My great-grandmother lived to be nearly 107. She got tired of being half-blind, half-deaf and in a nursing home, so she announced she would give up eating. Her plan worked out great (though it would have gone faster if she’d chosen no water instead) and was in keeping with her strong ethos of self-determination. In fact, the autonomy and self-determination of the old is a current that runs through my family. They have wanted to stay home in their old age – which means family members or hired caregivers have provided support – and they have gotten their stated wish to die in their own beds far from hospitals. They eschew all forms of artificial nutrition and hydration. Now that Do Not Resuscitate orders are a thing, they put those and advance directives for health care in place as well.
None of this explains why I love old people. I love them because they have given me so much love. I love them because they’ve been such wonderful friends to me and such amazing links to the past. The great-grandmother who lived seemingly forever was born soon after the Civil War, drove around St. Paul handing out illegal birth control information with her pal Margaret Sanger, and briefly became a Communist before the horrors of Stalinism were well known. The next generation – my grandparents and great-aunts and -uncles, taught me about what they had personally experienced, including the 1906 San Francisco earthquake, the influenza of 1918-1919, the Great Depression, and World War II. Believe me, that generation of women never saw a paper bag or rubber band that wasn’t worth saving, as they had lived through times when you couldn’t afford to throw anything away.
That generation also witnessed massive societal change, including in medicine. After World War II, they witnessed the mass building of hospitals. After that, when the federal government recognized that it didn’t work very well to warehouse old people who needed extra care in hospitals, we built massive numbers of “nursing homes”. The younger generations got used to having more freedom – and also needing two incomes to support a family -- and it became more normative for old people to live in senior living communities and what came to be known as “assisted living”. It seemed like a good thing at the time.
Fast forward to now. Facilities that provide nursing services to old people are overpriced, understaffed, and often unsafe. A whole lot of old people depend on Medicaid to pay for their care in these facilities, not because they were poor to start with. They got poor – trying to survive their old age care needs.
And how do we treat them? It turns out that we treat our toddlers better than we treat our parents and grandparents. If a child care facility is found to be unsafe or an immediate risk to children, it may well be closed immediately and its license revoked. In contrast, nursing home safety lapses much more often result in wimpy fines and vast opportunities for remediation, some of which never come to pass. According to Kaiser Health News, almost two-third of the nursing home in the US have been cited for violating infection-prevention standards in the last four years alone.
The harms of this sort of care facility have been studied. A federal study (by the Dept. of Health and Human Services) determined that 22% of Medicare patients at “skilled nursing facilities” nationwide suffered “adverse events”. Another 11% suffered “temporary harm”. Nearly 60% of these harms were “clearly or likely preventable”. Imagine you and I are lucky enough to grow old. We are in one of these facilities. Our odds are 1 in 3 of suffering: medication-induced delirium, a fall or other trauma, or an infection related to our care. Gee, where do we sign up?
A huge lobby is in place to make this status quo both accepted and normative. Facilities are often understaffed and the staff are so underpaid they have to work in more than one facility to make ends meet.
Enter the Covid-19 virus, and a new level of disaster has struck:
· As of earlier this month, a third of U.S. Covid-19 deaths were long-term care facility residents.
· In some states (including mine), half of our dead were residents of these facilities.
· African-American and other patients of color in these facilities have died at shockingly higher rates, revealing yet again just how bad our race-based disparities in care are in this country.
· Families have been cut off from their loved ones, unable to see them or even in some cases to bring them home. The care facility has become a sort of prison. Sometimes there is no goodbye at all, or goodbye over an iPad.
· Some care facilities were forced to accept patients with active infection even though the facilities lacked adequate protective gear, staffing, or ability to keep sick residents from infecting healthy residents and staff.
It’s easy to throw up our hands and say we can’t make this better. But the fact is that we can demand we treat our old people as well as we treat our preschool children. We need to spend more money as a society so that old age isn’t bankrupting people and their families. We need to commit to providing the level of care we will want if and when it becomes our turn.
First, however, we have to work on our attitudes. If you’re old enough, you may remember the early days of the H.I.V. epidemic. When the public thought – and the press was happy having us believe – that it was a “gay man’s” illness, there wasn’t much compassion, funding, or care. In fact, we were cruel. And it’s easy to see how that “it’s not us” mentality comes around again. Consider this headline in the Washington Post two months ago: “It isn’t only the elderly who are at risk from the coronavirus.” (We know now how true this is, as young healthy adults have strokes and children are experiencing a mysterious Kawasaki-disease like illness related to Covid.)
But the point is: how much do we care about our old people? What if the old people are us? As my beloved 90-year-old great aunt once told me, when you shut your eyes, you are timeless. You are every age. You want the respect, care, and autonomy that every person does. I hope we can take this time of recognition of flaws in our health care and elder care, and commit to working for deep systems change. If we could build all those nursing homes in the first place, we can darn well tear them back down and come up with a better model. Smaller, home-like settings. More federal money committed to caring for our old people. Treating the old as we want to be treated when our turn comes. One thing that is very clear to me from the last two months: many young people in our country deeply love their old people in care facilities. Let’s make our love manifest.
(Photo credit: Paolo Bendandi / Unsplash)