In-depth interviews with 19 adult family members of patients lost to COVID-19 during the first pandemic wave in France uncover difficulties forging a bond with intensive care unit (ICU) staff, being separated from their loved ones at the time of greatest need, and grief over “stolen moments.”
Led by researchers at Saint Louis University Hospital in Paris, the study involved semi-structured, in-depth phone interviews conducted with family members of COVID-19 patients who died in one of 12 ICUs in seven regions of France in April and May 2020. The interviews took place 3 or 4 months after the patients’ deaths, and the results were published yesterday in JAMA Network Open.
During the first phase of the pandemic, hospital visits in France and elsewhere were either highly restricted or not permitted, and family members weren’t allowed to be at the patient’s bedside, limiting their ability to be involved in decision making, the researchers said. As a result, communication was relegated mainly to the phone or videoconferencing.
Clinician phone calls often sole connection
Three different visiting policies were in place at the 12 ICUs: a total ban except perhaps at the end of life (3 ICUs), limited but regular visits (5), and end-of-life visits only (4). Conversations between clinicians and family members took place only over the phone. Median interviewee age was 46 years, 74% were women, and 42% each were the decedent’s partner or child.
Participants reported problems with bonding with the ICU team, understanding their loved ones’ condition, and managing their feelings in isolation. “Distance communication was not sufficient, and participants felt it increased the feeling of solitude,” the researchers wrote.
Interviewees noted discontinuity and interruptions in their ability to be there for their family member, producing feelings of powerlessness, abandonment, guilt, frustration, loneliness, dehumanization, and unreality. Family members who had better communication said that being able to meet the care team face to face and see the patient being well cared for was reassuring.
“At a distance, family members tended to imagine the worst,” the authors wrote. “Interestingly, the absence or rare presence of family members in the ICU during the pandemic has been reported as one the most difficult experiences for clinicians as well.”
Relatives also said they were deprived of seeing the body and participating 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,” the authors said.
After an ICU death, grieving family members are at high risk for anxiety, depression, symptoms of posttraumatic stress disorder, and complicated grief—which may be particularly acute amid the social disconnection and disrupted mourning rituals of a pandemic, they added.
“Interestingly, witnessing terminal dyspnea [shortness of breath] and not being able to say goodbye to a loved one are factors associated with increased psychological burden among relatives,” the researchers said. “Thus, we speculated that the COVID-19 pandemic and the protective measures implemented in its wake may have exacerbated these negative experiences.”
In recalling the situation, some relatives said they still couldn’t believe that it really happened. “One respondent stated, ‘It was like being in a film, I didn’t understand what was going on. What’s this story? How can it be possible that he’s gone? How did he die? Really, even today, I just don’t understand.'”
Preventing complicated, pathologic grief
Family members indicated that they needed regular support from clinicians in the form of daily calls at set times, with the same person, if possible, as well as the ability to send messages to the patient through the clinician. In addition to information about the patient’s physical condition, they wanted emotional support and empathy.
“The choice of words but also the tone, pitch, pacing and rhythm are fundamental in distance communication,” the researchers wrote. “Family members were sensitive to the quality of paraverbal communication: when adapted to the relatives’ emotions, nonverbal communication was experienced as soothing.”
Family members allowed regular visits could support the patient, witness their deteriorating condition, and ensure that he or she didn’t die alone. The few families that managed to organize a memorial service or ceremony reported great relief and positive emotions at being able to talk about the person and the death. Others chose to film the ceremony so others could view it online, have everyone listen to the same music at the same time, or share in a moment of silence.
“Specific family-centered crisis guidelines are needed to improve experiences for patients, families, and clinicians experiences,” the authors concluded. “Readjustments to better take the bereaved family members’ fundamental needs into account will have to be made if we want to prevent serious harm due to complicated or even pathological grief later on.”
Bridging communication gaps
In a commentary in the same journal, Deepshikha Charan Ashana, MD, MBA, and Christopher Cox, MD, MPH, both of Duke University in North Carolina, said that measures to connect families with dying family members are urgently needed.
“Unbalanced or unjustified separation of families from their loved ones risks further eroding the trustworthiness of health care institutions,” they said. “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.”
Ashana and Cox suggested that a mobile device at the patient’s bedside could facilitate on-demand audio or video communication with family members. “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,” they wrote.
“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.”
Recognizing the incredible burdens on ICU clinicians during the pandemic, Ashana and Cox said that other members of the care team could help provide family support, “including social workers or family navigators, possibly guided by mobile applications that assess types and severities of families’ unmet needs.”
Pausing to allow families to participate in end-of-life rituals is key to uncomplicated grief, they said, and may penetrate the depersonalization that healthcare providers have reported amid the pandemic. This and other strategies can be used even beyond the pandemic for family members who can’t be there in person due to illness, lack reliable transportation, or an inability to take a leave of absence from their workplace.