If you have, or had, a loved one living in a nursing home, in any state in the nation, it’s been a rough 16 months. We have all heard how elderly nursing homes residents had the highest number of deaths from COVID-19, killing more than 186,000 residents and staff of nursing homes and other long-term care facilities (Source: AARP Public Policy Institute, updated Aug. 12, 2021).

But there’s another cause of death showing up on more and more death certificates for nursing home residents — failure to thrive (FTT). The U.S. National Institute of Aging described FTT as a process of functional decline, progressive apathy, and a loss of willingness to eat and drink. FTT describes the late stages of decline and may represent a final common pathway toward death.

These FTT deaths were not COVID 19 deaths. FTT is most commonly seen in the frail elderly who may not have one specific terminal illness, but poor physical or mental health sets off a chain reaction that causes the patient to have poor appetite, loss of weight, and increased fatigue. As the patient’s nutritional status deteriorates, their health gets worse and the patient eats less and moves around less, which further exacerbates malnutrition, depression and a progressive functional decline.

You say, “But Judd, deaths from FTT have been around forever, long before the pandemic.” True. My point is that since the COVID 19 pandemic, residents in long-term care facilities (nursing homes, assisted living facilities, memory care units, independent living facilities and more) lost their right to visitations. They lost access to the essential people in their lives who connect them to who they are and advocate on their behalf.

Over one year later, some still haven’t seen their families. Millions of U.S. long-term care residents are living in isolation. Far too many residents of long-term care facilities have simply lost their will to survive. Many have died alone. The popular theory today is isolation kills too.

You might think that protection already exists for long-term care residents. In 1987, the Nursing Home Reform Act established a Nursing Home Bill of Rights into federal law that guarantees residents the right to receive visitors, use their own physician, be free of physical restraints, be free of abuse and neglect, make their own care choices, and leave the facility when they choose.

However, this pandemic exposed a loophole in federal law and civil rights protections. It allowed these rights to be waived indefinitely during the public health emergency causing the isolation. The result was millions of long-term care residents in the U.S. having their rights taken away overnight and living in isolation.

In March 2020, when the COVID-19 public health emergency was declared, the 1135 Waiver was issued by the Department of Health and Human Services granting state governors executive power to control various policies regulating residential healthcare facilities, including visitation. Over one year later, those powers are still intact and active despite changes to the current state of public health. The current restrictions on long-term care visitation is a direct violation of these rights.

Over the course of the past year-plus, our loved ones have been living in strict social isolation, which has led to an increase in death rates due to “failure to thrive.” There is a massive violation of rights based on ageism and ableism that is keeping a population locked in their facilities under the pretenses of a year-long national health emergency.

While there has been some updated guidance to federal and state visitation policies, the “Essential Caregiver Movement” is now under way to make sure that this never happens again –  the Delta variant, or the newest Mu variant could trigger another shutdown. Furthermore, the lockout is still happening in some facilities.

The Essential Caregivers Act (H.R. 3733) is bipartisan legislation that gives residents of nursing homes the right to access essential caregivers (ECs) during any public health emergency.

A bipartisan national group of state leaders, and nine different organizations, are working together toward H.R. 3733, the Essential Caregiver’s Act. Very simply, H.R. 3733 allows essential caregivers access to long-term care facilities to provide care and support to a facility resident during any public health emergency.

You ask, “Am I an essential caregiver?” According to the current law, you (the family member) are not a essential worker. You are a “visitor.” This is the key to the proposed legislation – We are not “visitors” as we are often referred to. We are the caregivers. We are the voice of the resident. We play a critical role in the support, in the well-being, in the quality of life of residents in long-term care facilities.

According to H.R. 3733, an essential caregiver is a person, designated by the resident, who can enter the facility, even when visitation is shut down during a public health emergency, to provide support, assistance, and companionship to the resident. Very often, this person is a family member. Each resident can select up to two essential caregivers.

These visits will be guaranteed as long as the essential caregiver follows all the safety and infection protocols required of staff, so they do not pose any increased risk to resident safety. Essential caregivers who refuse to follow the same protocols will be denied entry. This act is critical to resident well-being because it:

• Ensures residents receive critical support and assistance;

• Permits those serving as ECs to monitor residents’ care; and

• Guarantees daily visits of sufficient length to benefit/support residents even during a public health emergency.

The mission of the Essential Caregiver Movement is to fight for the immediate restoration of rights for residents in long-term care facilities. This altered guidance should not penalize vaccinated residents on behalf of other residents and staff members who decline the vaccine. The new language should be clear, unambiguous and enforceable with penalties.

The CDC states two vaccinations no longer require a quarantine. The world has moved on despite the initial declared public emergency. Restaurants fill with patrons. Sporting arenas allow fans. And yet our loved ones continue to suffer behind locked doors. In addition, families have been locked out during the end-of-life stages and too many have died alone.

The Essential Caregivers Act reasonably allows residents to designate only two caregivers to be granted access no matter the public emergency. It restricts their access to 12 hours per day during a public health emergency and requires certain health and safety protocols. This essential caregiver would be tested as staff, trained as staff, PPE supplied as staff and therefore pose no more safety threat than staff.

If you may know someone who’s in a nursing home at this time, or if there’s a chance (40% according to the AARP) that any one of us could end up in a nursing home in the future, you need to contact your member of Congress and ask them to co-sponsor the Essential Caregivers Act (H.R. 3733). These are the policies that dictate the well-being and rights of our loved ones, most of whom cannot speak for themselves.

To: Representative _________
Co-Sponsor H.R. 3733: Save Our Loved Ones in Long-Term Care

I am writing to encourage you to co-sponsor the Essential Caregivers Act (H.R. 3733), a bipartisan bill that would designate an essential support person for every resident living in long-term care. Under OBRA ’87, residents of nursing homes and other federally funded facilities are guaranteed the right to visitation by anyone of their choosing 24 hours a day, 7 days a week. The COVID-19 lockdown removed visitation, which in the beginning was critical for the good of public safety, but over a year later has yet to be fully restored.

As a result, thousands of our beloved family members are still dying of social idolism, with “failure to thrive” appearing on their death certificates, not COVID-19. We are not visitors. We are their connection to quality of life and their existence outside of institutional living. H.R. 3733 not only restores their access to companionship, daily living assistance and social support, it restores their voice.

In this bill, essential caregivers will be tested and equipped as staff; therefore we will pose no additional threat to public safety. Win-win. Please be a co-sponsor. Restore resident rights.

(your name)
Constituent of (city of residence)

Judd Matsunaga, Esq., is the founding partner of the Law Offices of Matsunaga & Associates, specializing in estate/Medi-Cal planning, probate, personal injury and real estate law. With offices in Torrance, Hollywood, Sherman Oaks, Pasadena and Fountain Valley, he can be reached at (800) 411-0546. Opinions expressed in this column are not necessarily those of  The Rafu Shimpo.

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