key: cord-333663-0yzrcfe5
authors: Hart, Joanna L.; Turnbull, Alison E.; Oppenheim, Ian M.; Courtright, Katherine R.
title: Family-Centered Care During the COVID-19 Era
date: 2020-04-22
journal: J Pain Symptom Manage
DOI: 10.1016/j.jpainsymman.2020.04.017
sha: 
doc_id: 333663
cord_uid: 0yzrcfe5

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.

Family-centered care is threatened during the COVID-19 pandemic. The participation of family members in a manner that allows families, patients, and the healthcare team to collaborate is the core of family-centered care. Strategies for delivering family-centered care typically include open family presence at the bedside; 3 regular, structured communication with family members; and multidisciplinary support. These prepare family members for decision-making and caregiving roles, 1 with the goal of reducing family members' experiences of anxiety, depression, and post-traumatic stress following hospitalization. 1 Family-centered care is desired by patients and families, may improve their outcomes, and may also reduce burnout and moral distress among clinicians. 1 Large-scale disasters intensify stressors and basic human needs to feel safe, connected, calm, useful, and hopeful. 2 Yet, infectious diseases outbreaks make proximity dangerous. 3 Physical, or social, distancing is the principal mitigation strategy used to reduce transmission in the COVID-19 pandemic, 4 with a profound impact on the delivery of family-centered inpatient care.

Health systems must severely restricting or eliminating family presence for all patients, to protect the health of patients, family members, and workers. 5 Restrictions on family presence should not undermine adherence to the principles of familycentered care. Defining patients' goals of care is a priority during the pandemic and typically necessitates family engagement. 6 Therefore, it is essential to rapidly adapt family-centric procedures and tools to circumvent restrictions on physical presence. We present a framework for family-centered care in the context of COVID-19 and provide a toolbox of strategies to implement in the inpatient setting.

The goals of family-centered care during physical distancing remain the same and are focused on facilitating (1) respect for the role of family members as care partners, (2) collaboration between family members and the healthcare team, and (3) maintenance of family integrity. 3 The pandemic necessitates that efforts to meet these goals adapt to a rapidly changing clinical culture. Family-centered care has primarily relied on family members' physical presence at the bedside to promote trust, communication, involvement in caretaking, and shared decisionmaking. 1 The term "visitation" is replaced by "family presence" in the family-centered care paradigm. During the COVID-19 pandemic, family presence must be supported in non-physical ways to achieve the goals of family-centered care.

In this pandemic, as in prior infectious outbreaks, governments, health systems, and individual clinicians change their typical practices to focus on public health rather than individuals' outcomes. 13 Clinicians may also be performing unfamiliar duties, including learning new clinical procedures and providing care in novel spaces with newly formed teams. Family-centered care strategies in this context must acknowledge the changed ethical perspective and clinicians' limited time, attention, and effort to devote to learning and assimilation.

Strategies to support family presence during physical distancing rely heavily on existing patient or family smartphones and computers, stable internet access, and technological literacy. These strategies are likely to cause differential access to family-centered care. In the United States, where a majority of the population reports use of the internet or a smartphone, there are wide racial and socioeconomic disparities in access to computers and broadband internet. Older Americans are less likely than younger groups to use the internet regularly. 7 Fewer than twothirds of homes in rural areas of the United States report home broadband internet connection. 8 Urban areas face similar areas of internet inequality along socioeconomic lines. 9 Therefore, use of technology-heavy family-centered care strategies requires assessing individual families' access to these resources and devising ways to overcome these potential barriers to avoid worsening existing health disparities.

Despite the need for physical distancing, permitting limited family presence at the bedside may be necessary for the protection and safety of the patient or to maintain family integrity. For example, physical family presence should be supported when possible for pediatric patients, laboring or post-partum patients, and people with severe neurocognitive disability or who are nearing the end of life. Exceptions allowing for physical presence should be clearly defined and communicated to clinicians, families and patients. Exceptions should be adjudicated in a transparent and equitable manner, preferably through a centralized system, to avoid discrimination in family access and additional strain on the clinical team. 10 These processes should also aim to decrease the bedside clinical team's moral distress and "avoid conflicts of commitments," aligned with the recommended practices for resource allocation decisions. 11 The United States is permitting use of technologies that may not be fully compliant with the Health Insurance Portability and Accountability Act Privacy, Security, and Breach Notification Rules (HIPAA Rules) during the COVID-19 public health emergency. 12 This enables communication and provision of telehealth through existing commercial platforms. Clinicians using technologies that do not follow HIPAA Rules should disclose to patients and families that they may compromise patient privacy. Use of HIPAA Rules-compliant platforms and security features on all platforms should be prioritized to protect patient privacy.

The delivery of family-centered care begins at entry to the health system. The patient and family should receive an explanation of any restrictive policies that limit the physical presence of family members. As families often have limited face-to-face contact at the point of entry, a publicfacing website should provide additional information. The explanation of the policy should include rationale and use language and tone that seeks to defuse and avoid conflict. The publicfacing material should also empower patients and families to anticipate and prepare for next steps. 13 The website should also link to community resources, free or low-cost public internet programs, and information about the health system's preferred communication platforms.

Finally, hospitals should provide a mechanism for delivery of essential items to the patient, such as glasses, phone chargers, and advance directives. Delivery of family-centered care may require reinterpreting or reinventing roles within the multidisciplinary team as clinical staff become a scarce resource. Medical, nursing, or social work students removed from clinical rotations may be able to provide skilled support while advancing their own education and skills. 17 Students can virtually visit families and patients to promote coping strategies, coordinate engagement efforts, and streamline communication with the clinical team. 13 Additionally, the health system should leverage partnerships with community organizations to collaboratively assist family members. Proactive outreach to community partners about policies limiting family presence may alleviate health system stress as the need for supportive care increases. 13 For example, local faith leaders may be equipped to provide virtual pastoral care support.

Separation near the end of a patient's life is particularly tragic. Conduct conversations explaining transition to comfort-focused care via multi-user videoconferencing, including multiple distanced family members, translators, and longitudinal clinicians as appropriate. When possible allow physical presence, even if very limited, and maximize family presence using strategies in Table 2 . Involve supportive care teams for the patient and family, including palliative care, pastoral care, and behavioral health, recognizing that these service lines are also likely to experience strain.

Family-centered care is more, not less, important during a pandemic. Physical distancing requires nimble adaptation of standard practices. Innovative approaches that involve family members in inpatient care during the COVID-19 pandemic may lead to long-lasting progress in, rather than regression from, the standards of family-centered care the healthcare community has recently achieved. 

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