Strict isolation. Constant surveillance. No communal dining or group activities. No hugs, no touching, no visitors except in extreme cases. This may sound like life on death row, but in fact, in the coronavirus era in which we live, it fairly describes the plight of many residents in America’s long-term care facilities.
This eerie similarity came innocently enough. Under the recommendations the federal government proposed in mid-March, and through the executive orders imposed by some governors that were even more strident, nursing homes and assisted living facilities dramatically altered how they care for patients and residents. And for good reason. With horror stories from group homes where the virus spread like wildfire and left a wake of casualties, it was prudent at the beginning of the outbreak for government regulators and facility operators to institute airtight lockdowns of residents and patients in assisted living and nursing care facilities.
It also made sense when some hospitals were overwhelmed with COVID-19 admissions and fatalities for the federal government “to allow staff to more efficiently deliver care to a larger number of patients,” as the Center for Medicare & Medicaid Services (CMS) explained, by waiving statutory requirements for hospitals to provide information about advance directive policies and end-of-life care. This little-publicized decision, also made in good faith, potentially undermined a patient’s right of self-determination on life and death healthcare decisions.
These emergency measures were intended to protect those most at risk of death from the coronavirus. And with over 50,000 nursing home resident fatalities from COVID-19 and a vast number of critical care hospitalizations, they were justified, and served a purpose. But do they now? Better systems are in place to test frequently for the virus and safeguard life for all confined to, or working in, long-term care facilities. While continued vigilance and common-sense measures to prevent the transmission of infectious disease are necessary, it may be time to re-assess whether these mandates properly balance public health and quality-of-life concerns. Three recommendations merit serious consideration.
First, just as restaurants once had areas designated for smoking and non-smoking customers, long-term care facilities can make accommodations for residents with opposing social preferences. Those elders who choose to assume the risk of visitor contact, or venture out into the public, should be free to do so and not face quarantine as a consequence. Dining and common areas can be designated for them and the like-minded to interact without compromising proper health precautions. Those residents who choose to minimize the risk of infection by continuing to isolate in the manner now required can be properly segregated in space that is sociallydistant from the less risk-averse.
Second, CMS not only should reinstitute the requirement that hospitals provide advance care planning tools, but incentivize the enhancement of these services. Helping families discuss end-of-life and critical care matters is vital because of the rational and irrational fears that now swarm the elderly and their families.
When conversations on critical care take place before a health crisis arises, patient-friendly outcomes, including peace of mind, follow. Our organization, through the Five Wishes program, has helped tens of millions of Americans with these discussions. The letter and spirit of the venerable Patient Self-Determination Act of 1990 deserves renewed attention by hospital and long-term care doctors, nurses, social workers, and caregivers.
Finally, a comprehensive survey of the level of happiness of America’s elderly in home or residential care settings, must be undertaken before government further imposes safety measures that rob their lives of humanness. Do they really want to live in a world where all smiles are covered by masks, grandparents are separated from grandkids, and hugging and holding are prohibited?
Without question, social distancing and mandatory masks reduce the spread of droplets carrying the coronavirus or other contagion. That was true before COVID. But at what cost now? Are we going to keep the elderly six feet away until they are six feet under? America knows the dismal statistics on the COVID death rate for the elderly. We know very little about how the increase of loneliness and cognitive decline, and the absence of loved ones by the bedside or dinner table, are affecting the well-being of elder Americans.
It is not enough for seniors, particularly those in long-term care facilities, to simply delay death. They must be able to live truly human lives where they can love and be loved. I have learned through decades of experience working with our country’s seniors that they crave accompaniment as they age. Technological advances, like telemedicine, Zoom calls and virtual entertainment have their place. But they are no substitute for human relationship.
The flu season and its dangers return in a few months. The government should consider whether policies that promote maximum security for our elders mean a de facto life sentence in maximum security.
Jim Towey is founder and CEO of Aging with Dignity, a nonprofit with offices in Washington, D.C., and Tallahassee, FL. He was legal counsel to Mother Teresa of Calcutta for 12 years, and he directed the White House Office of Faith-Based and Community Initiatives under President George W. Bush.