Since the start of the pandemic, more than 370,000 Americans have died of Covid-19, many of them alone, isolated from those who love them by hospital policies cutting off family visits.
As the virus continues its relentless spread across the country, the next few months may be the deadliest ones we’ve seen. And as hospitals once again begin to shut their doors to visitors, we are in dire need of national leadership around visitor policies and medical communication with patients and families.
Much has been said about preventable deaths related to Covid-19. Little has been said about preventable suffering. We may today be better prepared to diagnose and treat the disease than we were in the spring, but we are no better prepared to address the collective trauma of Covid-19 patients being separated from their families. Family presence at the bedside, along with regular communication between health care providers and their patients and families, are not indulgences — they need to be part of the standard of care.
If we fail to act now, the pain of losing loved ones as they die in isolation will be a grim legacy of this pandemic.
As members of a palliative care team embedded during the spring in Covid-19 intensive care units at Boston’s Brigham and Women’s Hospital, we have seen firsthand the need for improved visitor and communication policies. We were there to provide the three pillars of palliative care: expert management of symptoms such as shortness of breath and pain, psychosocial support for patients and families, and assistance with difficult medical decisions.
We led far too many agonizing conversations by phone or by Zoom, breaking the bad news to family members that their loved one was not going to survive, or had just died.
Our hospital, like many others, restricted nearly all visitors in the early weeks of the spring surge. Though well-intentioned and meant to protect patients, staff, and the public, this policy had numerous disturbing consequences.
There was, for example, an exception that allowed a brief hospital visit for family members at the very end of a patient’s life. At the time, this exception applied only to patients who decided to transition to comfort-focused care and, in many cases, stop life support.
But rather than helping families say goodbye, the exception became a form of coercion. Families could visit only if their loved one transitioned away from life-sustaining measures. Even then, only two visitors were allowed, creating difficult choices for patients with a spouse and three adult children. Along with our critical care and nursing colleagues, we experienced intense moral distress over having to enforce these policies, which conflicted with our sense of just and humane care.
Outside of the ICU setting, our colleagues cared for several families who elected to bring their loved one home for their final days. Though they were terrified about what the patient’s death at home would look like, the thought of not being by their side was even worse. Families faced impossible choices, and the moral distress among clinicians was profound.
To complicate matters, policies varied from hospital to hospital, sometimes even those in the same neighborhood. The son of one of our patients asked if we’d consider transferring his father to a hospital down the street, as he heard it had fewer visitor restrictions. The opportunity to hold a dying family member’s hand should not depend on which emergency department the ambulance was directed to.
There hasn’t been time to collect robust data on the longer-term effects of Covid-19 deaths on family bereavement. Yet we have reason to be concerned. Research consistently demonstrates the risks of depression, anxiety, post-traumatic stress disorder, and complicated grief in family members of patients who die in ICUs. The added stress of having to wait by the phone for terrible updates or trying to navigate the myriad communication and visitation challenges wrought by Covid-19 will likely only deepen the trauma that families experience.
As the nation braces for the coming months, we need a national strategy to mitigate this suffering. All hospitals must create programs to regularly allow families to see and talk to their loved ones throughout their hospitalization. The inequitable chaos of the status quo — usually a nurse scrambling to arrange a video chat, often on her or his personal phone — is unacceptable. Nearly 10 months into the pandemic, we should not still be trying to figure this out.
The Centers for Disease Control and Prevention should create transparent, evidence-based standards for visitor policies that are tied to rates of viral spread. To be sure, with skyrocketing infections across the country, we cannot return to pre-Covid-19 visitation rules until we have widespread public vaccination. We must protect frontline health care workers, patients, and visitors. But with a concerted effort and national leadership, we could make visitation safer, less restricted, and more equitable.
To start, hospitals in communities with lower rates of positive Covid-19 tests should be more open to visitors, and all hospitals in the same community should have the same policies. Moreover, for the critically ill, visitation policies should have enough flexibility to avoid coercive transitions to comfort-focused care.
With regard to communication, the Department of Health and Human Services and the Joint Commission on Accreditation of Healthcare Organizations should devise regulations about connecting patients with their families when they can’t be at the bedside. If hospitals can’t allow daily visitation, they should proactively offer families daily access to video and phone visits. Patients who are awake, alert, and have their own smartphones or tablets wouldn’t need assistance, but hospitals should step in to meet the needs of patients who cannot communicate on their own or lack communication devices.
We discovered during the spring surge that physicians, nurses, and other bedside clinicians were too busy to reliably accomplish this task. Hospitals need to hire or repurpose staff to ensure regular and equitable patient-family communication, as ours did at the time. Patient care associates, certified nurse assistants, or medical assistants could be trained and compensated for managing this large and important task.
But hospitals are already stretched beyond their capacity, so any requirements must be accompanied by material and financial support from federal and state governments. Without it, only well-resourced hospitals will be able to comply, which would worsen the pandemic’s significant racial, ethnic, and economic disparities. To improve equity, the incoming Biden-Harris administration should invoke the Defense Production Act to procure better supplies of personal protective equipment and rapid testing for visitors. It should also mobilize big tech companies like Apple, Amazon, and Google to assist with devices and logistics and incentivize hospitals to hire new staff to meet their patients’ communication needs. Family inclusion in care can no longer be an afterthought.
As the Biden-Harris Transition Covid-19 Advisory Board works to develop a long-overdue national response to the pandemic, it must expand its scope beyond supply chains, mask mandates, vaccines, and ICU beds. With true leadership, we can seize the opportunity to create systems of Covid-19 care that are grounded not only in science, but also in empathy.
Richard Leiter and Samantha Gelfand are palliative care physicians at Brigham and Women’s Hospital and the Dana-Farber Cancer Institute, both in Boston, and are faculty members at Harvard Medical School. The opinions expressed in this article are the authors’ and do not necessarily reflect the views and opinions of their institutions.