(The pdf for the issue in which this article appears is available for download: Bifocal, Vol. 41, Issue 1.)
Nursing home residents are some of the most vulnerable individuals in the United States. Given that about half of all older adults will need nursing home care at some point in their lives,1 the quality and safety of our nursing homes are matters of importance to virtually every family in the United States. Sadly, serious problems such as insufficient staffing, abuse, and neglect are persistent and widespread.
A recent Senate subcommittee hearing, as well as government studies, have focused on the clinical care and safety of residents in our nursing homes—and much-needed efforts to improve them. The Trump administration is moving in a different direction. It has advanced efforts to deregulate nursing homes at the risk of placing even more residents in harm’s way. In July, more than a year after the nursing home industry asked for relief from what it called regulatory burdens, the Centers for Medicare and Medicaid Services (CMS) issued a proposed rule that would roll back many of the minimum standards of care in the federal regulations known as the Requirements of Participation.2 CMS offered no meaningful explanation as to how rolling back these resident protections would improve resident health, safety, or welfare. Rather, the agency said the proposed rule would enable nursing homes (which are increasingly run by for-profit enterprises) to decrease staffing and reduce costs associated with resident care and compliance with minimum standards.
The proposed rule rolls back requirements related to:
- • Keeping residents informed about their primary care professionals
- • Responding to resident grievances
- • Protecting residents from inappropriate transfer or discharge
- • Bed rail safety
- • Posting of care staff on duty
- • Behavioral health services
- • Reducing antipsychotic drugging
- • Food and nutrition management
- • Facility assessments
- • Quality assurance and performance improvement programs
- • Infection control
- • Compliance and ethics programs
- • The physical environment of residents’ rooms
- • Informal dispute resolutions
- • Civil money penalties for substandard care, abuse, and neglect
Perhaps most shockingly, the proposed rule guts the requirement that nursing homes provide a meaningful response to grievances by residents and their families. As it stands, concerns voiced by residents, families, and their representatives are not always addressed by care staff or facility administration. This can result in extended suffering or discomfort, and often leaves residents and their families deeply frustrated. In 2016, CMS required facilities to have a designated grievance officer to whom complaints could be made. To ensure that nursing homes were not burdened by this requirement, the rule only requires the designation of a specific staff member; facilities do not have to hire additional staff. The grievance officer is responsible for investigating the complaint and responding in a timely manner.
Now, CMS is proposing changes that would gut the value of this important regulation to residents and their families. The proposed rule creates a new distinction between what CMS calls “feedback” (or complaints) and grievances. CMS states that feedback or complaints “stem from general issues that can typically be resolved by staff present at the time a concern is voiced, while grievances are more serious and generally require investigation into allegations regarding quality of care.”3 The proposed rule allows facilities to determine whether a resident’s concern rises to the level of a grievance. The likely effect: an increased risk that resident abuse and neglect will go undocumented.
The proposed rule also would make it easier to administer antipsychotic drugs to residents, which too many nursing homes use as a form of chemical restraint: to sedate them for the convenience of staff.4 In fact, the Inspector General of the Department of Health and Human Services (HHS) stated in 2011 that “[g]overnment, taxpayers, nursing home residents, as well as their families and caregivers should be outraged—and seek solutions” to remedy widespread and unnecessary antipsychotic drugging.5
Since that time, CMS created initiatives resulting in the modest reduction of antipsychotic drugging. Nursing homes around the country received a comprehensive training package on improving dementia care and reducing the use of antipsychotics. State surveyors (inspectors) were provided a mandatory training to improve oversight. In 2012, CMS promised that these various training efforts would be accompanied by vigorous enforcement of the longstanding prohibitions against use of chemical restraints. Unfortunately, as our analyses of enforcement data indicate, promised improvements to enforcement never materialized..6 As a result, close to one in five residents stil receive these dangerous drugs today.7
To improve efforts to address this problem, in 2016 CMS limited the administration of these drugs PRN (pro re nata or “as needed”) to a maximum of 14 days, but this can be extended if “the attending physician or prescribing practitioner evaluates the resident for the appropriateness of that medication.”8 According to CMS’s current Interpretive Guidelines, evaluation “entails the attending physician or prescribing practitioner directly examining the resident and assessing the resident’s current condition and progress to determine if the PRN antipsychotic medication is still needed.”9
CMS now proposes to revise the regulations so that the attending physician or prescribing practitioner can, without a direct examination and assessment of the resident, extend PRN orders beyond 14 days.10 There is no medical indication for any antipsychotic to be given PRN and no legitimate basis, in our view, for extending a time limit on something that is not the standard of care. Furthermore, the standard of care is for doctors to see a patient when prescribing a medication. We cannot imagine that any other insurance company would accept the argument that a doctor did not want to see a patient in person before prescribing a drug. We must not allow nursing homes and residents’ doctors to circumvent this standard of care.
These are just two examples among many of how the administration’s proposal would put U.S. nursing home residents at higher risk of abuse, neglect, and even unnecessary death.11
Background on Nursing Home Standards
Congress passed, and President Reagan signed into law, the Nursing Home Reform Law as part of the Omnibus Reconciliation Act of 1987. Passage of the Reform Law was a watershed event in our country’s approach to nursing home care. Following an Institute of Medicine report to Congress that identified widespread abuse, neglect, and inadequate care, the Reform Law was promulgated to protect nursing home residents and to put an end to unnecessary suffering.
The Reform Law established national standards for care and residents’ rights for those in nursing homes. At the heart of the law is the requirement that each resident be provided with services sufficient to attain and maintain his or her highest practicable physical, mental, and psycho-social wellbeing.12 Importantly, “highest practicable” relates to a resident’s potential abilities and personal goals as identified through an individualized, comprehensive assessment. “Highest practicable” does not mean what is practical, or preferable, for the facility based on its profit margin or other priorities.
To realize the Reform Law’s mandate, many new federal standards were established:
- • A resident assessment process leading to the development of an individualized service plan
- • Residents’ right to organize and participate in family or resident councils
- • Residents’ right to be free of unnecessary restraints, physical or chemical
- • Specific requirements for those most responsible for resident care (including direct care staff and those responsible for overseeing medical, food, and therapy services)
- • Assurances by state survey agencies (usually the state health department) that the minimum standards are implemented
Additionally, the Reform Law requires the Health and Human Services Secretary to ensure that the nursing home requirements and their enforcement are “adequate to protect the health, safety, welfare, and rights of residents and to promote the effective and efficient use of public monies.”13
Unfortunately, 32 years after passage of the Reform Law, many nursing home residents are not fully protected by, or benefitting from, these standards due to the persistent failures at the state and federal levels to adequately enforce them. Numerous studies over the years have identified lax oversight by the government agencies charged with protecting residents (not to mention safeguarding the fiscal integrity of the public programs which pay for a majority of nursing home care). For instance, a 2014 study by the HHS Office of the Inspector General (OIG) found that an astonishing one-third of residents who were in a nursing home for short-term care were harmed within an average of two weeks of admission (15.5 days).14 Almost 60 percent of the injuries were identified as preventable and attributable to poor care.15 Six percent of those who were harmed died, and more than half were rehospitalized at an annualized cost of $2.8 billion in 2011.16
In July of this year, a report by the U.S. Government Accountability Office (GAO) found that the number of abuse deficiencies more than doubled between 2013 and 2017.17 Almost half of all violations were identified at the highest levels of severity.18 Similarly, an OIG report in June found that one in five high-risk Medicare claims for hospital emergency room services in 2016 indicated potential abuse or neglect of nursing home residents. 19 An OIG analysis of a sample of those claims revealed that nursing homes failed to report 84 percent of the potential abuse and neglect incidents to state survey agencies.20 Representatives from the GAO and OIG testified about these reports at a July hearing before the U.S. Senate Committee on Finance.21
The Long Term Care Community Coalition’s (LTCCC) analyses of federal records and data over the last 25 years corroborate these grim accounts of nursing home care. For example, health inspection reports indicate that states and CMS too often fail to properly cite a nursing home for any pain or suffering a resident experienced as a result of a violation. In fact, the vast majority of violations of minimum health standards cited by the states are identified as causing neither harm nor immediate jeopardy to a resident’s health and safety. A few examples of these “no harm” deficiencies that our organization has come across include a live maggot infestation on a resident, a sexual assault of a resident with dementia by another resident, and a 30-day wait for a resident to be bathed.
The failure to identify when residents are harmed is, perhaps, the most pernicious dereliction of duty by the state survey agencies and CMS, which directs and oversees the state agencies. A facility is unlikely to face any penalty for violations when harm or immediate jeopardy is not documented. As a result, too many nursing homes get paid for care that is abusive, neglectful, or, essentially, “worthless.”22
The public is also being misled. The failure to identify harm and care problems, including substandard care, enables too many nursing homes to enjoy high ratings in the federal Nursing Home Compare Five-Star Rating System. To make matters worse, the Trump administration is now advocating for Congress to decrease the frequency of standard nursing home inspections for so-called “top-performing” facilities from annually to every three years.23 This likely would be disastrous for residents and their families.
Nursing Home Resident Advocacy
LTCCC and other advocates are responding to these challenges through advocacy and education of the public, news media, and policy makers. It is particularly important that state and federal representatives are educated about the prevalence of substandard care and demeaning conditions in our nursing homes, and that they hear from their constituents about their experiences with nursing home care. We encourage individuals and families to speak out to their state and federal representatives. To help residents, families, and advocates understand their rights and effectively advocate for better care, we offer these resources on www.NursingHome411.org:
- • Fact sheets on key nursing home standards
- • Abuse, Neglect, and Crime Reporting Center
- • Dementia Care Advocacy Toolkit
- • Elder Justice “No Harm” Newsletter
- • The latest staffing information for all U.S. nursing homes
- • Searchable state files on facility citations and ratings based on key indicators
- • Webinars and podcasts on key issues and developments
1 See Michael D. Hurd, Pierre-Carl Michaud, & Susann Rohwedder, Distribution of lifetime nursing home use and of out‐of‐pocket spending, 114 Proceedings of the National Academy of Sciences 9,838 (Sept. 2017), https://www.pnas.org/content/pnas/114/37/9838.full.pdf (“We found that 56% of persons aged 57–61 will stay at least one night in a nursing home during their lifetimes . . . .”).
2 Medicare and Medicaid Programs; Requirements for Long-Term Care Facilities: Regulatory Provisions To Promote Efficiency, and Transparency, 84 Fed. Reg. 34,737, 34740 (July 18, 2019) (to be codified at 42 C.F.R. pts. 410, 482, 483, 485, and 488), https://www.govinfo.gov/content/pkg/FR-2019-07-18/pdf/2019-14946.pdf.
3 Id. at 34,740-41.
4 See, “They Want Docile”: How Nursing Homes in the United States Overmedicate People with Dementia, Human Rights Watch (Feb. 5, 2019), https://www.hrw.org/report/2018/02/05/they-want-docile/how-nursing-homes-united-states-overmedicate-people-dementia (noting that “[s]tudies find that on average, antipsychotic drugs almost double the risk of death in older people with dementia”).
5 Daniel R. Levinson, Overmedication of Nursing Home Patients Troubling, HHS OIG (May 2011), https://oig.hhs.gov/newsroom/testimony-and-speeches/levinson_051011.asp.
6 See, for examples, Left Behind: The Impact Of The Failure To Fulfill The Promise of The National Campaign To Improve Dementia Care (2014) and Safeguarding Nursing Home Residents & Program Integrity: A National Review of State Survey Agency Performance (2015), both available at https://nursinghome411.org/.
7 Letter from Richard E. Neal, Chairman, U.S. House Committee on Ways and Means, to Bill Osborn, President, National Community Pharmacists Association (Aug. 28, 2019), https://waysandmeans.house.gov/sites/democrats.waysandmeans.house.gov/files/documents/SNF_Antipsychotics%20letter_LTC%20Pharmacists_Final_2.pdf.
8 42 CFR § 483.45(e)(5).
9 State Operations Manual – Appendix PP – Guidance to Surveyors for Long Term Care Facilities, CMS, Rev. 173, 11-22-17, https://www.cms.gov/Regulations-and-Guidance/Guidance/Manuals/downloads/som107ap_pp_guidelines_ltcf.pdf.
10 Id. at 34,743-44.
11 For the full text of our comments on the proposed rule, see https://nursinghome411.org/consumer-comments-proposed-nursing-home-requirements-2019/.
12 42 U.S.C. § 1395i–3(b)(2).
13 Id. at § 1395i–3(f).
14 Daniel R. Levinson, Adverse Events in Skilled Nursing Facilities: National Incidence Among Medicare Beneficiaries, HHS OIG (Feb. 2014), https://oig.hhs.gov/oei/reports/oei-06-11-00370.pdf.
17 Improved Oversight Needed to Better Protect Residents from Abuse, GAO (Jul. 23, 2019), https://www.gao.gov/assets/700/699721.pdf.
18 See id. at 15 (“Specifically, 42.6 percent of the 875 abuse deficiencies were categorized as causing actual harm or posing immediate jeopardy to residents in 2017, compared to 31.9 percent of the 430 abuse deficiencies in 2013.”).
19 Joanne M. Chiedi, Incidents of Potential Abuse and Neglect at Skilled Nursing Facilities Were Not Always Reported and Investigated, OIG (June 2019), https://oig.hhs.gov/oas/reports/region1/11600509.pdf.
20 Id. at 12.
21 Promoting Elder Justice: A Call for Reform Before the Senate Comm. on Fin., 116th Cong. (2019), https://www.finance.senate.gov/hearings/promoting-elder-justice-a-call-for-reform.
22 For a recent example of a “worthless services” case, see Vanguard Healthcare Agrees to Resolve Federal and State False Claims Act Liability, https://www.justice.gov/opa/pr/vanguard-healthcare-agrees-resolve-federal-and-state-false-claims-act-liability.
23 See Seema Verma, Ensuring Safety and Quality in Nursing Homes: Five Part Strategy Deep Dive, CMS Newsroom (Aug. 28, 2019), https://www.cms.gov/blog/ensuring-safety-and-quality-nursing-homes-five-part-strategy-deep-dive (“We propose to survey top performing facilities every 30 months, with no more than 36 months between surveys of any single facility.”).
About the Authors
Richard Mollot is the executive director of the Long Term Care Community Coalition (LTCCC), a nonprofit dedicated to improving care for seniors and the disabled through legal and policy research, advocacy, and education. Richard has served on a number of state and national consumer and government advisory groups relating to dementia care, nursing home and assisted living standards, and nursing home financing and quality improvement. He has written and presented trainings on a variety of long-term care issues, including nursing home laws and regulatory standards, assisted living law and policy, and dementia care and the use of antipsychotic drugs. Richard is a graduate of Howard University School of Law and a member of the Maryland Bar.
Dara Valanejad is a policy attorney at the Long Term Care Community Coalition and the Center for Medicare Advocacy. His work focuses on advocating for the rights and protections of nursing home residents. He received his J.D. with honors from American University Washington College of Law, where he served on the American University Law Review. He is a member of the District of Columbia Bar.