When I was 23 years old, my mother died unexpectedly of a massive stroke in her sleep. She was only 62, and there was no warning.
One day we were talking on the phone about Christmas plans, and the next I was giving a police officer permission to break into my childhood home for a wellness check after she failed to report to work — the first time she’d gone AWOL in 40 years as a beloved, if curmudgeonly, public-school English teacher.
In the days and weeks that followed, multiple people attempted to comfort me with some variation of this thought: Yes, she died too young, but at least you’ll never have to see her decline. You’ll never have to take away her car keys. You’ll never have to wonder how much longer she can live on her own. You’ll never have to deal with the heartbreak of your own mother not remembering who you are, or asking why she has to live in this institution instead of going back to her real home.
It was cold comfort, but I’d seen enough relatives and family friends go through similar pain with older loved ones that I understood the logic behind it. In the moment, it may have simply been a way for people to salvage a silver lining out of a difficult situation, but I wouldn’t have heard it multiple times if it didn’t hint at some wider truth.
Those well-meaning words have stuck with me for nearly a decade now. I’ve heard them in my head almost every day since the start of the coronavirus pandemic, particularly as I’ve seen the countless news stories about seniors in isolation saying they’d rather risk death by COVID than spend another day locked away from their loved ones.
Those echoes have only grown louder as the narrative has slowly shifted from covering a crisis to calling for real systemic reforms that will ensure something like this never again happens in long-term care.
My mother won’t see me marry the fiancee I love, or hold the children we’d like to have someday, or travel the world in a well-deserved retirement after decades of hard, important work — but to some people, on some level, that’s not such a bad trade-off if it means never needing to set foot in a senior living or care property.
How do you fix a system that, even before a disastrous pandemic, was considered a fate worse than premature death?
Reform efforts up to this point have largely focused on a mixture of increased fines and value-based payment nudges, coupled with civil lawsuits. The new Medicare Patient-Driven Payment Model (PDPM) sought to eliminate the provision of profit-motivated therapy services by linking payments to resident conditions. Hospitals and Medicare Advantage plans demand ever-shorter lengths of stay as they seek to send residents home as quickly as possible — and spend less money on relatively costly nursing home care.
The SNF Value-Based Payment (VBP) model rewards providers for reducing hospitalizations, and punishes those who don’t — though with just 2% of Medicare dollars at stake, there might not be enough of a carrot or a stick to force substantial changes in provider behavior.
Even Seema Verma, the now-former administrator of the Centers for Medicare & Medicaid Services (CMS), acknowledged as much in a recent op-ed laying out a vision for reform that relies on compensating operators for achieving the best quality outcomes for residents.
“The answer isn’t more taxpayer funding,” Verma wrote in Newsweek. “Rather, we must fix how we pay for care. Currently, only about 2% of nursing homes’ Medicare reimbursement is tied to quality outcomes.”
It’s a noble goal, but in order to achieve it, we must be realistic about what quality outcomes look like for this population.
A hospitalization metric may work perfectly for a short-term, post-acute patient who’s looking to recover from hip surgery and get back to the golf course.
But the majority of nursing home residents, the people most directly affected by COVID-19 and countless other indignities before it, will never go back to the homes they once kept.
The little nursing and rehabilitation center, tucked away from public view, is the last home they’ll ever know. Quality outcomes for these most profoundly ill and vulnerable people don’t look like the metrics used in every other corner of health care — recovery, discharge, physical improvement — and, with the right mindset, that’s actually an advantage for everyone involved, from operators to residents to families.
While the federal government and providers have focused their attention on reducing hospitalizations and offering higher and higher levels of care, they turned away from the much simpler improvements that may not be cool or cutting-edge, but do more for the typical nursing home resident than any tech innovation or novel payment formula ever could.
For these people, quality looks like a fully staffed facility with well-trained geriatricians, registered nurses, and CNAs — all of whom are paid well with full benefits, so they don’t have to work multiple jobs.
Quality looks like private rooms with private showers and bathroom facilities that allow residents the core human dignity of bathing and using the toilet in relative peace.
Quality looks like welcoming common areas where residents can receive guests and recreate the simple, taken-for-granted pleasure of talking about TV or sports or politics over a cup of coffee and a scone at the local cafe.
Quality looks like an infection preventionist working day and night to keep viruses and bacteria, from COVID to the flu to C. diff to diseases yet discovered, out of the building — and quickly contained if they do find their way in.
Quality looks like a regulatory framework that puts residents’ right to visitations at the top of the priority list, along with physical safety.
None of these solutions is new or innovative or flashy, and that in part explains why they’ve never caught on. From nursing homes to private physician practices to massive hospital systems, we have collectively accepted that in the United States, health care is a business with a variety of investors — and forward-thinking investors demand new, exciting, downright sexy places to put their money, like the high-end “medical resorts,” aimed at younger post-acute patients, that dominate most ground-up development in the sector.
But there is nothing necessarily new and exciting about providing dignified, high-quality care for people whose conditions may never improve back toward a previous “normal.” And even when the government tries to prod providers along by attempting to align profitability with quality care, the initiatives often miss the mark.
Take staffing, the rare area that just about every observer of the industry agrees must be improved. Resident advocates and labor unions rightfully decry the fact that frontline caregivers are too often overburdened and underpaid. Nursing home operators routinely identify workforce shortages, including a lack of qualified applicants, as their top logistical and financial headache.
When residents and their families have good experiences in long-term care, it’s almost always because of workers who go above and beyond to make life a little bit easier for people in a difficult situation. Research shows that better staffing leads to better quality, and can even help facilities stem COVID-19 outbreaks if and when they do occur.
But CMS gives operators no direct incentive to improve staffing levels beyond mandated minimums. It’s true that staffing performance shows up on the consumer-facing Nursing Home Compare rating system, but so do multiple other factors — and a 2019 financial study found that direct investments in staffing have no impact on a given building’s profitability. In fact, there’s actually an inverse relationship between a nursing home’s staffing score and its financial health relative to its peers.
To be sure, quality care and resident satisfaction should be enough of an incentive to encourage operators to focus on developing and maintaining robust workforces. But as long as nursing homes — and health care at large — are subject to market factors, the government must make sure that those market factors move in lockstep with resident health and quality of life.
That’s why nursing home reform can’t just rely on outcomes. For this population, the inputs — well-paid staff, emergency stockpiles of PPE, brand-new buildings — mean more than the eventual output, which for so many will inevitably be a slow decline and death in the room that became their home by default.
Few people want to think about dying, and especially not dying in a nursing home. It means dying on someone else’s terms in someone else’s bed, fading away instead of burning out with all of your faculties still intact.
To the extent that we can provide compassionate and comprehensive care for the elderly and terminally ill at home, we should. But that won’t change the fact that some proportion of the population, through a combination of bad physical luck and economic reality, will need around-the-clock supervision in a nursing facility during their final months or even years on this earth.
We can choose to accept a society where the idea of dropping dead before your time seems preferable to growing old in the care of others, or we can supply the kind of long-term services and supports that strive toward the goal of dignity in aging.
It’s not necessarily exciting or #disruptive, but it’s vital — and, perhaps most importantly, it’s eminently achievable, as long as we aim our money and our effort at the right targets.
