Providing emotional support and human connection for patients nearing the end of their lives is a major tenet of hospice care. So when the pandemic forced hospice medical staff to don head-to-toe protective gear, the adjustment was more difficult than just a change in uniform.
Some patients are fine when once-familiar faces are hidden behind goggles and masks, says Dr. Melissa Braunsteiner, a physician at a hospice organization in Catawba County, North Carolina. But many are “just freaked out about it,” she said.
“When you think about a nurse and a doctor coming up to you, and you’re feeling sick and confused and in a different place and they’ve got the whole bottom of their face covered and they’ve got gloves and goggles on… it’s like, ‘who is this astronaut coming towards me?’ It’s hard for patients.”
The pandemic is forcing hospice staff, patients, and their families to change their behavior at an already difficult time. Even before the pandemic, rural programs struggled with financial, regulatory, workforce, and technology issues. These include lower patient volume, higher costs associated with travel, limited broadband access, and lower retention rate among hospital staff.
Due to the high average age and poor overall health of patients in hospice care facilities, these populations are especially susceptible to coronavirus. In turn, their vulnerability threatens medical staff, families, and volunteers. Following suit with nursing homes and other assisted-living facilities, many hospice homes drastically changed their visitation policies and attempted to reduce nonessential staff-patient interaction during the pandemic.
Braunsteiner’s facility, Carolina Caring, is one organization dealing with these changes.
Carolina Caring operates the only hospice house in the area, serving two rural counties plus rural parts of counties that are officially part of a metropolitan area. The new requirements for personal protective equipment, sanitizing, and social distancing meant that the facility had to temporarily reduce capacity from 12 to seven beds. Patients and staff now go through daily temperature checks and risk-exposure screenings. Additionally, 24/7 visiting hours have been slashed to just two brief visiting periods per day.
New challenges have also cropped up for providing in-home care, which is how most rural folks receive hospice. Nurses, doctors, and social workers have to mask and goggle up in protective gear every time they enter a new home. These essential caretakers must take every precaution to prevent disease transmission as they move from patient to patient.
Home visits by bereavement counselors and chaplains, often key components of hospice care, have largely moved to an online format. In addition, though volunteers are required by Medicare regulation to make up 5% of total hospice patient care hours, due to the pandemic, many hospice volunteer programs have been halted entirely.
At Carolina Caring, volunteers, bereavement counselors, and chaplains are currently not allowed to do any in-home visits. Even those volunteers who normally make visits to the in-patient facility cannot come in, including a therapy dog and its trainer. Most of these services are instead being offered to patients over the phone or via video chat.
Braunsteiner speaks of the toll this takes on all patients, but especially those who aren’t accustomed to using computers and phones: “You can imagine what that’s like. When you’re used to your chaplain coming to your home and talking to you, or you had a volunteer who came to your home and read a book with you… that’s gone.”
Poor broadband infrastructure in rural areas exacerbates the problem. As healthcare providers try to substitute the power of face-to-face visits and skin-to-skin connection that is often so critical in hospice care, they’re faced with poor internet connections and patients who don’t have anyone to explain the technology to them. Braunsteiner and physicians from other rural hospices say patients with dementia are often the hardest hit by these changes.
Despite these obstacles, hospice physicians across the country — especially those serving rural areas — have found unique ways to continue easing patients’ pain as the end of life approaches.
To comfort patients who are frightened by the appearance of masked and gloved physicians, caretakers like Braunsteiner are “[trying] to connect with body language.” In other parts of the country, some physicians are taping smiling pictures of themselves to the front of their suits.
The creative solutions don’t stop there. In the “rural-flavored” town of Dillsburg, Pennsylvania, manager Kelly Coons of AseraCare hospice company brought smiles to her patients’ faces by organizing a chalk-art mural on the sidewalk near the facility. Carolina Caring has made some iPads available for checkout to patients who wouldn’t otherwise have the technology to receive telephone or video chat services.
Carolina Caring, like other organizations, is trying to balance the risk of spreading coronavirus with the sensitive nature of hospice work. Braunsteiner says that “we’ve made some exceptions in some circumstances, like if someone is really nearing the end we’ll let [family members] stay or let a couple more people come in, but it’s a case-by-case basis.”
Most importantly, hospice physicians haven’t lost sight of the importance of their physically and emotionally challenging work. “It’s all about keeping our employees safe so we can keep the house open,” says Braunsteiner. “Because if our employees get sick and there’s no one to take care of the patients, then we close down.”
For more information go to Carolina Caring.