Are you concerned about a family member at a nursing home? How can you not be??? While over one-third of the COVID-19 deaths in California have been residents of long-term care facilities, California has yet to develop a statewide plan to protect residents in these settings two months into this crisis (source: www.JusticeinAging.org, May 15, 2020).
Chances are, your resident has now gone months without seeing his/her families and friends. Loneliness has consequences. Under the visitation ban, residents lost the love, companionship, support and care from their loved ones just when they needed it most. The isolation has brought an immense emotional toll on residents and all who care about them. Far too many residents are suffering and dying alone.
Visitation is one of the most important and meaningful rights of long-term care facility residents. Spouses and adult children of residents with dementia often help them manage their days. Families often provide routine, life-sustaining care to residents, such as helping them to eat and drink, change positions, maintain hygiene, get dressed and exercise.
That’s why both U.S. and California law guarantee very broad access for residents to visit with friends, families and others who provide critical support. However, in response to the COVID-19 pandemic, the federal government and California both suspended residents’ rights to visitors in an effort to prevent the introduction and spread of COVID-19 in long-term care facilities in March.
The visitation bans issued in March were hasty responses to the uncertainty of the time. Now that we have gained more experience and information about COVID-19 and its impact on long-term care, it is time to update visitation restrictions and allow support-person visitors to maximize the welfare of residents. Broad visitation bans are doing more harm than good.
The visitation ban was also not successful in protecting long-term care residents from COVID-19. Thousands of facilities have had outbreaks, many of them massive, and thousands of residents have died. With so many facilities experiencing an outbreak, the visitation ban has diminishing value (source: California Advocates for Nursing Home Reform, May 4, 2020).
The complete absence of visitors has made facilities more susceptible to COVID-19 outbreaks, not less, because there is no one to sound the alarm about the staffing crises, poor infection control practices and neglect that cause them. Locking out visitors has left facilities with no oversight, including those with deplorable histories of abuse and neglect.
Given the failure of the visitation ban to arrest COVID-19 and the growing concern that current policy may be condemning residents to never see their loved ones again, it is time to soften the visitation ban and use an approach that better balances the relevant concerns about residents’ welfare. Warm weather has returned, opening the opportunity for outdoor visits on a facility’s property, such as courtyards, patios or parking lots.
California has already begun restoring partial visitation rights for health-care patients. The Department of Public Health recommends that patients with disabilities be allowed a support person when “medically necessary.” DPH needs to strengthen this guidance. What is “medically necessary”? Does that mean a physician’s order is needed? Why send families after a physician’s order if a facility can nonetheless refuse to abide a DPH “recommendation”?
While these problems are being worked out, here’s something you may find helpful regarding patients at “end-of-life” situations. When the U.S. government barred family members from visiting relatives in nursing homes, it made an exception for certain compassionate cases like end of life. In those cases, visitors will be equipped with personal protective equipment-like masks, and the visit will be limited to a specific room only.
“People want to be close to someone they love who is dying because it’s their last opportunity to say goodbye,” said Michael Shochet, senior cantor at Temple Rodef Shalom in Falls Church, Va. “If they miss that opportunity, they never get it back” (source: AARP, Navigating New Rules, March 30, 2020).
Visitors are essential to the mental health of patients who are at an end-of-life stage. For their continued mental health and well being, the Center for Medicare and Medicaid Services recommends that one visitor be allowed to be present with the patient. But the problem is, the CMS has no hard and fast definition — setting off a painful, nationwide debate over the meaning of the phrase.
“This is a very difficult question,” admitted Manuel Eskildsen, a physician and clinician-educator in the division of geriatrics at UCLA’s David Geffen School of Medicine. “A great amount of literature has been written on this, and even doctors can’t always tell when patients are dying. It’s really hard to tell. It’s human nature that we’re all optimistic, and we tend toward overstating how long someone has to live.”
When asked during a press conference to define “end of life” or “imminent death,” CMS said the agency does not specifically define “end of life” — that should be left up to the facility and the family to decide together. In other words, even in the midst of this terrible crisis, there is no simple answer. In the end, it’s all about trying to make those final days better not just for the person who is dying but also for those who are grieving the loss.
Judd Matsunaga is the founding attorney of Elder Law Services of California, a law firm that specializes in Medi-Cal Planning, Estate Planning and Probate. He can be contacted at (310) 348-2995 or firstname.lastname@example.org. The opinions expressed in this article are the author’s own and do not necessarily reflect the view of the Pacific Citizen or constitute legal or tax advice and should not be treated as such.