After a working for many years in early childhood and parent education, I took care of my mother and mother-in-law in our home for six years. Feeling like I was “in the slow lane” with “the ladies,” I was delighted to see an ad in the paper that said something like, “One night a week forever and you can get a masters in gerontology.” So I completed an interdisciplinary masters in “Gerontology and Organizational Change” and have connected with the “culture-change movement” in long-term care which—guess what?—is trying to make assisted living and nursing homes less institutional and more home-like, providing care that is less medicalized and more person centered and relationship based.
These are just a few of the parallels between what LifeWays is trying to provide in the early years and the revolution needed at the end of life. For about the same length of time that LifeWays has been working in early childhood, organizations such as the Eden Alternative and the Pioneer Network have been trying to bring similar reforms to long-term care by making facilities more home-like–not only in appearance but in granting more autonomy and control to the residents themselves.
It probably isn’t surprising, then, that a similar discussion is going on in eldercare as in childcare around the issues of safety and risk. Dr. Bill Thomas, who founded the Eden Alternative to create more living and livable environments by bringing children, animals and plants into long term care facilities, first discussed the concept of “Surplus Safety” in 2010. Allowing greater autonomy and choice has become a central philosophy for culture change advocates and a core component of creating a life worth living in nursing homes and other long term care settings.
Thomas and psychologist Dr. Judah Ronch insist that the real definition of risk must be expanded from the purely negative to “the possibility of an unanticipated outcome.” This leads to two kinds of risk: downside risk is an outcome that is worse than expected and upside risk is an outcome that is better than expected. The obsession with downside risk unfortunately leads to the taking away of any chance of upside risk for those living in long term care environments and prevents outcomes that are better than expected. They point out that we do not restrain toddlers as they try to learn to walk because they might fall. However, because the current conception of risk includes only downside risk – in which harm may come to frail elders if they attempt certain activities such as getting out of bed – it has resulted in very restrictive policies and practices, such as bed and chair alarms.
For example, elders used to be physically restrained (“tied down”) to keep them in chairs or beds—to keep them from the risk of falling. Unfortunately, the use of restraints virtually eliminated any opportunity for the elder to experience the benefits associated with the upside of risk. In this case, the upside includes such things as the ability to ambulate, the ability to remain continent, the ability to sustain independence, good circulation, etc. While physical restraints are no longer allowed, residents are still restrained by alarms that alert staff to come and put them back into the chair or bed.
Thomas and culture change advocates point out that risk is essential to growth. When we remove any element of risk, our elders cease to grow. Our risk management efforts focus on “downside risk” at the expense of “upside risk.” This risk management mindset mirrors the survey process which focuses on eliminating downside risk. If an elder’s right to folly (make mistakes) is removed, their freedom is also removed. Their freedom to grow and learn disappears as well.
Another example of “surplus safety” with children occurred last year in the next two over from ours: the housing association of a condominium community declared that no children under age 16 could be outside without being accompanied by an adult. This being Colorado, which is very allergic to “the nanny state,” it was all over the papers and television, and the association had changed its rules by the next day. Sigh.
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For anyone who would like to learn more about the movement dedicated to “changing the culture of long term care,” see www.pioneernetwork.net or www.edenalt.org.
Rahima Baldwin Dancy has worked throughout the lifespan as a midwife, early childhood and parenting educator, gerontologist and natural deathcare advocate. She is the author of You Are Your Child’s First Teacher and a member of the LifeWays board.