More terminally ill dying at home amid loved ones working from home during the pandemic

Since the coronavirus pandemic began, Missouri mortuary owner Brian Simmons has been making more trips to people’s homes to pick up bodies to be cremated and embalmed.

His two-person crews regularly arrive at homes in the Springfield, Missouri, area to remove the bodies of people who decided to die at home rather than spend their final days in a nursing home or hospital where family visitations were prohibited because of COVID-19.

He understands all too well why people are choosing to die at home: His own 49-year-old daughter succumbed to the coronavirus just before Christmas at a Springfield hospital, where the family was allowed only phone updates but no visits as her condition deteriorated.

“The separation part is really rough, rough rough,” Simmons says. “My daughter went to the hospital, and we saw her once through the glass when they put her on the ventilator, and then we never saw her again until after she died.”

Across the country, terminally ill patients — with COVID-19 and other diseases — are choosing to die at home rather than face the terrifying scenario of saying farewell to loved ones behind glass or during video calls.

“What we are seeing with COVID is certainly patients want to stay at home,” says Judi Lund Person, vice president for regulatory compliance for the National Hospice and Palliative Care Organization. “They don’t want to go to the hospital. They don’t want to go to a nursing home.”

National hospice organizations are reporting that facilities are seeing double-digit percentage increases in the number of patients being cared for at home.

In Westminster, Maryland, Carroll Hospice has seen a 30% to 40% rise in demand for home care, according to executive director Regina Bodnar, who says the reason is simple: People want to avoid nursing homes, coronavirus risks and dying away from loved ones.

Lisa Kossoudji, who supervises nurses at Ohio’s Hospice of Dayton, pulled her own mother, now 95, out of assisted living and brought her home to live with her after the pandemic hit. Kossoudji had gone weeks without seeing her mother and worried that her condition was deteriorating because she was being restricted to her room as the facility tried to limit the potential for the virus to spread.

Her mother, who has a condition that causes thickening and hardening of the walls of the arteries in her brain, is now receiving hospice services. And Kossoudji says she’s seeing the families she serves make similar choices.

“Lots of people are bringing folks home that, physically, they have a lot physical issues, whether it is they have a feeding tube or a trachea, things that an everyday lay person would look at and say, ‘Oh, my gosh, I can’t do this,’ ” she says. “But yet they are willing to bring them home because we want to be able to be with them and see them.”

Before the pandemic, hospice workers cared for patients dying of heart disease, cancer, dementia and other terminal illnesses in long-term care facilities and, to a lesser extent, home settings. Many families hesitated to go the die-at-home route because of the many logistical challenges, including work schedules and complicated medical needs.

But the pandemic has changed things. People suddenly working from home had more time, and they were more comfortable with home hospice care, knowing the alternative meant being unable to visit their loved ones at nursing homes.

“What happened with COVID is everything was on steroids, so to speak,” says Carole Fisher, president of the National Partnership for Healthcare and Hospice Innovation. “Everything happened so quickly that, all of a sudden, family members were prepared to care for their loved ones at home. Everything accelerated.

“I have heard families say, ‘I can care for my aged mother now very differently than I could before because I am working from home.’ And so there is more of a togetherness in the family unit because of COVID.”

Dying at home isn’t for everyone. Caring for the needs of a critically ill relative can mean sleepless nights and added stress as the pandemic rages.

Karen Rubel says she didn’t want to take her 81-year-old mother to the hospital when she had a stroke in September and then pushed hard to bring her home as soon as possible.

Rubel is president and chief executive officer of Nathan Adelson Hospice in Las Vegas, which has designated one of its in-patient facilities for COVID-19 patients.

“I get where people are coming from,” she says. “They are afraid.”