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healthcare

    THE YEAR IN HEALTH

    The Problems in the Health-Care System Are Epidemic

    Weak systems become weaker when tested, as they were in 2021

    By

    What if you don’t have Covid — but you still need a doctor?

    This question became more urgent in 2021, when many people moved to the Outer Cape to escape the cities, but few of them were home health aides, nurses, or doctors. There is a critical shortage of all of them right now.

    The workers who keep the elderly out of nursing homes are mostly women. Home health work is “not highly valued or well paid,” Geovana Pinheiro, a certified nursing assistant, said in October.

    Most clients pay private home care agencies $30 to $35 per hour; but the caregiver takes home only half of that. Working 40 hours to bring home $400 a week after taxes isn’t practical on Cape Cod, Pinheiro said. Some of her colleagues have left the field to take higher paying positions where they can earn $17.50 an hour — like at Stop & Shop.

    Meanwhile, patients of all ages are having a hard time getting a doctor. Outer Cape Health Services, the only provider on the Outer Cape, is inundated by a combination of new people moving to the area and retiring mid-Cape doctors whose entire panel of patients — hundreds at a time — are showing up at OCHS’s door.

    New patients have to wait six months to see a doctor, CEO Patricia Nadle told us in November.

    Weak systems become weaker when tested. The pandemic has further challenged a struggling mental health and addiction treatment system. In September, I interviewed Kim Powers, a longtime harm reduction specialist, who was fired from the AIDS Support Group of Cape Cod. She said she and the agency had significant disagreements over how to do keep drug users as safe as possible. ASGCC declined to comment.

    Powers now drives around with clean needles, first-aid kits, fentanyl test strips, and other supplies to meet drug addicts where they are, which is often alone in their homes or in homeless camps. Isolation and fentanyl are a deadly combination.

    Through Sept. 2021, the state Dept. of Public Health recorded 1,613 opioid overdose deaths (confirmed and estimated). That is 21 more deaths than in the first nine months of 2020, which had registered a 5-percent overdose death increase from the same period in 2019.

    Opioid addiction became an epidemic because of the fraudulent marketing and overprescribing of painkillers such as oxycodone beginning in 1995. Drug companies and distributors have been sued, and Massachusetts is poised to receive hundreds of millions of dollars from litigation settlements with Big Pharma.

    The money may bring a sea change to addiction treatment.

    “We will be looking at people like Kim Powers to help us think it through” and find new ways to attack the problem, said Dr. Alexander Wally of Boston Medical Center.

    With so much death of late, it is hard to find a silver lining. But maybe pulling death away from the health-care business offers a ray of light.

    Since 2015, Dawn Walsh has been leading death cafés and advocating for green burials. In 2019, she founded the Lily House, a nonmedical, volunteer-run nonprofit where residents can die in a hospice house with 24-hour care but without the institutional coldness of a nursing home. Walsh formed a board of directors and obtained nonprofit status but did not have a house. That is, until she met Sandra Wonders.

    Wonders, of Wellfleet, spent 25 years after retirement from the state Dept. of Developmental Services as an ombudsman at nursing homes, and she knew she did not want to die in one. Before Wonders died at home on March 11 of brain cancer, she donated her four-bedroom house to become the first Lily House.

    Wonders “felt an obligation to give to other people what she was able to experience,” said her niece, Michelle Ouellette. “She was the definition of the word ‘altruistic.’ ”

    HEALTH CARE

    Need for Rooms at Cape Cod Hospital Exceeds Capacity

    Patients face difficult choices about elective surgeries

    By

    HYANNIS — Cape Cod Hospital has been dealing with a triple threat: a recent swell in incoming Covid-19 patients, a backlog of inpatient discharges, and a pandemic-driven staffing shortage.

    The fact that these challenges are faced by hospitals across the state prompted the Mass. Dept. of Public Health (DPH) on Dec. 15 to advise facilities to cut back on nonessential elective procedures by half. But last week, when Cape Cod Hospital’s inpatient population swelled past its maximum capacity, officials here opted to cancel elective surgeries altogether on Dec. 16 and 17.

    Over the weekend, patient volume dipped, said Patrick Kane, senior vice president of communications for Cape Cod Healthcare, which owns the hospital, in an email. “All cases are back on the books for this week,” he wrote on Monday, Dec. 20.

    The next day, however, the statewide swell in Covid-19 cases pushed the DPH to update its strategy. Effective Dec. 27, “all hospitals are directed to postpone or cancel all nonessential elective procedures likely to result in inpatient admission in order to maintain and increase inpatient capacity,” said Gov. Charlie Baker at a Dec. 21 press conference.

    The hospital on Tuesday would not confirm whether another round of cancelations was slated post-Dec. 27. Hospital officials were “digesting” the new state guidelines, according to Dr. William Agel, the chief medical officer. “But we’ve been dealing with this for 21 months,” he added. “We’ve gotten pretty good at adjusting our schedules accordingly.”

    The hospital uses a scoring system that ranks cases based on the level of attention each one is likely to need from staff. Urgent procedures, like the removal of a diseased gall bladder or a cancer surgery, would fall in the “nonelective” category. Certain cosmetic procedures and joint replacements, by contrast, verge more on “elective” and so are more likely to be delayed.

    In between, there are cases that don’t fit neatly into either category, such as neurosurgery procedures for chronic back pain.

    “It depends on the level of discomfort and the level of disability the person has,” Agel told the Independent. In these cases, he said, patients and their physicians need to discuss whether alternatives to surgical intervention, like continuing physical therapy, could be appropriate in the interim.

    “It’s hard to tell someone that their pain is ‘elective,’ ” Agel said. “It requires a frank and honest conversation between the surgeon and the patient. Some folks have been waiting a while to begin with, so they’re usually a little disappointed because they’ve made some preparations. But our patients understand we’re in the middle of a pandemic.”

    Exceeding Capacity

    The Cape Cod Times reported last Friday that Cape Cod hospital had admitted 20 patients more than the 259 beds prescribed by its license, placing these people in surge areas. Meanwhile, Falmouth Hospital, with 95 beds, was operating at 85 percent capacity.

    While the surge in Covid-19 cases has added new patients to Cape Cod Hospital’s population — as of Tuesday, there were 33 Covid-19 patients in the hospital, two of whom were in the ICU —the facility has also been managing the care of numerous non-Covid-19 patients needing longer stays before being discharged.

    “In terms of what kinds of illnesses we’ve been seeing, it’s been acutely exacerbated chronic diseases,” explained Agel. “These are people with heart disease who may have put things off. Or people with diabetes who maybe didn’t take care of themselves during the pandemic. And then, there’s also the consequences of prolonged social isolation, like depression.”

    When discharges do occur, some patients need to be transferred to a skilled nursing facility — where they encounter another widespread problem: a health care staffing crisis, driven by the pandemic.

    “With the current labor shortage, those nurses just aren’t available,” Agel said. “So, you have some patients who end up staying in the hospital, just waiting for those nursing facility beds.”

    Mass. Health and Human Services Secretary Marylou Sudders in a Dec. 21 press conference put it this way: “There remains a critical staffing shortage in many jobs and many roles to meet the needs of our patients.”

    With workers nationwide leaving health care, Cape Cod Hospital is grappling with staffing shortages of its own.

    “These are people who don’t want to be exposed or get overrun by 40 or 50 sick patients, so they’ve said, ‘It’s too much. I’m going into another business,’ ” Agel told the Independent. “That’s really what’s hurting us.

    “Last I checked, we were at about 500 openings,” he added, “which is about 10 percent of our workforce.”

    The unfilled positions go beyond the roles of doctors, nurses, and technicians. Cape Cod Hospital has also been searching for people to clean patient rooms, deliver food, work in environmental services, and answer phones at the reception desk.

    “We need everything,” Agel said.

    In the Emergency Room

    Most hospitals, when overwhelmed, go on diversion, directing ambulances to ferry patients to the next closest hospital. Cape Cod Hospital can’t fall back on that option.

    “There’s really nowhere to divert to,” said Mary Johnson, who has served as the hospital’s associate vice president of nursing and emergency services since 2020. “We just use our triage process, and we’ve opened up other areas of the hospital to move admitted patients.”

    Johnson aims to get patients who need inpatient care upstairs within four hours following an initial screening in the emergency room. On Monday, Dec. 20, the average wait was 6½ hours.

    “Over the last few months, we definitely haven’t been able to move patients through the system as quickly,” Johnson said. “We’re having to use hallway spaces during peak times to see patients.”

    For the E.R. staff, a busy hospital means double shifts in personal protective equipment, plus overtime. “Being a nurse, in particular, is not a job — it’s a calling,” Agel said. “The large majority of the staff has said, ‘You know, we’re the safety net hospital for this community.’ They’ve stepped up in ways that put their families’ lives in danger.”

    In the midst of crisis, the E.R. has held steady. “We’re a really strong, great team,” Johnson said. “We’re like a family, so we support each other.” If family matters crop up, coworkers offer to pick up extra shifts. “Some registered nurses who moved to administration have come down to help in times of need,” Johnson added.

    Looking Ahead

    “There’s no question the next few weeks will be enormously difficult for our health care community,” Gov. Baker said at his Dec. 21 press conference.

    To support health care workers amid the state’s recent rise in cases, Baker, as of that day, activated 500 members of the Mass. National Guard. Of these, 300 people will be deployed to 55 acute care hospitals and 12 ambulance service providers.

    Some Guard members will drive ambulances and transfer patients between hospitals and nursing homes; others will commandeer wheelchairs and stretchers, ferrying patients between the E.R., X-ray rooms, and the inpatient floor. Other roles include providing security support, delivering meals, and observing patients who may pose a risk to themselves.

    The remaining 200 Guard members will be providing Covid-19 testing support or administrative support for the deployment or standing by until needed.

    This week, the Guard members are undergoing training, and by Monday, Dec. 27, they will be dispatched to their assigned locations. Cape Cod Hospital does not yet have plans to use National Guard troops at this time, according to Agel.

    PRIMARY CARE

    Outer Cape Lives in Health-Care Limbo

    New patients wait six months for an appointment at OCHS

    By

    Jenny Muschinske and her husband moved from New York to Wellfleet in March 2020. Then, she got pregnant. Suddenly, finding a local doctor became urgent.

    She had been “seeing” her New Jersey doctor via telehealth appointments, but now she needed an obstetrician-gynecologist, and, within nine months, would need a pediatrician. Everyone told her to call Outer Cape Health Services (OCHS).

    “No one from Outer Cape even picked up the phone,” she said. “I left messages and they went unreturned.”

    Muschinske ended up finding an obstetrician-gynecologist in Sandwich and a pediatrician for her son, Milo, at Briarpatch Pediatrics in Yarmouth Port.

    Wellfleet resident Jenny Muschinske and her son, Milo. They see doctors in New Jersey, Yarmouth Port, and Sandwich. (Photo Marcia Geier)

    Like a half dozen other residents interviewed for this story, Muschinske had discovered that OCHS, the only health-care provider from Eastham to Provincetown, has been overwhelmed by the demand for medical services. Its 200 staff members (including 20 primary care doctors and physician assistants) who work in the three OCHS clinics in Provincetown, Wellfleet, and Harwich are inundated. Patricia Nadle, the chief executive officer of the health center, said new patients have to wait six months to see a doctor — though OCHS tries to accommodate people with urgent issues within 24 hours.

    Nadle said she would like to hire four more doctors or physician assistants and about 10 more staff to support them, including nurses, medical assistants, billing clerks, and people to answer the phones.

    “We cannot keep up with hiring people who answer our telephones,” Nadle said. “Our phones are ringing off the hook. Candidates don’t show up for the interviews — or for their first day.”

    Muschinske’s and Nadle’s dilemma is part of a national problem: not enough medical students want to become primary care physicians (PCPs). On Cape Cod, the problem is compounded by the scarcity and high price of housing and by the region’s remoteness.

    Even though a PCP earns about $200,000 a year, dermatologists, cardiologists, and other specialists make double that, Nadle said, and they can keep normal office hours. The broken U.S. health-care system rewards the episodic treatment of illness rather than preventing illness.

    Primary-care doctors who do “checkups” deal in prevention. But the system doesn’t pay for prevention, so it is both inefficient and bad for patients, said Theodore Calianos, medical director of Cape Cod Healthcare’s Medical Affiliates of Cape Cod. The U.S. is “number one in health-care costs, but not in quality,” he said. A 2014 ranking of overall health-care quality in 11 wealthy nations by the Commonwealth Fund found the U.S. dead last.

    Healthcare rankings among 11 countries found the U.S. ranked last in terms of quality, access, and infant mortality. (Courtesy Commonwealth Fund)

    That systemic failure is now colliding with demographic trends. Older primary-care doctors are retiring in droves, particularly on the Cape, where, Nadle said, doctors are turning all their patients over to OCHS.

    When Provincetown’s only independent doctor, Brian O’Malley, retired in 2017, most of his 400 patients turned up in Outer Cape Health’s waiting room, he said.

    Two or three other doctors have recently closed their practices, Nadle said, sending 800 to 1,500 patients to OCHS.

    There is about to be one more. Dr. Kim Mead-Walters has worked at Nauset Family Practice in Orleans for 26 years, but she is leaving in January to run the nonprofit Sharing Kindness, which she founded in 2018. It provides grief counseling. She’s the third provider to leave Nauset Family Practice in two years.

    Mead-Walters said her office fields a dozen calls a day from people hoping to find a primary-care doctor. “Right now, we are not taking any new patients at all,” she said. “We don’t even keep a wait list.”

    New Patients in Limbo

    This is not news for recent arrivals on the Outer Cape. The pandemic has made the health-care provider crisis much worse.

    “Post-Covid, the demand for primary care is off the charts,” said Karen Gardner, CEO of the Community Health Center of Cape Cod. “People have moved to the Cape more permanently and they want primary care.” The wait to become a new patient at Gardner’s Mashpee clinic is two months.

    U.S. per capita healthcare costs twice the average of other wealthy countries. (Courtesy Peter G. Peterson Foundation, 2020)

    Mark Regan, 65, who moved from New York to Eastham with his partner in June, found himself in health-care limbo. Blue Cross informed him that he would be dropped from his Medicare Advantage plan at the end of the month. By July, he had switched to Tufts Health, which urged him to find an OCHS provider. On July 8, he dropped off his information at the Wellfleet clinic. He needed to see a cardiologist, he said, following a “widowmaker” heart attack and a quadruple bypass four years earlier.

    To see a specialist, he needed a referral from a primary care doctor. But weeks passed with no response from OCHS. Regan checked the status of his application and was told they were running behind on paperwork.

    A month later, Regan tried again. A representative told him his case would be bumped up to a supervisor. In mid-August, he received a voicemail from OCHS asking him to call back about an appointment. Regan left a message — but he never got a call back, he said, even after ringing the number daily for the next two weeks.

    “Ultimately, I wound up going to Beth Israel in Sandwich, 45 minutes away,” he said. “They were able to get me into their system in a couple of weeks and schedule an appointment for me — which is coming up next week.”

    Carey Rosen Davidson left New York City for Truro, where she now spends most of her time — save for when she needs medical care. Rather than wait six months for a first appointment at OCHS, she opted to stick with her doctors in New York.

    “It’s easier to drive the six hours and stay in Manhattan for a couple of days,” she said.

    In August, a mammogram detected a mass. Davidson ended up doing the medical marathon from the Cape to Manhattan three times for two sonograms and a biopsy. Appointments happen on weekdays, which meant she had to forego full days of work.

    Covid transplants are not the only ones suffering. Roxanne Cook Hayes grew up in Provincetown. Now in her 70s, she lives year-round in Eastham. Her primary care provider retired in February, so in March, she filled out the forms to transfer her records to OCHS. Silence ensued.

    “I couldn’t get through to them — at all,” she said.

    Hayes needed to see a PCP pronto. She was running low on an arthritis medication prescribed by her rheumatologist, and she needed a PCP to order a refill. Hayes called every day for months, she said. She ran out of medicine. Her rheumatologist got her an 11th-hour refill but told her that couldn’t happen again. A PCP, the specialist said, was supposed to manage the prescription.

    Hayes pressed on with daily calls. Six months after starting the intake process, she was able to see a nurse practitioner in August.

    Truro Town Manager Darrin Tangeman said lack of health-care access is one of three primary reasons professionals resist moving here.

    “Housing, compensation, and health care — that’s the trifecta right there,” said Tangeman, who moved from Colorado in January. His own intake process at OCHS took nine months.

    Recruiting Doctors

    The Cape’s aging population is part of the problem. One provider can care for up to 1,500 patients. But the type of patient matters, said Gerry Desautels, OCHS senior communications officer. Older patients require more appointments. OCHS also puts providers on the front lines for walk-in service, taking up more hours in their days.

    OCHS uses a recruiting agency and advertises constantly for practitioners, Nadle said. Housing is the big challenge; two nurse practitioners in the last year turned down job offers when they couldn’t find places to live, Nadle said.

    The agency would not reveal the salaries offered to the nurses, but the packages often include signing, relocation, and retention bonuses, Desautels said.

    OCHS has one huge advantage as a federally qualified health center: it can offer loan forgiveness for doctors and advanced practitioners. With medical school debt averaging $250,000, the program has been successful in retaining four providers, and they have all stayed for years, Nadle said.

    One is Gretchen Eckel, a physician assistant, who had a personal connection to the Cape and lives in Eastham.

    “It wasn’t what drew me to OCH,” Eckel said. “But it has certainly helped keep me here.”

    Eckel is in the home stretch of paying off her loans. After eight years at OCHS, she is down to 10 percent of her original debt, which was well over $100,000. “I’m eternally grateful for that program, because the way housing prices are now,” she said, “I never would have been able to buy my home, which I did last month.”

    But Eckel also feels the pressure of being part of an understaffed organization. Her panel is up to 1,200 patients, on top of walk-ins and emergencies, she said.

    Gretchen Eckel, a physician assistant at OCHS, examines a young patient. She has had most of her student debt forgiven through the National Health Service Corps, which promotes health work in underserved rural areas. (Photo courtesy OCHS)

    Eckel wishes that her patients could more easily make follow-up appointments — but her schedule is packed. “They have to wait longer to see me again and continue an ongoing conversation,” she said.

    Parents needing checkups or physicals for their kids before school starts are also up against the queue. These young patients are already past intake and in the system, yet “the first available appointment might not be for six weeks,” Eckel said. “And that’s something we want to improve.”

    OCHS relies on donations for 3 to 5 percent of its budget, Nadle said. Should those donations go to buy staff housing?

    “We have thought about that,” Nadle said.

    To shorten the queue, OCHS has paid for two locum tenen nurse practitioners to spend the winter here, starting in January. Temporary staff cost more per hour and don’t solve the long-term problem, but the need is urgent, Desautels said.

    Cape Cod Healthcare plans to open an urgent care center at the former Lobster Claw Restaurant in Orleans in May 2022. President Mike Lauf said it will employ three primary care doctors year-round, and have an urgent care walk-in center from May through October.

    The primary care doctors will absorb the current patients of Cape Cod Healthcare affiliates who have retired, such as Mead-Walters. New patients will be next in line, said Pat Kane, Cape Cod Healthcare’s senior vice president for communications.

    Urgent care offers a third place to go if you cannot see a primary care doctor and you do not want to visit an emergency room. You can walk in without an appointment. The co-pays for urgent care are less than at the emergency room but higher than seeing a PCP, Lauf said.

    But unless your condition is life threatening, PCPs give you better care.

    For instance, with blood pressure problems, an urgent-care or emergency-room doctor can recognize when a patient faces immediate damage. “I’m trained to figure out if this is a hypertensive emergency,” said Anna Sjogren, an ER doctor. “But I’m not trained to manage chronic health issues. I won’t see you in follow-up for a long-term evaluation. I don’t know the individual oral medications for blood pressures as well as the PCP does, especially when it comes to deciding which one makes the most sense to start you on, in the context of your other health problems.”

    “The PCP is the only one who knows the big picture,” O’Malley said. “I don’t expect the specialists to keep up.”

    Overall, the primary care shortage is a national issue that is having dramatic local effects.

    “If the health-care system starts to fall,” said Pat Nadle, “the whole community starts to fold.”

    Staff reporter Paul Benson contributed to this story.

    AGING IN PLACE

    Home Health Care Shortage ‘Critical’ on Outer Cape

    Low wages and lack of workers push the limits

    By

    WELLFLEET — A few years back, when Geovana Pinheiro worked as a certified nursing assistant (CNA) for a client in Wellfleet, she commuted down Cape from Centerville, where she lives. The trip took an hour — when traffic cooperated.

    Supporting newly discharged patients, housebound seniors, and disabled residents, Pinheiro is skilled at the range of duties — from doing laundry to prepping meals to changing diapers — that make up most home health aides’ routines.

    Geovana Pinheiro, 45, has spent two decades as a certified nursing assistant on Cape Cod. It’s work she loves. But she’s not doing it on the Outer Cape anymore. (Photo courtesy Geovana Pinheiro)

    But Pinheiro no longer makes those trips down Route 6. Her expertise is in high demand close to her own home. Driving would only increase her gasoline costs, which she must shoulder herself. Plus, vacation traffic often upended her itinerary, resulting in delays and postponed appointments that in the end affected both her clients and her earnings.

    Pinheiro is not the only home health aide who has turned away from the Outer Cape. The logistical hurdles she faced have discouraged agencies from dispatching aides to the area. Kathleen Catrambone, who owns TLC Home Health Care Services, told the Independent that her company was dialing back on serving the Outer Cape.

    “It’s heartbreaking for us to have a son, or daughter, or spouse on the phone and tell them we can’t provide them what they need,” said Catrambone. “We just don’t have caregivers that live out that way,” she added. In the last month alone, she has turned away a dozen new clients.

    The shortage of home care workers here seems unlikely to go away anytime soon, especially as the population here ages and the need for support rises.

    The big picture, according to the Bureau of Labor Statistics, is this: while the nation’s aging population is projected to continue to drive up demand, some 600,000 home health aide positions per year are projected to remain unfilled between 2020 and 2030.

    The Outer Cape is likely to feel this acutely. About 50 percent of Provincetown’s population is age 60 or older, said Chris Hottle, the town’s Council on Aging director. The state’s average is 23 percent. The aide shortage has already hit a “critical level” here, said Hottle.

    Pay Is a problem

    Pinheiro was drawn to her work after caring for her father when she lived in Brazil. He had Alzheimer’s disease. Pinheiro loves working with her clients and knows high-quality care matters, but the profession, she said, “is not highly valued or well paid.”

    Most clients pay private agencies $30 to $35 per hour; of this amount, the caregiver takes home about half. Working 40 hours to bring home $400 a week after taxes isn’t practical on Cape Cod, Pinheiro said, where “rent, food, everything is so expensive.”

    Some of her colleagues have left the field to take higher paying positions at places like Stop & Shop, where they can earn $17.50 an hour.

    Agencies often hire CNAs part-time, so benefits and overtime are also limited. Delays and cancelations make home care schedules volatile by nature, so caregivers are often forced to work for multiple agencies at the same time to cobble together enough hours to make a living.

    Often home health aides work full-time with one client. But if that client stops needing help or goes to the hospital, suddenly the worker’s schedule falls apart. Having several employers is the only way to be sure you’ll have access to assignments, said Kevin Smith, president of Home Care Aide Council, which represents home care agencies and providers across Massachusetts. “It’s the worst-kept secret in the industry,” Smith said.

    The patchwork system makes it difficult for home health care workers to have stable home lives themselves, especially when it comes to raising a family, Pinheiro said.

    Some agencies on the Outer Cape reported raising wages in the last year to keep up with the growing demand for their services, initiating sign-on bonuses — but while these attract workers, “they aren’t a retention tool,” Smith said.

    Furthermore, to raise wages, agencies must increase fees charged to clients, which are already “incredibly expensive,” said Catrambone of TLC. Even so, she said, with insurance and overhead expenses taken into account, agencies don’t have much of a profit margin.

    Filling the Gap

    Partnering with eight home care agencies, Elder Services of Cape Cod and the Islands connects seniors with homemaking and personal care services. More and more, clients are facing long waits for these services, said Kim Nahas, the nonprofit’s director of clinical services.

    “We have enough agencies,” she said. “It’s just they’re having a difficult time finding workers.” The organization provides services that can help fill in the gap, like meals on wheels, laundry, grocery shopping, an emergency alert button, and social programs.

    As of August, Elder Services of Cape Cod and the Islands had 472 cases of people waiting for service, Kevin Smith said.

    Some agencies aren’t keeping a waiting list at all, said Brianne Smith, who manages the Community Resource Navigator Program at Outer Cape Health Services. “They don’t have available staff, period,” she said.

    While the shortage was increasing before the pandemic, it has now become much worse, Catrambone said, calling the current situation “a crisis.”

    “The government has to step in and give grants, or whatever it may be to get more people to become certified nursing assistants,” she said.

    A potential solution in development at Elder Services is to offer “consumer directed care.” Instead of working with contracted providers, clients can choose a friend, neighbor, child, or sibling to receive the necessary training and be paid an hourly wage to take on the role of a caregiver.

    Steps to increase home care wages are also being taken on the federal level, Hottle said. President Joe Biden’s proposed $400 billion infusion of federal money into the nation’s “care economy” over eight years is one example. The plan could increase home care workers’ wages and benefits no matter where workers happen to live.

    Meanwhile, “Sometimes, seniors have to do without,” said Linda Balch, outreach coordinator at the Wellfleet Council on Aging.

    This past July, Rudelle Falkenberg, a Truro resident, returned home after having hip surgery and for two months benefited from a merry-go-round of check-ins. Twice a week, a visiting nurse took her vitals. A physical therapist swung by frequently, and from time to time an occupational therapist tagged along, surveying the bathroom for slip hazards.

    But what Falkenberg wanted was help with taking a shower. She considered adding a home care aide to the mix, until she found out she’d have to schedule her shower days in advance, and that if things didn’t go seamlessly, she might need to postpone that shower for a week.

    Falkenberg opted to ring up a friend to chaperone her should she need help. Hers was a fortunate case. “We serve a lot of people who are living alone and don’t necessarily have someone they can call to come over twice a week,” said Smith from Outer Cape Health Services.

    Smith’s staff has been trying to fill in the gaps, helping seniors by delivering groceries and prescriptions. “But as navigators, that’s not our function,” she said. The program is meant to arrange for these services, she said, not to perform them.

    ELDER CARE

    Pandemic Journal: An Escape From Isolation

    Fear of dying alone makes one family choose home care

    By

    PROVINCETOWN — Bernice Burchman is 92 and has Stage 4 lung cancer, and yet her son Howard said his mom has been thriving ever since he took her out of a nursing home and brought her home to Center Street.

    Bernice was living at Maplewood, an assisted-living residence in Brewster, where, for a few years, she enjoyed a studio apartment, prepared meals in the dining room, and visits from her sons.

    Those visits ended when the pandemic began, of course, and about three weeks into the shutdown, Howard received a phone call, he said, from Maplewood saying that his mother, a genial “Jewish girl from the Bronx” who has lived with neurological difficulties resulting from heart surgery, had shortness of breath.

    They took her to Cape Cod Hospital, where she was observed and tested for Covid-19 before being sent days later to Liberty Commons in Chatham with a diagnosis: Stage 4 lung cancer.

    Following the isolation protocols to prevent Covid-19 infection, Bernice was quarantined in a room for 14 days, but even after that family and friends were still banned from visiting.

    Every time Howard or his brother called, they were told Bernice was asleep.

    “The nursing home started to put pressure on me to decide if she should be put into hospice,” Howard said. “But how could I make that decision when I couldn’t even see her?”

    Bernice and Howard Burchman in October, months after he took her out of a nursing home, where she was isolated and perhaps drugged to be kept from falling. (Photo courtesy Howard Burchman)

    Howard thinks that, because the nursing home staff classified her as a fall risk and reasoned she would most likely fall getting up to use the bathroom, they drugged her. He said he knows they put in a Foley catheter to drain urine from her bladder. Bernice has never before or since had urinary incontinence, he added, and has never, except for those days at Liberty Commons, slept for long stretches in the day.

    Bill Bogdanovich, president and CEO of Liberty Commons’s parent company, Broad Reach Healthcare, said he couldn’t comment on an individual case, but denied that sedating and catheterizing fall-risk patients is done at the nursing home.

    Appalled, Howard feared that his mother could die alone of pneumonia from lack of movement or a urinary tract infection resulting from the Foley catheter. A 2018 University of Michigan study found that more than half of catheterized hospital patients suffered complications, including urinary infections.

    “I had to get her out,” Howard said.

    It was not an easy decision, given Bernice’s fragile health and Howard’s lack of medical experience. But he moved her to his guest house, the Tucker Inn, where she could at least die with her loved ones around her.

    “I was scared to death,” Howard said.

    With the help of Visiting Nurse Association hospice workers, and of Michelle Smith and Lila Busa, the inn’s devoted live-in staff, who had time on their hands because the guest house was closed, Bernice thrived.

    “She is restored to life — that’s the only expression I can use,” said Howard.

    The Burchmans are lucky. Covid-19 has killed elderly people at high rates, especially those in nursing homes. “People in long-term care facilities make up 8 percent of coronavirus cases, but 45 percent of all Covid-19 deaths,” the Kaiser Family Foundation reported last month.

    The pandemic has also increased elders’ isolation and ripped away an already skimpy safety net.

    “One of things that has happened is that a lot of the support systems that were in place, like adult day-care programs, councils on aging, volunteer organizations like Nauset Neighbors that help out with rides, have all been shuttered,” said Melanie Braverman, co-founder of the Alzheimer’s Family Support Center, which helps families navigate the challenges of dementia.

    The nonprofit’s support groups for caregivers, formerly held in local senior centers or long-term care facilities, are now all online. Currently there are 20 such groups, Braverman said.

    It’s been a challenge to help family members learn to use Zoom and the necessary electronic devices. And it’s still not enough.

    “Isolation is one of the worst symptoms of this disease,” Braverman said. “We are seeing people declining a lot faster.”

    Even before Covid-19, the demands on caregivers were tremendous. Among elderly couples, “co-morbidity” is very high, because the caregivers wear out watching over the spouse who is worse off, Braverman said.

    Linda Groth of Eastham has been caring for her 93-year-old mother, Erika Groth, who has Alzheimer’s disease, for 12 years. During 10 of them, she took her mom to the Eastham Senior Center’s adult day care. For three days a week, from 8:30 a.m. to 2 p.m., her mother had someone to look after her, with music, visits from pets, and other programs. The pandemic canceled adult day care all across the Cape, Braverman said, “and we don’t know if they are coming back. We don’t know what services are going to look like after this.”

    Linda, who is 62, said she and her mom walked out of the senior center on March 13.

    “Friday the 13th, and we’ve never gone back,” said Linda. “We miss it. We had a routine; it was like a family.”

    These days, Linda goes for quick bike rides to get exercise but cannot leave her mom alone for more than 30 minutes.

    “Tomorrow, a woman who works at the senior center is going to help me, because I have to get a tooth pulled,” she said. “That’s my excitement for tomorrow. It’s hard. But it’s worth it, and I’d do it again if I had the choice. She took care of me.”

    A disease like Alzheimer’s can go on for 20 years, so “you’re not figuring out how to die, but how to live with it, and that’s the hard part, because we are not set up as a culture to help people do that,” Braverman said. “When something like this happens, you really see where the weak links in the culture are, and how the system is not set up to be able to manage public health in a direct way.”

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