The past several years have led me farther and farther away from the pulse of activity relating to culture change in LTC. Although there is a part of me that misses being deeply involved, watching from the sidelines has given me a unique perspective on what is happening in the movement. I see an honest and earnest desire to declare victory in our struggle but, as long as we continue to segregate and institutionalize people who are ill, who live with cognitive impairment or who are frail– our work will be far from done.
Over the past two decades this struggle has introduced me to extraordinary people, people who continue to inspire me with their love, their energy, their creativity and their persistence. I have always felt honored to be in their presence. These people have and continue to fill my heart to the brim with gratitude and love. No one can deny that there has been progress in promoting a life worth living for those living AND working in LTC, but we have only begun to scratch the surface. The fact is that people are not meant to live and die among strangers. Surveys have repeatedly shown that a majority of Americans would prefer death to institutionalization.
Who deserves the blame for this injustice? No one person or organization can be held responsible for the mass institutionalization that has been visited on our elders over the past half century. The fault lies in cultural attitudes and bigoted assumptions about older people and, in fact, any group of individuals who are not seen as vibrant, active contributors to society. Our society sees people living with limitations as being less worthy and our culture pressures us to segregate them from the ordinary rhythms of daily life.
Although I have given years of my life to the effort to reform long-term care it now seems to me that the act of knocking on the doors of nursing homes and asking folks to embrace culture change in it’s many colors, shapes and forms is insufficient to the magnitude of the challenge we face. The problem is much bigger than we supposed and so our goals must also be BIGGER. Good people have poured years of their lives and blood, sweat and tears into the effort to change the culture of long-term care. Have we made a difference? Yes we have. But when the truth is told it becomes clear that we have impacted only a tiny fraction of the long-term care industry. Almost all American nursing homes continue to operate as institutions. Out of the 15,000 nursing homes across the country, in how many can you honestly say you would happily choose to live? Even if the answer is one, ten, a hundred, or a thousand, that is simply not good enough.
It’s time to take a close look at our impact and then ask some hard questions. Have we “raised the bar” in our field? I argue it is still not high enough. We know that there are still many institutions out there that have ignored the culture change movement all together. It is time to shift our focus to truly celebrating the value of every single living and breathing soul and honoring their right to a meaningful life as full members of our society.
There is much more work to be done and the question remains — are we in a position to fundamentally reform the vast majority of nursing homes (most often against their will)? I am gradually becoming convinced that the realization of our shared goals will require us to widen our gaze and create a broader coalition of people and organizations.
A better future beckons us, if we can hear its call. The future lies not with the institution or facility, but with the family and the community. It is in those domains that we will find our most lasting and meaningful success.