Opinion: How one family honored mom’s dying wish

Credit: contributed

Credit: contributed

Caring for terminally ill patient with COVID-19 presents new challenges – and painstaking precautions

After she landed in the hospital with a broken hip, Parkinson’s disease and the coronavirus, 84-year-old Dorothy “Poogie” Wyatt Shields made a request of her children: “Bring me home.”

Her request came as hospital patients around the world were dying alone, separated from their loved ones whether or not they had COVID-19, because of visitation restrictions aimed at curbing the spread of the virus.

Bringing home a terminally ill patient with COVID-19 bears extra challenges: In addition to the already daunting responsibility of managing their loved one’s care, families must take painstaking precautions to keep themselves safe.

Credit: contributed

Credit: contributed

Julia Shields, 53, one of Poogie Shields’ four children, said she had reservations about the risk of infection and how it might affect her family’s health and ability to care for her mother.

“I didn’t want to bring my mom here and have it where we’re all of a sudden collapsed in bed ourselves … and can’t take care of her,” she said.

But she and her siblings were determined to honor their mother’s wishes. So, they stocked up on personal protective gear and converted the mudroom of Julia’s Virginia home into a solarium where her mother could be closer to family.

Julia wasn’t sure how long her mother would survive: It could have been a few days or even a few months at her home.

Beyond ‘fixing things’

Poogie Shields, a former guidance and addiction counselor, had an appetite for adventure, be it camping on the Appalachian Trail or moving her family to Paris for a year while writing a master’s thesis.

After raising her children in Virginia, she set off to do volunteer work, helping homeless teenagers in Florida and pregnant women facing addiction in Washington, D.C.

But over the past 20 years, Parkinson’s disease gradually limited what she could do, and three years ago she moved into an assisted living community near Julia’s home.

In mid-March, as the pandemic spread, Shields spiked a fever and got tested for the coronavirus. While self-isolating and awaiting her test results, she broke her hip and was taken to the UVA Health System University Hospital. Then, her test came back positive for COVID-19.

It wasn’t the coronavirus that was killing her: Her symptoms had largely subsided, and she wasn’t in respiratory distress.

The biggest problem was her hip. Surgery was an option, but Shields had already endured an excruciating loss of independence over the past two years. Recovery from surgery — two to three months in a rehab center with no visitors because of efforts to slow the virus in most facilities — “would have been a nightmare,” said Dr. Lily Hargrove, a private practice physician who had treated Shields.

Over the past year, as her disease progressed, Hargrove and Shields had reached an understanding that “we were beyond the point of fixing things,” Hargrove said.

A difficult decision

After care consideration, Julia and her siblings decided to pursue hospice. The hospital and hospice staffs told the family “this was not to be taken lightly — not only her dying, her potential pain, and also us getting sick,” Julia said.

The family signed up with Hospice of the Piedmont, which is one of about 75 community-based, not-for-profit hospices in the National Partnership for Hospice Innovation (NPHI).

Many hospices are facing shortages in staffing and protective equipment due to the pandemic, prompting concern from some advocates that patients won’t get the care they need.

Dr. Cameron Muir, chief innovation officer of NPHI, said most hospices in the group have treated or prepared to treat COVID patients, despite the added risks for workers. And hospices in his group, he said, have bulk-ordered protective equipment together.

Back at home, Julia and her family set to work creating a sterile-yet-welcoming solarium. They rolled in a hospital bed next to a window overlooking the deck and hung a picture Julia’s daughter had painted.

They filled the windowsill with fresh daffodils. Julia’s husband and two children, 18 and 20, went to stay at a friend’s empty house, while one of her sisters moved in to help.

Comforting mom

On March 25, Poogie Shields came home, sedated with pain medication. Out the window, she could see a redbud tree in bloom and, soon, the faces of her visiting grandchildren and other relatives.

Julia, a tax preparer, and her sister, an archaeologist, got into a rhythm of suiting up like hospital employees — in scrubs, gloves, shoe covers, masks and eye protection — every time they entered the room.

Their time together was peaceful, Julia said. Other family members hung out on the deck, 6 feet apart, just outside the window. Her sister brought an iPad to coordinate video calls and read aloud dozens of emails and cards.

Over the course of several days, Poogie Shields became unable to eat, drink or swallow medication.

As her mother began to lose awareness, Julia softly sang Episcopal hymns — “Abide with Me,” “Breathe on Me, Breath of God.”

Poogie Shields’ last day “was very peaceful,” Julia said.

She and her sister were with their mother as she took her last breath at 8:30 p.m. on March 28.

Hargrove said that in her 20 years of practice, “I’ve never had a patient die with such reported ease and grace.”

Melissa Bailey writes for Kaiser Health News, an editorially independent program of the Henry J. Kaiser Family Foundation, which is not affiliated with Kaiser Permanente. These stories are part of the SoJo Exchange of COVID-19 stories from the Solutions Journalism Network, a nonprofit organization dedicated to rigorous reporting about responses to social problems. This story originally appeared here.