Iowans want options for end-of-life care

Nobody wants to live in a nursing home.

Many don’t need to be. Most don’t want to be.

Yet 25,000 Iowans and 1.3 million Americans live in nursing homes.

During the 15 years we’ve worked on nursing home quality of care issues, we’ve never heard anyone say: “When I get old or become disabled, I want to live in a nursing home.”

Rather, we’ve heard of people telling their loved ones “Don’t ever put me in a nursing home” or “If I ever have to go to a nursing home, just take me out behind the barn and shoot me.”

These kinds of statements express a harsh yet very real sentiment; a deep-seated desire for some other option; for some other life ending.

These desires have become more pronounced due to the deadly impact of COVID-19 on nursing home residents, and recent stories coming out of Louisiana and others state — including Iowa — that describe appalling treatment of residents.

So what is it that people want? Based on what we’ve heard over the years, it’s three things:

1. They want to be well served in their own homes and communities — the place where they’ve lived their lives and where they’d prefer to see it end. They don’t want to leave all they’ve known to enter an institution where they risk being isolated, forgotten, and poorly served.

2. In those cases where nursing home care is essential, they want the facilities to be drastically different from they currently are. They want smaller, homelike places that provide more personalized and much better care, and treat all people with dignity and respect.

3. When their health severely declines, capabilities dwindle, quality of life is nothing near to what is desired, and they become an extreme burden to their friends or family, they want the right to make decisions, in consultation with their doctors and loved ones, about how and when to have their lives end.

Thankfully, there are signs of progress. For example, Congress is currently considering President Joe Biden’s Build Back Better plan to dramatically expand home and community-based services across the nation, and improve care quality by improving the jobs of those who provide it.

Additionally, there are nursing homes experimenting with non-traditional ways of providing service. They are taking existing large buildings and dividing them into smaller pods; utilizing what’s called “consistent assignment” — where the same staff members help the same people on an ongoing basis; building relationships and trust. And, they are training these staff members better and paying them more.

Another example: eleven states have now approved legislation that expands end-of-life options and medical aid in dying, the most recent being New Mexico earlier this year.

The old ways of providing care to aging Americans and people with disabilities haven’t delivered the results desired — for those being served or for the taxpayers who pay a good chunk of the costs. It’s time to insist on one thing — changing where the money goes.

If elected officials continue to direct dollars to what we’ve always had, then that’s what we’ll always get.

If, however, they decide to start allocating more dollars to home care services, to paying nursing homes for the quality of care they produce rather than the number of residents they serve, to beefing up programs that work to transition residents of nursing homes back to their own home and community, to have doctors reimbursed for supporting citizens in their end of life planning, etc., then we’ll see the results that people want.

Those we elect are investing in roads, bridges, broadband and other infrastructure. Why? Because these things aren’t meeting the needs or wants of the American public.

The same is true for nursing homes in America. The public is looking for vast improvements in those that exist, and expecting more and better options to meet their needs as they lose their ability to function independently.

25,000 Iowans and 1.3 million Americans are living in nursing homes. Many don’t need to be. Most don’t want to be. It’s time to invest in their lives and address their needs. Ask those you elect to do just that.

John and Terri Hale own The Hale Group, an Ankeny-based advocacy firm focused on older Iowans, Iowans with disabilities, and the caregivers who support them. terriandjohnhale@gmail.com