ICUs of the 1990s were not inviting to families. We imposed uncompromising and paternalistic limits on visitation with patients. There was no sharing of power, or even knowledge. A patient’s family was often viewed as preoccupied by minor concerns that paled in comparison to the physician’s definitive vision of what was important. That period, in retrospect, was defined by a kind of testimonial injustice — a prevailing prejudice that deflated the authority of family and consolidated power solely within the medical team. Are we repeating that same injustice now?
What the virus that causes covid-19 brought — along with fear, contagion and uncertainty — is epistemic exclusion, which is to say that families are excluded from essential moments of their loved one’s illness, recovery and dying process that would allow understanding and healing. There is simply no way the family, excluded from the bedside during a novel pandemic, can share the knowledge the team possesses. The best tools and patterns of communication on our digital devices are never going to be enough to allow someone to truly know what’s going on in the hospital. And without families, care teams are missing essential knowledge about the patient. We are handicapping each other.
Take, for example, Fred Reyes, an ICU patient who, like so many others we’ve seen, is Hispanic and at high risk of death due to his other underlying health conditions. He’s 6-foot-2 and 265 pounds; his thrashing gets dangerous, necessitating deep sedation and intermittent paralysis, taking away his agency and voice. He’s no stranger to that — he grew up in the Southwest, where his family experienced prejudice at every turn: “We had no voice and learned to fight for our freedom and dignity. That’s where I come from.” His wife, Sharon Reyes, had been trying to become Fred’s mouth, eyes and hands, but she found it impossible to accomplish by phone. The nurses assured her, compassionately, that they would increase his morphine to help with discomfort and anxiety. Yet Sharon Reyes insisted, “He doesn’t need more narcotics, he needs me! My husband is dying because I can’t be with him.”
For understandable reasons, the pandemic forced us into crisis mode, but that doesn’t justify this ongoing lapse into old, tired patterns of care. Over the past several years, hospitals have made incredible inroads in patient and family-centered care. We worked diligently to rewire past patterns that limited family involvement in favor of a crisp clinical care plan focused on whole-person care. We also shifted our frame to integrate knowledge possessed only by the family, which helped us to see our patients as people and better understand their needs. We leveraged the practice of “narrative medicine.” We worked to understand patients in the context of their entire life story, not only as sick bodies in the context of an isolated time point with no past and no future.
Sharon Reyes had to wait a month before “through the glass” family visitation was allowed for one person at a time, and nearly another month before Fred Reyes had two negative coronavirus tests, allowing them physical contact. She swears it was the greatest moment in her entire life. “I just wanted to be with him, by his side, cheering him on, encouraging him, touching him,” she says. “We need people in our lives who love us and know us, and covid was the opposite. Being helpless and dependent is the opposite of his personality, and then us being separated is the opposite of our relationship.”
Many of our patients don’t have a Sharon Reyes — and for many of the ones who do, other barriers keep them from coming in. Many fear contracting the coronavirus at the hospital, as unlikely as that would be now given the highly effective infection control practices in place.
Devastatingly, other external factors have been exacerbated by this pandemic. The same groups disproportionately affected by the coronavirus due to structural racism are also more likely to be “essential workers” who are often afraid to come in even to see dying loved ones because then they have to isolate, miss work and risk losing their jobs. Our system forces people to choose between being with their dying family members or losing their livelihood.
Add to this the financial toxicity of survival with medical bills that often bankrupt even insured families. Then the fact that the “lucky” patients are discharged to the care of their family, who are necessarily pulled from the workforce and prone to developing major depression. We know that rates of depression, PTSD and anxiety of family members are much lower if they are present for major events in the hospital, leaving them better equipped to handle chronic critical illness following discharge. Health care workers have a responsibility to make sure we treat family members equally as people who need to know what’s going on with patients.
In covid-19 wards, this often means overcoming language barriers across the continuum of patients, families and the medical team. Indeed, our patients’ lives depend on it. Many ICU doctors can tell you stories of non-English-speaking patients who came in with subtle symptoms and weren’t attended to by a skilled interpreter — and then died what were likely preventable deaths.
The continued absence of families will have long-term consequences on care teams, too. So much of our joy in work comes from developing relationships with families and working together for the best outcomes. Families can motivate patients, in concert with physical and occupational therapy to reduce sedation and improve mobility, core concepts of the internationally recommended ABCDEF bundle that improves survival and shuts down the delirium factory that the coronavirus has become. Relatives serve as advocates, reorienting the care team to patient needs. And families need to be present at the bedside for their own mental well-being. Phone calls, even by FaceTime, are a feeble surrogate for what the family really needs.
For patients, the lack of family is debilitating. Fred Reyes said that while he was intubated and awake, he would be screaming inside his head, “ ‘I want my wife here, I want to hold her hand.’ And later when I could talk, I was just yelling it out. It crushed my ability to heal. If she wasn’t there, I could not have hope.” Sharon Reyes said the same thing happened to her: “And there was no hope for me either, so we both felt helpless.”
Once they were in the same room again, Sharon immediately set about making Fred feel human again. “I brought a bunch of things from home and just started taking care of him,” she said. “I put his hands in warm soapy water and just washed his hands very gently and he slept through the whole thing and I washed his hands, I scrubbed all the blood out from under his nails, I clipped his nails and I washed and brushed his hair.”
Families cannot be regarded as visitors. They are essential components of our care teams. Our teams understand this now, and they work hard to get families into the hospital. They go down to the parking lot, bring personal protective equipment, dress them, then take them straight up the elevator to the covid-19 units.
Not all the healing available to patients comes at the hands of their medical care team. Often, the “medicine” they require can come only from their families. It is time we recognize it as a form of injustice to exclude them, in any context.
Finally able to visit her husband again, Sharon Reyes sits back in her chair, looks Fred in the eyes and exhales. “Now we are together again, and you doctors are like, ‘You are improving so fast, we don’t even know what to do with you,’ ” she says. “Because he was going to be sent to long-term acute care, but now he doesn’t even need that. It’s a complete 180.”