by Gene Coffey

I recently saw the movie The Savages, starring Philip Seymour Hoffman and Laura Linney, a story about two adult children trying to care for their sick father. The movie was well worthy of the two Oscar nominations it received (Linney for Best Actress, and Tamara Jenkins for Best Original Screenplay), but I was actually motivated to see it because of how closely the issues in the movie relate to my work.

I spend my days tracking changes to federal and state laws that impact access to long-term care services, and these days, a lot of the changes are designed to “rebalance” the delivery of long-term care from nursing homes to the community. Consumers overwhelmingly prefer community-based services, but federal and state programs serving those in need of long-term care have historically relied on nursing homes for delivery. From the perspective of the policymakers, however, a change is necessary, because our aging population is about to explode, and with that will come a dramatic increase in the demand for services.

Congress has amended both the Medicaid Act and Older Americans Act within the past few years to provide more opportunities for home and community-based long-term care services, which generally come at a lower cost. Consumers, their family members, and aging advocates all welcome the expansion of opportunities, and “public stakeholder” partnerships are forming (as actually required by the relevant federal laws) between these public groups and the state and federal officials implementing the new programs to ensure that the goals of these programs—primarily to allow our aging population to choose their own services and “age in place”—are actually realized.

But this does not necessarily mean that nursing homes are soon to be relics of the past. Indeed, more than a million people are still in nursing homes, and the numbers are increasing, even if the percentage of people in need of long-term care entering nursing homes is declining.

In The Savages, nursing facility care is in fact what is chosen for Lenny, father to Wendy (Linney) and Jon (Hoffman). The story is about the adjustment the two siblings make to their lives after they are suddenly thrust into a caregiving role for their estranged father (played by Philip Bosco), who was forced out of a retirement community in Arizona and moved by Wendy and Jon to a nursing home in Buffalo. It is one very depressing movie, although the story is very real. I truly enjoyed the film, and what stood out most for me during the movie was Wendy’s purchase of a red pillow and lava lamp from Urban Outfitters for her father’s nursing facility room.

Why does she do it? Though Wendy has been estranged from her father for years, she has become very concerned about his well-being, and in her effort to make her father’s life as comfortable as possible, she becomes acutely aware of his surroundings. Her father’s nursing home is a dreary, sterile-looking place, and his room is indistinguishable from one you’d find in a hospital. The surroundings are so dismal that it strikes Wendy that the environment might actually be harming Lenny’s health. And so she goes to Urban Outfitters.

The effort itself is a poignant display of the care she has for her father, but what is more important is her motivation to buy the specific items she did. As she explains to Jon, the colored pillow and a lava lamp present a stark contrast to the sterile environment of his room, and provide some likeness of a home.

If you are ready to simply dismiss the likelihood of the items have any measurable impact on someone like Lenny, you ought to go buy Beth Baker’s Old Age in a New Age—The Promise of Transformative Nursing Homes.

Baker’s book documents a growing movement that challenges the unfortunately long-held belief that the “warehousing” of aging individuals who are dependent on others due to physical or cognitive impairments is an appropriate method of treating our aging population. As the thinking goes, individuals who have developed dementia, or who have extensive physical impairments, have, after all, lost their ability to work, as well as that one “thing” we value so highly in our society—independence. So, really, let’s call a spade a spade, and consider that there really isn’t much else we can do with these people. And think about it—many of them are very frail and just happy enough to be without pain, and others are not really all that aware of their surroundings, so they’re not too upset to be there, and while the facilities may not be attractive places, we can at least say that they serve their practical purpose, right?

The question for anyone who maintains this thinking is simple—do you want to be a nursing home one day? Baker titles her first chapter after one of the most oft-heard refrains of parents for generations: “Promise Me You’ll Never Put Me in a Nursing Home.” This plea is partly grounded in a fear that, if we do end up in a nursing home, we may very well be fully aware of the misery of our environments, and suffering because of it, even if we are in fact lucky enough to be without pain and with our overall physical needs taken care (which, as Baker documents, is historically not something nursing home residents have actually been able to count on).

Again, more home and community-based opportunities for receiving long-term care are developing, and more innovative ideas on how to deliver noninstitutional care will undoubtedly surface in the coming years. Baker herself notes that many people whose medical conditions would in the past have meant nursing home placement are now receiving services outside of them (e.g., assisted living facilities).

Baker states that her work is based on the reasonable assumption that “we will continue to need places where elders live, beyond their own homes.” What her book does from there is provide some evidence that this might not necessarily be bad news. This is because of a growing commitment within the industry to change the culture within nursing homes, and one of the primary features of the change is exactly what Wendy tried to do for Lenny—make him feel at home.

Baker cites to anthropologists, psychiatrists and aging experts on the value we humans place on “home,” and notes how the “longing for home reverberates” in works ranging broadly from the Homeric epics, the Wizard of Oz, Huck Finn and the Lord of the Rings. She goes on, “The narrative separation from home, initiation, and return to home echoes throughout the history and cultures, according to Joseph Campbell in The Hero with a Thousand Faces. Heroes have adventures, slay dragons, gain power or wisdom, but in the end, they head home.”

This ingrained longing for home does not simply apply to a small geographic area, but to the items we have in whatever abode we label “home.” Baker relates an exercise she undertook in which she listed all of her favorite belongings, and then crossed off each one that would not be permitted in a nursing home. She was in tears by the end of it.

Is it any wonder then, Baker asks, that nearly half of the residents of nursing homes, who have had to leave their homes and enter facilities bereft of any semblance of home, suffer from depression? For many in the industry, it is not, and many of them are working to change it. They are creating “homes” within their facilities. Home certainly begins in part with the addition of the lava lamps and red pillows, but it also extends to those other “features” of home that we take for granted, like having the freedom to eat when we want, make our own choices about when we go to bed and when we get up, and having a reasonable amount of privacy. As Baker documents, some facilities have actually built small house-like structures within the extended grounds of their facilities.

These efforts are not merely scattered and individual, but are instead part of a very organized and coordinated movement. The Pioneer Network, for example, is a nationwide coalition of stakeholders dedicated to “creating places for living and growing rather than for declining and dying.” The Network recently hosted a sold-out national symposium in Washington, D.C. called “Creating Home in the Nursing Home,” and will host its Eighth Annual national conference this August (“A Call to Action”).

There is also the Eden Alternative, an organization devoted to having “elders live [in] habitats for human beings, not sterile medical environments.” The organization actually certifies nursing homes as “Eden” homes based on their compliance with certain standards. The organization is hosting its Fourth international conference this June.

What these facilities (and others that have no affiliation with either the Pioneer Network or Eden) have accomplished is, based on what Baker presents, truly extraordinary. It is indeed remarkable the differences that have been made for so many nursing facility residents across the country.

But challenges certainly remain. For starters, the preexisting nursing home culture developed over the length of a century, back to when poorhouses or “almshouses” sheltered aging individuals, persons with disabilities, and impoverished adults who were without work. Baker writes that they were “designed to discourage lazy people from gravitating to these,” so life was deliberately made unpleasant in them. I had read this before in Michael Katz’s In the Shadow of the Poorhouse, in which he describes how the “able-bodied” were eventually driven of these poorhouses, leaving ultimately the aged. As he puts it, “For the most part, poorhouses became old-age homes, which paid a high price for their origin.” Fully turning this century-old tide may take a little bit of time.

There is also the issue of government enforcement of existing quality of care standards. While some facilities are busy trying to accomplish culture makeovers, some still remain, in Baker notes, almost dangerous places to put people. A government-sponsored report last year found that a number of such nursing homes have been continuously given mere slaps on the wrists by the federal agency responsible for enforcement of federal quality of care standards. In other words, for some facilities, there is still a lack of an incentive to actually improve.

But putting these and other issues aside, the book provides a fascinating and encouraging look into what might fairly be called a revolution quietly taking place.

If we need any more evidence of the importance of the change, and the need for it, consider what happened in the aftermath of Wendy’s purchase of the red pillow for Lenny. Wendy visits her father and discovers that the pillow is gone. She begins frantically looking up and down the halls, interrogating staff and demanding that it be found, but then suddenly comes across a woman sitting by herself in a wheelchair alone in a hallway clutching the pillow. From the profile we see of this woman, it appears that it would have taken every last bit of energy she had to actually wheel herself into Lenny’s room, reach up to his bed to take the pillow, and wheel herself out. Nevertheless, no other explanation is given, so it appears that that is exactly what she did. All for one red pillow that was specifically purchased to help remind someone of home.