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Family and Friends—It’s What Care Homes Need

Opinion by Teresa Palmer M.D., Westside Observer, August 2021

Who is the last to be considered in an emergency and the first to suffer and die? Folks who must live in long-term care facilities. A report, Not just COVID: Nursing home neglect deaths surge in shadows by Matt Sedensky and Bernard Condon estimated there were at least 40,000 excess deaths in nursing homes NOT attributable to COVID-19 as of November 2020. (AP. November 18, 2020)

Now there is legislation, House Resolution 3733, that could immediately help—the “Essential Caregiver’s Act

 This bill mandates the right to have a chosen friend or family be identified as an “Essential Caregiver.”  This bill has bipartisan support. It is national legislation that no one should object to. It is likely to relieve some excess deaths and a lot of suffering NOW. A broad array of respected organizations and advocates support this bill.

H.R. 3733 mandates that two chosen people, in a public health emergency, have access to a resident in long-term care 12 hours a day. These “Essential Caregivers” must be offered, and comply with, the same precautions and protections as staff.

It simply ensures that, in the event of a public health emergency, folks in long-term care have the right to have their chosen ones with them in person.”

This legislation was written to solve a specific problem in long-term care facilities. Unlike other proposed legislation, this does not “fix” how care homes are now funded and run. It also does not challenge the need for strict precautions in a public health emergency. It simply ensures that, in the event of a public health emergency, folks in long-term care have the right to have their chosen ones with them in person. However, it may save facilities money by letting family in to help.

Berenice Palmer died 2 months after a Care Home
kept the family away from her for a year.
She never met her great-grandaughter.

In March of 2020, when visitors were first locked out of care homes, we knew so much less than we know now. The suspension of regulatory protections for the right of free association and freedom of movement, so critical in long-term care, seemed like the right thing to do.

After vaccination, improvements in PPE and infection control, we have had great hope that this inhumane “lockdown” would be ended. But the Delta variant is now upon us, and this is not to be. To make this worse, the shortage of staff in care homes is worse than ever, leaving our loved ones with the ongoing threat of both isolation and neglect.

I met with, along with other advocates, an aide of Nancy Pelosi, Daenuka Muraleetharan, PhD, on August 24, 2021. We wanted to clarify the need for strong democratic support of this legislation. This legislation will not cost any substantial money. This and the fact that it has bipartisan support means that it need not be passed by reconciliation. It should be presented and passed in the House and Senate as soon as possible.

As of now, the bill has stalled since June in two committees:  the House Energy and Commerce and the Ways and Means Committees.

The push for Democrats to pass the “American Jobs Plan” infrastructure bill right now is understandably eclipsing smaller legislation like HR3733. The need for broader legislation is dire, (specifically the $400 billion investment to expand access to care support workers in the caregiving sector, expand access to long-term care services through Medicaid, which would in turn support good-paying caregiving jobs). BUT, we must not forget the immediate solutions that HR 3733 offers to those who are isolated and neglected in long-term care facilities. Bipartisan support will allow this smaller bill to pass standing on its own.

We can only wish she had met her Great Grandmother

A list of H.R. 3733 current supporters and sponsors is here: more are expected soon!

Any of us, including children, could end up in a long-term care facility of some kind—not just the elderly. Imagine having a new level of disability and being told you could only see your loved ones for ½ hour with 3 days’ notice. Or that you cannot have anyone at the bedside because you are not at “End of Life.” Imagine that, due to difficulty hiring nurses and nursing assistants, that no one answers your call bell for hours. That your food is repeatedly taken away uneaten because you are slow. Imagine being surrounded by overworked staff who have no time to explain anything to you. Imagine your loved ones getting this call from a facility: you are dying, you should just get “comfort care” … but your loved ones have not seen you for weeks & you seemed fine then … this is happening now.

In the future, we will look back on the current conditions for folks in care homes in the same way we now look back on Japanese Internment Camps in World War 2, or to forced Boarding Schools for indigenous kids. Both caused massive suffering, dehumanization, and increased death.

Please call or email your congressperson: HR 3733 must be passed as soon as possible.

In addition, Senator Ron Wyden (Democrat, Oregon) has offered a nursing home reform bill “The Nursing Home Improvement and Accountability Act.”

This legislation, if it is not watered down, has the potential to really help nursing home residents and to improve how care is delivered. It uses a carrot and stick approach to make sure nursing homes improve staffing and care if they are to receive increased help from the feds. It also proposes a demonstration project which has been recommended by many experts: a trial of small (5-14 bed) nursing homes situated within the community, which can give the same care as larger institutions.

The New York Times recently ran an article titled “Nobody Wants to Live in a Nursing Home-Something Has to Give.

Something indeed has to give, and we are all getting older so—the sooner the better. Contact your Congressperson about HR 3733 today, and don’t stop there!

Dr. Teresa Palmer is a geriatrician/family physician who has worked in San Francisco for over 30 years, including at St. Luke’s Hospital, Laguna Honda Hospital, UCSF, and at On Lok, a program of all inclusive care for the elderly.