Ralph McGehee was strong as an ox, even in his 90s, even from a wheelchair.
Maybe he could go on a ventilator, beat the long-shot odds and live to be 100, like he always said he would. Or maybe the coronavirus would suffocate his lungs anyway, leaving him to die within the unfamiliar walls of a hospital.
This is what his four children had to grapple with after McGehee contracted COVID-19 at Falmouth By the Sea, his home for the last eight years.
“When his doctor could see that his lungs were really getting affected, she said something that lit a lightbulb for me,” explained Peggy McGehee, one of his children. “She said once you have him in a hospital, you won’t see him. He’ll be all alone.”
Ralph McGehee had been to the hospital a handful of times in the last eight years, and each time he was disoriented and scared. His children all agreed that this time their dad should stay at Falmouth By the Sea. They could visit there, even if a window separated them. He’d be taken care of by staff who knew his name and his sense of humor. That was his home.
He died May 2, just eight days after his first symptoms appeared.
As the coronavirus has spread throughout Maine, residents of long-term care facilities like Falmouth By the Sea have been among the hardest hit. Of the 70 Mainers who had died as of Saturday, 39 were residents of nursing homes.
Families of seniors who contract the virus in these settings face difficult ethical and moral decisions about how much medical intervention they should consider, including hospitalization, but they often don’t have much time to make those decisions. The time between a positive diagnosis and death can be days, not weeks. Many residents of long-term care facilities may be living with other health conditions that complicate matters and because the coronavirus science is still evolving, some guesswork is involved.
Dr. Jabbar Fazeli, a geriatrician and spokesman for the Maine Medical Directors Association, which represents physicians and other staff members at long-term care facilities, said for many families the first instinct is to remove a loved one from a nursing home.
“Even before we started to see outbreaks, people were saying, ‘I’ll just take them home and care for them,’” Fazeli said. “But these people were in a facility for a reason, so that’s not always a good choice. Removing them doesn’t necessarily make them safer.”
Similarly, Fazeli said, hospitalization might not be the best choice for an elderly COVID-19 patient, whether they live in a long-term care setting or independently.
“When families are emotional, they might feel a sense of panic,” he said. “But when we make a conscious effort to remove emotion from the equation, we’re left with ‘What would the loved one want?’ ”
That’s what Nancy Houlihan kept coming back to with her sister, Elizabeth “Betsy” Miller. Like McGehee, Miller was a resident of Falmouth By the Sea, although at 59 she was much younger. Miller lived with Down syndrome and had been in assisted living since her own mother could no longer care for her.
When Miller came down with the virus last month, Houlihan talked with other family members about what steps they should take if things turned serious.
“We didn’t want to be carried away by emotion,” she said.
So Miller stayed at Falmouth By the Sea. She already had a do-not-resuscitate order and expressed that she didn’t want to be put on oxygen. The virus quickly worsened, and she died April 29, less than two weeks after testing positive.
“I know if she went to the hospital and went on a ventilator, she would have felt betrayed and abandoned,” Houlihan said. “I’m quite sure in my mind that we didn’t change the outcome. We might have had more time, but no more quality time.”
Of the state’s 1,437 confirmed cases as of Friday, 311 have been in long-term care facilities, or 22 percent. However, 55 percent of deaths where COVID-19 was a factor occurred at nursing homes, including 13 at the Maine Veterans’ Home in Scarborough and 12 at the Commons at Tall Pines in Belfast. Deadly outbreaks have been seen in long-term care facilities in other states as well.
Although long-term care facilities appear to have a disproportionately high number of cases, context is important. In Maine, whenever there has been an outbreak, state officials order universal testing, which has led to more cases. And people who live in long-term care facilities often have other health challenges that increase their mortality. In other words, yes, the coronavirus has been more deadly among older residents, but so is every other disease.
In many ways, the spread of coronavirus has perhaps forced families of seniors to have conversations that they might not have been ready to have.
“A common misconception is that people think they can deal with it when the time comes,” said Fazeli.
For instance, patients in long-term care facilities may have advanced directives, or living wills, but those don’t necessarily cover all decisions – including whether to consider a ventilator as a life-saving measure. Ventilators have become a critical tool during the COVID-19 outbreak because of how the virus attacks the lungs and airways and disrupts breathing. Older patients on ventilators have always had about a 50-50 chance of recovery, but a study in New York City recently found that 80 percent or more of coronavirus patients who were placed on breathing machines died anyway. For patients 65 and older, those odds decreased further.
And going on a ventilator means being admitted to a hospital – away from family members. That’s a big decision to make.
In the early days of the pandemic, heart-breaking stories were published of people dying all alone at hospitals. Loved ones couldn’t go inside. The best they could hope for was to say goodbyes over video.
Daryl Cady, chief executive officer of Hospice of Southern Maine, said in most cases, families have had conversations about end-of-life decisions before hospice is called – but not always.
“We certainly hope people know that there is support at end of life, particularly support for families who right now can’t do all the normal things they might want to do,” she said.
Cady said her organization has not had any COVID-19 patients yet, but the staff has had to shift its work just the same.
“Nursing homes don’t always want us to go in right now and we respect that,” she said. “We work closely with the nursing home to modify what the patient might need. During this time, if we’re not able to get in and see the patients as much, our support can turn more toward family and helping them cope.”
Houlihan, who is a retired hospice nurse, understands the gravity of the decisions. She said older people living at home might feel more compelled to opt for hospitalization, out of fear that their caregiver, whether it’s a home health nurse or a loved one, could be exposed.
“I can’t even imagine dropping a loved one off at a hospital, seeing the doors close and thinking, ‘Maybe I’ll see you; maybe I won’t,” she said. “I think our decision was clearer.”
A FRAUGHT DECISION
When someone is dealing with a major illness, quality of life is a major consideration. Terminal cancer patients might make the decision to die at home rather than to keep going to a hospital.
But what makes coronavirus so fraught is that some people can fight it off while others don’t stand much of a chance. Ninety percent of the 620 Mainers aged 60 or older who were infected by the virus have survived.
“Loss of control is really hard right now,” Fazeli said. “It’s an element people aren’t used to. I think something that makes it easier is if people know the team that’s taking care of their loved one.”
Fazeli said the older patients he encounters seem clear-eyed about the virus.
“This generation is very brave. They have lived through so much,” he said.
The families of Ralph McGehee and Betsy Miller found tremendous comfort in the care they received in their final days. That’s not to say they wouldn’t have gotten the same care at a hospital, only that they were around familiar faces.
McGehee grew up in Chicago between the Great Depression and World War II and played offensive tackle for the University of Notre Dame’s storied football team. In his four years, they never lost a game and won three national championships. Shortly after college, he was recruited by a then-new federal agency, the CIA. He spent most of his career as an intelligence officer in Asia – Japan, Taiwan, the Philippines, Thailand and Vietnam – sometimes raising concerns about the accuracy of intelligence. Those concerns compelled him to write a book after his retirement, “Deadly Deceits: My 25 Years in the CIA,” and to speak out about the need to reform CIA intelligence operations.
He married his high school sweetheart, Norma Galbreath, in 1948 and they raised four children. She died in 2012, at which point McGehee moved to Maine, where his daughter Peggy, an attorney, and son-in-law, Maine Supreme Court Justice Andrew Horton, live.
Peggy McGehee said she believes she and her siblings made the right decision for her dad but that doesn’t mean she’s without doubts.
“Could he have a been in that small percent? I don’t know,” she said, pausing to consider her hypothetical fully. “Maybe. Maybe I would have had the chance to beat him at checkers again.”
McGehee did get to see him every day near the end. She’d sit outside his window, sometimes opening it so he could hear her more easily. They sang the Notre Dame fight song. On the day before he died, Peggy said he was talking to Norma, his wife who had been gone eight years. That’s when she knew.
“He wasn’t in pain,” she said.
Nancy Houlihan said her sister, despite living with developmental disability her whole life, had a spirited independence. She loved to travel and to laugh and was a Special Olympian bowler.
In her final years, the staff and residents at Falmouth By the Sea became her friends.
After Miller was diagnosed with COVID-19, Houlihan was worried she might not get to see her sister again, but the staff at the facility found a way.
Miller’s doctor had called to give an update on her systems.
“Without actually saying there is no hope, she said there’s no hope,” Houlihan said.
The next day, they let Houlihan put on full personal protective gear and go in.
“I spent 20 minutes with her,” Houlihan said. “She was only slightly responsive, but I was able to hug her and tell her how much I loved her. Then I left.”
Miller died two days later.
The family can’t hold a traditional memorial service. Another disruption of norms brought on by the pandemic. But when things settle, Miller’s remains will be scattered in a memorial garden at a church in West Hartford, Connecticut, where she lived much of her life and where her parents’ remains already are.