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Providing Family-Centered Intensive Care Unit Care without Family Presence - Human Connection in the Time of COVID-19

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Invited Commentary | Critical Care Medicine
Providing Family-Centered Intensive Care Unit Care Without Family
Presence—Human Connection in the Time of COVID-19
Deepshikha Charan Ashana, MD, MS, MBA; Christopher E. Cox, MD, MPH
Human connection has taken on an uncomfortable duality during the COVID-19 pandemic—
necessary for our well-being but detrimental to the containment of a deadly and easily transmissible
virus. In this context, many hospitals chose to restrict family presence in intensive care units (ICUs)
out of concern for family and health care worker safety. Data are accumulating regarding the negative
consequences of these policies. Clinicians have reported moral distress stemming from their role in
enforcing restrictive family visitation policies,
1
and patients may be spending more time in ICUs
because of delayed family conferences about their goals, values, and preferences.
2
However, the
experiences of family members, told in their own words, have rarely been heard.
The study by Kentish-Barnes and colleagues
3
in JAMA Network Open is an important
contribution to this literature because it highlights the deeply moving lived experiences of family
members of patients who died near the height of the COVID-19 pandemic (between April and May
2020) in 12 French ICUs.
3
Three months after each patient’s death, the investigators conducted a
semistructured interview focused on a family member’s experience with critical illness, death, and
grief. As a result of being unable to bear witness to illness and at times death, many families reported
a sense of unreality or feeling as if their loved one had simply disappeared. They also shared their
struggle to cope while separated from their loved one as well as from their usual support networks.
In this solitude, ICU clinicians became their sole source of connection to their loved one.
Unfortunately, most families reported that communication with clinicians was infrequent or
inconsistent and focused solely on sharing medical information rather than providing much needed
emotional support. However, a few families offered a more hopeful narrative. They described
meaningful connections with clinicians who engaged in simple family-centered tasks, such as reliably
calling at the same time each day or delivering messages from families to patients. Some family
members also shared their experiences using videoconferencing technologies to convene friends
and family to participate in modified grief rituals, such as livestreamed funerals or shared moments
of silence.
These narratives share the common thread of disruption and restoration of human connection.
Because it was considered necessary to disrupt family presence in the ICU, we must think deeply and
creatively about how we can restore meaningful connections among families, patients, and ICU
clinicians—and at a distance, if need be. In other words, our challenge is to optimize family-centered
ICU care absent the physical presence of family members.
4,5
The study by Kentish-Barnes and
colleagues
3
offers some guidance.
First, we must provide accessible ways for families to see and support their loved ones virtually.
One example could be keeping a mobile device in a patient’s room to facilitate frequent audio or
video communication with their family, ideally in an on-demand fashion rather than waiting for busy
ICU clinicians to initiate communication. We have used smartphones, tablets, and streaming cameras
to connect patients and families as well as baby monitors and walkie-talkies to connect ICU staff with
isolated patients. Other examples may include allowing families to send comforting personal items
to their loved ones or encouraging families to keep ICU diaries documenting the experience.
Second, ICU clinicians must communicate with families more frequently than usual, using
established frameworks of shared decision-making and empathic communication.
5
We have found
that giving updates at regular times, such as after rounds by physicians and at shift change by nurses,
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is reassuring and deeply appreciated by family members. Communicating more creatively and often
in a different role has become a necessity during the past year. Sometimes, playing the role of
message carrier can reinvigorate our perspective on building more humanistic therapeutic alliances.
6
However, we must also recognize the tremendous emotional burden that ICU clinicians have borne
during the pandemic. Therefore, when possible, family support should also be shared by other
members of the multidisciplinary team, including social workers or family navigators, possibly guided
by mobile applications that assess types and severities of families’ unmet needs.
7
Third, ICU teams should inquire about and accommodate important end-of-life rituals for dying
patients to optimize the quality of death and dying for patients and promote the psychological well-
being of families. Although there are challenges to providing palliative and end-of-life care in this
environment,
8
it is important to remember that these are defining moments in families’ lives that can
either create meaning or complicated grief. Pausing to celebrate the lives of our patients may also be
an antidote to the depersonalization that so many clinicians have experienced during the pandemic.
We must urgently implement such strategies to promote remote, yet high-quality, family-
centered ICU care while reassessing the continued need for restrictive family visitation policies.
Unbalanced or unjustified separation of families from their loved ones risks further eroding the
trustworthiness of health care institutions. This is particularly relevant in the United States, given the
disproportionate impact of the COVID-19 pandemic on racial and ethnic minority communities that
have endured a long legacy of forced family separation by institutions.
As access to multiple highly effective COVID-19 vaccines grows, the day may soon come when
we can welcome families back into the ICU. We anticipate that the novel strategies that are
developed to provide remote family-centered care during the COVID-19 pandemic will continue to be
relevant for family members who cannot be physically present in the ICU due to illness, lack of access
to reliable transportation, or inability to take paid leave from their workplaces. We hope that our
experiences during the pandemic, such as those described in the excellent and timely work by
Kentish-Barnes et al,
3
will serve as constant reminders about the central role of families in ICU care
and the importance of meaningful human connection to families, patients, and ICU clinicians.
ARTICLE INFORMATION
Published: June 21, 2021. doi:10.1001/jamanetworkopen.2021.13452
Open Access: This is an open access article distributed under the terms of the CC-BY License. © 2021 Ashana DC
et al. JAMA Network Open.
Corresponding Author: Deepshikha Charan Ashana, MD, MS, MBA, Division of Pulmonary, Allergy, and Critical
Care Medicine, Department of Medicine, Duke University, 315 Trent Dr, Hanes House, Box 102352, Durham, NC
27710 (deepshikha.ashana@duke.edu).
Author Affiliations: Division of Pulmonary, Allergy, and Critical Care Medicine, Department of Medicine, Duke
University,Durham, Nor th Carolina.
Conflict of Interest Disclosures: None reported.
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3. Kentish-Barnes N, Cohen-Solal Z, Morin L, Souppart V, Pochard F, Azoulay E. Lived experiences of family
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(6):e2113355. doi:10.1001/jamanetworkopen.2021.13355
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JAMA Network Open | Critical Care Medicine Human Connection in the Time of COVID-19
JAMA Network Open. 2021;4(6):e2113452. doi:10.1001/jamanetworkopen.2021.13452 (Reprinted) June 21, 2021 2/3
Downloaded From: https://jamanetwork.com/ on 06/22/2021
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6. Cox CE. The dog whisperer of the ICU. McSweeney’s. July 6, 2020.Acce ssed May19, 2021. https://www.
mcsweeneys.net/articles/the-dog-whisperer-of-the-icu
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JAMA Network Open | Critical Care Medicine Human Connection in the Time of COVID-19
JAMA Network Open. 2021;4(6):e2113452. doi:10.1001/jamanetworkopen.2021.13452 (Reprinted) June 21, 2021 3/3
Downloaded From: https://jamanetwork.com/ on 06/22/2021
... Vhembe district is rural, and the community and family members had limited ways of accessing and interacting with admitted family members physically and virtually. Ashana and Cox [27] believed one could keep a mobile device to continue family-centred care, contact, and communication. Instead of waiting for busy unit clinicians to make the first move, frequent audio or video communication with the patient's family could be facilitated in their room. ...
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From a public health standpoint, a stringent visitation policy was necessary during the COVID-19 pandemic, but it had unforeseen communicative and emotional health consequences for family members. This study explored family members’ experiences regarding implementing a restricted visitation policy when a patient was admitted with COVID-19 at public hospitals in the Vhembe district. Researchers used an exploratory, descriptive, and contextual qualitative technique. Twelve family members made up the population. Unstructured telephone interviews were used to obtain the data, and open coding was used to analyse data. Ethics were consistently followed. Before taking part, participants provided verbal informed consent, acknowledging that they could withdraw from the study if necessary. Three themes emerged: inadequate measures for temporary communication channels and techniques, the mental health effects of COVID-19 admission, and poor/lack of standardised visitation policy during the COVID 19-pandemic. There was a need to balance safety from contracting COVID-19 infection and promoting family-centred care. Virtual visits through telecommunication solutions could reduce fear and anxiety as the family could be updated on the progress of the hospitalised relative. Alternatively, hospital managers must allocate a dedicated person in the unit to update families when they call and enquire about the conditions.
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Importance During the initial surge of the COVID-19 pandemic, family members were often separated from their loved ones admitted to intensive care units (ICUs), with a potential for negative experiences and psychological burden. Objective To better understand the experiences of bereaved family members of patients who died in an ICU during the COVID-19 pandemic, from the time of hospital admission until after the patient’s death. Design, Setting, and Participants This qualitative study used semistructured, in-depth interviews to collect experiences from bereaved family members of patients who died from severe COVID-19 in 12 ICUs during the first wave of the pandemic in France. Purposeful sampling was used to ensure the diversity of study participants with respect to sex, age, relationship with the patient, and geographic location. All data were collected between June and September 2020, and data analysis was performed from August to November 2020. Main Outcomes and Measures Interviews were conducted 3 to 4 months after the patient’s death and were audio-recorded and analyzed using thematic analysis. Results Among 19 family members interviewed (median [range] age, 46 [23-75] years; 14 [74%] women), 3 major themes emerged from qualitative analysis. The first was the difficulty in building a relationship with the ICU clinicians and dealing with the experience of solitude: family members experienced difficulties in establishing rapport and bonding with the ICU team as well as understanding the medical information. Distance communication was not sufficient, and participants felt it increased the feeling of solitude. The second involved the patient in the ICU and the risks of separation: because of restricted access to the ICU, family members experienced discontinuity and interruptions in the relationship with their loved one, which were associated with feelings of powerlessness, abandonment, and unreality. The third was regarding disruptions in end-of-life rituals: family members described “stolen moments” after the patient’s death, generating strong feelings of disbelief that may lead to complicated grief. Conclusions and Relevance This qualitative study found that during the initial wave of the COVID-19 pandemic in France, bereaved family members described a disturbed experience, both during the ICU stay and after the patient’s death. Specific family-centered crisis guidelines are needed to improve experiences for patients, families, and clinicians experiences.
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Objectives: To determine if a restrictive visitor policy inadvertently lengthened the decision-making process for dying inpatients without coronavirus disease 2019. Design: Regression discontinuity and time-to-event analysis. Setting: Two large academic hospitals in a unified health system. Patients or subjects: Adult decedents who received greater than or equal to 1 day of ICU care during their terminal admission over a 12-month period. Interventions: Implementation of a visit restriction policy. Measurements and main results: We identified 940 adult decedents without coronavirus disease 2019 during the study period. For these patients, ICU length of stay was 0.8 days longer following policy implementation, although this effect was not statistically significant (95% CI, -2.3 to 3.8; p = 0.63). After excluding patients admitted before the policy but who died after implementation, we observed that ICU length of stay was 2.9 days longer post-policy (95% CI, 0.27-5.6; p = 0.03). A time-to-event analysis revealed that admission after policy implementation was associated with a significantly longer time to first do not resuscitate/do not intubate/comfort care order (adjusted hazard ratio, 2.2; 95% CI, 1.6-3.1; p < 0.0001). Conclusions: Policies restricting family presence may lead to longer ICU stays and delay decisions to limit treatment prior to death. Further policy evaluation and programs enabling access to family-centered care and palliative care during the ongoing coronavirus disease 2019 pandemic are imperative.
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Background: The severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) pandemic has affected the hospital experience for patients, visitors, and staff. Objective: To understand clinician perspectives on adaptations to end-of-life care for dying patients and their families during the pandemic. Design: Mixed-methods embedded study. (ClinicalTrials.gov: NCT04602520). Setting: 3 acute care medical units in a tertiary care hospital from 16 March to 1 July 2020. Participants: 45 dying patients, 45 family members, and 45 clinicians. Intervention: During the pandemic, clinicians continued an existing practice of collating personal information about dying patients and "what matters most," eliciting wishes, and implementing acts of compassion. Measurements: Themes from semistructured clinician interviews that were summarized with representative quotations. Results: Many barriers to end-of-life care arose because of infection control practices that mandated visiting restrictions and personal protective equipment, with attendant practical and psychological consequences. During hospitalization, family visits inside or outside the patient's room were possible for 36 patients (80.0%); 13 patients (28.9%) had virtual visits with a relative or friend. At the time of death, 20 patients (44.4%) had a family member at the bedside. Clinicians endeavored to prevent unmarked deaths by adopting advocacy roles to "fill the gap" of absent family and by initiating new and established ways to connect patients and relatives. Limitation: Absence of clinician symptom or wellness metrics; a single-center design. Conclusion: Clinicians expressed their humanity through several intentional practices to preserve personalized, compassionate end-of-life care for dying hospitalized patients during the SARS-CoV-2 pandemic. Primary funding source: Canadian Institutes of Health Research and Canadian Critical Care Trials Group Research Coordinator Fund.
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Family support is more, not less, important during crisis. However, during the COVID-19 pandemic, maintaining public safety necessitates restricting the physical presence of families for hospitalized patients. In response, health systems must rapidly adapt family-centric procedures and tools to circumvent restrictions on physical presence. Strategies for maintaining family integrity must acknowledge clinicians’ limited time and attention to devote to learning new skills. Internet-based solutions can facilitate the routine, predictable, and structured communication which is central to family-centered care. But the reliance on technology may compromise patient privacy and exacerbate racial, socioeconomic, and geographic disparities for populations that lack access to reliable internet access, devices or technological literacy. We provide a toolbox of strategies for supporting family-centered inpatient care during physical distancing responsive to the current clinical climate. Innovations in the implementation of family involvement during hospitalizations may lead to long-term progress in the delivery of family-centered care.
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Rationale: The quality and patient-centeredness of intensive care unit (ICU)-based palliative care delivery is highly variable. Objective: To develop and pilot an app platform for clinicians, ICU patients, and their family members that enhances the delivery of needs-targeted palliative care. Methods: In the Development Phase of the study, we developed an electronic health record (EHR) system-integrated mobile web app system prototype, PCplanner (Palliative Care Planner). PCplanner screens the EHR for ICU patients meeting any of five prompts ('triggers') for palliative care consultation, allows families to report their unmet palliative care needs, and alerts clinicians to these needs. The Evaluation Phase included a prospective before/after study conducted at a large academic medical center. Two control populations were enrolled in the before period to serve as context for the intervention. First, 25 ICU patients who received palliative care consults served as patient-level controls. Second, 49 family members of ICU patients who received mechanical ventilation for at least 48 hours served as family-level controls. Afterward, 14 patients, 18 family members, and 10 clinicians participated in the intervention evaluation period. Family member outcomes measured at baseline and 4 days later included acceptability (Client Satisfaction Questionnaire [CSQ]); usability (Systems Usability Scale [SUS]); palliative care needs, assessed with the adapted Needs of social nature; Existential concerns; Symptoms; and Therapeutic interaction (NEST) scale; the Patient-Centeredness of Care Scale (PCCS), and the Perceived Stress Scale (PSS). Patient outcomes included frequency of goal concordant treatment, hospital length of stay, and discharge disposition. Results: Family members reported high PCplanner acceptability (mean CSQ 14.1 [1.4]) and usability (mean SUS 21.1 [1.7]). PCplanner family member recipients experienced a 12.7-unit reduction in NEST score compared with a 3.4-unit increase among controls (p=0.002), as well as improved mean scores on the PCCS (6.6 [standard deviation [5.8]) and the PSS (-0.8 [1.9]). The frequency of goal concordant treatment increased over the course of the intervention (n=14 [79%] vs. n=18 [100%]). Compared to palliative care controls, intervention patients received palliative care consultation sooner (3.9 [2.7] vs. 6.9 [7.1] mean days), had a shorter mean hospital length of stay (20.5 [9.1] vs. 22.3 [16.0]), and received hospice care more frequently (5 [36%] vs. 5 [20%]) though these differences were not statistically significant. Conclusions: PCplanner represents an acceptable, usable, and clinically promising systems-based approach to delivering EHR-triggered, needs-targeted ICU-based palliative care within a standard clinical workflow. A clinical trial in a larger population is needed to evaluate its efficacy.
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Objective: To provide clinicians with evidence-based strategies to optimize the support of the family of critically ill patients in the ICU. Methods: We used the Council of Medical Specialty Societies principles for the development of clinical guidelines as the framework for guideline development. We assembled an international multidisciplinary team of 29 members with expertise in guideline development, evidence analysis, and family-centered care to revise the 2007 Clinical Practice Guidelines for support of the family in the patient-centered ICU. We conducted a scoping review of qualitative research that explored family-centered care in the ICU. Thematic analyses were conducted to support Population, Intervention, Comparison, Outcome question development. Patients and families validated the importance of interventions and outcomes. We then conducted a systematic review using the Grading of Recommendations, Assessment, Development and Evaluations methodology to make recommendations for practice. Recommendations were subjected to electronic voting with pre-established voting thresholds. No industry funding was associated with the guideline development. Results: The scoping review yielded 683 qualitative studies; 228 were used for thematic analysis and Population, Intervention, Comparison, Outcome question development. The systematic review search yielded 4,158 reports after deduplication and 76 additional studies were added from alerts and hand searches; 238 studies met inclusion criteria. We made 23 recommendations from moderate, low, and very low level of evidence on the topics of: communication with family members, family presence, family support, consultations and ICU team members, and operational and environmental issues. We provide recommendations for future research and work-tools to support translation of the recommendations into practice. Conclusions: These guidelines identify the evidence base for best practices for family-centered care in the ICU. All recommendations were weak, highlighting the relative nascency of this field of research and the importance of future research to identify the most effective interventions to improve this important aspect of ICU care.
The dog whisperer of the ICU. McSweeney’s
  • Cox
Cox CE. The dog whisperer of the ICU. McSweeney's. July 6, 2020. Accessed May 19, 2021. https://www. mcsweeneys.net/articles/the-dog-whisperer-of-the-icu
Lived experiences of family members of patients with severe COVID-19 who died in intensive care units in France
  • N Kentish-Barnes
  • Z Cohen-Solal
  • L Morin
  • V Souppart
  • F Pochard
  • E Azoulay
Kentish-Barnes N, Cohen-Solal Z, Morin L, Souppart V, Pochard F, Azoulay E. Lived experiences of family members of patients with severe COVID-19 who died in intensive care units in France. JAMA Netw Open. 2021;4 (6):e2113355. doi:10.1001/jamanetworkopen.2021.13355