was very low compared to that of the FLT team (17% vs 62% of fully completed questionnaires), raising concerns around the representativeness of the sample. The difference between the two is most probably attributed to the fatigue experienced by frontline staff, as well as their need to distance themselves and restore. (41) However, personal experience from all authors confirm the reported results, especially regarding the difficulties encountered with the absence of family and friends from the patient's bedside. Last, we took a liberal approach to coding and generating themes form the family interviews, using an inductive approach within a thematic approach. The 

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The authors would like to thank the Life Lines project and our anonymous sponsor