IHI logo - stories of the COVID Crisis

“Could we look at this more closely… and possibly offer a better ending?”

Stone slabs atop a grassy field with sunlight streaming through grey clouds.
By Sarah E. Hull, M.Ed

Andover, MA
United States

It’s not new news that our lives are being adversely impacted by the COVID-19 virus — whether it’s from experiencing a family member or friend who has contracted it, experiencing it first-hand, being furloughed, or closing a business. We are deeply thankful for the health care professionals who work with courage on the front lines to heal patients, at risk to themselves.

I’ve been listening to stories while on furlough, and am concerned about the possibility of sick patients not being able to be present with even one family member at the end of their lives. I’ve been asking myself, “Is this the best quality care we can offer for patients and families?”

For example, a close friend of my mother’s recently contracted the virus, with her husband. They are in their early 90s, and devoted partners, in every sense of the word. They were a few weeks shy of their sixty-ninth wedding anniversary, had raised a beautiful family, and also endured the heartbreak of losing a beloved daughter. Her husband became very ill, and they had to make a decision about his going to the local hospital for care.

It was decided that he’d go, and she’d receive updates back at their community, while improving. She talked with him on the phone as often as she could. During the second week following his admission, he died, attended to by caring clinicians. I wondered if she had been given a choice to “suit up” in personal protective equipment, as the clinicians do. She could’ve held his hand, and spoken with him, even if through a clear plastic shield. The power of their mutual presence would’ve been enough.

I don’t know if that offer was extended. If not, for this remarkable couple, a lifetime together wasn’t given the important opportunity for an ending that would’ve been so well-deserved. What would he have wanted? To ensure that his wife was safe, but also to have had her near.

I’ve experienced the power of those precious moments, as have many others. We know how much it helps to be together. I was fortunate to sit by the bed of a man I deeply loved during his last full night of life. He had, over the course of 8 years (some together and some apart), opened my heart in a profound way. His loving father sat across the bed as I held his son’s hand, and his cat slept on my lap. I remember how hot his skin felt in the early morning of that last day of his life. I walked outside to get a breath of fresh air, and picked up a handful of sparkling snow. It was one of those shining winter mornings on Martha’s Vineyard. I will never forget what a surreal contrast the natural beauty was with the pain of knowing that he would soon be gone. It was inconceivable. I went back to his room and put bits of snow on his hand. He loved snow, and I hoped the cool sensation would bring him a sense of peace.

I’m writing now, with respect, to ask, despite how careful we work to be in health care, could we look at this more closely from a humanistic perspective, and possibly offer a better ending, moving forward, for another couple? Or, for any family that has suffered with not physically being present with their loved one before they passed?

From work in home care and hospice, I know that the deep grief families experience can linger for years. It’s possible that they will never feel that they had the ending hoped for. As we know, there’s no second chance for that sacred experience.

[Does] not offering families a choice create, in the need for utmost safety, an experience for patients and families who will suffer from not being together when they died? The truth is, there is no “utmost safety” with this virus. At least, not until a successful vaccine is approved.

The hospice philosophy embodies a goal to give patients quality of life, based on what they value most. It is a recognized culmination of a human life to be given a loving death. I believe that most people, if given a choice to use PPE and be with their loved one, would do so, and would sign a paper outlining the risk. It may be a small part of why hospital usage has dropped. Have we not anticipated the need of many families to be with their own, even in a pandemic?

We are the personnel working in service to heal, plus support each family’s life story. The number one fear of most people when discussing their death is dying alone, in pain. And 80 percent of patients prefer dying at home. That’s why we put fragile people in ambulances and drive them there. It’s a privilege to facilitate a meaningful and clinically supportive final page of their life experience.

I just wonder, when listening to the stories, if patients and families are asked about their wishes if things turn for the worse. They are also on the “front lines” of this pandemic, along with the clinicians, who feel pain, too, when caring for patients who are dying alone.

If families aren’t being asked, can we make an improvement, in light of what many want at the end of life — a loved one’s presence (if possible), plus quality clinical care? There are thousands of families who haven’t been given that choice yet. I hope that it soon may be offered to those who are in painful situations and need our best thinking and creative help to be kept together.

I believe my mother’s dear friend and her husband would’ve valued it.

Share your story from the COVID-19 Crisis.