Tagged Navigating Aging

Countless Homebound Patients Still Wait for Covid Vaccine Despite Seniors’ Priority

Opening another front in the nation’s response to the pandemic, medical centers and other health organizations have begun sending doctors and nurses to apartment buildings and private homes to vaccinate homebound seniors.

Boston Medical Center, which runs the oldest in-home medical service in the country, started doing this Feb. 1. Wake Forest Baptist Health, a North Carolina health system, followed a week later.

In Miami Beach, Florida, fire department paramedics are delivering vaccines to frail seniors in their own homes. In East St. Louis, Missouri, a visiting nurse service is offering at-home vaccines to low-income, sick older adults who receive food from Meals on Wheels.

In central and northern Pennsylvania, Geisinger Health, a large health system, has identified 500 older homebound adults and is bringing vaccines to them. Nationally, the Department of Veterans Affairs has provided more than 11,000 vaccines to veterans who receive primary medical care at home.

These efforts and others like them recognize a compelling need: Between 2 million and 4.4 million older adults are homebound. Most are in their 80s and have multiple medical conditions, such as heart failure, cancer, and chronic lung disease, and many are cognitively impaired. They cannot leave their homes or can do so only with considerable difficulty.

By virtue of their age and medical status, these seniors are at extremely high risk of becoming seriously ill and dying if they get covid-19. Yet, unlike similarly frail nursing home patients, they haven’t been recognized as a priority group for vaccines, and the Centers for Disease Control and Prevention only recently offered guidance on serving them.

“This is a hidden group that’s going to be overlooked if we don’t step up efforts to reach them,” said Dr. Steven Landers, president and CEO of Visiting Nurse Association Health Group, which provides home health and hospice care to over 10,000 people in New Jersey, northeastern Ohio and southeastern Florida. His organization plans to launch a pilot home vaccination program for frail patients this week.

Jane Gerechoff, 91, of Ocean Township, New Jersey, is waiting for the group to vaccinate her. She had a stroke more than a year ago and has difficulty breathing because of a serious lung disease. “I can’t walk; I’m in a wheelchair. There’s no way in the world I could get the vaccine if they didn’t come out to me,” she said in a phone interview.

Although Gerechoff doesn’t go out, she lives with an adult son who interacts with people outside the house and she receives help from physical and occupational therapists at home. Any one of them could bring in the virus.

Reaching homebound seniors presents many challenges. At the top of the list: Home care agencies and hospice organizations don’t have access to covid vaccines either for their staff or patients.

“There is no distribution of vaccines to our members, and there has been no planning surrounding meeting the needs of the people we serve,” said William Dombi, president of the National Association for Home Care & Hospice.

Organizations that administer vaccines also complain they’re not being paid enough by Medicare to cover their costs — primarily staff time and effort. (The shots are free because the federal government is paying for them.) Making a vaccine house call requires about an hour on average, including travel, time interacting with patients and post-vaccination monitoring of people for potential side effects, according to program leaders.

Medicare reimbursement for the first shot is $16.94; for a second shot, it’s $28.39, according to Shawna Ramey, a consultant who presented the data at a recent American Academy of Home Care Medicine webinar. “The actual cost of these visits is closer to $150 or $160,” Dombi said.

Then, there are issues with cold storage and transportation for the Pfizer-BioNTech and Moderna vaccines. Both vaccines are fragile after being thawed and need to be handled carefully, according to the new CDC guidance on vaccinating homebound adults.. Once vaccine vials are opened, shots need to be delivered within six hours, according to instructions from Pfizer and Moderna.

Those requirements have proved too burdensome for Prospero Health, which serves 9,000 seriously ill patients in their homes in 20 states, including nearly 2,000 homebound patients. Fewer than 10% have been vaccinated, said Dr. Dave Moen, Prospero’s medical group president.

Things will become easier if vaccines from Johnson & Johnson and AstraZeneca receive approval, as expected, he suggested. Both of those vaccine candidates are more stable than the Pfizer and Moderna vaccines and would be easier to administer in the home, Moen said.

Palmer Kloster, 84, of Bradley, Illinois, receives care from Prospero under a contract with his Medicare Advantage insurer, UnitedHealthcare. He’s a largely immobile polio survivor who has undergone open-heart surgery and receives care from paid helpers for four hours a day.

“I really need someone to come here and give me a shot,” he told me in a phone conversation. “I don’t want that disease [covid-19]. At my age, it would be very detrimental.”

In Boston, Mary Gareffa, 84, is grateful that a physician she knows and trusts, Dr. Won Lee, came to her house in early February to vaccinate her. “I haven’t been out of the house in about eight years, except by ambulance,” said Gareffa, who has stomach cancer, weighs 73 pounds and broke her hip this summer after a bad fall.

It’s essential to reach out to patients like Gareffa, said Lee, a geriatrician who works with the Boston Medical Center’s home-based program. “It’s worth providing quality of life and reducing suffering, and covid-19 causes nothing but suffering,” she said. The Boston program has vaccinated 84 people as of Feb. 12.

The vaccines come from the medical center’s supply. Before going out, staff members call patients and address any concerns they might have about getting the shots. Most are African American and many families want to know whether the vaccine will make their frail parents or grandparents sick. “They need to hear that it’s safe to get a shot from someone who knows their medical issues,” Lee said.

Wake Forest’s house call program is sending out a doctor, nurse or physician assistant paired with a pharmacy resident to deliver vaccines. About 200 people are served through the program, most of them in their late 70s or early 80s with five or more medical conditions, said Dr. Mia Yang, the program’s director.

Wake Forest’s goal is to provide vaccine house calls to up to 40 patients a week and include family caregivers if there’s adequate supply, Yang said.

Robert Pursel, 69, who has severe osteoporosis and fluid retention in his feet and legs, and his wife Gail, 72, who has serious back problems, both received Pfizer vaccines in late January from Geisinger at their home in Millville, Pennsylvania. At first, Robert said he was skeptical, but now he’s glad he said yes. If a Geisinger nurse hadn’t come to them, he wouldn’t have been able to get out on his own.

Because of his swelling, “I can’t get my shoes on,” Robert said, and “I’d have to walk barefoot through the snow and ice out there.”

Family Caregivers, Routinely Left Off Vaccine Lists, Worry What Would Happen ‘If I Get Sick’

Robin Davidson entered the lobby of Houston Methodist Hospital, where her 89-year-old father, Joe, was being treated for a flare-up of congestive heart failure.

Before her stretched a line of people waiting to get covid-19 vaccines. “It was agonizing to know that I couldn’t get in that line,” said Davidson, 50, who is devoted to her father and usually cares for him full time. “If I get sick, what would happen to him?”

Tens of thousands of middle-aged sons and daughters caring for older relatives with serious ailments but too young to qualify for a vaccine themselves are similarly terrified of becoming ill and wondering when they can get protected against the coronavirus.

Like aides and other workers in nursing homes, these family caregivers routinely administer medications, monitor blood pressure, cook, clean and help relatives wash, get dressed and use the toilet, among many other responsibilities. But they do so in apartments and houses, not in long-term care institutions — and they’re not paid.

“In all but name, they’re essential health care workers, taking care of patients who are very sick, many of whom are completely reliant upon them, some of whom are dying,” said Katherine Ornstein, a caregiving expert and associate professor of geriatrics and palliative medicine at Mount Sinai’s medical school in New York City. “Yet, we don’t recognize or support them as such, and that’s a tragedy.”

The distinction is critically important because health care workers have been prioritized to get covid vaccines, along with vulnerable older adults in nursing homes and assisted living facilities. But family members caring for equally vulnerable seniors living in the community are grouped with the general population in most states and may not get vaccines for months.

The exception: Older caregivers can qualify for vaccines by virtue of their age as states approve vaccines for adults ages 65, 70 or 75 and above. A few states have moved family caregivers into phase 1a of their vaccine rollouts, the top priority tier. Notably, South Carolina has done so for families caring for medically fragile children, and Illinois has given that designation to families caring for relatives of all ages with significant disabilities.

Arizona is also trying to accommodate caregivers who accompany older residents to vaccination sites, Dr. Cara Christ, director of the state’s Department of Health Services, said Monday during a Zoom briefing for President Joe Biden. Comprehensive data about which states are granting priority status to family caregivers is not available.

Meanwhile, the Department of Veterans Affairs recently announced plans to offer vaccines to people participating in its Program of Comprehensive Assistance for Family Caregivers. That initiative gives financial stipends to family members caring for veterans with serious injuries; 21,612 veterans are enrolled, including 2,310 age 65 or older, according to the VA. Family members can be vaccinated when the veterans they look after become eligible, a spokesperson said.

“The current pandemic has amplified the importance of our caregivers whom we recognize as valuable members of Veterans’ health care teams,” Dr. Richard Stone, VA acting undersecretary for health, said in the announcement.

An estimated 53 million Americans are caregivers, according to a 2020 report. Nearly one-third spend 21 hours or more each week helping older adults and people with disabilities with personal care, household tasks and nursing-style care (giving injections, tending wounds, administering oxygen and more). An estimated 40% are providing high-intensity care, a measure of complicated, time-consuming caregiving demands.

This is the group that should be getting vaccines, not caregivers who live at a distance or who don’t provide direct, hands-on care, said Carol Levine, a senior fellow and former director of the Families and Health Care Project at the United Hospital Fund in New York City.

Rosanne Corcoran, 53, is among them. Her 92-year-old mother, Rose, who has advanced dementia, lives with Corcoran and her family in Collegeville, Pennsylvania, on the second floor of their house. She hasn’t come down the stairs in three years.

“I wouldn’t be able to take her somewhere to get the vaccine. She doesn’t have any stamina,” said Corcoran, who arranges for doctors to make house calls when her mother needs attention. When she called their medical practice recently, an administrator said they didn’t have access to the vaccines.

Corcoran said she “does everything for her mother,” including bathing her, dressing her, feeding her, giving her medications, monitoring her medical needs and responding to her emotional needs. Before the pandemic, a companion came for five hours a day, offering some relief. But last March, Corcoran let the companion go and took on all her mother’s care herself.

Corcoran wishes she could get a vaccination sooner, rather than later. “If I got sick, God forbid, my mother would wind up in a nursing home,” she said. “The thought of my mother having to leave here, where she knows she’s safe and loved, and go to a place like that makes me sick to my stomach.”

Although covid cases are dropping in nursing homes and assisted living facilities as residents and staff members receive vaccines, 36% of deaths during the pandemic have occurred in these settings.

Maggie Ornstein, 42, a caregiving expert who teaches at Sarah Lawrence College, has provided intensive care to her mother, Janet, since Janet experienced a devastating brain aneurism at age 49. For the past 20 years, her mother has lived with Ornstein and her family in Queens, New York.

In a recent opinion piece, Ornstein urged New York officials to recognize family caregivers’ contributions and reclassify them as essential workers. “We’re used to being abandoned by a system that should be helping us and our loved ones,” she told me in a phone conversation. “But the utter neglect of us during this pandemic — it’s shocking.”

Rosanne Corcoran (right) and her mother, Rose, at Rose’s 80th birthday party in 2008. Rose now has advanced dementia and lives with Corcoran and her family. Corcoran hopes to get the vaccine but has been unable to yet. “If I got sick, God forbid, my mother would wind up in a nursing home,” she says. (Daniel Francis)

Ornstein estimated that if even a quarter of New York’s 2.5 million family caregivers became ill with covid and unable to carry on, the state’s nursing homes would be overwhelmed by applications from desperate families. “We don’t have the infrastructure for this, and yet we’re pretending this problem just doesn’t exist,” she said.

In Tomball, Texas, Robin Davidson’s father was independent before the pandemic, but he began declining as he stopped going out and became more sedentary. For almost a year, Davidson has driven every day to his 11-acre ranch, 5 miles from where she lives, and spent hours tending to him and the property’s upkeep.

“Every day, when I would come in, I would wonder, was I careful enough [to avoid the virus]? Could I have picked something up at the store or getting gas? Am I going to be the reason that he dies? My constant proximity to him and my care for him is terrifying,” she said.

Since her father’s hospitalization, Davidson’s goal is to stabilize him so he can enroll in a clinical trial for congestive heart failure. Medications for that condition no longer work for him, and fluid retention has become a major issue. He’s now home on the ranch after spending more than a week in the hospital and he’s gotten two doses of vaccine — “an indescribable relief,” Davidson said.

Out of the blue, she got a text from the Harris County health department earlier this month, after putting herself on a vaccine waitlist. Vaccines were available, it read, and she quickly signed up and got a shot. Davidson ended up being eligible because she has two chronic medical conditions that raise her risk of covid; Harris County doesn’t officially recognize family caregivers in its vaccine allocation plan, a spokesperson said.