The moral and societal imperative to fix long-term care

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The way long-term care is financed, delivered and regulated is “ineffective, inefficient, fragmented and unsustainable.”

That’s the polite conclusion of a new 605-page report by the U.S. National Academy of Sciences (NAS).

“Polite” because the blue-ribbon panel charged with proposing reforms to the long-term care sector in the wake of the COVID-19 pandemic left out the word “deadly.”

In the U.S., a mind-boggling 149,000 nursing-home residents and 2,200 staff have died of COVID-19 to date, a massacre of ageist neglect and indifference.

In Canada, shamefully, governments have chosen willful blindness. But, according to data assiduously collected by Quebec City journalist Nora Loreto, there have been 20,499 deaths to date in institutional care (along with 70 health care staff).

The new U.S. NAS report, entitled “The National Imperative to Improve Nursing Home Quality: Honoring Our Commitment to Residents, Families, and Staff,” doesn’t tell us anything new, but it does a nice job articulating the major problems and recommending solutions.

The situation in nursing homes was dire before COVID-19. What the pandemic did was lift the veil on long-standing systemic failings and remind us that the solutions required are systemic.

The long-term care sector is virtually identical in the U.S. and Canada – a disjointed mess of for-profit, not-for-profit and government-owned institutions with inadequate staffing, poor infection control, lack of oversight and a host of other deficiencies that became even more glaringly obvious during the pandemic.

The U.S. has about 1.7 million long-term care beds in 15,000 homes; 69 per cent are for-profit, 24 per cent are not-for-profit and 7 per cent are government-owned. Total spending: US$172.7-billion.

Canada has 198,220 long-term care beds in 2,076 homes; 29 per cent are for-profit, 23 per cent are not-for-profit and 46 per cent are publicly-owned (around 2 per cent of ownership is unclear). Annual spending: $13.6-billion.

The NAS committee stressed that change is required urgently in the fragmented long-term care system, especially given the growing complexity of care and the demographic pressures that will increase demand, and make it more difficult to find and retain workers.

The report noted that fully half of 65-year-olds alive today will require nursing home care before they die, and that the fastest-growing demographic in society, 85 and older, will double in size by 2035.

One interesting approach taken by the committee was to frame its recommendations as a means to achieve seven critical goals:

1. Deliver comprehensive, person-centred, equitable care that ensures residents’ health, quality of life and safety;
2. Ensure a well-prepared, empowered and appropriately compensated work force;
3. Increase the transparency and accountability of finances, operations and ownership;
4. Create a more rational and robust financing system; long-term care is costly and public funding is inadequate;
5. Design a more effective and responsive system of quality assurance;
6. Expand and enhance quality measurement and continuous quality improvement (measure what matters to residents, like their happiness);
7. Adopt health information technology in all nursing homes.

But, if there is one thing the report stresses, it is that reform must begin by improving the work environment: “Residents of nursing homes need better care – and the people caring for them also need better care. We will not realize good-quality care of residents until we invest in the bedside staff who care for them.”

Nursing homes need to not only be care facilities, but homes. We need to rethink design to create smaller, more dignified environments. They need to be connected to the community.

Nursing homes should be places where people want to work and want to live. (And for the record, those places do exist: in both the U.S. and Canada, long-term care homes for veterans are known for their quality.)

The report also stressed what could be an eighth goal: the need to change societal views on aging. Living a long life should be celebrated and revered, not dreaded.

Time and time again similar recommendations have been offered up. Political promises have been made, and reneged on repeatedly.

So, in the wake of the horrors that unfolded in long-term care during COVID-19, will we finally see long-overdue change? Is it actually possible?

It won’t be easy, given limited resources, competing priorities and the complexity of system change. But the committee answers the question well:

“The recommended approach is bold, but it is possible. But most importantly, it is right. Indeed, improving nursing home care is a moral imperative because it is clearly the right thing to do. It is also a national imperative because it represents society’s commitment to caring for those who cannot care for themselves.”