Nursing Homes Push Dying Patients Into Unnecessary and Hazardous Rehab

An alarming study contends that Skilled Nursing Facilities (SNFs) may be pushing dying patients into unnecessary and potentially harmful high-intensity rehabilitation services. The study suggests that nursing homes may be sacrificing patient preferences and comfort for profit.  The study is another in a long list of reasons to plan to Age in Place.

University of Rochester Medical Center researchers noted that the number of residents receiving “ultra-high” rehab services in New York state increased by 65% during the three-year period ending in 2015. Most of those services were delivered to individuals in the last seven days of their lives, according to the analysis of data from 647 nursing homes in the Empire State that was published in the Journal of the American Medical Directors Association.

“These are often sick and frail patients in whom the risks of intensive levels of rehabilitation actually outweigh the benefits,” Thomas Caprio, M.D, a geriatrician and hospice physician at URMC and co-author of the study, said in a statement. “It can increase the burden of pain and exhaustion experienced by patients and contribute to their suffering.”

Researchers studies residents in the Very High (520 minutes per week) to Ultra-High (720 minutes) groupings of rehab services in the last 30 days of life. Authors speculated that rehab levels for the dying may actually be higher in other states with less regulatory oversight. They also acknowledge that some rehab is needed at the end of life, though more commonly of the low or intermediate variety.

The motive for unnecessary and burdensome rehab is profit. According to the report accompanying the study results, "recent reports from the Office of the Inspector General (OIG), the Centers from Medicare and Medicaid Services, and from popular press suggest that the volume and the intensity of rehabilitation therapy provided to residents in US SNFs may be more extensive than is warranted by the residents' care needs." The OIG report from 2010 found that the proportion of seniors referred to ultrahigh therapy (>720 minutes/wk) increased from 17% to 28% during 2006-2008 while the recipients' age, admitting diagnoses, and proportion of seniors with high functional impairment scores remained largely unchanged. The report also noted that for-profit SNFs were more likely to bill for high-intensity therapy compared to not-for-profits—32% versus 18%, respectively.

A 2015 OIG report showed that SNF billings for higher levels of therapy have continued to increase. Between 2011 and 2013, the percentage of ultrahigh therapy days grew from 49% to 57%, whereas residents' characteristics stayed the same. In 2015, SNFs were reported to make a six times or six hundred percent (600%) higher average daily profit margin from providing ultrahigh compared to low therapy intensity. 

According to the study's author's, "[a]t least as concerning as the evidence suggesting some nursing homes may have exploited the prospective payment system to “optimize their revenues” is the claim by the OIG investigators that SNFs billed for therapy levels that were higher than reasonable or necessary, even among the most vulnerable residents." The OIG cited an example of a hospice patient who “received physical therapy 5 days a week for 5 weeks, even though her medical records indicated that she asked that the therapy be discontinued.” Similarly, a 2016 report appearing in the Wall Street Journal quoted interviews with more than 2 dozen former SNF therapists and rehabilitation directors asserting that “managers often pressure caregivers to reach the 720-minute threshold” (required for ultrahigh therapy billing). 

Although the benefits of rehabilitative therapy in nursing homes are well established, pressures to maximize therapy may be inappropriate or even potentially injurious to some patients and may create obstacles to the provision of palliative and end-of-life (EOL) care in nursing homes.  Numerous previous studies have shown that, despite preferences, many residents are hospitalized in the final weeks of life, and receive burdensome treatments that may have few benefits.  Consider the following:

• Potentially avoidable hospitalizations of nursing home residents: Frequency, causes, and costs. J Am Geriatr Soc. 2010; 58: 627–635;
• Site of death among nursing home residents in the United States: Changing patterns, 2003-2007. J Am Med Dir Assoc. 2013; 14: 741–748;
• Hospitalizations of nursing home residents in the last year of life: Nursing home characteristics and variation in potentially avoidable hospitalizations. J Am Geriatr Soc. 2013; 61: 1900–1908;
• End-of-life transitions among nursing home residents with cognitive issues. N Engl J Med. 2011; 365: 1212–1221.

The resident's quality of care may, in such cases, be horrifically impaired. Nursing homes may actually be reluctant to refer their dying residents to hospice so as not to lose the opportunity to maximize a higher Medicare rate by providing rehab.  In other words, preferences and comfort are sacrifices for profit. This conclusion is at least suggested by two separate studies:

• Dying in U.S. nursing homes with advanced dementia: How does health care use differ for residents with, versus without, end-of-life Medicare skilled nursing facility care?. J Palliat Med. 2012; 15: 43–50;
• Influence of hospice on nursing home residents with advanced dementia who received medicare-skilled nursing facility care near the end of life. J Am Geriatr Soc. 2012; 60: 2035–2041.

In one study, nearly one-third of Medicare beneficiaries who were hospitalized received SNF-level care in the last 6 months of life and 9.2% died while on a SNF benefit.  Researchers argue that although such care may be appropriate for some, the receipt of SNF services at the end of life is likely to prevent many patients from receiving hospice and/or palliative care that may be more consistent with their wishes and care needs. A recent study reporting on staff experiences with palliative care in nursing homes noted that staff's desire to develop and provide quality palliative care services may conflict with the nursing homes' need to maximize the provision of rehabilitative therapies. In the words of a staff member, “[t]he goal is to get comfort measure people in therapy. They [residents] get the therapy; they [facility] get higher payment [reimbursement].”

Providers defended their practices to McKnight's Long Term Care News, noting that there is a deliberate system in place to regulate rehab levels. "When individuals request admission to a nursing home, they typically come with documentation on the type of care required. And once they’re at the facility, they must be able to maintain those levels of therapy," Nancy Leveille, executive director of the Foundation for Quality Care, part of the New York State Health Facilities Association, told McKnight's reporter Marty Stempniak. "If their condition is such that they cannot maintain, then nursing homes are unable to make a claim for those rehab minutes," Leveille explained.  "Plus, a significant sample of high-level rehab patients are then audited on a regular basis by Medicare or Medicaid, to validate that the services were appropriate," she added.

“There are checks and balances on the system and there are people who come in with terminal diagnoses and are trying to get back on their feet to be able to get back home or back to a different level of functioning for themselves for quality of life,” Leveille said. “But even within that, if they can’t meet the requirements of ultra-high rehab or any level of rehab, they can’t be scored on that.”

In other words, because billings are approved, the care is justifiable.

Respite for Family Caregivers

Respite is planned or emergency care provided to a child or adult with special needs in order to provide temporary relief to family caregivers who are caring for that child or adult. 

The ARCH National Respite Network and Resource Center provides useful resources on its website for family caregivers to navigate respite care. ARCH's Nine Steps to Respite for Family Caregivers, provides readers with facts sheets to guide caregivers to getting respite care. 

Each fact sheet is designed to be relevant to distinct caregiving situations, such as military caregivers and family caregivers of individuals with dementia.

Other resources on ARCH's website include the following:

• A Consumer Guide to Respite;
• The National Respite Locator;
• Financial Assistance for Family Caregivers.

The website also is where you can find Charting the LifeCourse Respite materials.  These materials include a Respite guide book, portfolio and other tools designed to help family caregivers caring for anyone of any age or disability and/or those who support them create a plan to access respite services within and outside the formal services system.

The materials provide:

• information on the importance of respite for the well-being of the family caregiver and all family members;
• tools for thinking about and planning for respite; and
• additional resources for finding respite in the community. 

Missouri Family to Family, which is housed within Missouri’s University Center for Excellence in Developmental Disabilities Education, Research and Services (UCEDD) at the University of Missouri–Kansas City Institute for Human Development, in collaboration with the ARCH National Respite Network and Resource Center, developed Charting the LifeCourse Respite materials. 

Aging in Place Seniors Need Additional Assistance

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About 25 million Americans who are aging in place rely on help from other people and devices, such as canes, raised toilets or shower seats, to perform essential daily activities, according to a new study documenting how older adults adapt to their changing physical abilities.  

A substantial number of these seniors, however, do not receive adequate assistance. Nearly sixty percent (60%) of seniors with seriously compromised mobility reported staying inside their homes or apartments instead of getting out of the house. Twenty-five percent (25%) said they often remained in bed. Twenty percent (20%) of older adults who had significant difficulty putting on a shirt or pulling on undergarments or pants. reportedly don't get dressed. Of those who required assistance with toileting issues, almost thirty percent (27.9%) report accidents where they soil themselves.

The study, by researchers from Johns Hopkins University, focuses on how older adults respond to changes in physical function.  Response to physical impairment is poorly understood, and infrequently studies.  The study suggests that about one-third of older adults who age in in place, nearly 13 million seniors, have a substantial need for assistance with daily activities such as bathing, eating, getting dressed, using the toilet, transferring in and out of bed or moving around their homes; about one-third have relatively few needs; and another third get along well on their own with no notable difficulty.

For older adults and their families, the report is a reminder of the need to plan ahead for changing capacities.  It is also a reminder that families and communities may need to be more proactive in identifying and assisting those whose physical needs change.

"The reality is that most of us, as we age, will require help at one point or another," Bruce Chernof, president of the Scan Foundation and chair of the 2013 federal Commission on Long-Term Care, told Judith Graham, author of special report for the Washington Times, and reprinted in an article for the The Berkshire Eagle. Citing Medicare's failure to cover long-term services and supports, which help seniors age in place, he said, "We need to lean in much harder if we want to help seniors thrive at home as long as possible."

Previous reports have examined the need for paid or unpaid help in the older population and the extent to which those needs go unmet. Notably, in 2017, some of the same Johns Hopkins researchers found that forty-two percent (42%) of older adults with probable dementia or difficulty performing daily activities didn't get assistance from family, friends or paid caregivers. Twenty-one percent (21%) of seniors with at least three chronic conditions and high needs lacked any kind of assistance, according to the prior study.

But personal care isn't all that's needed to help older adults remain at home when strength, flexibility, muscle coordination and other physical functions begin to deteriorate. Devices and home modifications can also help people adjust.  Technologies, too, can aid seniors, their families, and communities in providing assistance.

Until this new study, though, it wasn't clear how often older adults use "assistive devices" such as canes, walkers, wheelchairs and scooters for people with difficulties walking,  shower seats, tub seats and grab bars for people who need help bathing, button hooks, reachers, grabbers and specially designed clothes for people who have difficulty dressing,  special utensils designed for people who need assistance eating easier, or raised toilets or toilet seats, portable commodes and disposable pads or undergarments for individuals with toileting issues.

"What we haven't known before is the extent of adjustments that older adults make to manage daily activities," Judith Kasper, a co-author of the study and professor at Johns Hopkins Bloomberg School of Public Health told the Washington Times.

The data comes from a 2015 survey conducted by the National Health and Aging Trends Study, a leading source of information about functioning and disability among adults 65 and older. More than 7,000 seniors filled out surveys in their homes and results were extrapolated to 38.8 million older Americans who live in the community (excluding those who live in nursing homes, assisted-living centers, continuing care retirement communities and other institutions).

Among key findings: Sixty percent (60%)of the seniors surveyed used at least one device, most commonly for bathing, toileting and moving around. Twenty percent (20%) used two or more devices and thirteen percent (13%) also received some kind of personal assistance. Five percent (5%) report difficulty with daily tasks, but didn't have help and hadn't made other adjustments yet. One percent (1%) received assistance only.

As expected, needs multiplied with age, as sixty-three percent (63%) of those 85 and older reported using multiple devices and getting personal assistance, compared with twenty-three percent (23%) of those between ages 65 and 74.

The problem, experts note, is that Medicare doesn't pay for many of these nonmedical services, with some exceptions. As a result, many seniors, especially those at or near the bottom of the income ladder, go without needed assistance, even when they're enrolled in Medicaid. Medicaid community-based services for low-income seniors vary by state and often fall short of actual needs.

A companion report on financial strain experienced by older adults who require long-term services and supports illustrates how marginal are some seniors financial lives. Slightly more than ten percent (10%) of seniors with high needs experienced at least one type of hardship, such as being unable to pay expenses like medical bills or prescriptions (5.9 percent), utilities (4.8 percent) or rent (3.4 percent), or skipping meals (1.8 percent). Some people had multiple difficulties, reflected in and among these statistics.

These kinds of adverse events put older adults' health at risk,  contribute to avoidable hospitalizations, and result in avoidable nursing home placements. Given a growing population of seniors who will need assistance, "I think there's a need for Medicare to rethink how to better support beneficiaries," said Amber Willink, co-author of both studies and an assistant scientist at Johns Hopkins Bloomberg School of Public Health.

That's begun to happen, with the passage last year of the CHRONIC Care Act, which allows Medicare Advantage plans to offer supplemental benefits, such as wheelchair ramps, bathroom grab bars, transportation and personal care to chronically ill members. But it's unclear how robust these benefits will be going forward; this year, plans, which cover 21 million people, aren't offering much. Meanwhile, 39 million people enrolled in traditional Medicare are left out altogether.

Blue Water Vets Win Presumption of Service Connection

The U.S. Court of Appeals for the Federal Circuit has ruled that the presumption of service connection for certain diseases for veterans who served in Vietnam applies to so-called "blue water" veterans - those who served on ships in waterways off the coast of Vietnam, but did not set foot on land.  

In 1991, Congress passed the Agent Orange Act, codified at 38 U.S.C. § 1116, granting a presumption of service connection for certain diseases to veterans who served in the Republic of Vietnam.  Under § 1116(f), such a veteran “shall be presumed to have been exposed during such service to [the] herbicide agent . . . unless there is affirmative evidence to establish that the veteran was not exposed to any such agent during that service.”

In 1993, the Department of Veterans Affairs issued regulations pursuant to § 1116 that stated “‘Service in the Republic of Vietnam’ includes service in the waters offshore and service in other locations if the conditions of service involved duty or visitation in the Republic of Vietnam.” 38 C.F.R. § 3.307(a)(6) (1993) (“Regulation 307”). In 1997 in a General Counsel opinion about a different regulation, the government interpreted Regulation 307 as limiting service “in the Republic of Vietnam,"to service in waters offshore the landmass of the Republic of Vietnam only if the service involved duty or visitation on the landmass, including the inland waterways of the Republic of Vietnam, (“foot-on-land” requirement). Gen. Counsel Prec. 27-97 (July 23, 1997); 62 Fed. Reg. 63,603, 63,604 (Dec. 1, 1997).  

Mr. Procopio served aboard the U.S.S. Intrepid from November 1964 to July 1967. In July 1966, the Intrepid  was deployed in the waters offshore the landmass of the Republic of Vietnam, including its territorial sea.  Mr. Procopio sought entitlement to service connection for diabetes mellitus in October 2006 and for prostate cancer in October 2007, but was denied service connection for both in April 2009 because he could not meet the government’s foot-on-land requirement. 

Diabetes mellitus is listed in the statute under paragraph (2) of § 1116(a), and prostate cancer is listed in the pertinent regulation, 38 C.F.R. § 3.309(e). The Board of Veterans’ Appeals likewise denied him service connection in March 2011 and again in July 2015, finding “[t]he competent and credible evidence of record is against a finding that the Veteran was present on the landmass or the inland waters of Vietnam during service and, therefore, he is not presumed to have been exposed to herbicides, including Agent Orange,” under § 1116. The Veterans Court affirmed.

The U.S. Court of Appeals for the Federal Circuit, however, reversed the lower decisions, ruling in favor of Mr. Procopio:

"Congress has spoken directly to the question of whether those who served in the 12 nautical mile territorial sea of the “Republic of Vietnam” are entitled to § 1116’s presumption if they meet the section’s other requirements. They are. Because “the intent of Congress is clear, that is the end of the matter.” [citation omitted]. Mr. Procopio is entitled to a presumption of service connection for his prostate cancer and diabetes mellitus. Accordingly, we reverse." 

The case is Procopio v. Wilkie, 2017-1821 (Fed. Cir. 2019).

Steven Berenson, wrote an article about this decision on his Veterans Law Prof Blog.  He notes that the National  Law School Veterans Clinics Consortium (NLSVCC) filed an amicus brief in support of the Mr. Procopio's position.

Transport Risk Often Overlooked as Risk of Institutional Long-term Care.

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Among the many risks inherent to institutional care are those associated with transport. The most recent illustration comes as a result of the State of Rhode Island switching to a new Medicaid transportation provider.  

Rhode Island first moved from LogistiCare to Missouri-based Medical Transportation Management on January 1, 2019. According to an article in McKnight's Long-Term Care News, the switch has been a "bumpy ride, literally and figuratively, with a flood of missed appointments, delays and other problems, according to those who testified at a state committee meeting last Thursday."

Advocates warn that, every day, a transport provider has put residents at life-threatening risk.  “Someone is going to die,” former state senator John Tassoni Jr. said bluntly at a recent hearing, according to the Providence Journal.  More than 1,000 complaints have been filed, with many patients missing scheduled chemotherapy, dialysis, methadone treatment or doctor visits. Some local nursing homes leaders have transported residents using personal vehicles as a result of transport failures and deficiencies.

“Frankly, at this point it’s become a fiasco,” said Christopher Ryan, owner and administrator of the 71-bed Pine Grove Health Center nursing facility in Pascoag, RI. “At what point does this end?”

Tassoni, who is now an executive with the Mental Health Leadership Council of Rhode Island, called Medical Transportation Management’s short tenure “38 days of hell.”

In a statement submitted to the committee, the head of MTM apologized and committed to working on the issue, noting that the company is bringing new technology to Rhode Island, and the changeover has proved challenging. The company came under fire in Arkansas for a similar string of missed appointments, McKnight’s reported in January.

This blog has repeatedly highlighted stories illustrating transport risk: 

• Man Transported to SNF But Dropped Off at Wrong Location Found Alive Three Days Later;
• Patient Discharged to Nursing Home 300 Miles Away;
• Ambulance Driver Charged with Homicide in Death of Nursing Home Resident.

Risks inherent to institutional care are among the many reasons that people are employing Aging in Place planning.