Time for Patients to Speak Up
Updated: May 2
When my then 26-year-old daughter was diagnosed with a paralyzing nerve disorder, I planted myself next to her hospital bed and wouldn’t leave. I was a mother lion, jealously guarding her sleep, soothing her body and spirit, fetching water, taking notes for the nurses. The notion that anyone could pry me out of that room was unthinkable.
Yet today, in the era of Covid-19, parents, children and siblings are barred from being near their sick loved ones. These separations, now mandated at hospitals around the world, are perhaps the cruelest aspect of the “new normal” we’re experiencing. "It’s a heart-wrenching thing to do,” Dr. Laura Forese, CEO of New York-Presbyterian Hospital tells the New York Times. “But it’s for everyone’s protection.”
We patients and families get that. And we thank from the bottom of our hearts the first responders and medical personnel risking their lives caring for our families. For weeks we’ve been shell-shocked watching the number of deaths climb. We’re fearful for our families, livelihood and way of life. But beyond the terrifying news about lives lost and economies crashing, these separations are causing their own incalculable trauma. The New York Times documents a few of these stories:
“The last time Peter John Dario saw his father alive was on March 14, at the entrance to a hospital in Edison, N.J. An employee took him away in a wheelchair, telling Mr. Dario and his mother gently but unequivocally that they could not go in the building. In a fog of worry and confusion, as he watched his father’s diminished silhouette disappear
through the door, Mr. Dario forgot to say goodbye.
“Five days later, his father, Peter Dario, died of respiratory failure from an infection caused by the coronavirus. He was 59. None of the members of his large family — several of them now also sick with Covid-19 — were at his side.”
The scars from this experience – the words not shared, the comfort not given - are likely to be deep and long-lasting. For the sake of our humanity, we should be asking every day in every facility if easing the no-visitor policy can move forward.
In some places, it has. Virginia Mason Hospital in downtown Seattle, ground zero for the US pandemic crisis, has developed a process using nurses as “support companions”, described in a recent hospital newsletter:
“…Nurses meet family members at a designated point of entry after connecting with them on the phone if a patient appears to be nearing end of life… Nurses walk people to the patient’s room and educate them on the correct personal protection equipment (PPE) that they are required to wear, which includes masks, double gloves, gowns, and face shields. In the room, the nurse acts as both a support system and a barrier to ensure PPE is correctly worn and all safety protocols are carefully followed...
“Nurses are busy providing clinical care for these very complex patients, yes,” said Catherine O’Keefe, director of the critical care and progressive care units at Virginia Mason. “But families are always our patients, as well. We value their presence, and we want to do everything we can to help them.”
Kudos for this thoughtful and proactive approach. But even before the pandemic struck, some hospitals were still implementing restrictions on visitors. Might some facilities, by intent or oversight, be tempted to retain or even double down on visitor restrictions longer than necessary in an effort to “maintain control”, head off imagined family lawsuits, or for other reasons long debunked by research?
Today, May 1st, it appears we’re beginning to get our arms around the challenges of containment and mitigation. We’re making gains in availability of testing, PPE and hospital capacity. We’re expediting trials of vaccines and treatments. As states begin to re-open businesses, isn't it a logical time to put the no-visitor policy on hospitals’ radar? Some will embrace the opportunity as soon as they can safely do so, knowing the love, attention and advocacy of family is both healing to patients and an asset to care. Others may not.
Going forward, that’s where you, dear would-be patient (or loved one) come in: you must ask. Speak up! The more people ask for “exceptions” to no-visitor rules – thoughtfully and with respect - the more top-of-agenda it will become for the overwhelmed or reluctant hospital. Nurses and other front-line staff need your support and advocacy. Saying no to families traumatized by loss is hurting them, too.
I’m not suggesting anarchy against a facility’s well-reasoned plan for hospital visitors. But these plans and policies should be transparent to all, revisited often, and monitored/modified with the same urgent attention as the level of PPE in the supply closet.
Yes, death is inevitable. But risk is also part of life. When you lose someone, sometimes the only comfort is to be able to tell yourself “I did all I could”. Our front-line responders and clinicians are giving their all to honor that standard. We ask that as soon as humanly possible, hospitals allow that same comfort to families.