Only three residents remain at Hospice of the Ozarks' 12-room inpatient center, while a roster of volunteers has dropped from 90 to six.
The Mountain Home facility has quieted and cleared out as its staff prepares to host patients who may have covid-19, the disease caused by the new coronavirus.
But in case a "surge" of patients arrives, staff members also are preparing for the anguish of knowing residents may die while isolated from loved ones.
"If that happens to us, then we're encouraged through [health] guidelines to restrict all visitors," says Executive Director Greg Wood. "And honestly, that rips at our souls. We know at the end of life, we want folks close to us."
As hospitals battle to save covid-19 patients, hospice professionals and industry advocates say the public health crisis has turned their world upside down in a different way.
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Accustomed to aiding people who are very sick, hospices now are tasked with protecting patients and families from the pandemic, while offering emotional and medical support -- sometimes from a distance when visits aren't possible.
At Hospice of the Ozarks, Wood says, staff members are talking about taking covid-19 patients close to windows in their rooms to say goodbye to families outside, or using an iPad to facilitate video calls.
They're also conscious of how covid-19 may complicate care of current patients in the facility and in their homes, where families believe their loved ones may have months or longer to live.
"Say it's my dad, and my dad is dying with Stage IV liver cancer," Wood says. "And then all of a sudden, this virus could be the thing that takes my dad. It could take him within two weeks."
More than 50 hospice providers are active in the state, according to Sam Sellers of the Hospice and Palliative Care Association of Arkansas. They serve hundreds of people near the end of their lives, offering care mostly in people's homes.
Sellers says an urgent problem for the groups is the national shortage of personal protective equipment to distribute to their nurses, aides, social workers and chaplains.
While that's an issue in other health settings, it's been severe for hospices, which aren't considered "critical providers" and aren't eligible for federal assistance, Sellers says.
Instead, the groups were shortchanged as hospitals and first responders raced to claim masks, face shields and gloves.
"Every hospice nationally is seeing shortages and is just scrambling and fighting to get the protective garments," he says.
The outbreak also has curbed some planned visits to patients who live in institutional settings, such as nursing homes, where a few facilities have said hospice providers such as chaplains can't visit for now, Sellers says.
Regulatory guidelines consider hospice staffers to be essential medical personnel who are exempt from bans on visitors to institutions, but some facilities declared more stringent policies, he says.
In some cases, institutions have suggested discharging patients from hospice programs.
"It makes for a bad situation," Sellers says. "If they're no longer on hospice, then whatever facility they're in has to provide all the lifesaving treatment that someone that's not on hospice would receive."
Another issue is that some clients and family members say they don't want visitors during the pandemic. Hospices, enabled by emergency regulatory waivers, are turning to telehealth to make their rounds.
"In some cases, the family caregivers don't want to let people into the house. ... They're being very cautious. [It's] absolutely understandable," says Jon Radulovic, vice president of communications for the National Hospice and Palliative Care Organization.
Hospice patients who typically have chronic illnesses such as cancer, lung disease, kidney failure or heart disease are acutely vulnerable to the coronavirus, says Dr. Brian Bell, chief medical officer for Arkansas Hospice.
He says he's been impressed by the perseverance of direct-care staff members through this unprecedented period.
"These are the kind of times that start to reveal things about people, reveal character and courage. ... I do see that with our staff," he says.
"They're still out there, every day, taking care of patients."
PHONE GOODBYES
Dr. Sarah Harrington, an associate professor and director of the division of hospice and palliative care medicine at the University of Arkansas for Medical Sciences, says staff members at her facility are having similar conversations.
They are trying to keep patients home as much as they can to reduce their exposure, while using new tools to connect with families when possible.
A UAMS palliative-care clinic is housed in its Winthrop P. Rockefeller Cancer Institute, and many of its patients are now getting prescription refills by mail and chatting with doctors through videoconferencing, she says.
What has changed in the Little Rock hospital is how palliative-care doctors converse with family members of patients who may not recover from their illnesses. Like many hospitals, UAMS Medical Center has prohibited visitors to slow the spread of infection.
Harrington says that's the right call, but "it is hard to have these conversations by phone, when the family can't see the patient, or see how sick they are," and because the doctor may find it harder to read a family member's body language or emotional state.
The restrictions may present a hardship for families as they process grief, Harrington says. "A lot of good work" happens in the last few days of life, as people say things they've long needed to say or express last wishes.
"We've even talked about how do we get an iPhone or an iPad into a covid-19 [patient's] room, if we have to, just so the family can see the patient, or say their goodbyes," she says.
'BE THINKING'
Harrington says the global outbreak underscores the need for everyone -- young or old, healthy or ill -- to have an advance directive, which is a statement of one's wishes about medical care.
She recommends that everyone formalize those preferences, even in more ordinary times.
"These are conversations that we're already having in the hospital," she says.
"Who would make decisions for you if you couldn't make them for yourself? What kind of care would you want if things got worse, or you had to go on life support?"
The conversations, she says, will evolve as people age or their health status changes, so it can be helpful to revisit them periodically.
In Arkansas, Bell says, there are two key pieces to an advance directive -- a conversation with a confidante and associated documents.
A health care power-of-attorney form designates a surrogate, such as a family member or close friend, who's entrusted to make decisions if a patient can't communicate.
Living wills outline explicitly what treatments may or may not be used in care, such as assisted breathing or surgery. The documents require two adult witnesses but don't have to be notarized.
Thinking about what one might want near the end is a big part of hospice care, he notes. It's also critical to make sure other people, including physicians, know about the documents.
"If they're locked away somewhere, they're not going to do you any good," Bell says.
Harrington recommended visiting the website theconversationproject.org for ways to discuss advance care planning. The National Hospice and Palliative Care Organization has similar resources and forms on its website, nhpco.org.
"For some people who are in a particularly fragile state, they might need to be thinking about what their priorities would be should they get really sick," Radulovic says.
A Section on 04/06/2020