This is especially true of older adults with serious chronic illnesses and paltry financial resources who are socially isolated — a group that’s “disproportionately affected” by the difficulties in accessing home healthcare, said Jason Falvey, an assistant professor of physical therapy and rehabilitation science at the University of Maryland School of Medicine.

Many agencies are focusing on patients being discharged from hospitals and rehab facilities. These patients, many of whom are recovering from COVID, have acute needs, and agencies are paid more for serving this population under complicated Medicare reimbursement formulas.

“People who have long-term needs and a high chronic disease burden, [agencies] just aren’t taking those referrals,” Falvey said.

Instead, families are filling gaps in home care as best they can.

Anne Tumlinson, founder of ATI Advisory, a consulting firm that specializes in long-term care, was shocked when a home health nurse failed to show up for two weeks in December after her father, Jim, had a peripherally inserted central catheter put in for blood cell transfusions. This type of catheter, known as a PICC line, requires careful attention to prevent infections and blood clots and needs to be flushed with saline several times a day.

“No show from nurse on Friday, no call from agency,” Tumlinson wrote on LinkedIn. “Today, when I call, this 5 star home health agency informed me that a nurse would be out SOMETIME THIS WEEK. Meanwhile, my 81 year old mother and I watched youtube videos this weekend to learn how to flush the picc line and adjust the oxygen levels.”

Tumlinson’s father was admitted to the hospital a few days before Christmas with a dangerously high level of fluid in his lungs. He has myelodysplastic syndrome, a serious blood disorder, and Parkinson’s disease. No one from the home health agency had shown up by the time he was admitted.

Because her parents lived in a somewhat rural area about 30 minutes outside Gainesville, Florida, it wasn’t easy to find help when her father was discharged. Only two home health agencies serve the area, including the one that had failed to provide assistance.

“The burden on my mother is huge: She’s vigilantly monitoring him every second of the day, flushing the PICC line, and checking his wounds,” Tumlinson said. “She’s doing everything.”

Despite growing needs for home care services, the vast majority of pandemic-related federal financial aid for healthcare has gone to hospitals and nursing homes, which are also having severe staffing problems. Yet all the parts of the health system that care for older adults are interconnected, with home care playing an essential role.

Abraham Brody, associate professor of nursing and medicine at New York University, explained these complex interconnections: When frail older patients can’t get adequate care at home, they can deteriorate and end up in the hospital. The hospital may have to keep older patients for several extra days if home care can’t be arranged upon discharge, putting people at risk of deteriorating physically or getting infections and making new admissions more difficult.

When paid home care or help from family or friends isn’t available, vulnerable older patients may be forced to go to nursing homes, even if they don’t want to. But many nursing homes don’t have enough staffers and can’t take new patients, so people are simply going without care.

Patients with terminal illnesses seeking hospice care are being caught up in these difficulties as well. Brody is running a research study with 25 hospices, and “every single one is having staffing challenges,” he said. Without enough nurses and aides to meet the demand for care, hospices are not admitting some patients or providing fewer visits, he noted.

Before the pandemic, hospice agencies could usually guarantee a certain number of hours of help after evaluating a patient. “Now, they really are not able to guarantee anything on discharge,” said Jennifer DiBiase, palliative care social work manager at Mount Sinai Health System in New York City. “We really have to rely on the family for almost all hands-on care.”

Kaiser Health News is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation which is not affiliated with Kaiser Permanente.