New Tool Predicts Life Expectancy of Dementia Patients

According to McKnight's Long-term Care News, nursing homes may soon have access to a newly developed tool that can accurately predict the life expectancy of dementia patients. 

Care providers are well aware of the importance of discussing the future with patients and their families and considering the needs and wishes of patients toward the end of life. Clinical guidelines also recommend incorporating information on patients’ life expectancy into clinical decisions.  Clinicians, however, encounter several barriers in this process. One of the barriers for the incorporation of patient’s life expectancy in clinical decisions is the uncertainty in predicting the actual survival probabilities. Another barrier is the difficulty of discussing prognosis with the patient. 

Researchers believe the tool could help patients and care providers better communicate about the disease and risk of death, and develop future care plans as it progresses. Timely communication about patients’ survival prognosis may enhance advance care planning and shared decision-making in dementia. 

Nearly 48% of residents in nursing homes have a diagnosis Alzheimer’s disease or other dementias, according to data from the Centers for Disease Control and Prevention.  “In those cases, a tool like this can be an incentive to start such a conversation, which should be held before there are too many cognitive obstacles. This conversation could be about where someone would prefer to live, at home or in other accommodation, or anything else that needs planning,” said Sara Garcia-Ptacek, a researcher at the Karolinska Institutet in Sweden. 

The tool uses four characteristics to predict life expectancy: sex, age, cognitive ability and comorbidity factors. Investigators tested the tool using data from more than 50,000 patients who were diagnosed with dementia between 2007 and 2015. 

Researchers found that that the tool was able to predict three-year survival following a dementia diagnoses with “good accuracy.” It also found that patients who were older, male and had lower cognitive function at diagnoses were more likely to die during that time frame.

According to the study, the observed average survival time was just more than 5 years, with 81 years being the average age for diagnosis of dementia. In comparison, the average 80-year-old person in Sweden has a life expectancy of 9 years. This average is based on the general Swedish population, which includes a significant proportion of persons with dementia, so it should be noted that average survival for persons who do not develop dementia would be expected to be even longer. The author's noted that their results are "very similar to previously reported numbers from a UK population study and fit with our current knowledge of the detrimental effect of dementia on life expectancy." 

The full citation for the original research reports is, "Survival time tool to guide care planning in people with dementia," Miriam L. Haaksma, Maria Eriksdotter, Debora Rizzuto, Jeannie-Marie S. Leoutsakos, Marcel G.M. Olde Rikkert, René J.F. Melis, Sara Garcia-Ptacek, Neurology (Dec. 2019,10.1212/WNL.0000000000008745;DOI: 10.1212/WNL.0000000000008745). 

Court holds Two Year Caretaker Exemption Unavailable for Transfer of Home Absent Medical Specific Evidence

A New Jersey appeals court has held that the caregiver exemption does not apply to a Medicaid applicant who could not document that her condition required her daughter to care for her for a full two years before she entered a nursing home. R.K. v. Division of Medical Assistance and Health Services (N.J. Super. Ct., App. Div., No. A-2881-17T1, Dec. 5, 2019).

R.K. transferred her home to her daughter in 2011. Her daughter cared for her in her home until April 2015, when she entered a nursing home and applied for Medicaid. The state imposed a penalty period due to the transfer of the house.

R.K. appealed, arguing that because her daughter had cared for her for two years before she entered the nursing home, the caregiver exemption should apply to the transfer of the house. The caregiver exemption is one of a number of exemptions that protect transfers of assets from impairing Medicaid eligibility. Even after entering a nursing home, you may transfer any asset to the following individuals without having to wait out a period of Medicaid ineligibility:

• Your spouse (but this may not help an applicant become eligible since the same limit on both spouse's assets will apply);
• A trust for the sole benefit of your child who is blind or permanently disabled;
• Into trust for the sole benefit of anyone under age 65 and permanently disabled.  

In addition, an applicant may transfer their home to the following individuals (as well as to those listed above):

• A child who is under age 21;
• A child who is blind or disabled (the house does not have to be in a trust);
• A sibling who has lived in the home during the year preceding the applicant's institutionalization and who already holds an equity interest in the home;
• A "caretaker child," who is defined as a child of the applicant who lived in the house for at least two years prior to the applicant's institutionalization and who during that period provided care that allowed the applicant to avoid a nursing home stay.

At the hearing, the administrative law judge (ALJ) determined that the caregiver exemption should apply, relying on records that R.K. received hospice care beginning in November 2013. The state rejected the ALJ’s determination because R.K. provided no medical records of her condition from March 2013 to November 2013. R.K. appealed.

The New Jersey Superior Court, Appellate Division, affirmed the penalty period. According to the court, because “there were no medical records demonstrating that R.K. required a special level of care from March 2013 up to November 2013,” R.K. did not demonstrate that her daughter “provided a level of care that allowed R.K. to reside at home rather than an institution or facility” for a full two years.

Obviously, live-in caregivers should obtain and secure medical evidence of impairment.  If you find yourself in this situation, contact our office.  We will provide you a form, suitable for Departments Medicaid to evidence that the provided care allowed the senior/applicant to avoid a nursing home stay..  

Administration's Public Charge Rule for Immigrants Headed to the Supreme Court

The Trump administration filed an emergency appeal January 12, 2020, that asks the Supreme Court for permission to implement rules that would make it easier for the government to deny immigrants residency or admission to the U.S. because they use public-assistance programs or might use them in the future.

The administration last August adopted the rules, which would expand the pool of people considered likely to become a “public charge” under U.S. immigration law. The designation prevents an immigrant from obtaining a green card and is used to determine which noncitizens can be removed or prevented from entering the U.S.  Roughly 544,000 people apply for green cards annually. According to the government, 382,000 are in categories that would make them subject to the new review. 

Under the new rules using benefits like Medicaid, housing assistance or food stamps could render an individual inadmissible. Immigrants applying for permanent residency must already show they will not be public charges, or burdens to the country.  The new policy  expands, however, what factors would be considered to make that determination, and if it is decided that immigrants could potentially become public charges in the future, that legal residency could be denied. Receipt of one or more of those designated public benefits for an aggregate 12 months within any three-year period by any noncitizen will be considered a negative factor in determining whether or not they become a public charge.  The rule contains a list of other positive and negative factors, like age, which will be evaluated together to make a public charge inadmissibility determination.

The Administration emphasized that the determination is a “totality of circumstances test,” meaning that receiving one benefit will not be disqualifying for green card or visa applications. According to most experts, immigrants make up a small portion of those getting public benefits, since many are ineligible to get them because of their immigration status.  The rule appeared in part a response to some state governors announcing or signalling that states might expand benefits, including to senior immigrants. 

A New York federal appeals court blocked the rule after leading industry advocates warned immigrant seniors would be hurt and their use of long-term care services impaired. The U.S. Court of Appeals for the Second Circuit handed down the ruling, denying the Trump Administration’s request to lift a temporary national injunction on the “Public Charge” rule, the Associated Press reported. A New York district court issued the injunction in October. 

The New York injunction was one of several that were issued around the time the rule had been scheduled to go into effect in October. But a regional injunction issued in California and another national injunction issued in Washington have already been lifted by other federal appeals courts. That left New York’s as the only nationwide bar to the Trump administration putting the new rule into practice. An injunction in Illinois also is in effect, but applies only to that state.

The three-judge panel of the 2nd Circuit heard arguments over the motion to lift the injunction.  Judges questioned the government’s attorney on the timing — why the injunction needed to be lifted "at this point" when the lawsuit itself would be heard by a judge in coming months.  

Leading Age was among the providers that submitted comments in opposition of the rule after it was first published in August. The National Council of Aging President and CEO James Firman also denounced the rule, which was set to go into effect in October.

“Immigrant seniors who have played by the rules will have to make an impossible choice between going hungry and avoiding needed long-term care support or losing their immigration status,” he said. “This regulation will create a personal and moral hazard for older adults who are looking to age with their families around them.”

More than a dozen states, along with the District of Columbia, challenged the federal government’s rule claiming it targeted poor, legal immigrants trying to become permanent citizens.

As Abuse in Nursing Homes Increases, Congress Focuses On CMS rather than Nursing Home Providers

Among the many reasons to plan to age in place is abuse that visits residents at nursing homes.  According to McKnights Long-term Care News, abuse deficiencies cited in nursing homes more than doubled in four years, increasing from 430 in 2013 to 875 in 2017.  These were among the findings of a 2019 Government Accountability Office (GAO) report. The most common form of abuse consist of physical and verbal abuse by staff, comprising more than half (58%) of all abuse deficiencies analyzed. 

The Report also concluded, shockingly, that most sexual abuse of nursing home residents come at the hands of nursing home staff, rather than other residents or third parties. 

The Report emphasized that abuse in nursing homes is often under-reported. Moreover, the GAO reported to Congress that even information on reported abuse and perpetrator type is not readily available. Centers for Medicare & Medicaid Services (CMS) does not require the state survey agencies to record the type of abuse and perpetrator.  Worse, when this information is recorded, it cannot be easily analyzed. Therefore, GAO reviewed a representative sample of abuse deficiency narratives from 2016 through 2017.

Nursing home residents often have physical or cognitive limitations that can leave them particularly vulnerable to abuse. Abuse of nursing home residents occur in many forms, including physical, mental, verbal, and sexual, and can be committed by staff, residents, or others in the nursing home. Any incident of abuse is a serious occurrence and can result in potentially devastating consequences for residents, including lasting mental anguish, serious injury, or death. News stories in recent years have noted disturbing examples of nursing home residents who have been sexually assaulted and physically abused.

Federal law clearly mandates that nursing homes receiving Medicare or Medicaid payments ensure that residents are free from abuse. To help ensure this, CMS, an agency within the Department of Health and Human Services (HHS), defines the quality standards that nursing homes must meet in order to participate in the Medicare and Medicaid programs. To

monitor compliance with these standards, CMS enters into agreements with agencies in each state government—known as state survey agencies—and oversees the work the state survey agencies do. This work includes conducting required, comprehensive, on-site standard surveys of every nursing home approximately once each year and investigating both complaints from the public and incidents self-reported by the nursing home (referred to as facility-reported incidents) regarding resident care or safety.

If a surveyor determines that a nursing home violated a federal standard during a survey or investigation, then the home receives a deficiency citation, also known as a deficiency. In addition to state survey agencies, there are other state and local agencies that may be involved in investigating abuse in nursing homes, including Adult Protective Services, local law enforcement, and Medicaid Fraud Control Units (MFCU) in each state, which are tasked with investigating and prosecuting a variety of health care-related crimes.

Attaining and keeping nursing home quality is not a new challenge, and numerous studies and reports have identified CMS challenges in protecting residents from abuse and weaknesses in CMS’s oversight. For example, in multiple reports dating back to 1998, GAO identified weaknesses in federal and state activities designed to correct quality problems in nursing homes. Specifically, in a 2002 report, the GAO found that CMS needed to do more to protect nursing home residents from abuse, and GAO made five recommendations to help CMS facilitate the reporting, investigation, and prevention of abuse in nursing homes.

In April 2019 GAO reported that CMS had failed to address gaps in federal oversight of nursing home abuse investigations in Oregon—an issue that we uncovered during the course of our broader work on nursing home resident abuse.  Further, reports by the HHS

Office of the Inspector General (OIG) have also reviewed incidents of resident abuse and raised concerns about CMS’s procedures.

It is important to note that the legal duty is imposed on each nursing home with CMS oversight helping insure the provides fulfill their duties. If providers perform well their obligations, oversight would be made irrelevant, and more importantly the incidence of abuse would decline.  One might conclude that with abuse rising so dramatically, even as CMS is tightening its oversight capabilities, anger with the industry would be palpable.  In a recent hearing, hovever, Members of the Senate Finance Committee "directed much of their ire not at providers but rather at CMS:

“Not only have abusive incidents doubled in recent years, but the GAO has found that CMS – the agency charged with ensuring that these facilities meet federal quality standards – often cannot access information about abusive incidents after they occur and, therefore, cannot take the necessary steps to remedy the situation,” said Sen. Thomas R. Carper (D-DE).

“CMS needs to ramp up its oversight efforts and fix the problems identified by the Government Accountability Office,” added Sen. Charles Grassley (R-IA), the chairman of the committee.

All parties at the hearing, which included American Health Care Association’s President and CEO Mark Parkinson, stressed a need and commitment to reducing abuse and neglect in nursing homes. They all also found common ground on better background check practices. Ranking committee member Sen. Ron Wyden (D-OR) expressed surprise that 13 states have no background check process for nursing home employees.

There are inconsistencies and loopholes throughout the country when it comes to nursing home oversight, including about providers having to self-attest their ownership, testified Megan H. Tinker, Senior Advisor for Legal Review of the Office of Counsel to the Inspector General, Health and Human Services.  Additionally, a provider can be eligible for Medicaid if it is already in the Medicare program, even if there hasn’t been a background check through Medicare, Tinker added.  “That leaves open a possibility a provider could be a provider for Medicaid with no background check,” she said.

Despite agreement on needing to reduce abuse and neglect, policy makers and experts differed on the best way to achieve those goals, specifically when it comes to funding.

“Medicaid covers two out of three nursing home residents. We need to strengthen Medicaid,” said Sen. Debbie Stabenow (D-MI).

In response to a question about mandatory staffing from Sen. Catherine Cortez Masto (D-NV), AHCA’s Parkinson harkened back to his days running nursing homes, acknowledging that more workers is generally better but also how it depends on how careful and efficient a given certified nursing assistant is.

He also noted that in order to achieve a higher ratio of staff to residents of 4.1 hours per resident per day, as some have suggested, it would cost potentially an additional $6 billion.

“If there’s a mandatory staffing requirement that would be paid for, we’d be all for it,” he said. “But if it’s not paid for, there is no practical way to do it.” 

Lori Smetanka, Executive Director of the National Consumer Voice for Quality Long-Term Care, pushed back in subsequent remarks.

“I think we do need to look at how the money is currently being spent by long-term care facilities,” she said. Her group encourages auditing before assessing how much additional funding is needed.

The GAO made the following recommendations to curb abuse  in its report:

•  Require that abuse and perpetrator type be submitted by state survey agencies in CMS’s federal databases for deficiency, complaint and facility-reported incident data, and that CMS systematically assess trends in these data.

•  Develop and disseminate guidance — including a standardized form — to all state survey agencies on the information nursing homes and covered individuals should include on facility-reported incidents.

• Require state survey agencies to immediately refer complaints and surveys to law enforcement (and, when applicable, to Medicaid Fraud Control Units) if they have a reasonable suspicion that a crime against a resident has occurred when the complaint is received.

• Conduct oversight of state survey agencies to ensure referrals of complaints, surveys and substantiated incidents with reasonable suspicion of a crime are referred to law enforcement (and, when applicable, to MFCUs) in a timely fashion. 

• Develop guidance for state survey agencies clarifying that allegations verified by evidence should be substantiated and reported to law enforcement and state registries in cases where citing a federal deficiency may not be appropriate. 

• Provide guidance on what information should be contained in the referral of abuse allegations to law enforcement.

The hearing was live-streamed and can be viewed on the committee’s website.

Hospice Comprehensive Assessment Measure - One Pager Now Available while the Administration develops HOPE

CMS has posted a document that articulates key information about the current Hospice Comprehensive Assessment Measure. This "one pager" provides a visual depiction that helps providers, seniors, their families, and caregivers, understand how the seven Hospice Item Set (HIS) measures contribute to the one Comprehensive Assessment Measure (CAM), and helps providers to stay on target by completing all seven HIS measures for each patient. The  CAM helps to ensure all hospice patients receive a holistic comprehensive assessment at admission, although it does not replace a comprehensive assessment. 

Of course, while helpful, HOPE is on the way.  Section 3004 of the Patient Protection and Affordable Care Act, requires the Secretary of Health and Human Services to establish procedures for making data available to the public and to ensure hospices have the opportunity to review that data prior to public reporting. CMS is developing a new patient assessment tool to be proposed in future rulemaking. As finalized in the Fiscal Year 2020 Hospice Wage Index and Payment Rate Update and Hospice Quality Reporting Requirements Final Rule, the hospice patient assessment instrument is identified as the Hospice Outcomes & Patient Evaluation (HOPE). This new tool is intended to help hospices better understand care needs throughout the patient’s dying process and contribute to the patient’s plan of care. It will assess patients in real-time, based on interactions with the patient, as opposed to the HIS retrospective chart review. Finally, HOPE will support quality improvement activities and calculate outcome and other types of quality measures in a way that mitigates burden on hospice providers and patients. 

Objectives of the HOPE

The HOPE will provide standardized data as all Medicare-certified hospices will be collecting the same assessment items for all patients. Standardization will allow CMS to analyze the data by patients, hospices, and recognize the differences between hospices. Through data analytic summaries and comparisons, hospice providers will have information to help them identify opportunities to adjust and improve patient- and agency-level decisions about the care they provide. Furthermore, patients and their families will be more informed about the hospice they choose based on quality measures that measure outcomes throughout the hospice stay and public reporting.

The two primary objectives of the HOPE are to:

• Provide quality data for HQRP requirements through standardized data collection
• Provide additional clinical data that could inform future payment refinements.

CMS seeks to develop quality measures associated with the new assessment tool that are meaningful to all stakeholders and reflect critical outcomes of care throughout the hospice stay. The measures will meet the Meaningful Measures Initiative objectives to identify high priority areas for quality measure development while reducing burden on hospice providers. They will focus on outcomes and also fit well with the hospice business model. 

Differences between HIS and the HOPE

Currently CMS collects data at admission and discharge via the Hospice Item Set (HIS) that are used to calculate measures in the Hospice QRP. However, while HIS is a standardized mechanism for extracting medical record data, it is not a patient assessment tool because the data is not collected during a patient assessment. Instead, HIS focuses on whether hospices have performed care processes using data from chart abstraction. CMS’s goal for the HOPE is to be more comprehensive than the HIS by capturing patient and family care needs in real-time and throughout the hospice stay, with the flexibility to accommodate patients with varying clinical needs. The HOPE will take into consideration hospice workflow and the Medicare Conditions of Participation. Data in patients’ baseline status and changes in their outcomes from the HOPE will contribute to care planning and inform quality measurement for the Hospice QRP, including outcome measures, and support providers’ quality improvement efforts.

Process for Developing the HOPE

The general process for the development of the HOPE includes, but is not limited to, the following calendar year 2019 activities: information gathering, stakeholder engagement, and preparing for initial testing of the HOPE. After the initial testing, the HOPE will be revised based on test findings before moving forward to national-level testing. After conducting the national-level testing of the HOPE, CMS will incorporate learnings by refining the HOPE and propose the tool in rulemaking and seek public comments. When finalized in future rulemaking, the HOPE will be implemented in the Medicare Hospice Benefit to provide value to hospice providers, patients, and families.