Recently, I found a patient’s hospital room filled with three generations of family members, all eating homemade pho. The patient, a languishing Vietnamese man wracked with tuberculosis, had refused almost every hospital meal for the past two weeks. Yet he accepted a bowl of soup from his daughter’s hands — keeping him from needing a feeding tube just yet.
As a physician, I often meet families in patients’ rooms. Some are quiet and don’t participate, while others are more involved, even aggressively so. Occasionally, their efforts are detrimental to delivering quality medical care. I’ve been caught in counterproductive family arguments — once, I even had to call security. In rare circumstances, relationships between families and doctors have led to violence.
So it’s not surprising that, historically, doctors and hospitals have tried to keep families out of the way. A century ago, Boston Children’s Hospital allowed parents to visit only on Wednesdays and Sundays. Until the 1960s, some institutions, including Johns Hopkins Hospital, still permitted just a couple of visiting hours per week. And as recently as the 1970s, American mothers were separated from their newborns for hours after delivery.
Why keep families away from their hospitalized relatives? Some doctors believe they could exhaust the patient. Others say interpersonal dynamics might induce stress or even cause heart attacks. A family might inadvertently bring infections into the patient room from the outside world or crowd out the medical team from attending to the ill.
Yet it turns out that we’ve been mostly wrong about all of this.
Patients who are critically ill have shorter stays in the intensive care unit when the family is involved. Moreover, research doesn’t support the idea that relatives introduce infection. In fact, the Society of Hospital Epidemiology recently put out guidelines saying that, in most cases, family members no longer have to wear hospital-issued gowns in patients’ rooms. And people who have suffered debilitating strokes gain more function back when they have familial support.
I’ve witnessed the positive effects of familial support firsthand while caring for elderly adults who become delirious after the sun sets — a common phenomenon called sundowning that can occur in the hospital. These patients can grow so agitated that they hallucinate and try to get out of bed or yank out their IVs. Sadly, sometimes we use antipsychotic medications or employ restraints to keep them from injuring themselves. But when family is around, delirium can lift. Familiar faces reorient the patient. Restraints come off and the antipsychotic doses cease.
Families don’t obstruct us — they are our allies. Physicians spend about 15 percent of their work hours face-to-face with patients. Nurses, too, have their hands full. Sometimes, details elude us. But family members are often voluntarily attendant throughout the day. They might be the first to know when breathing changes or a fever spikes. A recent study in neonatal intensive care units showed that when parents were actively involved in caring for preterm babies, those tiny infants had gained more weight and increased breast milk feedings by the time they were discharged. Another study, at Boston Children’s Hospital, revealed that families are five times better at picking up hospital errors than standard monitoring systems. One family, for example, noticed a child who had developed fluid in his lungs before doctors did. Another discovered that a poorly positioned swaddling wrap had started to choke an infant.
In poor countries, families can be critical partners. While working at a hospital in Mumbai, I watched a son draining infected fluid from his father’s belly into a series of glass bottles. While I hope never to put such burden on a family, the impulse illustrates that both families and medical teams want the same thing: to make someone better. Families of the sick need to know they can play critical roles in advocating for and observing their sick relatives. And if doctors don’t treat families as key partners in medical care, “We are overlooking a major resource,” says Dr. Giora Netzer, an associate professor of medicine and epidemiology at the University of Maryland School of Medicine. He recently argued that restrictions on family presence in ICUs should be lifted — not only because family appears to be beneficial to health outcomes, but because narrow visitation tends to exclude low-income families.
Some hospitals should relax their visitation policies and may need to redesign space to accommodate families. If the United States adopted paid family leave, more families could take time off work to be with their relatives.
Families ultimately can also offer something that doctors really can’t: comfort. They tape up photographs, put on music, and open the curtains to let light in.
Sometimes I’ve walked into a room and the patient is alone. Maybe his family is estranged, or oceans away, or his relatives have all passed on. We do everything we can to help those patients, too. But luckier — and, often, healthier — are the sick who can convalesce with kin at their side.Sushrut Jangi is a gastroenterology fellow and instructor in medicine at Brigham and Women’s Hospital. Send comments to firstname.lastname@example.org.