Too many patients are still suffering and dying alone

"Grandpa Byron passed away."

This blue box flashed across my phone screen as I stepped off the hospital elevator Friday morning.

I was too late.

On Thursday, I had rushed out of work in hopes of saying goodbye to my grandfather one last time. The cancer was becoming too much for his body to handle. I was unsure if I'd be allowed to see him because of his pending COVID-19 test.

Required tests for new hospital patients should return results within 12 hours. But that week, they were delayed by four days. As a result, my grandfather spent four days and nights by himself, without any family allowed to visit, as he continued to worsen.

My grandfather died Friday morning, only 45 minutes after my family was notified by the doctor that we could now visit, but that our loved one likely wouldn't make it through the day. Only my aunt was able to make it to the hospital in that short amount of time. But she was stopped and questioned by hospital staff, who inaccurately told her she was not allowed upstairs. By the time they had corrected their mistake, my grandfather had already died.

I work as a hospital social worker, so I am not blind to death or the jarring aspects of end of life. I've witnessed unspeakable tragedies and faith-inspiring recoveries. Yet nothing prepares you for the pain of missing the opportunity to say goodbye, to hold a hand, to share one last prayer.

Families are essential to our patients' lives, and they should be treated as essential. Before COVID-19, families were often encouraged by the medical team to show up. Now, we are forcing families to stay away in patients' time of need and their last moments.

As a medical social worker, I've noticed the difference in outcomes between patients with large support networks and those without. Family support oftentimes fills gaps within our disjointed, inaccessible health care system. I see this most clearly with low-income and minority families, like my own. We thank families for being so involved in their loved-ones' care. We utilize them to help address symptoms of confusion or irritability. When outcomes appear bleak, I comfort crying family members.

We cannot overestimate the power of being able to console and say goodbye to our dying loved ones.

These days, with hospitals across the country continuing strict visitation policies, I listen to family members crying in fear — not only fear of a loved one's death, but of not being present. You fear your questions will go unanswered, your calls unreturned. You're depending on overworked doctors, nurses and social workers. You fear every call is bad news, coming too late.

My grandfather was one of many patients entering hospitals out of necessity during the coronavirus crisis, not expecting to spend their last days and moments alone and isolated. My family is one of many forced to endure a doubly traumatic end-of-life process because of hospital visitation policies during this pandemic.

At the start of our coronavirus response back in March, my own employer stopped allowing visitors altogether, as did many hospitals. As our state continues to flatten the curve, we allow one visitor a day, for one hour. Kids are not allowed at all.

After a lifetime together, one hour is insufficient. Families spend some of the last moments of their loved ones' lives fighting for the chance to be by their side. Others are left to watch through their tablet screens.

Hospitals have had six months to adapt to this crisis. COVID-19 isn't going anywhere anytime soon. Hospitals need to continue to adapt their policies to best serve their patients and communities.

How many families have had to say goodbye through Zoom, or through a window? How many families, like my own, haven't been able to say goodbye at all due to testing delays and insensitive visitor guidelines?

As hospital workers look ahead toward a future with COVID-19, we must balance our new normal with empathy, and a trauma-informed approach. In our efforts to keep our patients physically safe, we must not ignore the emotional harm we are imposing upon them.

As much as possible, our patients deserve to be surrounded by loved ones during the dying process, and families deserve to say goodbye one last time.

Grace Goins is a medical social worker in St. Paul.