- Researchers say long-term care facilities need to find better ways to provide hospice and palliative care during the COVID-19 pandemic.
- They say people in these institutions are declining more rapidly due to a lack of personal connection and simple things such as hugs.
- Experts say families should prepare for potential palliative or hospice care for a loved one by having detailed conversations and assigning roles.
When Julianna Marrone made the difficult decision with her family to place her father, Jay, in long-term care for his dementia, she knew they were in for a long, hard haul.
Marrone knew she wouldn’t be able to see her dad as often as before. She also knew she’d have to trust strangers to watch over him when other family members were not on hand.
What she didn’t know was that the COVID-19 pandemic was going to take that difficult situation and make it even harder — both for her father and all the family members who care about him.
“My father’s natural therapy and medication is his family,” Marrone told Healthline. “When I visit my father, his eyes fill up whenever he tells me, ‘I love you.’ All he wants is his family.”
But with restrictions on visitors and no way to move their father elsewhere and get the support he needs, the family is stuck, watching and knowing that the situation may not be the best one for him.
“The situation with my dad has been awful,” Danielle Westgate, Marrone’s sister, told Healthline. “He regressed so much during quarantine.”
Like many people in both palliative care and hospice care across the country, Marrone and her family found themselves in a difficult situation.
Nursing homes and other long-term care facilities such as hospice centers are faced with keeping patients and employees safe, while often juggling too little personal protective equipment (PPE) and working within the confines of their state rules.
“Failure to plan for adequate palliative and hospice care when a substantial increase in disease and death is expected is unconscionable, and it risks undermining patient-family trust, long-term emotional health, and the core values of society,” the study authors wrote.
Dr. Jean Abbott, MH, a retired emergency medicine physician who teaches at the Center for Bioethics and Humanities at the University of Colorado Anschutz Medical Campus, told Healthline she was led to strong language in her study out of angst.
She also wanted to push the concept of doing this better, even in possible near-future pandemic lockdowns.
Abbott and her fellow study authors believe hospice centers, palliative care facilities, and nursing homes need to plan ahead and be ready, finding a way to be sure they’re well stocked with PPE and medicine.
“What happens if we run out of morphine?” she asked.
Morphine has been in short supply at times due to the need for treating people with COVID-19 in hospitals, leaving long-term care providers concerned.
“Will we be forced to have [patients in pain] suffer more? It’s unconscionable,” said Abbott.
And while much of the debate is about staffing, beds, and equipment, Abbott said the biggest impact may be the intangible that Marrone talks about: the medicinal power of personal attention and familiar interaction for a loved one in medical crisis.
“The hugs and the touching. We are learning so much more about that,” Abbott said.
In nursing homes, she points out, palliative and hospice care workers are considered to be visitors, meaning they’re either prohibited from entering or have to take a spot reserved for a family member.
Abbott said people with dementia in long-term care usually decline over a period of years. Now, with them often cut off from personal contact, they’re declining faster.
Dr. Lawrence Kay, FAAFP, the chief medical officer of Empath Health, which operates Suncoast Hospice in Florida, is familiar with what Abbott describes.
He told Healthline that the industry is working to improve how things are handled in the near future as it also tries to help families be proactive.
“There was a seismic shift in how we could operate. No one early on had a good idea of how to proceed in all this,” he said.
Their first step back then was to figure out how to create a safe environment for staff, patients, and families.
He notes that even giving workers PPE has taken a toll on people in care facilities.
“That creates its own impersonal feel,” he said. “Palliative and hospice care is all about touching and hugging people. It can be incredibly isolating for people who need that interaction and touch for their memories.”
Kay said the impact that has had on people, particularly those with dementia, has “become one of the biggest tragedies of the pandemic.”
Dr. Eric Bush, RPh, MBA, the chief medical officer for Hospice of the Chesapeake in Maryland, said that the inability of care centers to let families have access to their loved ones has impacted things greatly.
“The common story is, really with everyone, the sharper decline we have seen [in how they are doing],” Bush told Healthline. “It speaks to how adults need eyes on them on a regular basis. Family has to be the ‘squeaky wheel’ and keep an eye and have that extra advocacy. The impact has been huge.”
Experts and families agree that solutions are needed.
Experts suggest these steps if you have a family member who may be heading toward palliative or hospice care in the near future.
Even if you hope that this level of care isn’t an immediate need, discussing and planning early is a must, Abbott said, even in non-pandemic times.
“Talk to your family about what matters for you,” she said. “Do your advanced care planning with your family, and think about and communicate what is OK for you and what is not. Having everyone know that helps later on.”
“In this country, we don’t do a good job of advanced care planning as it is,” said Bush. “This situation has exacerbated that.”
Being proactive with planning helps — pandemic or not — he said.
Lori Bishop, MHA, BSN, RN, the vice president of palliative and advanced care at the National Hospice and Palliative Care Organization, agreed.
“Shop for it before you need it,” she said.
Don’t wait for the crisis to hit to learn and teach your loved one how to use services such as Zoom and FaceTime.
“Set yourself up, as much as possible, for telehealth connectivity,” Kay said. “Many are not that tech-savvy. Get things set up so it’s easy to use when and if the time comes. Zoom is not the equivalent to being there in person, but in my view, it’s helping.”
Purchase iPads or whatever your loved one finds easiest to work with. Also, practice, so everyone can be adept.
Kay said that while “tough family conversations” are always better in person, having a discussion via technology can still help if that’s the only choice.
“Explore and get the best apps and devices for you,” he said. “Do it early. You don’t want to wait until you’re in crisis. Technology can help somewhat, when all know how to work with it.”
Abbott and her co-authors are working now to push their research, hoping to develop suggestions and processes that help facilities across the nation.
“We are working with the [Colorado] state health department to see what we can do better [across the board] ahead of time,” she said.
Abbott hopes that such a plan could be adopted nationally.
“Heavy second wave preparation,” she said. “That’s what we are bracing for.”
Plan as a family who will be the family spokesperson, who will manage information between medical folks, and who will help the family member in real time whenever possible.
Knowing these things ahead of time can help things go more smoothly, even in a rough and confusing time.
Could palliative and hospice care come out the other side of this improved?
Experts think it could.
Bishop said that’s the hope across her organization.
The advent of telehealth as a more accessible option, she said, could help long term, opening up better ways for keeping family members who are distant in the loop and making group appointments more seamless.
She also believes this could help society in general get a better understanding of the importance — and varied use — of palliative and hospice care.
“We have long needed people to start seeing that hospice is a treatment option and not just for end of life,” she said. “I think more people may be seeing that from this.”
“This is a great opportunity to look at our healthcare system overall and how it interacts with this kind of care,” he said.
Lisa Mayfield, LMHC, GMHS, CMC, past president of the Aging Life Care Association Board of Directors in Seattle, said she and her group are looking toward a future when all this is better understood, and perhaps, the value of things such as access, personal touch, and more will be more valued.
“We all realize that basic [medical] needs are not enough,” she told Healthline. “We need connection to maintain quality of life. I hope all this will shift people to understand that. Now, perhaps, we will all realize that this is an essential part of care.”
Marrone wants a better future now. She wrote to Gov. Charlie Baker of her home state of Massachusetts and beseeched him to consider their plight when setting rules going forward.
“Is it ethical to let my father sit in isolation in his nursing home room and go outside only one or two times a week to see his family from a distance for 30 minutes to an hour?” she wrote.
“Is it ethical for nursing homes to tell families that they cannot take their own father out of the nursing home for a few hours, unless it was for an appointment? Is it ethical for me not to be able to hug my father, my blood, my family member?” she said.