I was working as a reporter in Texas when the pandemic began, where I spoke to the families of those in long-term care facilities and investigated the disproportionate death toll of coronavirus-infected residents in state veterans’ homes overseen by George B. Bush.
In reporting on those stories, I heard repeatedly from experts that aspects of the nursing home industry are broken and that it would be better to let people age in smaller settings or at home.
Those thoughts were rattling around in my head when I moved to a new job in Colorado, one of the fastest aging states in the country. When one of my colleagues saw a press release that suggested a 1,870 square mile rural county had been without a home health or hospice provider for the better part of a year, we thought it would be a good opportunity to write about the availability of these services in the state’s rural areas as baby boomers age.
Unsurprisingly, the picture is bleak.
It takes providers far longer to commute from home to home in a rural area, especially on roads that become treacherous in snowy and icy conditions. There is a smaller patient volume overall and it fluctuates based on need, making it difficult for a cash-strapped agency to retain the appropriate number of staff at all times. And providers make little more than minimum wage to offer intimate, hands-on care that can be emotionally draining.
All of this quickly became clear as I began calling various aging agencies across the state. But we [editors at the Colorado Sun] wanted to go beyond the numbers and policy statements to see what this all looked like on the ground.
We specifically wanted to describe these services in a way that’s relatable to everyone. Given Colorado’s aging population, the decision to seek hospice or home health care are choices that most people will eventually face, as is the possibility that the services may not be available in their home county. To that end, we wanted to frame the story not as something applicable to a subset of the population, but to a broad audience — one that may so far have avoided thinking about how they want to die.
Fortunately, the hospice patient we wrote about, Alta Sue, was comfortable speaking about death, her cancer diagnosis, a dark spell she’d had, and what she wanted in this last phase of her life.
I found that questions about her daily routine, items in her room and the chronology of her life provided a more poignant sense of what hospice offered her than direct questions about the value of the care.
We used the state’s database of licensed health care providers to locate hospice or home health agencies. But because some work in multiple counties, or are licensed in one county but offer virtually no services, it was not a precise gauge of access. In counties where I did need specific data, I turned to the local aging official, as they had the best sense of what services looked like on the ground. They were also helpful in explaining what happens — and where people go — if services are not available.
In Alta Sue’s County, for example, there is only one assisted living facility with a waiting list. There is no nursing home where she lives, meaning she and her neighbors have to leave the county (and often their family) to receive that care.
Elsewhere, people may end up in nursing homes, stay longer in hospitals or just go without services.
Something that stuck out to me while reporting was how frequently people mentioned their belief that society undervalues older adults, and that there is a need for more reporting on issues affecting this population.
To that end, there were a few ideas I came across that might be interesting to look at.
First, aging at home may require expensive modifications to houses, to add railings or wheelchair access and the like. How do people afford that?
And most caregiving is performed by family members. What is the economic impact of that, and what sort of respite do they get?