By Thomas Goldsmith
North Carolina’s hospices exist to provide willing patients and families a peaceful, natural means to encounter death. But the coronavirus crisis has piled distinct new levels of stress on both hospice providers and those who receive care.
People receiving hospice care across North Carolina — whether in patients’ homes, hospitals or long-term care facilities — are meeting many of the same challenges from the coronavirus as patients and health care workers universally — including vexing shortages of personal protective gear — but to an even more profound degree.
Hospice clients are by definition already sick, and even more at risk from visitors and even medical professionals who might unknowingly introduce the deadly virus during a visit. Susan Jimison, a registered nurse at Hospice of the Carolina Foothills in Marion, said the mostly older patients she sees on home hospice visits in McDowell County are understandably concerned about the possibility of COVID-19 infection.
“They are worried that they would not recover; they have such weakened immune systems,” Jimison said during a phone interview.
Her patients can become even more distressed about their already failing health because it has become difficult to obtain even basic necessities.
“Their anxiety level is up now, as they are wondering if they are going to be able to get their medication,” Jimison said.
‘Please don’t come’
Hospice workers intend to ease the trauma, pain and logistical problems of clients’ impending deaths. But given the threat of COVID-19, some patients and families are choosing to bypass help from counselors, social workers and housekeepers in favor of purely medical care.
“Patients who are afraid of the virus — the ones in homes, not necessarily in nursing homes but at their homes — say, ‘Please don’t come in right now; I’m fine, let’s just do this by phone,’” said Jackie Ring, vice president of clinical services at Transitions LifeCare in Raleigh.
“Now, if they need us or if there’s a pain issue or something they need help with, they’re very open to us coming.”
Duke Hospice has encountered the same reluctance among patients and caregivers about having visitors in their houses, whether personal or professional.
“We’ve seen people become more conservative about who they’ll let in their home,” said Cooper Linton, associate vice president of Duke HomeCare and Hospice. “So they might skip a meeting with a social worker. They may skip a meeting or visit with the hospice aide, but they’ll take one from the nurse because they need it for pain.”
The COVID-19 virus, it has become clearer by the day, is both rapidly transmissible and potentially deadly, especially to older, more vulnerable patients. That has meant a limit of one visitor a day has been set for patients under hospice care in nursing homes, hospitals and even private homes.
“They just don’t want anyone in the building except their own staff, and some of them will only allow a nurse to come in, and some will not allow anyone unless the patient is actively dying,” Ring said of long-term care operators. “And then we can go in and work with the family and the patient, but they’re just not allowing any visitors in at all.“
For those who might be unfamiliar with hospice care, the discipline represents a system and philosophy of care more often than a designated building, even though a small percentage of patients are treated in residential hospice homes. More often, hospice organizations manage patients at home, in long-term care, or in a hospital bed. For example, of the 1,800 people for whom Transitions LifeCare provides some level of service, only 30 can be treated at its residential Hospice Home.
They receive visits or calls from professionals including certified nursing assistants, social workers, nurses, occupational and physical therapists, and doctors, sometimes for months before death.
There is so much more to be done.
— Cicely Saunders, a founder of the modern hospice movement
Initiating hospice care involves an agreement that patients will no longer receive treatment designed to cure their conditions, at least temporarily. Instead they or their representatives believe they will benefit from less intensive methods meant to make their final days more restful and less painful in any way achievable.
Researchers define the period of actively dying as “the rapidly evolving process immediately preceding death, which can be recognized hours to days before death.” Instead of receiving extraordinary, often invasive treatment to prolong life, a person in hospice care may approach death gradually, surrounded by family members, clergy or hospice aides.
COVID-19 steps in
The onset of the coronavirus pandemic has changed virtually every facet of health care in North Carolina and far beyond. As chief marketing and engagement officer at Lower Cape Fear LifeCare in Wilmington, Craig Wagner makes up part of the management team. But when he answered the phone recently, he had more pressing duties on his mind. “I’d like to talk, but I’m putting together packages of PPE for the staff,” Wagner said.
Similar scenes are taking place at hospices across the state. Like almost every medical facility, hospices, in general, are experiencing shortages of personal protective equipment, or PPE. At a recent meeting on state priorities in distributing supplies, officials told providers, including hospice operators, that emergency medical technicians and skilled nursing facilities topped the list for receiving PPE. In any case, agencies would be monitored on whether they were good stewards of supplies they received.
“We just want to make you aware that we are limited on what we can supply,” said Beth Blaise, health care preparedness program grants manager. ”We’re also going to ask you to reach out to your partners in local areas around you.”
Just as hospitals and other medical institutions have canvassed their communities for masks, gloves and gowns to protect workers, hospices have also put out the word for help from nontraditional sources that will keep some staffers from reusing protective gear.
A general plea for protective equipment recently went out from Chad Walker, director of community and government affairs at Transitions, noting the priorities set by the state, but making a case for supplying hospice care as well.
“We also know our work, during one of the most critical times in life, will continue,” Walker wrote. “Also, care at home is a key component of mitigating the spread and decreasing the stress on our healthcare system.”
Indeed, academic studies including one by the Gerontological Society of America have shown that hospice care results in generally positive measures of patient satisfaction, lower costs than hospitalization and decreased hospital stays.
Linton, at Duke, said that anxiety over COVID-19 disrupts an important aspect of hospice care, the attention paid to the needs of family members and other personal associates.
“A lot of this is about not only supporting the patient but also about supporting those caregivers and allaying their fears,” Linton said. “And right now family members are not only dealing with the fear of the unknown and the anticipated loss of a loved one, but they are also seeing things that create fear every time they flip on the television.”
This story has been updated to correct the order of the first and last name of Cooper Linton