DENVER (AP) — Maria McLain Cox deals in uncertainty.
The longtime hospital chaplain has been with patients through chemotherapy and new diagnoses. She comforts couples who have lost infants, the families of stroke victims and people who were rushed to the emergency room and didn’t survive.
There are no words McLain Cox can say to ward off difficulty, or make it pass more quickly. But she can offer her presence. She talks to the worried and grieving through what they’re feeling, or they might sit together silently. She might offer a hug. Some reach out to hold her hand as they pray. Sometimes it’s a Coke from the vending machine that forges a connection.
But then came March 2020, and the realization that the mysterious and virulent coronavirus was here in Colorado. UCHealth Poudre Valley Hospital filled with a palpable anxiety as patients arrived sick with a highly-contagious illness that doctors didn’t yet understand. As the facility entered lockdown mode, many patients said goodbye to their families, not knowing if they would see or touch each other again.
Across the state, from small-town hospice facilities to big metropolitan hospitals, clinicians and spiritual counselors trained to offer choices and dignity through illness and at the end of life are learning a new way of giving grace.
Patients have died in sealed hospital rooms, attendant nurses encased in protective gear that made them look like space travelers. Family might be talking by their bedside, but only as faces on an iPad screen, logging in from home to watch their loved one fade away.
It was people like McLain Cox who would stand in, to fill that space between the love of family and loss of life.
“I think for all of us, this felt like the most unnatural thing we’d ever experienced in our careers,” McLain Cox said. “Because the medicine that is given for people who are taking their last breath is primarily the hand of someone who loves them.
“And the distress for all of us about that situation was something that could not be remedied,” she added. “There’s no fix for that.”
At UCHealth University of Colorado Hospital in Aurora, Dr. Jon Treem is part of a team of palliative care specialists that treats patients with serious and complex illnesses, helping them manage symptoms to increase their quality of life. That also involves helping people decide when to stop treatment.
Treem is still seeing those chronically ill patients during the pandemic. But the team was also called in to counsel coronavirus patients and their families, including many people who had been healthy all their lives and had never considered the possibility of a serious illness.
Consultations with patients and their families can be hours-long meetings. People often run through all the emotions that a person might experience in a tragedy, Treem said. The conversations aren’t just about medical choices, but spiritual and emotional ones, too. What’s most important to you in life? What would your loved one want? What happens if the best-case scenario means becoming dependent on medical technology?
“The emotional work that’s involved in having people understand the gravity of their illness and what remains ahead of them,” Treem said, “it’s a long distance to ask people to walk in a very short time.”
“All of our day was with patients who never had to do this, whose families had never had to think about it. And it was room to room to room to room to room, all day,” he said.
Dr. Phil Ramos, the medical director for Halcyon Hospice, has struggled with the story of a patient with a terminal illness who finally got the first of his two vaccine doses.
A week later — before the vaccine could take effect — the man fell ill with COVID-19 and died. Had he survived the virus or not gotten it at all, Ramos said, the man would have likely lived for months longer with his original condition.
“That really hit me hard when I had to sign his death certificate, because I wonder if it was just maybe a month later, it would have been different for him,” Ramos said.
Poudre Valley Hospital in Fort Collins had just begun to let some visitors back into the hospital in October, ahead of a winter that would bring another surge in coronavirus cases to Colorado.
Chaplain Ryan Wooley received a page to the intensive care unit. That afternoon, a man ill with coronavirus was scheduled to have his breathing tube removed, likely resulting in his death.
When Wooley got to the ICU waiting room, a nurse was explaining to the man’s two siblings what it might look and sound like as they removed the breathing tube. Wooley stood with them outside the hospital room for what must have been 10 minutes as they watched the nurse conduct the procedure through a window. The siblings held hands, watching the pause and measure of their brother’s every breath. Shortly after, he died.
Wooley walked with them back to the waiting room, where they talked about what happened. Just a week earlier, the siblings had been contacted by a palliative care nurse and informed of their brother’s poor condition, and felt some relief to have been able to make the visit, Wooley said. Before they left, one of them took Wooley’s hand.
“He said, ‘Seeing that this has actually taken my loved one — I just didn’t believe before this week that COVID was real. And now I do,’” Wooley recalled. “And I helped them get to the elevator, and they left.”
The comment left him dumbfounded and angry at some people’s denial of a disease whose damage had left him to spend nearly seven months comforting families and supporting exhausted hospital staff.
“And there was a sadness too, to walk through a moment in his life that’s also very real to him,” Wooley said.
Seven months into the pandemic, with nearly 200,000 people dead from coronavirus across the U.S., he still watched people leave the hospital rooms of dying family members not wearing masks.
“They’re coming in, going to see their family member in a COVID room and walking out back to the nurse’s station without their mask on,” Wooley said. “And our nurses and staff … are still acutely aware, because of what they’ve been going through, how serious this is.
“And yet they still are dedicated to the care and comfort of families,” he added. “But I think that’s something that we’re still wrestling through as medical professionals.”
The physical distancing forced by coronavirus also makes it more difficult for some to grasp the gravity of their loved one’s condition or share the final moments before death.
“Maybe they’ve been on life support for seven days at that point, and no one in the family has been able to see them” in person, said Dr. Allie Gips, an emergency medicine and palliative care doctor at the University of Colorado Hospital. “Which is a really hard way of understanding what someone is experiencing and how sick they are. And then they’re making these decisions about what to do.”
Before the pandemic, a family might have gathered around the hospital bed to see and touch their loved ones. They might have heard the steady beeping sounds of the machines monitoring vital signs, seen the tube feeding them oxygen and watched as nurses and doctors attended to them.
Taking responsibility for a family member’s care was already stressful in pre-COVID times, notes Amy Holck, the director of palliative care at Pikes Peak Hospice and Palliative Care in Colorado Springs.
What used to be a typical routine for some families — visiting here and there, picking up requested goods and just spending time together — can’t happen anymore, and Holck says it leaves children of aging parents feeling disconnected.
“Early on, phone calls were fine. A FaceTime was fine,” Holck said. “And now we’re a year into this and people are like, ‘I still feel outside the bubble of their health care.’”
So nurses and chaplains try their best to bridge that gap.
Rev. William Jensen, a UCHealth chaplain, prints photos sent in by families and hangs them in hospital rooms. It’s not only for the patient to see; nurses and staff can also glimpse a part of their lives before illness took hold. Caretakers become surrogates for the physical company and affection that families can’t offer.
“We kind of became that presence … we’d hold the hand,” Jensen said. “We say the prayers. One family talked about, ‘We would always kind of rustle her hair as a joke.’ And they wanted me to do that. So I did. It’s nowhere close to them being there and doing it, but it’s a way for that to happen.”
Doctors and chaplains did adapt to unwieldy video calls and protective gear. Telehealth also broadened the options for how patients could access care or even say goodbye — from a patient who chose to spend their final moments at home with family in a remote cabin in rural Colorado to relatives of a patient who called in from Mexico.
And video calls still give families important opportunities to say goodbye and process their loss.
“I think it was very painful. I think it was very beautiful. Most of the time, we left those rooms realizing that people were pouring as much as they possibly could through a sieve,” said Treem, the palliative care physician. “And that not everything that they could communicate was coming through. But enough was to make it clear what they intended.”
Many caregivers are also struggling with the broad and unequal reach of coronavirus. Erin Nielsen was struck by the number of Black and Latino patients she was seeing at the University of Colorado Hospital, and many patients who did not speak English as a first language.
It was not surprising — the health care system has long struggled to serve the poor and people of color. In Colorado and nationwide, Black and Latino people have been affected by the coronavirus in disproportionate numbers.
But that inequality is on stark display on the hospital floor and in the virtual family meetings that Nielsen and the palliative care team convene. During video calls, Nielsen and other providers heard from families with multiple relatives hospitalized, either in the same facility or across the state.
“Never before had I been working with a grandmother, a mother and a son, all from one family,” said Nielsen, a licensed clinical social worker.
So many people are dying. And so many have been dying alone.
Before coronavirus, a death might feel isolating, personal, intimate. Now that grief has become communal.
“You go home and you turn on the news, and you see that that’s happening to other people. And it happened to other people on the same day as you,” said Dottie Mann, a chaplain at UCHealth Highlands Ranch Hospital.
In a culture where people often fear that talking about death will hasten its arrival, Mann struggles with how they will process the pandemic months from now, both their personal losses and the collective death toll. And perhaps some will move on without addressing it at all.
“I think the most important thing that my palliative care colleagues do together is we sit in the space, and say, ‘You’re right, it’s coming.’ We don’t deny it,” Mann said. “And how is that for you? Go ahead and cry, or go ahead and be mad.”
It’s in those conversations and that intimacy where grieving people find comfort. And sharing that “sacred space,” as Mann calls it, is also why many last responders view their work as a calling.
Ramos, the medical director for Halcyon Hospice, defines his vocation in yet another way.
“It’s medicine,” he said, “but it’s humanity.”