Read Caregiving Policy Digest on a webpage.

“The last time Alexandra Gunnison saw her father, in early March, the coronavirus was in the early, smoldering stages of its wildfire spread across the country. Soon afterward, his nursing home in the suburbs of Washington, D.C., was closed to visitors. Not long after that, her father, Dana Gunnison, 75, was confined to his room, along with all other residents. She’s now one of many who are wondering when, or whether, they will see their elderly loved ones again, as recommendations of social distancing and temporary retirement-home visitor bans are stretching into indefinite periods of separation. A complicating factor is: For the elderly, lengthy periods of isolation to protect them from the virus could be a cure worse than the disease.”

— Samantha Melamed, Philadelphia Inquirer

 

“If I were to do something different, I would have a nursing home that had enough staff around-the-clock, around all the time,” he said. “I would have a nursing home where everyone had private rooms. I would have a nursing home where there was greater access to the outdoors. In other words, I would have a nursing home funded by a society that puts more emphasis on treating our elders the way they should be treated.”

—Laura Vozzella, The Washington Post

(quoting the medical director at Richmond, Virginia’s Canterbury Rehabilitation &

Healthcare Center where 148 residents became infected with coronavirus and 40 died)

Just a few months ago Americans were getting ready for March madness, umpires’ summons to “play ball,” and myriad festivals, Broadway openings, spring breaks and, not least of all, high school and college graduations. Then, in the proverbial blink of an eye, the world upended as an invader invisible to the human eye managed to blindside mankind.

 

The images of the coronavirus devastation are many but surely none more poignant than the photo of a nursing home resident trying to connect with her daughter through a nursing home window in Washington state. Such heartrending episodes have become routine. For family caregivers who have previously borne such enormous burdens, the added stress of being unable to provide comfort and hands-on assistance to loved ones makes this crisis especially cruel.

IN THIS SECTION

COVID-19 ravages nursing homes

For families the responses pertaining to health and caregiving center on the daily tragedies occurring in sealed off care facilities. “It was clear from almost the outset,” writes Long-Term Care Community Coalition Executive Director Richard Mollot, “that the elderly and frail were in the greatest danger from COVID-19. And it was clear to anyone familiar with American nursing homes that they would not be up to the task of protecting their older and infirm residents." As of April 28, Mollot writes, “COVID-19 has killed over 10,000 residents and staff members in nursing homes in 23 states that report fatality data, representing about 27 percent of the COVID-19 deaths in those states, according to the Kaiser Family Foundation. The weaknesses in patient care and oversight at nursing homes that made those deaths more likely were longstanding, widespread and well known. There are 1.3 million people in the country’s roughly 15,000 nursing homes. One-third of Medicare beneficiaries admitted to homes suffer harm within about two weeks of entry, according to a 2014 report from the federal Office of Inspector General. These are the short-term residents, usually for rehabilitation services, for whom homes are paid the most and who are typically most able to articulate their concerns if something is wrong. Where does that leave a majority of residents who are there long-term, most of whom are older, frail and cognitively impaired? These existing problems intensify the risk that residents will suffer and die not only from COVID-19, but also from the erosion of care the pandemic is causing, increasing neglect and abuse in a system that on a good day too often failed to fulfill its duties. In New Jersey, an anonymous tip led the authorities to a nursing home that was storing corpses in a shed. At least 29 of its residents have died from COVID-19 and many more residents and staff members have been infected. Unsurprisingly, this for-profit nursing home has a history of low staffing and citations for substandard infection control. In a Houston-area nursing home, more than 80 residents and staff members have tested positive for the coronavirus. This home also is understaffed and has close to four times the number of substantiated claims than the national average. The tragedy is that government standards for safety and care at homes certified under Medicaid or Medicare (a large majority) are strong. If enforcement of those standards had not been so lax, the devastation we have seen in nursing homes could have been mitigated.

CMS moves to address crisis

District Court hands Medicare beneficiaries partial right to appeal hospital ‘observation stay’ decisions

As noted above, a significant element of the emergency CMS initiatives is the suspension of the three-day inpatient requirement for Medicare SNF coverage. The action temporarily moots the long-simmering concerns over the extent to which “observation stay” days in lieu of admission were improperly restricting access to post-acute care. Absent the impact of the coronavirus, beneficiaries had earlier gained some measure of relief in the form of a U.S. District Court decision — nearly 10 years in the making — that beneficiaries whose status is changed from inpatient to observation by their hospital are deprived of their property interest in Medicare Part A coverage. The court, CMA reported, “ordered the Secretary to provide these beneficiaries timely notice of their procedural rights and to allow them to appeal for Medicare Part A coverage of their hospital stays. The court limited its holding to beneficiaries who are changed from inpatient status to observation status in the hospital. In other words, the decision does not apply to beneficiaries who are in observation status for their entire hospitalization, or who are changed from observation to inpatient status. This was based on Judge Michael Shea’s view that only changes from inpatient to observation can be attributed to the application of government rules. Nevertheless, Judge Shea did leave open the possibility of extending appeal rights to a larger group of beneficiaries, determining that ‘the Secretary may provide greater procedural protections than the ones described above, and may provide these protections to a broader class of beneficiaries, provided that the due process rights of the class members are fully protected as set forth above.’ While appeal rights for beneficiaries in observation status are critical and may provide relief for the beneficiaries included in the court’s decision, as long as observation status continues to block access to medically necessary SNF care, more policy advocacy is needed. We continue to ask Congress to pass the Improving Access to Medicare Coverage Act (H.R. 1682/S.753), which would count all time spent in the hospital for purposes of satisfying the three-day inpatient hospital stay requirement for SNF coverage.”

Justice in Aging spearheads push for expanded federal relief efforts

While welcoming the congressional and White House’s massive fiscal and regulatory responses to the pandemic, advocacy groups have mobilized to push for a number of additional measures to protect the health and economic security of older and poor adults. Taking a broad look at the three major COVID-19 acts — the Coronavirus Preparedness and Response Act (H.R. 6074), signed into law March 6, 2020, the Families First Coronavirus Response Act (H.R. 6201), signed into law on March 18, and the CARES Act (H.R. 748) signed into law March 27 — Justice in Aging is urging action on further financial relief, including extension of paid family leave to all family caregivers, increased Medicare and Medicaid appropriations, greater access to HCBS, expanded Medicare enrollment periods, increased access to food assistance and strengthened communication in nursing facilities.

ACL issues $1billion in grants to mitigate pandemic

Quick to utilize the new resources made available by the CARES Act, the Administration for Community Living (ACL) has announced nearly $1 billion in grants to help meet the needs of older adults and people with disabilities, including funding home-delivered meals, care services in the home, respite care and other support to families and caregivers, including information about and referral to supportive services. ACL is continuously updating its website with information on all aspects of the agency’s COVID-related activities.

IN THIS SECTION

AARP assesses family caregiver role in MLTSS

AARP has published a research report detailing the extent to which state managed Medicaid long-term services and supports (MLTSS) delivery systems have contractually recognized the role of family caregivers in utilizing MLTSS programs. Nearly all state programs, the report finds, “include family caregivers in service planning and care coordination (upon the member’s consent) and provide some services and supports (such as respite care or caregiver education and training) targeted to members’ family caregivers; they also include family caregivers in their quality assessment and performance improvement (QAPI) programs and on member advisory committees." A minority of MLTSS programs assess (or reassess) the well-being and support needs of their members’ family caregivers, or allow for family caregivers to be paid as a provider in consumer-directed models of care. Based on the findings, the report recommends: 1) contract language for MLTSS programs should clarify that a comprehensive assessment of the member includes questions directly asked of family caregivers about their own health and well-being, potential strain from juggling a paying job and caregiving, and any services and supports that they may need to be better prepared for their caregiving role; 2) The Centers for Medicare & Medicaid Services should provide guidance to states on promising practices in developing and administering family caregiver assessment tools in MLTSS programs; and 3) all state MLTSS programs should provide ample and meaningful opportunity, including but not limited to member advisory committees, for family caregivers to have a voice in the program to improve care delivery, especially if family caregivers are to be part of the care team.

New report from PHI addresses long-term care system’s failure to improve direct care jobs

From PHI comes a new report, We Can Do Better: How Our Broken Long-Term Care System Undermines Care, that portrays a fractured and scattered long-term care system failing to improve direct care jobs. The report, PHI states, “describes both the shortfalls in long-term care financing and the seismic shifts in the long-term care landscape. ‘The COVID-19 crisis has exposed and heightened the many flaws in our health and long-term care systems, including the barriers facing direct care workers and long-term care providers,’ said Jodi M. Sturgeon, president of PHI, a national research and consulting organization focusing on the direct care workforce." We Can Do Better offers two strategies for transforming long-term care and direct care jobs. “The first strategy is to reform the long-term care financing system so that the direct care workforce is strengthened and sustained, and consumers do not become impoverished when accessing care. The second strategy is to rethink how the long-term care sector is organized and regulated — in order to align workforce-related policies and create better workforce standards.”

NAM hosts online panel on care interventions affecting dementia sufferers and their caregivers

While the pandemic occupies most public discourse, other important health matters have not been totally ignored. Utilizing the tool of Internet-enabled virtual meetings, the National Academy of Medicine hosted a wide-ranging discussion on the state of evidence on care interventions supporting individuals with dementia and their caregivers. The major focus of the virtual meeting was a draft AHRQ-funded review of the evidence by the Minnesota E-based Practice Center. Event materials are available here.

CDC issues call for Alzheimer’s Centers of Excellence applications

In a related development the Centers for Disease for Control (CDC) is soliciting applications for establishment of Public Health Centers of Excellence authorized by the Bold Infrastructure for Alzheimer’s Act (P.L. 115-406). The deadline for applications is May 26, 2020. Complete details and background information are available here.

IN THIS SECTION

Ethicists ponder COVID-19 rationing guidelines

“The coronavirus pandemic,” write Ezekiel J. Emanuel, James Phillips, and Govind Persad, “could soon force American physicians to face a tragic challenge — rationing medical care as the number of ill patients overwhelms the supplies, space and staff available in hospitals. The priority should be health care workers; police, firefighters and other emergency workers; and those who keep water, electricity, and other necessary systems functioning, because they can save the lives of others. This primacy should not be abused. For instance, physicians who are not involved in patient care, such as researchers or administrators, should not get special treatment. The goal should be saving as many people as possible, and treating those who are likely to get the greatest benefit from care. This will mean that treatment cannot be allocated on a first-come-first-served basis, as it normally is. Traditionally, patients on ventilators are not displaced for other patients, and later arriving patients can be turned away in a shortage. But in the coronavirus pandemic, business as usual would make patients with a good prognosis if treated suffer for want of treatment, while patients who arrive earlier but have a grave, or even hopeless, prognosis would receive treatment. Under that standard of care, more lives would be lost. In order to best steward the resources available, arriving at the hospital first would no longer guarantee that one would receive lifesaving treatment over another patient. All patients deserve maximum treatment. But the tragedy of scarcity in a pandemic is that some will go without conventional treatment, no matter what. The goal of maximizing benefits and survival for the many should take priority over the goal of treating the patient who happened to get sick and come to the hospital first. Assessing and reassessing who is most likely to survive — as hard as it is — is what ethics requires.”

Hospital rules separate parents and daughter after near fatal brain seizure

“Of all the ways the coronavirus pandemic has undermined the conventions of normal life,” writes The New York Times Katie Hafner, “perhaps none is as cruel as the separation of seriously ill patients and their loved ones, now mandated at hospitals around the world. Thirty-two-year-old Brittany Sanchez, who suffered a seizure and collapsed, eventually found herself at UC San Francisco Medical Center awaiting a major neurological procedure. UCSF was in lockdown, and Sanchez’s parents were not allowed in the hospital. The surgery would be complex and dangerous. ‘There was a reasonable chance she was going to have a problem,’ said Dr. Mitchel Berger, the neurosurgeon who performed the procedure. Dr. Berger tried and failed to persuade his hospital to make an exception to the no-visitor rule. Ms. Sanchez’s father was beside himself. The night before the surgery, he sent Dr. Berger a text. ‘You will have my daughter Brittany’s life in your hands tomorrow,’ he wrote. ‘I expect you to treat her as if she were your own daughter. I will never forgive myself that I was not able to hold her hand through this. Bring her back home to me whole.’ The surgery lasted nearly seven hours. As soon as he was finished, Dr. Berger went to find Brittany's parents, who were waiting outside the hospital. From six feet away, he told them the surgery had gone well, and apologized again for being unable to allow them in. ‘They said they knew it wasn’t my fault, but that I just couldn’t imagine what it would be like to be in that situation,’ he said. ‘And they’re right. I couldn’t imagine it.’”

Some reporters’ vignettes in the time of COVID-19

‘Free’ COVID-19 tests may bring collateral bills

“While extended testing capability for coronavirus is a top item on many to-do lists,” writes The New York Times Elizabeth Rosenthal and Emmarie Huetteman, “there’s an attendant risk aside from whatever the results may show: hidden costs for ER visits and other fees could cause people thousands of dollars. On March 18, President Trump signed a law intended to ensure that Americans could be tested for the coronavirus free, whether they have insurance or not. (He had also announced that health insurers have agreed to waive patient co-payments for treatment of the disease.) But their published policies vary widely and leave countless ways for patients to get stuck. While insurers had indeed agreed to cover the full cost of diagnostic coronavirus tests, that may well prove illusory: The test may be free but a visit to the E.R. to get it is not. Some Senators had wanted to put a provision in the coronavirus bill to protect patients from surprise out-of-network billing — either a broad clause or one specifically related to coronavirus care. Lobbyists for hospitals, physician staffing firms and air ambulances apparently helped ensure it stayed out of the final version. Even without an E.R. visit, there are perilous billing risks. Not all hospitals and labs are capable of performing the test. And what if my in-network doctor sends my coronavirus test to an out-of-network lab? Before the pandemic, the Kaiser Health News-NPR Bill of the Month Project produced a feature about Alexa Kasdan, a New Yorker with a head cold, whose throat swab was sent to an out-of-network lab that billed more than $28,000 for testing. Even patients who do not contract the coronavirus are at a higher risk of incurring a surprise medical bill during the current crisis, when an unrelated health emergency could land you in an unfamiliar, out-of-network hospital because your hospital is too full with COVID-19 patients. The coronavirus bills passed so far — and those on the table — offer inadequate protection from a system primed to bill patients for all kinds of costs. The Families First Coronavirus Response Act says that the test and its related charges will be covered with no patient charge only to the extent that they are related to administering the test or evaluating whether a patient needs it.”

COVID-19: Social distancing and loneliness

From the New Yorker’s Jill Lepore, the last words, on loneliness: “Before modern times, very few human beings lived alone. Slowly, beginning not much more than a century ago, that changed. In the United States, more than one in four people now lives alone; in some parts of the country, especially big cities, that percentage is much higher. You can live alone without being lonely, and you can be lonely without living alone, but the two are closely tied together, which makes lockdowns, sheltering in place, that much harder to bear. Loneliness, it seems unnecessary to say, is terrible for your health. In 2017 and 2018, the former U.S. Surgeon General Vivek H. Murthy declared an ‘epidemic of loneliness,’ and the U.K. appointed a Minister of Loneliness. Living alone, while common in the United States, is more common in many other parts of the world, including Scandinavia, Japan, Germany, France, the U.K., Australia, and Canada, and it’s on the rise in China, India, and Brazil. Living alone works best in nations with strong social supports. It works worst in places like the United States. It is best to have not only an Internet but a social safety net. Then the great, global confinement began: enforced isolation, social distancing, shutdowns, lockdowns, a human but inhuman zoological garden. Zoom is better than nothing. But for how long? And what about the moment your connection crashes: the panic, the last tie severed? It is a terrible, frightful experiment, a test of the human capacity to bear loneliness. Do you pull out your hair? Do you dash yourself against the walls of your cage? Do you, locked inside, thrash and cry and moan? Sometimes, rarely, or never? More today than yesterday?”

Upcoming Online Conversation with Diane E. Meier, MD: Palliative Care on the Front Lines of COVID-19

▲

Click to download PDF flyer to print or share via email

Please join us for a free webinar on palliative care and COVID-19 on Thursday, May 14.

Dr. Diane E. Meier, CEO, Center to Advance Palliative Care Icahn School of Medicine at Mount Sinai, NYC, will talk about medical decision-making for those in palliative care, how to better communicate with health professionals at this time, and how COVID-19 has shaped future palliative care recommendations.

This webinar will be moderated by Kathleen Kelly, MPA, executive director of Family Caregiver Alliance (caregiver.org).

When: Thursday, May, 14 | 11 a.m. to 12 noon (PT); 2 to 3 p.m. (ET)

Where: ONLINE

Register: Click here

Free Online Resource Helps Organizations that Support Dementia Caregivers

Newly launched  Best Practice Caregiving (BPC) is web-based database developed for organizations that serve family and friend caregivers of those living with dementia. With more than 40 proven, vetted dementia caregiving programs, BPC is a rich resource for organizations looking to identify, compare and adopt best-fit programs.

 

Read how one BPC program at UCLA has improved the lives of its more than 2,000 program participants  here  and  here . And don’t miss this round-up of  12 BPC programs  that can be delivered remotely during these times of quarantine.

Best Practice Caregiving is a collaboration between FCA,  Benjamin Rose Institute on Aging, and the The Gerontological Society of America, and was funded by The John A. Hartford Foundation , Archstone Foundation and RFF Foundation for Aging .

To learn more about this exciting new resource, visit  bpc.caregiver.org and check out a recording of a webinar featuring leaders from FCA, Benjamin Rose Institute on Aging and The John A. Hartford Foundation.  Click here. Please note that registration is required to view the recording.

Follow Family Caregiver Alliance / National Center on Caregiving @CaregiverAlly

and Executive Director Kathleen Kelly @KKellyFCA.

Help support FCA/NCC’s continuing advocacy efforts today with a donation through Network for Good (or by check) by clicking here .

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FCA's Connections e-newsletter focuses on issues and information important to family caregivers. The newsletter regularly covers tips, articles, and helpful advice that can assist families with the numerous daily care tasks that caregiving for loved ones presents—including the often overlooked “caring for yourself.” While much of the content can prove helpful to caregivers nationwide, the events included are local to the six-county region of FCA’s Bay Area Caregiver Resource Center.

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CREDITS



Editor: Alan K. Kaplan, (attorney and health policy consultant)

Contributor: Kathleen Kelly (executive director)

Layout: Francesca Pera (communications specialist)

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