Nearly Half of U.S. Deaths Are Occurring in Nursing Homes: What You Can Do

Based on a new analysis of state-by-state COVID-19 fatality reports, it is clear that the most underappreciated aspect of the novel coronavirus pandemic is its effect on a specific population of Americans: those living in nursing homes and assisted living facilities. 

Nursing homes and assisted living facilities have accounted for 42 percent of COVID-19 deaths.

Difference between long-term care providers

  • Nursing homes. Also known as skilled nursing facilities (SNFs), include 24-hour supervision, nursing care, three meals a day, and assistance with activities of daily living. Nursing home residents are typically people with long-term physical, medical, or mental conditions requiring 24-hour supervision, but can also include patients recently discharged from a hospital who need such care temporarily.
  • Assisted living facilities. Assisted living facilities, sometimes called residential care homes or personal care homes, are similar to nursing homes, but for individuals who don’t require full-time medical care on-site. They offer meals and assistance with activities of daily living.

Coronavirus FAQS

Alice Bonner, who was director of CMS’ nursing home division during the administration of President Barack Obama, acknowledged the lingering questions about the slow response.

“All I can say is we have heard those questions — everyone — they are all wondering the same thing,” said Bonner, who suggested that the delays may stem, in part, from the different ways states collect data.

Why are nursing homes COVID-19 hotspots?

Of the nation’s 1.3 million nursing home residents, most are 65 years old and older, which are in the high risk age for contracting and dying from coronavirus. People with chronic medical conditions, such as heart disease, diabetes, kidney disease, and respiratory illness, otherwise known as immunocompromised, also are also at high risk. 

The concentration of seniors who are both in the age range and are immunocompromised is a key reason why one in five U.S. deaths from COVID-19 have occurred in nursing homes and other long-term care facilities. 

In addition, there is a mass shortage of coronavirus tests. “We think there is huge under-identification of the virus in nursing homes, so until they start reporting and comprehensive testing, it’s not going to work,” said Charlene Harrington, a professor emerita of nursing at the University of California San Francisco. “I think the problem is CMS and the governors have not put the nursing homes at the top of the list — and I can’t think of any group that is more vulnerable.”

Other conditions at nursing homes can exacerbate the spread of the disease:

  • Shortages of or lack of access to personal protective equipment (PPE) such as masks and gowns
  • Frequent and necessary physical contact between residents and staff
  • General under-staffing
  • Employees who work in multiple facilities, increasing chances for exposure
  • Chronic problems with infection control that predate the pandemic
  • Shared resident rooms
  • Transfers of residents from hospitals and other settings

Preventative action

The Centers for Medicare & Medicaid Services (CMS) and the Centers for Disease Control and Prevention (CDC) have issued guidance on reducing the spread of COVID-19 in nursing homes. 

Facilities have been instructed to:

  • Strictly limit visitation
  • Suspend communal dining and group activities for residents
  • Screen residents daily for fever and other COVID-19 symptoms
  • Screen anyone entering the building for symptoms and observe flexible sick-leave policies for staff members
  • Require staff to wear masks

If the disease is identified at a nursing home, the federal agencies urge the facility to restrict residents to their rooms; require healthcare staff to wear gowns, gloves, eye protection, and N95 or medical masks; and treat suspected and confirmed COVID-19 patients in a designated area, away from other residents. CMS announced in April that it will be required that facilities quickly alert residents, their families or representatives, and the CDC about new COVID-19 cases.

Can I visit my loved one in a nursing home?

Nursing homes and other senior-living facilities are effectively in lockdown, with entry restricted to essential staff, health care workers and vendors. Under CMS guidelines, outside visitors can come only in “compassionate care situations,” such as when a resident is near death. The CMS issued recommendations on May 18 aimed at helping state and local authorities determine when and how to resume visitation, but it will likely be some time before that happens.

In the meantime, the best way to “see” your loved ones during this period is through video-chat and conferencing platforms like Zoom, FaceTime, and Skype. AARP is advocating stronger measures by Congress and state governments to require nursing homes to facilitate virtual visitation during the pandemic and has endorsed the federal ACCESS (Advancing Connectivity during the Coronavirus to Ensure Support for Seniors) Act, which would provide grants for nursing homes to buy tech tools and services to support virtual visits. Phone calls are another option to speak with residents.

What can I do to support my loved one?

For most of the country, visitors are not allowed in assisted living and nursing homes, and residents are mostly confined to their rooms. 

“I’m seeing a lot of patients with pronounced situational depression,” said Jennifer Olszewski, an expert in gerontology at Drexel University. Olszewki works in three nursing homes in the Philadelphia area. She has found an overall “decrease in appetite and energy, a lack of motivation, and overall feelings of sadness.”

“If this goes on for months longer, I think we’ll see more people with functional decline, mental health decline, and failure to thrive,” Olszewski said.

There tips on how to comfort loved ones suffering from extended isolation, such as:

  • Validate their feelings
  • Remind them of their resilience
  • Remind them of their beliefs
  • Speak of the physical symptoms of depression, rather than the emotional
  • Tell them that they are not a burden
  • Ask for a professional psychologist or social worker referral

How are nursing homes regulated?

Centers for Medicare & Medicaid Services, in collaboration with state governments, are regulated by the federal government. State survey agencies conduct inspections of nursing homes on behalf of the CMS to check that they comply with federal laws and standards in areas such as staffing, hygiene, record keeping, and residents’ care and supervision. Facilities must be deemed compliant to be certified by the CMS and eligible for payments from Medicare and Medicaid. State surveyors also ensure compliance with state laws, which frequently go beyond federal requirements.

Who do I talk to about my complaint or concern?

Try talking to the nursing home, first. Learn as much as you can about the situation you want to address and have specific questions ready. 

If the facility is not responsive, reach out to your state’s long-term care ombudsman. Ombudsman programs were established by the federal Older Americans Act in all 50 states, plus the District of Columbia, Puerto Rico and Guam, to address problems related to the health, safety, welfare and rights of residents of nursing homes and long-term care communities.

Staff and volunteers at ombudsman offices work to advocate for residents of long-term care facilities, and to investigate and resolve complaints. 

If an issue persists, you can file a complaint with your state survey agency. They will inspect the nursing homes to determine if they comply with CMS regulations. Keep in mind that infection control due to COVID-19 is getting priority attention, so other concerns may take longer to resolve.

What are nursing home residents’ rights?

The CMS has a list of residents’ rights and protections under federal and state laws. These include the right to:

  • Be treated with dignity and respect
  • Be free from abuse, neglect and discrimination
  • Have friends and family visit and participate in your care
  • Take part in activities
  • Make complaints without fear of punishment
  • Receive proper medical care
  • Have a doctor, family member, or legal representative notified of changes in your condition or treatment

Keep in mind that state statutes on resident rights often go beyond federal rights. But rights related to visitation and activities are being restricted as part of efforts to curb the spread of COVID-19. The National Consumer Voice for Quality Long Term Care, an advocacy group that focuses on long-term care, collected data on how the pandemic is affecting rights and rules in nursing homes.

Should I be removing my loved one from their nursing home?

The truth is- there is no one-size-fits-all answer. The high rate of sickness and deaths in nursing homes have families wondering whether their loved ones would be better off at home until the COVID-19 pandemic is over.

Federal regulations allow a resident to leave a facility at any time, though health experts advise to consider the risks and to think the process out thoroughly.

Questions to consider:

  • What are the pros and cons of moving your loved one?
  • What does your loved one want?
  • What are your loved one’s care needs?
  • Can you provide appropriate care at home? (i.e. specialized care, meals, medication management, assistance in the bathroom and with hygiene, engaging your loved one in activities)
  • Are there risks of COVID-19 exposure at home?
  • Would you be able to do virtual or window visits with your loved one in the nursing home?
  • If you move your loved one home and change your mind, can they be readmitted to the care home?
  • Are the reasons for moving your loved one into a long-term care facility still valid?
  • Is the nursing home adequately staffed and handling coronavirus well?
  • Could professionals handle care-giving better than you could at your home?

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