Susan Gustafson considered canceling her volunteer shift at University of Utah Hospital. She was an elementary school teacher at the time, and she’d received an email earlier that day from a displeased parent.
“I was really upset. I was really down with myself,” Gustafson said.
She didn’t cancel, but she stewed about that email all the way up to her patient’s door. There, she paused. After taking two deep breaths, she stepped inside, and “my whole perspective changed,” she said.
“Here is this person that is at the end of their journey here,” she said, “and what happened to me during that day was so insignificant compared to what I was doing, and what I was helping this patient do.”
What she was helping that person do, as she sat in quiet vigil with them, was die. In the No One Dies Alone program at the University of Utah Hospital and Huntsman Cancer Institute, volunteers sign up to sit with hospital patients whose deaths are imminent and who have no family or friends to stay with them.
Gustafson retired from teaching in 2020, around the same time that the volunteer program went on a two-year hiatus because of to the COVID-19 pandemic. But she and other volunteers have since returned to sit with patients, sometimes into the night.
“I look at it as the time they were closing one chapter of a book and opening another. ...” she said. “It’s very peaceful.”
‘Holding space’
The idea for No One Dies Alone began with Sandra Clark, a nurse in Oregon, according to a history of the program on the U.’s website. The No One Dies Alone program at the U. was started in 2017, and today, there are similar programs at Intermountain Healthcare, John Hopkins Hospital and other institutions around the country.
When Gustafson first started volunteering with the program, it was hard for her to imagine that some people don’t have anyone to be with them when they die, she said. “But it happens a lot more than I think we realize.”
According to the U., an average of two to three may patients die alone in the hospital every month. Doctors, nurses and staff try to make sure that doesn’t happen, but they can’t get to everyone.
Program co-director Heather Smith, a licensed clinical social worker who works in the U. hospital’s intensive care and palliative care units, said No One Dies Alone supports patients whose families live far away; who have outlived all of their relatives; who are estranged from their families; whose families can’t stay due to other obligations; or whose family members can’t be located.
The patients range in age from their 20s to 70s. They’re housed and unhoused. And they have “every diagnosis under the sun,” Smith said. Sometimes, the only thing they have in common is they are at the hospital by themselves.
During the height of the pandemic in 2020 and 2021, No One Dies Alone had to shut down completely. It was too dangerous for volunteers to enter the rooms of patients sick with COVID-19, Smith said, and they still don’t.
(Francisco Kjolseth | The Salt Lake Tribune) The sun sets on the University of Utah Hospital on Friday, Oct. 16, 2020, as officials announced that they were over capacity for coronavirus hospitalizations.
But in January, volunteers were able to return to patients’ rooms. In three-hour shifts around the clock, volunteers like Gustafson and Diane McDermaid will sit and read to a patient, play soft music, or, if the person can answer, ask them about their lives. Oftentimes, the volunteers will just sit, being present and providing companionship as the person transitions from life to death.
Mindy Relyea refers to sitting with someone in such a way as “holding space.” As a former No One Dies Alone volunteer who’s now an end-of-life doula, or “death doula,” she provides emotional, physical and spiritual support to people who are near death. She describes holding space as a type of acceptance.
“There’s a big difference when you sit with someone, and they’re trying to smooth things over and they want to make you feel better,” she said. “And then when you sit with someone who’s actually OK with your pain, and is actually OK with silence, it’s a much deeper, more supportive energy.”
Paying it forward
Gustafson and McDermaid each has her own reason for wanting to volunteer with No One Dies Alone.
For Gustafson, it was a car crash on an icy road in 2009 that killed her father-in-law and sister-in-law and put her mother-in-law in the hospital.
After Gustafson’s mother-in-law died the next morning, Gustafson arrived at the hospital and asked the nurse what happened. The mother-in-law had asked the nurse to stay with her and hold her hand, so she did, the nurse said. When the nurse got up for a few moments, the woman died.
“I just always was so grateful for that nurse that took the time to sit with my mother-in-law,” Gustafson said. “When we couldn’t be there, we were too far away.”
After that, Gustafson said she felt a strong need to “pay it forward,” and No One Dies Alone gave her the opportunity to do that.
McDermaid’s husband died by suicide in 2015, and she found that volunteering “was always something that gave me perspective in my healing.” Because her own husband was alone when he died, she said No One Dies Alone spoke to her.
“I wanted to be there for others,” she said.
‘Sacred’ work
McDermaid’s favorite part is how “sacred” the space feels. Relyea said that was something that stuck out to her when she first started volunteering with the program.
“I have never felt so honored in my whole life, and I was not expecting to feel that way,” she said. “I think I felt like it would just be a little bit more everyday. ... And what I’ve learned through the [No One Dies Alone] program was that it’s actually incredibly sacred. There’s nothing that’s everyday about it.”
Every few months, the entire No One Dies Alone community comes together to honor that sacredness and the lives of patients who have died under the program’s care.
Lorie Nielson is a palliative care and staff chaplain who’s also closely involved with No One Dies Alone. At the group’s quarterly meetings, she conducts a ritual that she describes as a “practice of release” involving a singing bowl.
First, a list of the names of people who died is passed around the room. Each name is said out loud, and anyone who was impacted by that person or sat with them has the option to talk about them to the group. After, Nielson strikes a singing bowl.
As the ringing sound reverberates around the room and then fades, the group can release all of the emotions that come with sitting with death, Nielson said.
The sound allows everyone to honor the experience, their emotions and the person, she said, “and then let it go, so it doesn’t become something we’re holding onto.”