Caitlin Kennedy had been working as a VNA Hospice nurse for only a few months when her world changed overnight: her son was born.
That was last fall. When it was clear COVID-19 would be changing her world again, she sought guidance from Dr. Michael Venazio, medical director at VNA/Hospice and who makes house calls to hospice patients and rounds twice daily at the organization’s 12-bedroom Hospice House on 37th Street.
“When he told me he had children of his own, and that he feels prepared for COVID-19, that really put my mind at ease,” said Kennedy. “This is a man who is very dedicated to his family. He reassured me that by following all the proper protocol, you are not putting your family at risk.”
Just as hospice nurses have COVID-19 concerns, so do their non-COVID patients and families. Part of hospice’s mission in the pandemic is to reassure them that there are protocols in place to keep them safe.
At any given time, there are around 165 people in hospice in Indian River County, receiving care at home, in a hospital or nursing home or Hospice House, and COVID-19 has profoundly affected their care. Only a handful are known to have had COVID-19. But a comprehensive set of precautions must be in place regardless.
As a result, non-COVID-19 patients succumbing to terminal illnesses are having an atypical hospice experience, forced to consider the outside world more than they might otherwise even as their experience feels profoundly personal.
The compassion normally delivered face to face, and hand to hand, instead must pass through the same barriers used to stop the virus: a surgical mask over an N95 mask, goggles, paper gowns and vinyl gloves.
“I’m a hospice nurse. We’re all about compassion,” said Kennedy. “To have that barrier that you have to put up is very hard. If you have a family member who’s hysterically crying and you can’t hug her or even pat her on the back – that’s hard.”
Hospice nurse Debbie Butti recalled a family member who reached out with her arms but then backed away. “She just made the gesture of a hug, and said, ‘Virtual hug, virtual hug.’”
“It’s a feeling of being more distant from them,” said Butti. “But I can still hold their hand. I just have to wear gloves – which I hate. It’s like babies – skin-to-skin contact is important. But we just can’t do that anymore.”
VNA Hospice jumped in early in the fight to get adequate personal protective equipment or PPE, sourcing much of it themselves including importing some from China.
“You heard all the news about the lack of PPE but we really had put a lot of energy and time into making sure we had the equipment,” said Kathy Orton, vice-president of clinical services for VNA Hospice. “We still have a roomful of it.”
Despite protective gear and safety precautions, some family members have concerns about letting hospice come into the home. The same goes for long-term care facilities, where many hospice patients spend their final days; each has protocols that dictate how outside care can be delivered.
At the same time, it may fall to the hospice nurse to explain to family members flying in from out of town that they need to quarantine in a back bedroom when hospice comes to visit – and theoretically for two weeks, though end-of-life exemptions are often made.
VNA/Hospice has worked very closely with the health department. Considered a long-term care facility, the 12,000-square-foot Hospice House which opened in 2000 must report COVID-19 cases, just as nursing homes and assisted living facilities do.
So far, there have been no cases of COVID-19 at Hospice House; two admitted patients were suspected of having the disease but tested negative, officials say. Even so, Hospice House is prepared to care for any positives: Two of its 12 private rooms are negative-pressure rooms, reserved for patients with airborne communicable diseases.
VNA Hospice, as the Vero organization is called, has more than 30 employees at Hospice House, and another 60 on what it calls the home team – 30 nurses, 10 home health aides and 20 counselors who fan out over the county to deliver end-of-life services in private homes and care facilities.
There are three chaplains on staff and four music therapists. Lately, due to COVID-19, the music therapists have been delivering their healing influence via “window therapy” – standing outside the windows of nursing homes, performing for the patient inside.
“They’re struggling in the facilities,” said Orton. “A lot of the facilities, assisted living and skilled nursing, they’re having the nurses and home health aides in, but they’re still missing the other disciplines.”
Those providing counseling, bereavement support and music therapy who are no longer allowed to enter hospital rooms and nursing homes traditionally support family members and friends who serve as caregivers, as well as dying patients. Now they can’t do that, or at least not in the way they did before the pandemic.
Facilities are also banning hospice volunteers, always an important component of care just by offering companionship and help with everyday needs.
“Hospice is very comprehensive and interdisciplinary,” said Orton, herself an RN who has worked in home health since 1991. “The other team members are working more virtually and meeting the family members outside of the patient’s room, or at their own homes.”
Hospice began preparing staff members to deal with the pandemic by what Orton called “a lot of re-education” in the basics of infection control. That includes hand-washing and the use of PPE.
Educators from the hospice staff went out with home health aides on “shared visits” to see patients, in order to ramp up their knowledge of infection control methods.
“And then there was lots of information that went out to the patients about how we were keeping them safe, so they felt comfortable about having our clinician in the house,” Orton said.
Clinicians are expected to scrub in every day using a specific hand soap acquired by VNA Hospice.
They also take their own temperature and go through a checklist of screening of symptoms – the same screening they do with patients by phone prior to coming to their homes.
“If there’s a concern that the patient may have symptoms, we’ve always asked that the patient put on a mask as well. That’s one of the ways we protect the employees.”
The questions asked of patients have expanded as COVID-19 symptom list has grown.
“Hospice has a lot of family involvement,” Orton said. “Many patients travel and many family members travel to see the patients at end-of-life. That is also a concern – where they’ve traveled from. Many times we ask them to isolate while we’re there.”
“A lot of them may isolate in another part of the house,” she said. “Then we would wear a mask and put a mask on the patient. The point is to treat the patient as if they were a PUI – person under investigation – because they may have been exposed.”
New guidelines have recently emerged for discharging COVID-19 patients from hospitals into nursing homes; since early May, the patient has had to test negative twice, in tests 24 hours apart, before they can be sent or returned to long-term care.
But even non-COVID patients have to go through additional precautions when discharged.
Butti has two non-COVID-19 patients who were recently released from the hospital into nursing homes. That triggered a two-week quarantine for them under facility guidelines.
For those newly discharged patients, even though they had no COVID-19 symptoms, she has to go through the procedure of donning and doffing full protective gear for each visit – the goggles, the gloves, the mask and the gown.
Orton pointed out one positive thing to come out of COVID-19: the increased use of technology to keep families connected.
“They’re going to continue using it post-COVID,” she said. “Shame on us for not doing it already. People are Zooming their families, and I’m thinking, why didn’t I do this last year? People are understanding the need to see loved ones.”
The hospice workers have lost track of who among their cohorts has the COVID-19 patients. Social distancing has kept them from talking regularly with their colleagues. But a diligent schedule of conference calls has kept management in touch, though that schedule is now ebbing a bit – VNA/Hospice CEO Lundy Fields’ seven-day-a-week 4 p.m. call to leaders has given way to a four-day a week schedule now that COVID-19 appears to be in a lull here.
As for the rest of the staff, they still call in twice a day – in the mornings and afternoons.
At the end of the afternoon call, music therapists got in a routine of singing a song for the staff. “A nice uplifting song,” Orton said.
Two weeks ago, the tradition ended. Orton had no particular explanation; the need seemed simply to have passed.
“It makes me sad now that I’m thinking about it,” said Orton, laughing a little at herself. Who else but a hospice nurse would be sentimental over a ritual lost because COVID-19 stress has lessened?
“They all have beautiful voices,” she said wistfully. “It was a good way to end the workday.”
