Dear Editor:
A key factor in the transmissibility of coronavirus disease-2019 (COVID-19) is the high level of severe ac-ute respiratory syndrome coronavirus-2 (SARS-CoV-2) shedding in the upper respiratory tract. In order to protect vulnerable patients and visitors, it has been necessary for hospitals to curtail family visits. While those policies limiting hospital visitors are ethically justified, families feel helpless and anguished as loved ones suffer alone. For many older adults, the signature of the coronavirus is not the fear of dying but the fear of dying alone and becoming a statistic rather than a human being facing the end-of-life.1 Loneliness and social isolation are risk factors for all-cause mortality.2 Loneliness and psychological distress are increasing during the COVID-19 pandemic.
COVID-19 patients need family members to advocate, communicate, and make decisions on their behalf. Active participation of patients in their care and decision-making is associated with improved outcomes, and the importance of family engagement in patient outcomes is highly underestimated. Research demonstrates that family visits shorten length of stay, reduce delirium, and reduce medication errors. The lack of family visits is not only dehumanizing for the patient, but also affects family members who confront the realization that their loved one suffers alone.3 Patients and family both describe that "just being there" is the most important part of a visit. The time is often spent in silence but reinforces family bonds, comforts patients at the end of their lives, and allows families to say goodbye. It also provides the family with a sense of purpose and meaning. Family engagement is also crucial when vulnerable patients are exposed to the hazards of hospitalization. Patient and family engagement is essential for optimal health outcomes and is a key component of providing holistic, patient-centered care. Family engagement is a process driven by the much-needed partnership among physicians, patients, and family that includes active participation of family in decision-making and honoring patient preferences to optimize patient-centered care and the quality of care.
To remedy the situation, clinicians have improvised by connecting patients with family by telephone or iPad (Zoom, Skype) for updates or discussion when important decisions are needed. However, in an environment where COVID-19 patients often quickly transition from mild shortness of breath to being quite ill with multiorgan failure to dying, there is little time for critical life-saving efforts, much less assisting with Skype or Facetime calls. Clinicians suffer too; they attempt to set aside their own feelings and care for patients first. During times of crisis, clinicians rely on strategies of avoidance or compartmentalization, which can lead to unresolved grief and moral distress. Moral distress is defined as the experience of having one's moral values or obligations compromised. Compromised moral integrity gives rise to emotional distress including avoidance, frustration, fatigue, anger, anxiety, and guilt. Moral distress is associated with burnout, patient care avoidance, and low work satisfaction. Clinicians describe the lapses in communication with families in situations of futility and end-of-life care as particularly distressing. Improving communication between health care professionals, their patients, and families has been recommended to prevent moral distress.
Clinicians on the frontlines caring for COVID-19 patients are not only vulnerable to a higher risk of COVID-19 infection but also mental health problems. Studies conducted during the SARS epidemic highlighted the emotional impact of witnessing suffering while caring for infected patients,3 including increased anxiety. Similarly, the need to quarantine staff during epidemics was associated with symptoms of posttraumatic stress disorder.4 Lai and colleagues5 recently quantified that risk in China and found that of 1257 health care workers attending to COVID-19 patients, large proportions reported psychological distress (72%), depression (50%), anxiety (45%), and insomnia (34%).
In times of enforced separation of patients and family, digital communications technology can facilitate interactions among patients, family, and clinicians. Strategies have been evaluated in systematic reviews, including e-health tools (eg, secure e-mail messaging between patients and providers), mobile phone messaging, and interactive apps for health self-management. However, there has been little research to evaluate its feasibility and effectiveness, and to our knowledge, no study has investigated digital communications as interventions in the hospital setting to facilitate communication among patients, family, and clinicians. In April 2019, Alexa announced Health Insurance Portability and Accountability Act (HIPAA) compliance. At this time, Amazon is the only leading tech company with a HIPAA-compliant voice platform.
There is an urgent need to develop and test new interventions aimed at providing humanistic care to vulnerable hospitalized patients at risk. The knowledge gained should be used to facilitate further design, testing, and implementation of interventions in hospitals. Family engagement will improve health care outcomes for isolated COVID-19 patients and families and reduce the moral distress of clinicians.
Sincerely,
-Raya Elfadel Kheirbek, MD, MPH
-Ann Gruber-Baldini, PhD
-Lisa M. Shulman, MD
University of Maryland School of Medicine, Baltimore
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