This time, it didn’t take much persuading for Mary Murphy to embrace home hospice. When her mother was dying from Alzheimer’s disease in 2020, she had been reluctant until she saw what a help it was. So when her husband, Willie, neared the end of his life, she embraced hospice again.
The Murphys’ house in a leafy Nashville neighborhood is their happy place — full of their treasures.
“He’s good to me — buys me anything I want,” she said, as she pulled a milky glass vase out of a floor-to-ceiling cabinet with mirrored shelves.
Willie bought Mary the display case to help her to show off the trinkets she picks up at estate sales.
Down the hall, Willie was lying in their bed, now unable to speak. His heart was giving out.
“You gonna wake up for a minute?” she asked, cradling his head. She patted his back while he cleared his throat. “Cough it out.”
Mary had been the primary caregiver for her husband, but she gets help from a new hospice agency in Nashville focused on increasing the use of end-of-life comfort care by Black families. Heart and Soul Hospice is owned and operated by people who share the same cultural background as the patients they aim to serve.
In their application to obtain a certificate of need in Tennessee, the hospice owners made it clear they are Black and intend to serve everyone but will focus on African Americans, who are currently underserved. Tennessee data shows that in Nashville just 19% of hospice patients are Black although they make up 27% of the capital city’s population.
Though the area already had numerous hospice agencies, regulators granted Heart and Soul permission to operate, based primarily on the value of educating an underserved group.
In Murphy’s first hospice experience, her mother had been living with dementia for decades. Still, Murphy had concerns about transitioning her mother to hospice. She felt as if she was giving up on her mom.
“My first thought was death,” she said.
National data shows that Black Medicare patients and their families are not making the move to comfort care as often as white patients are. Roughly 41% of Black Medicare beneficiaries who died in 2019 were enrolled in hospice, compared with 54% of white patients, according to data compiled annually by the National Hospice and Palliative Care Organization.
Murphy’s mother survived nearly three years on hospice. The benefit is meant for those in the final six months of life, but predicting when the end will come is difficult, especially in cases of dementia. Hospice provides palliative care for the dying and support for caregivers for a long as the process lasts.
Murphy did most of the caregiving — which can be overwhelming — but hospice helped with a few baths a week, medication in the mail and any medical equipment they needed.
And most important to Murphy was the emotional support, which came mostly from her hospice nurse.
“Wasn’t no doctor going to come here, hold my hand, stay here until the funeral home came for her,” she said about the day her mother died.
Last year, on the day after Thanksgiving, Willie Murphy died. And the same hospice nurse was at the Murphy home within minutes. She’d already stopped by that morning to check on him and returned as soon as Mary called and told her he wasn’t breathing.
“If you don’t feel like, ‘Oh my God, thank God I have hospice,’ if you can’t say that, then we’re doing something wrong,” said Keisha Mason, Heart and Soul’s director of nursing.
Mason, like Murphy, is Black and said that in her view there’s nothing fundamental keeping Black patients from using hospice except learning what the service can offer and that it’s basically free to patients — paid for by Medicare, Medicaid and most private health plans.
“I say to them, ‘If you see a bill, then call us, because you should not,’” she said.
As Mason helped launch this new hospice agency, she began using new language, calling hospice more than a Medicare benefit. She describes it as an entitlement.
“Just as you are entitled to unemployment, as you are entitled to Social Security, you are entitled to a hospice benefit,” she said.
The investors in Heart and Soul include David Turner, owner of CNS Hospice in Detroit; Nashville pastor the Rev. Sandy McClain; and André Lee, a former hospital administrator on the campus of Meharry Medical College, a historically Black institution in Nashville.
Lee and Turner also started a Black-focused hospice agency in Michigan and have plans to replicate the model in other states.
More families need to consider home hospice as an alternative for end-of-life care, Lee said. Nursing homes are pricey. And even with Medicare, a hospital bill can be hefty.
“You’ll go in there and they’ll eat you alive,” he said. “I hate to say [something] bad about hospitals, but it’s true.”
Hospice research hasn’t come up with clear reasons to explain the gap between white and Black families’ use of the benefit. Some experts speculate it’s related to spiritual beliefs and widespread mistrust in the medical system due to decades of discrimination.
The hospice industry’s national trade group, the NHCPO, released a diversity and inclusion toolkit and a guide to reaching more Black patients. It recommends connecting with influential DJs, partnering with Black pastors and simply hiring more Black nurses.
Bridging the gap is not overly complicated, Lee said.
“A lot of hospices don’t employ enough Black people,” he said. “We all feel comfortable when you see someone over there that looks like you.”
Well-established hospice agencies have attempted to minimize barriers with their own diversity initiatives. Michelle Drayton of Visiting Nurse Service of New York said her large agency has met with ministers who counsel families dealing with failing health.
“Many of them did not fully understand what hospice was,” she said. “They had many of the same sort of misperceptions.”
Every hospice company, whether it’s an upstart or one of the nation’s oldest, can promote end-of-life education and ease care disparities, Drayton said. “We’re not just handing out a brochure,” she added.
In parts of the country where covid-19 continues to fill hospitals, a rotating cast of traveling nurses helps keep intensive care units fully staffed. Hospitals have to pay handsomely to get that temporary help, and those higher wages are tempting some staff nurses to hit the road, too.
Nearly two years into the pandemic, there’s some truth in a joke circulating among frustrated ICU nurses: They ask their hospitals for appropriate compensation for the hazards they’ve endured. And the nurses are rewarded with a pizza party instead.
Theresa Adams said that’s what happened at the Ohio hospital where she worked. The facility across town was offering bonuses to keep its nurses from leaving. But not hers. They got a pizza party.
“I heard a lot of noise about ‘Well, this is what you signed up for.’ No, I did not sign up for this,” she said of the unparalleled stress brought on by the pandemic.
Adams is an ICU nurse who helped build and staff covid units in one of Ohio’s largest hospitals. She recently left for a lucrative stint as a travel nurse in California.
Travel nurses take on temporary assignments in hospitals or other health care facilities that have staffing shortages. The contracts typically last a few months and usually pay more than staff positions.
Adams hopes to return to her home hospital eventually, though she’s irritated at management at the moment.
“I did not sign up for the facility taking advantage of the fact that I have a calling,” she said. “There is a difference between knowing my calling and knowing my worth.”
Hospitals – and Staff – Reckon with Costs of Hiring Travel Nurses
A reckoning may be on its way as hospitals try to stabilize a worn-out workforce.
The use of traveling nurses took off in the 1980s in response to nursing shortages. Although they’ve always been paid more for their flexibility, some traveling ICU nurses can now pull in as much as $10,000 a week, which can be several times more than staff nurses earn.
While some hospitals have offered retention bonuses or increased pay for permanent staff members, nurses say it doesn’t compare to the financial bonanza of traveling. Hospital managers now find themselves trapped in a pricey hiring cycle — competing for, in particular, the most highly trained critical care nurses who can monitor covid patients on the advanced life-support devices known as ECMO (extracorporeal membrane oxygenation) machines.
“Our turnover for ECMO nurses is incredible because they’re the most seasoned nurses. And this is what all my colleagues are facing, too,” said Jonathan Emling, a nurse and the ECMO director at Ascension St. Thomas Hospital in Nashville.
The shortage of ECMO nurses has prevented the hospital from admitting additional covid patients who need their blood oxygenated outside their body, he said. No more staff nurses have enough experience to start the training.
“We will train these people and then six months later they will be gone and traveling,” Emling said. “So it’s hard to invest so much in them trainingwise and timewise to see them leave.”
And when they leave, hospitals are often forced to fill the spot with a traveler.
“It’s like a Band-Aid,” said Dr. Iman Abuzeid, co-founder of a San Francisco nurse recruiting company called Incredible Health. “We need it now, but it is temporary.”
Incredible Health helps to quickly place full-time staff nurses in some of the country’s largest health systems. The number of listings for full-time, permanent nurses on the company’s platform has shot up 200% in the past year.
To help hospitals, some states are chipping in to hire travel nurses. But for many hospitals, the higher costs are straining their budgets, which is especially difficult for those that have suspended elective surgeries — often a hospital’s biggest moneymaker — to accommodate covid patients.
“Every executive we interact with is under pressure to reduce the number of traveler nurses on their teams, not just from a cost standpoint but also from a quality-of-care standpoint,” Abuzeid said.
It’s hard on morale as well: Camaraderie suffers when newcomers need help finding syringes or other supplies but may be paid two or three times as much as the staff nurses showing them the ropes.
Some hospitals are trying to stop the turnover by offering big signing bonuses to permanent nurses, as well as loan forgiveness or tuition assistance to pursue additional education. Hospitals have also hiked pay for nurses as they earn certifications, especially in critical care.
Importing Foreign Nurses to Fill the Gap
Other medical centers are looking outside the U.S.
Henry Ford Health System in Michigan announced plans to bring in hundreds of nurses from the Philippines. Smaller community hospitals are looking abroad, too. City-owned Cookeville Regional Medical Center, in a Tennessee town of 35,000, is now recruiting its first foreign nurses.
“The cost for what we pay for a local recruiter to bring us one full-time staff member is more expensive than what we are going to be spending to bring one foreign nurse,” said Scott Lethi, chief nursing officer at Cookeville Regional.
Lethi hopes the staffers from overseas will decide to stay more than a year or two. He said even new nurses sometimes leave or burn out: Cookeville hired a few recent graduates of U.S. nursing programs who quit after just a few months.
Among ICU nurses of all ages, two-thirds have considered leaving the profession because of the pandemic, according to a survey published in September by the American Association of Critical-Care Nurses.
When a nurse leaves — whether to retire, become a travel nurse or work in another field — the remaining nurses can be stretched dangerously thin, caring for more patients at once. Covid patients are particularly demanding, especially those on ventilators or ECMO machines who may require one-on-one care round-the-clock. Covid patients may be hospitalized for weeks or months.
“My ability to care for people has suffered. I know that I have missed things otherwise I would not have missed had I had the time to spend,” said Kevin Cho Tipton, an advanced practice nurse in the South Florida public health system. “Many of us feel like we’re becoming worse at our jobs.”
The worry about providing substandard care weighs heavily on nurses. But in the end, Tipton said, it’s the patients who suffer.
This story is part of a partnership that includes WPLN, NPR and KHN.
KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.
Masks and physical distancing are proving to have major fringe benefits, keeping people from getting all kinds of illnesses — not just covid-19. But it’s unclear whether the protocols will be worth the pain in the long run.
The teachers at New Hope Academy in Franklin, Tennessee, were chatting the other day. The private Christian school has met in person throughout much of the pandemic — requiring masks and trying to keep kids apart, to the degree it is possible with young children. And Nicole Grayson, who teaches fourth grade, said they realized something peculiar.
“We don’t know anybody that has gotten the flu,” she said. “I don’t know of a student that has gotten strep throat.”
It’s not just an anecdote.
A study released this month in the Journal of Hospital Medicine, led by researchers from Vanderbilt University Medical Center, found that across 44 children’s hospitals the number of pediatric patients hospitalized for respiratory illnesses is down 62%. The number of kids in the U.S. who have died of the flu this season remains in the single digits. Deaths have dropped dramatically, too, compared with the past 10 years: The number of flu deaths among children is usually between 100 and 200 per year, but so far only one child has died from the disease in the U.S. during the 2020-21 flu season.
Adults aren’t getting sick either. U.S. flu deaths this season will be measured in the hundreds instead of thousands. In 2018-19, a moderate flu season, an estimated 34,200 Americans died.
Effective Combo
It’s not just the masks and physical distancing that are tamping down communicable disease, said Dr. Amy Vehec, a pediatrician at Mercy Community Healthcare, a Tennessee clinic that gets federal funding. It’s become a serious societal faux pas to go anywhere with a fever — so parents don’t send their ailing kids to school, she said.
“They are doing a better job of staying home when they’re sick,” Vehec said. That includes adults who may feel ill.
Isolating when feeling bad could be kept up after the pandemic. But the isolation, the distance and the masks are not working for many kids, Vehec said.
Children with speech trouble aren’t seeing their teacher’s mouth to learn how to speak correctly, for instance.
“I think it has been a necessary evil because of the pandemic, and I have completely supported it, but it has had prices. It’s had consequences,” she said. “Kids’ education is suffering, among other things.”
And with covid vaccines unavailable to children for a while yet, it may be another year of masks in schools.
Some experts, like researchers trying to improve masks, argue that more societies should embrace masking — as some Asian countries have. But even infectious-disease experts like Dr. Ricardo Franco of the University of Alabama-Birmingham doubt that’s practical.
“I’m a little skeptical that this crisis will be enough for a widespread culture change, given how difficult it’s been to achieve a reasonable culture shift in the previous months,” Franco said.
The most realistic setting for lasting change may be within health care itself.
Doctors and nurses didn’t usually wear masks before covid. Dr. Duane Harrison, who directs an emergency department for an HCA hospital outside Nashville, mentioned a physician colleague who has worn a mask since he got out of medical school.
“We used to joke and clown with him about this,” Harrison said. “Until this.”
Now that everyone wears masks, Harrison’s department has found the same thing many other workplaces have: Employees aren’t calling out sick, unless it’s covid.
“When covid’s done, this is a practice that most of us will probably continue,” Harrison said. “Because we won’t be worried about runny-nose kids and elderly people who don’t know they’re sneezing in your face.”
Some hospital systems, including Nebraska Medicine, have started to relax universal masking requirements for their staffs. But even vaccinated staffers still have to wear a mask when seeing patients. Intermountain Healthcare in Utah has signaled masks will continue to be required when a statewide mandate lifts in April.
‘Is Everyone Going to Need a Break?’
But even believers in the effectiveness of masks have their doubts about the medical community keeping it up.
“The larger question is: Is everyone going to need a break?” asked Dr. Joshua Barocas, who studies infectious diseases at Boston University.
Whatever the future holds, public health officials say, the time has not yet come to drop mask requirements as the U.S. waits for more people to get a covid vaccine. But eventually, even doctors and nurses are ready to see smiling faces again.
“I know I’m going to need to retire my masks at some point in the future,” Barocas said, “for a little bit.”
Mary Barnett is one of about a dozen seniors who got a covid-19 vaccine on a recent morning at Neighborhood Health, a clinic tucked in a sprawling public housing development on the south side of downtown Nashville, Tennessee.
“Is my time up, baby?” Barnett, 74, asked a nurse, after she’d waited 15 minutes to make sure she didn’t have an allergic reaction. Barnett, who uses a wheelchair, wasn’t in any particular rush. But her nephew was waiting outside, and he needed to get to work.
“Uber, I’m ready,” she joked, calling him on the phone. “Come on.”
Seniors of color like Barnett are lagging in covid vaccinations, and the Biden administration plans to redirect doses to community clinics as soon as next week to help make up for the emerging disparity. Tennessee is one of a few states allocating vaccines to the network of clinics known as FQHCs, or federally qualified health centers.
In most of the states reporting racial and ethnic data, a KHN analysis found that white residents are getting vaccinated at more than twice the rate of Black residents. The gap is even larger in Pennsylvania, New Jersey and Mississippi.
“Equity is our north star here,” Dr. Marcella Nunez-Smith said at a briefing Tuesday, announcing vaccine shipments to the federally funded clinics. “This effort that focuses on direct allocation to community health centers really is about connecting with those hard-to-reach populations across the country.”
Nunez-Smith, who leads the administration’s health equity task force, said federally funded clinics — at least one in every state — will divvy up a million doses to start with, enough for 500,000 patients to get both doses. Eventually, 250 sites will participate.
The administration said roughly two-thirds of those served by FQHCs live at or below the poverty line, and more than half are racial or ethnic minorities.
Seeking People Out
In Nashville, more than a third of eligible white residents have gotten their first shot, compared with a quarter of Hispanic residents and fewer than one-fifth of Black Nashvillians.
Unlike many local health departments, Neighborhood Health is not fending off crowds. They’re seeking people out. And it’s slow work compared with the mass vaccination campaigns by many public health workers and health systems.
Nashville is a key site in Black history. Pictured here in 1960, a young John Lewis at the city jail after his arrest at a downtown drugstore lunch counter, with O.D. Hunt, left, and Dennis Gregory Foote, students at Tennessee A&I State University. Staff photo by Jimmy Ellis (The Tennessean).
Barnett lives in a public housing complex that gathered names of people interested in getting the vaccine. She was lucky to have her nephew’s help to get to her appointment; transportation is a challenge for many seniors. Some patients cancel at the last minute because a ride falls through. Often, the clinic offers to pick up patients.
Aside from logistical challenges, Barnett said, many of her neighbors are in no rush to get their dose anyway. “I tell them about taking it, they say, ‘Oh, no, I’m not going to take it.’ I say, ‘What’s the reasoning?’”
Usually, Barnett said, they don’t offer much of a reason. Her own motivation is a sister with kidney disease who died of covid in July.
“You either die with it or die without it,” her brother told her in support of getting the vaccine. “So if the shot helps, take the shot.”
Same Story, Next Chapter
People of color have made up an outsize share of the cases and deaths from covid nationwide. And, predictably, the same factors at play driving those trends are also complicating the vaccine rollout.
Rose Marie Becerra received an invitation to get the vaccine through Conexión Américas, a Tennessee immigrant advocacy nonprofit. A U.S. citizen originally from Colombia, she’s concerned about those without legal immigration status.
“The people who don’t have documents here are nervous about what could happen,” she said, adding they worry that providing personal information could result in immigration authorities tracking them down.
And unauthorized immigrants are among those at the highest risk of covid complications.
Even with 1,300 total community health centers around the country, Neighborhood Health CEO Brian Haile said his 11 clinics in the Nashville area can’t balance out a massive health system that tends to favor white patients with means.
Haile said everyone giving vaccines — from hospitals to health departments — must focus more on equity.
“We know what’s required in terms of the labor-intensive effort to focus on the populations and vaccinate the populations at the highest risk,” Haile said. “What we have to do as a community is say, ‘We’re all going to make this happen.’”
Republished courtesy of KHN (Kaiser Health News), a nonprofit news service covering health issues. It is an editorially independent program of KFF (Kaiser Family Foundation), which is not affiliated with Kaiser Permanente.
“I’m not anti- hospice at all,” said Joy Johnston, who relocated to New Mexico years ago at age 40 to care for her dying mother.
“But I think people aren’t prepared for all the effort that it takes to give
someone a good death at home.”
Surveys
show dying at home is what most Americans say they want. But it’s “not all
it’s cracked up to be,” said Johnston, a caregiver advocate and writer from
Atlanta.
She wrote an essay
about her frustrations with the way hospice care often works in the United
States. Johnston, like many family caregivers, was surprised that her mother’s
hospice provider left most of the physical work to her. She said that during
the final weeks of her mother’s life, she felt more like a tired nurse than a
devoted daughter.
Hospice allows a patient deemed to have fewer than six months to live to
change the focus of their medical care — from the goal of curing disease to a
new goal of using treatments and medicines to maintain comfort and quality of
life. It is a form of palliative care, which also focuses on pain management,
but can be provided while a patient continues to seek a cure or receive
treatments to prolong life.
According to a recent
Kaiser Family Foundation poll, 7 in 10 Americans say they would prefer to
die at home. And that’s the direction the health care system is moving, as part
of an effort to avoid unnecessary and expensive treatment at the end of life.
(Kaiser Health News is an editorially independent program of the foundation.)
The home hospice movement has been great for patients and many patients are
thrilled with the care they get, said Dr. Parul Goyal,
a palliative care physician with Vanderbilt Health.
“I do think that when they are at home, they are in a peaceful environment,” Goyal said. “It is comfortable for them. But,” she noted, “it may not be comfortable for family members watching them taking their last breath.”
“While it was difficult for me to witness, I knew what to do”
When it comes to where we die, the U.S. has reached a tipping point. Home is
now the most common place of death, according to new
research, and a majority
of Medicare patients are turning to hospice services to help make that
possible. Fewer Americans these days are dying in a hospital, under the close
supervision of doctors and nurses.
Hospice care is usually offered in the home, or sometimes in a nursing home.
Since
the mid-1990s, Medicare has allowed the hospice benefit to cover more types
of diagnoses, and therefore more people. As acceptance grows among physicians
and patients, the numbers continue to balloon — from 1.27 million patients in
2012 to 1.49 million in 2017.
According to the National Hospice and Palliative Care Association, hospice
is now a $19 billion industry, almost entirely funded by taxpayers. But as the
business has grown, so has the burden on families, who are often the ones
providing most of the care. For example, one intimate task in particular —
trying to get her mom’s bowels moving — changed Joy Johnston’s view of what
hospice really means. Constipation plagues many dying patients.
“It’s ironically called the ‘comfort care kit’ that you get with home
hospice. They include suppositories, and so I had to do that,” she said. “That
was the lowest point. And I’m sure it was the lowest point for my mother as
well. And it didn’t work.”
Hospice agencies primarily serve in an advisory role and from a distance,
even in the final, intense days when family caregivers, or home nurses they’ve
hired, must continually adjust morphine doses or deal with typical end-of-life
symptoms, such as bleeding or breathing trouble. Those decisive moments can be
scary for the family, said Dr.
Joan Teno, a physician and leading hospice researcher at Oregon Health and
Science University.
“Imagine if you’re the caregiver, and that you’re in the house,” Teno said.
“It’s in the middle of the night, 2 o’clock in the morning, and all of a
sudden, your family member has a grand mal seizure.”
That’s exactly what happened with Teno’s mother.
“While it was difficult for me to witness, I knew what to do,” she said.
In contrast, Teno said, in her father’s final hours, he was admitted to a
hospice residence.
Such residences often resemble a nursing home, with private rooms where
family and friends can come and go and with round-the-clock medical attention
just down the hall.
Teno called the residence experience of hospice a “godsend.” But an
inpatient facility is rarely an option, she said. Patients have to be in bad
shape for Medicare to pay the higher inpatient rate that hospice residences
charge. And by the time such patients reach their final days, it’s often too
much trouble for them and the family to move.
Hospice care is a lucrative business. It is now the most
profitable type of health care service that Medicare pays for. According to
Medicare data, for-profit hospice agencies now outnumber the nonprofits that
pioneered the service in the 1970s. But agencies that need to generate profits
for investors aren’t building dedicated hospice units or residences, in general
— mostly because such facilities aren’t profitable enough.
Joe Shega is chief medical officer at the for-profit VITAS Healthcare, the
largest hospice company in the U.S. He insists it is the patients’ wishes, not
a corporate desire to make more money, that drives his firm’s business model.
“Our focus is on what patients want, and 85 to 90% want to be at home,”
Shega said. “So, our focus is building programs that help them be there.”
For many families, making hospice work at home means hiring extra help.
“I Guess I’ve Just Accepted What’s Available“
On the day I visit her home outside Nashville, hospice patient Jean
McCasland is at the kitchen table refusing to eat a spoonful of peach yogurt.
Each morning, nurse’s aide Karrie Velez pulverizes McCasland’s medications in a
pill crusher and mixes them into her breakfast yogurt.
“If you don’t, she will just spit them out,” Velez said.
Like a growing
share of hospice patients, McCasland has dementia. She needs a service that
hospice rarely provides — a one-on-one health attendant for several hours, so
the regular family caregiver can get a break each day. When Velez is not
around, John McCasland — Jean’s husband of nearly 50 years — is the person in
charge at home.
“I have said from the beginning that was my intention, that she would be at
home through the duration, as long as I was able,” John said.
But what hospice provided wasn’t enough help. So he has had to drain the
couple’s retirement accounts to hire Velez, a private caregiver, out-of-pocket.
Hospice agencies usually bring in a hospital bed, an oxygen machine or a
wheelchair — whatever equipment is needed. Prescriptions show up at the house
for pain and anxiety. But hands-on help is scarce. According to Medicare,
hospice benefits can include home health aides and homemaker services. But in
practice, that in-person help is often limited to a couple of baths a week.
Medicare data reveals that, on average, a nurse or aide is only in the
patient’s home 30 minutes, or so, per day.
Jean McCasland’s husband hasn’t complained. “I guess I’ve just accepted
what’s available and not really thought beyond what could be,” he said.
“Because this is what they say they do.”
Families often don’t consider whether they’re getting their money’s worth
because they’re not paying for hospice services directly: Medicare gets the
bills. John keeps his monthly statements from Medicare organized in a
three-ring binder, but he had never noticed that his agency charges nearly $200
a day, whether there is a health provider in the home that day or not.
That daily reimbursement covers equipment rentals and a 24-hour hotline that
lets patients or family members consult a nurse as needed; John said it gives
him peace of mind that help is a phone call away. “There’s a sense of comfort
in knowing that they are keeping an eye on her,” he said.
The rate that hospice charges Medicare drops a bit after the patient’s first
two months on the benefit. After reviewing his paperwork, John realized
Medicare paid the hospice agency $60,000 in the first 12 months Jean was on
hospice.
Was the care his wife got worth that?
“When you consider the amount of money that’s involved, perhaps they would
provide somebody around the clock,” he said.
Sue Riggle is the administrator for the McCaslands’ hospice agency and said
she understands how much help patients with dementia need. Her company is a small
for-profit business called Adoration; she said the agency can’t provide more
services than what Medicare pays for.
“I think everybody wishes we could provide the sitter-service part of it,”
said Riggle. “But it’s not something that is covered by hospices.”
I checked in with John and Velez (Jean’s longtime private caregiver) this
winter. The two were by Jean’s side — and had been there for several days
straight — when she died in October. The hospice nurse showed up only
afterward, to officially document the death.
This experience of family caregivers is typical but often unexpected.
“It’s A Burden I Lovingly Did“
“It does take a toll” on families, said Katherine
Ornstein, an associate professor of geriatrics and palliative medicine at
Mount Sinai Hospital in New York, who studies
what typically happens in the last years of patients’ lives. The increasing
burden on loved ones — especially spouses — is reaching a breaking point for
many people, her research shows. This particular type of stress has even been
given a name: caregiver
syndrome.
“Our long-term-care system in this country is really using families — unpaid
family members,” she said. “That’s our situation.”
A few high-profile advocates have even started
questioning whether hospice is
right for everybody. For some who have gone through home hospice with a loved
one, the difficult experience has led them to want something else for
themselves.
Social worker Coneigh Sea has a portrait of her husband that sits in the
entryway of her home in Murfreesboro, Tennessee. He died of prostate cancer in
their bedroom in 1993. Enough time has passed since then that the mental fog
she experienced while managing his medication and bodily fluids — mostly by
herself — has cleared, she said.
But it was a burden.
“For me to say that — there’s that guilt,” she said. “But I know better. It
was a burden that I lovingly did.”
She doesn’t regret the experience but said it is not one she wishes for her
own grown children. She recently sat them down, she said, to make sure they
handle her death differently.
“I told my family, if there is such a thing, I will come back and I will
haunt you,” she said with a laugh. “Don’t you do that.”
Sea’s family may have limited options. Sidestepping home hospice typically
means paying for a pricey nursing home or dying with the cost and potential
chaos of a hospital — which is precisely what hospice care was set up to avoid.
As researchers in the field look to the future, they are calling for more
palliative care, not less — and, at the same time, they are advocating for more
support for the spouses, family members and friends tasked with caring for the
patient.
“We really have to expand — in general — our approach to supporting
caregivers,” Ornstein said, noting that some countries outside the U.S. pay for
a wider range and longer duration of home health services.
“I think what we really need to do is be broadening the support that
individuals and families can have as they’re caring for individuals throughout
the course of serious illness,” Ornstein said.
“And I think that probably speaks to the expansion of palliative care, in
general.”
This story is part of a partnership that includes Nashville Public Radio, NPR and Kaiser Health
News.
Republished courtesy of Kaiser
Health News, a nonprofit news service covering health issues. It is
an editorially independent program of the Kaiser Family Foundation, which is
not affiliated with Kaiser Permanente.
