AUSTIN (KXAN) — Melanie Haigh-Hutchinson knows the immense pain of losing a loved one.
“He died almost three months to the day he was found to have pancreatic cancer,” she said of her first husband, Mark.
The couple was young, and they had two small children when Mark got his diagnosis.
At first, they fought the cancer, but eventually Haigh-Hutchinson said it was time to help her husband find comfort and peace. He moved to Christopher House, Hospice Austin’s care facility for when symptoms cannot be managed at home.
“Nobody was afraid of giving him too much medicine for pain. Nobody was afraid of my crying. Nobody held back on suggestions for what I should do with my children—should they come and see him at the end? Should they come and see him now that they’ve passed?” she said. “I just didn’t know what to do.”
At the time, Haigh-Hutchinson was a wound-care nurse. Now, she serves as a hospice nurse.
“I think the grieving that will come on the other side of COVID will be unique because patients haven’t been at the bedside or been able to hold their mother’s hand,” she said.
She works with Hospice Austin‘s COVID-19 team, specifically helping patients who’ve been diagnosed with the coronavirus be admitted to their hospice program.
Hospice Austin nurses told KXAN the pandemic has presented unique challenges to patient care. They’ve watched as hospitals, nursing homes and families themselves try to follow state and federal guidelines.
Sara Templeton has spent the majority of the last six months serving patients in long-term care facilities, where other “non-essential” visitors were banned, except in “end-of life” situations.
“I do feel each individual facility I’ve gone into has had their own protocol,” she said, describing some instances where family members and the full hospice team were allowed to enter and provide care.
Still, she noted other facilities interpreted “end-of-life” to mean the very last days or moments of a person’s life — with only hospice nurses or certified nurse aides allowed to enter for evaluations and to provide patient care. Those were some of the most emotional visits for Templeton.
“We were their lifeline,” she said. “The patients feel so isolated, and the families feel so helpless. I don’t know what’s right or wrong. I don’t think any of us do.”
She said she “doesn’t envy” the decisions facility directors have to make—trying to protect their residents, make them comfortable and also follow the ever-changing rules.
According to HHSC guidelines for hospice care released in August, “an essential visit is one that includes a service that must be delivered to ensure the client’s health and safety, such as medication administration or wound care. This is determined on a case-by-case basis and according to the client’s need for the service on the day of the scheduled visit.”
A spokesperson for HHSC clarified to KXAN investigators that hospice care should be deemed “essential” and workers “should be allowed into long-term care facilities to provide any services that are necessary to meet a resident’s physical or emotional needs.”
“If I’m allowed in,” Templeton said. “I’m going in, and I’m going to do as much as I’m allowed to do.”
However, the spokesperson explained, “A long term care facility can, based on COVID-19 outbreak, screening, and testing, determine that certain hospice services can be delivered by facility staff instead of hospice agency staff as a transmission-based precaution.”
They encouraged facility managers with questions to contact HHSC. The state guidelines also directed hospice providers to email PolicyRulesTraining@HHSC.state.tx.us if they are denied access to a facility.
In August, Texas Health and Human Services Commission implemented Phase One Visitation Guidelines, allowing long-term care facilities to apply for family visitation if they met certain criteria.
Phase One guidelines allow for family members and loved ones to visit a patient at the “end of life” in in-patient hospice facilities when “death is imminent,” but facilities must determine when that time comes.
This frightens Bettie Gill, who’s mother is receiving hospice care in a Central Texas long-term care facility.
“These may not be her final days, but she’s 94 — almost 95. These are getting to be her last days. Can you imagine your mother being alone? Not having you to comfort her in her final days?” she said.
Gill said her mom was still receiving evaluations and treatment from her hospice nurse, but many of the other services usually provided by a social worker and chaplain have stopped during the pandemic. Plus, she’s not there alongside her mother to help her understand what’s happening.
“That would be a lot of comfort for them,” she said. “If your mother was there, wouldn’t you want to be there as much as possible? As close as possible?”
Last week, Governor Greg Abbott indicated more restrictions could be lifted soon, but we are still waiting on more details from the Governor’s office.