In one of their last calls before Dorothy Newtown died of cancer alone in a nursing home, her son Kenneth talked with her over Zoom. (Courtesy Kenneth Newton)
For more than a year during the pandemic, families could not sit by the bedside of a sick loved one during their final days.
Only through a phone call from a doctor or nurse did sons, daughters, husbands and wives find out a family member had died.
Because coronavirus protocols prevented hospital and nursing home patients from receiving visitors, even if they didn’t have COVID, Kenneth Newton never got to say goodbye to his 92-year-old mother.
Newton, from Petaluma, had never imagined his mom would die basically alone. Last winter she developed a tumor while living in a Tennessee nursing home, and she quickly declined. Newton longed to visit, but it was against the rules.
His mom saw people who delivered food and gave her medicine, and Newton and his four siblings called regularly. But otherwise, she was on her own, entirely without family by her side. Last January, he finally received the dreaded call.
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“My mom didn’t die of COVID, but COVID did not make my mom’s last year good,” Newton said. “She was by herself. And I don’t think this is how it’s supposed to be.”
The family didn’t plan a memorial because they didn’t feel safe traveling. So instead of grieving in person with his brothers, sisters, aunts and uncles, Newton has talked to them over the phone, mostly discussing his mom’s estate — the last thing he wants to be doing.
“I’m dealing with the mechanics and logistics,” Newton said. “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.”
He chokes back tears.
“We’re supposed to cry with everyone around us.”
Rules Too Strict?
During the pandemic, most hospitals, nursing homes and assisted living facilities have been following visitor guidelines issued by the California Department of Public Health. Protocols vary depending on the transmission rates in each county. As coronavirus transmission wanes, restrictions are beginning to lift.
An isolated patient in the COVID ICU at Mercy Hospital of Folsom, near Sacramento. (Lesley McClurg/ KQED)
Mercy Hospital of Folsom is now starting to allow visitors. But for about eight months, with visitors strictly forbidden, patients had to receive devastating diagnoses alone in hospital rooms, and families were forced to make harrowing decisions, like whether to send someone to hospice, over the phone.
Erin Wemmer, a palliative care coordinator at the hospital, now wonders if the rules keeping families apart were too strict.
“(D)id we do the right thing? I know we had the best intentions in mind, but I think it’s created a lot of secondary problems,” she said.
The loosening of policies around visitors is much welcome. “Thank god it’s not what it was,” she said. “But it’s still horrible.”
Potential Trauma
Palliative care is designed to help families let go when the time comes. But that’s challenging 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,” she said. “How traumatic it can be for them to have that loved one in the hospital and the ups and downs of that, whether they survive or they don’t survive.”
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 of the palliative support team at Memorial Hermann/Texas Medical Center, speaking on an American Medical Association panel in January. “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 the family.”
The Toll on Clinicians
High rates of depression and suicide in the medical profession have long been a problem, which the pandemic has only exacerbated. Numerous studies from around the world show clinicians are now suffering from increased PTSD, depression, anxiety and insomnia.
In a survey released last fall by the website Medscape, nearly two-thirds of U.S. doctors said they battled intense burnout during the pandemic. A quarter of respondents said they were considering retiring earlier than previously planned, and another quarter had considered leaving patient care or medicine altogether.
The emotional toll has been very heavy, Wemmer says.
“I tell my husband I have nothing left,” she said.
COVID cases have just started picking up again at her hospital. This time patients are younger, including people under 30 who are connected to a ventilator.
Even though visitor restrictions have relaxed, families are still not allowed to visit loved ones with COVID, even if they’re vaccinated.
Meaning those patients who die still mostly do it alone.
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