Kenneth Newton never imagined his mom would die alone. He lives in Petaluma, Calif. Last winter his mother developed a tumor while she was living in a nursing home in Tennessee. Her health declined quickly. Newton longed to visit, but it was against the rules.
His mom saw people who delivered food and those who made sure she took her medicine. But otherwise she was alone, though Newton and his four siblings talked with her regularly.
Then, last January, they received the dreaded call. His mom had died at age 92 without any family present.
For more than a year, families could not sit by the bedside during their loved ones' final days. Instead they waited anxiously for a call from a nurse or doctor. Pandemic protocols prevented visitors inside hospitals and nursing homes.
This was true for all patients, even those who were not dying of COVID-19.
"My mom didn't die of COVID, but COVID did not make my mom's last year good," says Newton. "She was by herself. And I don't think this is how it's supposed to be."
The family hasn't planned a memorial because it hasn't felt safe to travel. Instead of grieving in person with his brothers, sisters, aunts and uncles, Newton has spent time with them on the phone, mostly discussing his mom's estate. The last thing he wants to be doing is talking about his mom's personal belongings.
"I'm dealing with the mechanics and logistics," Newton says. "The things that kind of make you feel worse in some ways. The things that you feel guilty about."
What he really wants is closure.
"I didn't get to say goodbye," Newton says, choking back tears. "We're supposed to cry with everyone around us."
Were the rules too strict?
Witnessing heartbreak like Newton's over and over is why some clinicians are starting to question restrictions that kept families apart as loved ones were dying.
"Thank God it's not what it was," says Erin Wemmer, a palliative care coordinator at Mercy Hospital of Folsom near Sacramento. "But it's still horrible."
Wemmer's hospital just started allowing visitors for non-COVID-19 patients. For about eight months, she says, it was a hard 'no.' Patients received devastating diagnoses in hospital rooms alone. Families had to make harrowing decisions over the phone about whether to keep their loved ones alive or transition to hospice.
Most hospitals, nursing homes and assisted living facilities followed visitor guidelines issued by the California Department of Public Health. Pandemic protocols varied depending on the transmission rates in each county. As the situation has improved, visitor restrictions are beginning to lift.
"It's always a balance between keeping safety in the forefront and really supporting individuals through their care process," says Phyllis Blatz, Methodist Hospital of Sacramento President.
Potential Trauma
Palliative care is designed to help families let go when the time comes, which is hard to do virtually. Most of the families Wemmer has worked with during the pandemic begged doctors to keep patients alive at all costs.
"I am sure we are going to be dealing with a lot of PTSD on so many different levels between our staff, the patients who do survive and then the families," says Wemmer.
She's especially concerned about the patients who spent weeks and months alone. They may never heal from the emotional trauma of so much isolation during a vulnerable time.
"We have now this extra layer of separation, we're all wearing scrubs," said Dr. Ana Leech, director, palliative support team, Memorial Hermann/Texas Medical Center, while speaking on an American Medical Association panel. "We are all wearing masks. So being able to have that empathy and communication with people has just been really challenging. We can't touch them, we can't hug them. We can't even have a smile or anything with his family."
The toll on clinicians
High rates of depression and suicide in the medical profession have long been a problem. The pandemic has exacerbated the situation. Numerous studies show clinicians are suffering from increased PTSD, depression, anxiety and insomnia.
In a survey released last fall by the online site Medscape, two-thirds of U.S. doctors said they battled intense burnout during the pandemic. A quarter of respondents said they were leaving the medical field because of their experience during the COVID crisis.
COVID-19 cases have just started picking up again at Erin Wemmer's hospital. This time patients are younger, including people under 30 who are connected to a ventilator to breathe.
Even though visitor restrictions have relaxed across the Mercy Hospital of Folsom, families are still not allowed to visit loved ones with COVID-19, even if they're vaccinated. Meaning those patients still mostly die alone.
"It's very heavy," says Wemmer. "I tell my husband I have nothing left."
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