Researchers interviewed family members of 328 veterans who died in an inpatient unit at one of 37 VA medical centers during the pandemic in 2020. Most (69.5%) who reported that remote communication was “very effective” reported “overall excellent” end-of-life care.1
In contrast, of participants who said remote communication was “mostly, somewhat, or not at all effective,” only 35.7% said end-of-life care was “overall excellent.” Additionally, most family members (81.3%) who made positive comments about communication reported “overall excellent” end-of-life care vs. just 28.4% who made negative comments about communication.
When engaging in end-of-life discussions, “face-to-face communication is the optimal way to communicate,” says Robert Klitzman, MD, director of the online and in-person master of bioethics program and a professor of psychiatry at Columbia University. Clinicians, family, and ethicists can pick up on expressions and body language that otherwise are missed. In initial conversations with multiple family members, one member may dominate and others lean back, shift uncomfortably in their chair, and withdraw a bit from the group. “Yet later, when subsequent decisions are faced, these initially quiet members suddenly decide to object to the course of decisions that have been or are being made,” Klitzman says.
This complicates the decision-making process. “Awareness of their body language initially could have allowed the clinician to address these tensions earlier,” Klitzman says.
Still, remote communication plays “a definite role” in the post-COVID-19 era, Klitzman suggests. One example is the ability to keep out-of-state family in the communication loop on an ongoing basis. Some ethics consults involve family members who suddenly arrive in person to demand aggressive treatment, in conflict with what other family and clinicians believe is in the patient’s best interest. “Cases occur where a sibling or child from out of state shows up at the last minute and says, ‘Don’t unplug my mother, or I’ll sue you,’” Klitzman says.
Including all family members, if they are interested, early in a meaningful way (even if they cannot travel across the country but can participate remotely) prevents sudden last-minute disagreements. Although facial expressions and body language are not always caught when people participate in family meetings remotely, “it’s better than nothing, and it’s better than a phone call without any video,” Klitzman says. “But I would hope that people wouldn’t say, ‘we don’t need to have the family come in.’ It would be unfortunate if it were to replace face-to-face communication.”
During the pandemic, visitors were strictly limited in ICUs. “Dying alone is tragic. Families are fraught with grief and guilt for not being able to be present,” says April N. Kapu, DNP, APRN, ACNP-BC, FAANP, professor of clinical nursing at Vanderbilt University School of Nursing.
Remote communication via tablet computers have become well-known communication tools in ICUs. “Not only can the patient and family members see one another, family members can also have conversations with the healthcare team,” Kapu observes.
It ranges from care updates to difficult end-of-life conversations or ethical concerns. “Ethicist involvement can be crucial to navigating questions about the situation, how everything has transpired, and what decisions need to be made going forward,” Kapu explains.
Trying to manage many patients and also find the time to facilitate remote communication has been difficult for staff. At Vanderbilt University Medical Center, nurse practitioners and physicians volunteered to form a “family liaison” team. Providers sign up to come to ICUs, check in with the care team, and facilitate communication between family members and patients.
Some only volunteer for a day or two, while others sign up for several days. The volunteers coordinate the remote family meetings, explain lab results and the plan of care, and facilitate end-of-life discussions.
To prepare for the family liaison role, providers consulted palliative care, chaplain services, counselors, and ethicists. “Our ethics team was invaluable during this very new and difficult time to all involved — patients, families, and team members,” Kapu reports.
COVID-19 changed the way clinicians use technology in communicating, beyond just end-of-life care. “We had it before, but now we use it in our everyday communication with patients and families,” Kapu says.
Visitor restrictions were one of the biggest challenges that arose during the pandemic, says Olivia Schuman, PhD, a clinical ethics fellow at the Baylor College of Medicine Center for Medical Ethics and Health Policy. “You’d have a patient who, prior to admission for COVID, was relatively healthy — working and seeing their family,” says Schuman, a clinical ethics consultant at Houston Methodist Hospital.
Several weeks later, it would become clear to the healthcare team the patient is not going to recover. Many families could not accept this fact, partly because they were never at the bedside. “So many nuances of communication are lost when the team cannot interact with the family in person,” Schuman laments.
Families struggled to appreciate how truly sick their loved one was. This often led to families wanting to prolong life-sustaining treatment (e.g., ventilators or ECMO) that no longer benefitted the patient. One tactic employed to address this issue were “iPad visitations.”
“The medical team could livestream the patient, with all their tubes and machines, directly to family members located anywhere in the world,” Schuman says.
The time-consuming task fell on the shoulders of already-overworked nurses. It did help families see a better picture of their loved one’s dire situation. “This led to better substituted judgment by the families, and better communication with the team overall about what direction would most benefit the patient,” Schuman says.
Going forward, the iPad visitations are used anytime family cannot visit the patient in person. Non-medical staff, like social workers or patient liaisons, can facilitate it for cases in which the patient does not have an infectious disease. “iPad visitations will become part of the norm, a service that families will come to expect,” Schuman predicts.
It shifts substituted decision-making from simply family members who are geographically nearby to family members who are most informed and invested, regardless of distance. “There are psychosocial benefits for the patient and their family and better informed decision-making,” Schuman adds.
Remote communication removes barriers for families who cannot be present at the bedside due to work, transportation, or geographic location, says Leslie M. Whetstine, PhD, a bioethicist at Aultman Hospital in Canton, OH, and a professor of philosophy at Walsh University. Often, a single point person is responsible for sharing medical updates concerning a loved one across their extended family. “In such a scenario, a physician who uses remote communication could present information to many family members at once and answer questions in real time,” Whetstine says.
At Houston Methodist Hospital, the iPad visitations allow clinicians to see the family standing behind the patient. “The family sees the team of experts working hard to help their loved one,” Schuman says. “It humanizes both sides.”
- Ersek M, Smith D, Griffin H, et al. End-of-life care in the time of COVID-19: Communication matters more than ever. J Pain Symptom Manage 2021 Jan 5;S0885-3924(20)30975-1. doi: 10.1016/j.jpainsymman.2020.12.024. [Online ahead of print].