Hospices help communities grieve during the coronavirus pandemic

The Las Vegas community was shocked in 2017 after a gunman killed 58 people at the Route 91 Harvest music festival. Less than a mile down the road, the Nathan Adelson Hospice responded.

Some hospice staff members had been at the concert, while others knew people who had been injured or killed. They all felt how the shooting reverberated throughout their community.

“We really started getting inundated with calls from people who said, ‘I just need to talk to someone,'” said Karen Rubel, president and CEO of Nathan Adelson Hospice, a not-for-profit organization that operates two inpatient units.

Nathan Adelson offered support groups, worked with people individually and provided chaplains and bereavement counselors for a community ceremony to honor the victims.

“When COVID-19 hit, we employed some of the same principles of being available to the community,” Rubel said.

Nathan Adelson, like other hospices across the country, is stepping up to serve as a resource for local residents during the pandemic. Experienced in grief and bereavement counseling, the organizations are inviting those dealing with loss of a loved one, normalcy or socialization to connect and work through their struggles.

“We try to be the community’s partner even for bereavement services, not just hospice,” Rubel said. “As we move into the holiday time, we are anticipating many more requests for bereavement and support.”

It’s something hospices have done for years. When there’s a school shooting, an employee death or a traumatic accident in a community, their chaplains and bereavement counselors are on hand to help first responders, coworkers and friends and family cope.

Grieving differently

For Elaine Jarrett, the holidays will be her first in 45 years without her late husband, Bob, who died of cancer in March. Bob was in and out of the hospital due to complications in February and March as COVID-19 safety precautions set in, eventually preventing Elaine from visiting. He ultimately spent a matter of hours at Nathan Adelson before he died.

Elaine has been unable to have any services for him, but hopes a small group can gather to celebrate his life this month, when they would have celebrated their 41st wedding anniversary.

“I’m seven months down the road and having a dickens of a hard time,” Elaine said.

Elaine, who now lives alone for the first time since she was 19, has been attending Adelson’s bereavement support groups virtually, although she wishes they were in person. She feels the loneliness of his passing regularly, and at times will go into the den to catch the scent of him that lingers on his favorite leather chair.

“In the group, it helps in a way because at least for me it helps me to understand that you’re going to go on. Everything is not going to be the same but you’re still going to go on, and you’re still going to live a productive life.”

Grief during the pandemic is different than other grief, hospice leaders say.

“For the first time in many years, people are dying alone. Their families are not getting to say goodbye,” said Dr. Kathleen Benton, president and CEO of Hospice Savannah in Georgia. “You’re talking about grief that is likely to outlive this pandemic for years to come.”

Mourners can’t achieve closure, she said, because they drop loved ones off at the emergency department and never get to see them again before they die.

“It’s actual PTSD people are having,” Benton said. “They’re not able to even believe their loved ones were dying.”

Jacquelin Osterman last saw her husband Paul, 58, when he was transferred to the ICU from urgent care on March 29 because he was struggling to breathe. He was likely exposed to COVID-19 in February.

“With COVID-19, you can’t see them once you go into the hospital. There’s no kind of contact, only people giving you updates,” Jacquelin said.

A grief counselor at Hospice Savannah reached out to Jacquelin and her two adult sons after Paul died in April. The counseling has helped the family deal with their grief, anger and questions, Jacquelin said.

“You’re just inundated with the what ifs: What if I had not brought him to the hospital that day and just let him ride out COVID-19 at home? We don’t know if they did everything they could. We just don’t know,” Jacquelin said.

The Ostermans haven’t had a funeral yet. COVID-19 has limited their ability to travel back to New York, where they’re originally from, and kept them isolated. The entire family contracted the virus at the same time as Paul and has limited social interactions since, Jacquelin said.

“That’s where we needed the grief counseling. It’s the only connection you can make. Usually when someone dies, you have friends and family,” Jacquelin said. “We have some very, very good friends here but we haven’t seen them.”

Often, without a service, the loss doesn’t feel real, Benton said.

“You have to memorialize your loved ones. It’s the only way to begin our process of grieving,” Benton said.

Hospice Savannah holds a Tree of Light service every December to recognize those who died that year. This December, the organization is planning to livestream the event so that mourning families across the country can join. Staff will light candles, read the names of those who died and share pictures.

“We’re just taking it to a totally different level because of the nation’s need,” Benton said. “What we’re finding is that more people than ever need to do this because they didn’t get to do it in the correct ceremonial way.”

Hospice Savannah plans to ask for a small donation for the memorials but won’t turn anyone away because of cost.

“I just can’t let dollars rule this opportunity out for people,” Benton said.

Making the numbers work
Maintaining a community grief service often comes down to grants and donations, hospice leaders said. Hospices are required by Medicare to provide bereavement services to clients and their families, for which they receive reimbursement, but they don’t receive those funds for external support services.

For not-for-profit Hospice Savannah, which operates a brick-and-mortar facility for grief services and employs four full-time counselors, the cost can be hundreds of thousands of dollars per year, Benton said.

“Most hospices, almost exclusively nonprofits, go beyond regulatory requirements for hospice bereavement. We lose money on those programs,” said Lynne Sexten, president and CEO of Agrace, a not-for-profit hospice and supportive care services provider in Wisconsin. “But we’re experts in grief associated with death, so just over time many of us nonprofits began to offer that to community members as well.”

Agrace develops new community support group as the need arises. The agency has offered substance overdose groups, suicide groups and partner loss groups for LGBTQ individuals, among others, Sexten said.

“What we’re hearing now is the need for COVID-19 specific groups for people who are survivors of loved ones who passed away from coronavirus,” Sexten said.

Agrace operates a grief support center, and about 30% of its support services are dedicated to the community outside of its hospice, Sexten said.

For years, Agrace didn’t charge for community services but two or three years ago started asking for a nominal fee to offset costs not covered by donations, Sexten said. They offer a sliding fee scale to make sure people can afford the service.

Rebranding as a business
As hospices’ roles in the communities expand, some are rebranding to reflect that change.

Years ago, Hope Healthcare in Fort Myers added healthcare to its name to reflect its offerings beyond hospice, said Dr. Samira K. Beckwith, president and CEO of the not-for-profit hospice and supportive services organization. The organization even calls its palliative care “comfort care.”

“No one is interested in dying,” said Beckwith.

Often, workers will say they are from Hope. Staff shirts and name tags just read “Hope.”

“We’ve been accused of being disingenuous,” Beckwith said. “I just think in community mental health, there’s so much stigma.”

By using more approachable language, Hope Healthcare can reach more people, she said. Sometimes people just aren’t ready to hear certain words associated with death, she said.

“People can only handle so much,” Beckwith said. “You have to use different language with different people.”

For its part, the National Partnership for Healthcare and Hospice Innovation, a not-for-profit that represents hospice, palliative care and advanced illness providers, added “healthcare” to its name this year to better reflect its members’ services, COO Beth Kurta said.

“Within this current time of the pandemic, people are grieving the loss of jobs, normalcy, graduations, moments in time,” Kurta said. “Members have found the ability to help in that space.”