PERSON-CENTERED, THE FINAL STORY - A JOURNEY, NOT A GOAL

Don't miss another article about the roots of the person-centered approach: 

 Doctor, I am So Lonely" The Power of Human Connection 

When I left you in my last article, we were still on the roller coaster of the “early” phases of a person-centered initiative (click HERE for Part One) We were about to embark on a small pilot program on one of the smaller units of the nursing home, this time explicitly fostering Person-centered Care. The plan was to bring residents and staff together for a constructive experiment in collaboration.

We (the Administrator, Director of Nursing, the Unit Head Nurse, and I) agreed that through the holidays and into January, I would be meeting with staff and residents to build mutual trust and to learn what improvements staff and residents might most want to pursue. As I moved forward, what I unearthed surprised me. 

I merely had to scratch below the surface to see that current circumstances and climate would not support a person-centered initiative at this time. Activities on the unit were limited to two per week. For the generally spirited residents, their mounting boredom had two results: a few residents began venting their frustration and fomenting still more unrest; while others kept more to themselves, either turning inward or decamping elsewhere in the building. There was understandably, a negative amount of community, if such a thing is possible. 

Though the floor nurse had suggested I get to know her staff better, she then let me know that staff didn’t have time to talk to her, let alone me. When I did talk to a couple of them, they smiled and nodded but seemed very nervous and all but one declined to ask questions. 

Both the head nurse and the activities person assigned to that unit declared that they had reached a limit with one of the residents who was openly promoting complaint fests and was emotionally abusive to another resident. The solution mentioned to me was to move the resident to another unit. Hmmm. This was consistent with a pattern I had at times noticed in some residents and staff to smooth over “problems” and to make nice, rather than look creatively for a customized person-specific opportunity. The quiet resident is not necessarily the happy resident, even if they say that they are. But problems can be opportunities if thought of in the right way.

I believe that a person-centered approach can, over time, heal even this degree of distrust and unhappiness. I believe it would have taken at least: a vital and stimulating activities program appropriate to the high abilities of the residents; time to talk with the staff to grow trust and foster curiosity about person-centered principles; support of staff in eliminating obstacles to their work and growing pride; and perhaps most essential, the visible presence, support, and participation by upper level administration.

But I would be remiss if I left you there, thinking that this was a failure. It wasn’t, and this another way in which my understanding of “person-centered” was deepened. My mentor on this project had told me repeatedly, “Person-centered is not about the goals, it is about the journey.” Even in my three years as Ombudsman I modeled the slower person-centered way of listening with eye contact and respect. I routinely directed conversation to inquiring into resident choices. None of us knows the difference we make as we move through our days, but I know my presence mattered to quite a few residents. Perhaps I even broadened the viewpoint of a few of the staff. I didn’t “get the results” that one might look for as a measure of success, but I know that that way of thinking never brings real success because real success isn’t a static end-point of arrival. It is an ever-ending evolving climate change. 

I will continue to support two residents who are now fired up by their participation in a state-wide coalition of nursing home residents. Their fire may be one more spark that will travel to ignite the spirits of others. That’s how culture change happens.

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WHERE MY RUBBER MEETS THE ROAD IN THE NURSING HOME

Greetings!

For those of you who have periodically enjoyed my MindfulCaregiving articles about Being and Doing in caregiving, I beg your indulgence as I digress a bit today from my usual style. I have entered a new and (to me) important phase in my mission to grow person-centered care. It is time for me to share my journey thus far with you, but if your taste buds are primed for a meaty article to sink your teeth into first, click here to see the one I just posted on Senior Health Weekly, 
 Doctor, I am So Lonely" The Power of Human Connection 

For those of you still with me, the last nine months have been an educational ride at a large county nursing home where I've been working for close to three years. We are now on the brink of a radically new phase of our person-centered initiative.

A little background: In 2009, when I learned about The Eden Alternative and their revolutionary approach to building community in nursing homes, I became certified as an Eden Alternative Associate, but what then? I didn't work in a nursing home as did my classmates, so I joined the flegling NH Culture Change Coalition to keep learning, and to look for a way in, to be DOING culture change rather than just talking about it. Culture change is an experience, not just an idea. When I first heard of the Office of the Longterm Care Ombudsman, I thought, Aha! A way to do meaningful work in a nursing home! I trained and became the Ombudsman for a large local county nursing home with over 200 residents. That was where my rubber met the road. I began to learn, ALOT! 

Over a period of two years, I walked the fine line between the needs of the residents and the limitations of the medical nursing home model, seeing the frustrations of both sides. I also found myself up against the stereotype of the Ombudsman as a policing force (not my style at all) but I supported a number of residents, learned what I needed to learn, and developed a groundwork of trust with many of the residents, staff, and administration. 

My belief that  What you look for, you get  grew. As a possibility-oriented person rather than problem-oriented person, my position eventually began to feel restrictive. When I admitted that it was time for a change, I offered myself to the administrator as a volunteer to begin fostering person-centered programming through the Activities Department.

Why the Activities Department? I see it as the not-always-acknowledged heart of the nursing home. The staff are trusted by residents. Starting by doing programming through Activities seemed to be a lower-risk point of entry than trying to jump right into Person-centered Care working with the nursing staff. I wanted first to give the residents the experience of being listened to and offered real choices based on who they were as unique individuals.

As a long-time student of change—my own, that of others, and of organizations—I have a sense of the complexity, breadth, and subtlety of true culture change, as well the many misconceptions about it. I also know that change is an organic process that usually takes time. When taken too fast and in a left-brained forceful way it can do damage. When taken slowly, it can evolve, as a garden grows.  

In my diary eight months ago I wrote:

It is perfect that I write this in early March, just as the weather warms and the tiny shoots begin to peek their head out of the garden—our first programming steps feel like warming the soil. A month ago, just about the time of Imbolc (the Feb. third celebration of the seeds beginning to move in the ground in preparation for spring) I began planting seeds with the residents of my nursing home, sitting one-on-one and feeling for their receptivity. A month later I met with a group of 15 residents and as I spoke, I saw the lights begin to come on, one by one. They said Yes to being considered The Resident Advisory Group for Personalized Activities Programming. It is also perfect that, as I write this, I am scared. One doesn’t begin this sort of heartful endeavor without trepidation. Tending to the environment of living beings is a humbling thing. I believe that one of the many prerequisites for participating in real culture change is personal vulnerability.

The next five months were a rocky road of unpredictable successes and setbacks. When the Activities Director quit unexpectedly, we forged ahead for almost three months with hardly any departmental support, though the staff did bail us out a couple of times, giving me a 3-minute crash course in nursing home protocol. The residents experienced participating in the blow by blow planning and execution of their ideas, and enjoyed seeing the results. By that time, the group had not unexpectedly dwindled and I took some time off to recuperate, but two residents who had caught the spark joined Seniors Aid New Hampshire, a coalition of over 30 New Hampshire nursing home residents committed to improving life for people in the state. They started a statewide petition letting residents raise their voices to change federal legislation that has allowed some residents to be denied their pain medication. (Click Here and scroll down to learn more.)

The new Director of Activities is Eden Alternative certified, as I am. Understandably, she is focusing on slowly building her program and her team. We have a shared vision but it quickly became clear that it was yet again time for me to reinvent my approach. The administrator and the Director of Nursing agreed that I could work with them to begin a small pilot program on one of the smaller units of the nursing home, this time explicitly fostering Person-centered Care. Stay tuned as we unroll yet another phase in this story of reinvention.

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THE ELDERCARE TIME CAPSULE

I've accepted the challenge! Throughout April, I'll be posting as a health activist writer in the #HAWMC (Health Activist Writing Month Challenge) by #WEGO http://blog.wegohealth.com/  Each day offers a unique prompt that will take us in a variety of directions. Let's see where we go! Here's the first one:

Pretend you’re making a time capsule of you & your health focus that won’t be opened until 2112. What’s in it? What would people think of it when they found it? 

In 2112 they would open my time capsule to find photos, audio clips and videos showing that we in 2012 respect our Elders less, and rarely turn to them for guidance. Many live in institutions, their lives driven by medical systems and routines. Photos are of people who have lived long lives, their faces often showing loneliness, helplessness, or boredom ("the three plagues", as identified by Dr. Bill Thomas). In one photo, wheel chairs are lined up in sterile hallways outside a bathroom. In another, generally kind, loving staff scurry through their duties, trying to keep up. Meaningful connection and listening to Elders is, apparently by necessity, given short shrift. But institutional living conditions are a good deal better than in 1912—far from ideal, but heading in the right direction. Of course in 1912 many more Elders lived with extended families.

Inside the capsule also are newspaper ads for anti-aging products and articles telling the story of a society with an aversion to accepting the realities of aging. Long-term care funding sources are drying up. However, the time capsule also reveals the beginnings of the movement that, by 2112, has changed all of that. Shortly before 2012, The Eden Alternative (www.Edenalt.org) went international, bringing to the Eldercare world the concept of person-directed care. (Why, wonder those in 2112, was it so radical that Elders should have a say in the quality of their lives?) The Eden principles include nursing homes and other care-partners focusing First on their residents and loved ones. Eldercare cultures had begun to shift in ways that made everyone happier and healthier. And conversations such as ChangingAging.org began to engage the culture as a whole in a new conversation, reinventing what aging could be.

Included in my time capsule would be a disk of YouTube clips of Greenhouse Project homes that are run in a person-centered way. An Elder, who has given up feeding herself and speaking, grabs the spoon from her son, and the video ends with her singing Amazing Grace.

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RESPECTING ELDERS

Bernie Siegel suggests in “Love, Medicine and Miracles” that it's the feisty, opinionated patient who stands the best chance of survival.

I recently gave a keynote address to a local caregivers’ expo. During the Q&A, one woman raised her hand and said, “What do You think about the way people talk down to old people?” I told her that it dumbfounds me, that I have no idea where people learn to think that’s the way to speak. And then I continued to wonder...

Why Do so many people talk baby talk to elders? Could an elder supreme court judge possibly enjoy being patted on the head? And for that matter, how do they get away with it? What keeps elder parents, pianists or Marines from kicking a few shins?

I remember when I would bring my still sharp Phi Beta Kappa mother out and about in her wheelchair, and doctors and other professionals would address me, speaking about my mother in the third person. Did they assume that her brain and self-respect had been gradually leaking away since she turned 70?

I guess people of my parents’ generation were so schooled in being gracious that they put up with such treatment without a fuss, but it’s going to be a bit different when the children of the 60’s enter elderhood. We broke the mold when it came to self-expression.

A nursing home filled with residents of the “Me Generation” will be quite a different story. We’ll be rebelling at every turn. We’ll be leading workshops to train the staff in providing truly respectful service. We’ll have a ringleader or two, and we’ll stage sit-ins at the nurses desk. We’ll demand that people knock before entering, bring breakfast only when we’re ready, and offer more opportunities for participation than sing-alongs and making cookies.

We’ll look for ways to improve the running of the place. We’ll take over the “activities program” and while we’re at it, we’ll come up with a different name for it altogether. Activities implies busymaking, as though all people need to feel enriched is to be kept active. We’ll have “life enrichment” programs maybe. Alive ‘n Kicking seminars. And if we can remember what we learned from Our elders, we'll do it with a bit of grace.

I daresay that "respecting elders" will mean something a bit different for us, the Boomers. It will mean something like listening to what we want, appreciating us for who we are, connecting with us on a personal level, and honoring our history.

If you were in a nursing home, what would you want your life to be like? What would you be doing? What new experiences will you be instigating? Who’ll be calling the shots for you?

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Person-centered Caregiving

I recently was asked by a local Hospice to meet with a patient (I’ll call her Ann) who had created a piece of artwork. They wanted me to consider writing an article about it, and her. She was a lovely, feisty woman. I met with her a number of times, taking notes as she spun out the stories behind the artwork and her process in making it.

Though the artwork had brought me to Ann, what became most important was Ann’s journey. I continued to write and will publish an article, but the point of our meetings became connection. The life of our budding relationship feeds the life of the article I am writing. When I stray to focusing on the article as an end in itself, the relationship Ann and I are building loses energy. When I focus on Ann, the writing comes to life. The life of both depends on the life of our connection.

This is a perfect analogy for caregiving. In the busy life of a family or professional caregiver, it can be too easy to forget, to mistakenly become too focused on the day-to-day tasks and agenda, and thereby sap the life of the human connection with a loved one, which is the true source of healing and wellness. Mind-body-spirit wellness. Excessive focus on the tasks of caregiving saps your relationship, and drains both you and the life of your loved one or client. Focus on your connection, in service to the wholeness of your loved one (as Rachel Naomi Remen would say) and you’ll find that you both have more energy. If you have neglected to make a bed, opting instead for having a good laugh together, good for you! If you are being drained by care giving, check out where your focus has been and change course.

This principle of Human Connection First, or Person-centered Care, is the core principle of the culture change movement in nursing homes that is radically changing the experience of living in long-term care. It is the catalyst of wellness for care receivers and givers. To learn more, check out the Eden Alternative (www.edenalt.org), The Pioneer Network (www.pioneernetwork.net), and the ChangingAging blog (www.ChangingAging.org) and his ChangingAging LinkedIn discussion group (http://www.linkedin.com/groups?mostPopular=&gid=2942890).

This movement was begun by Dr. Bill Thomas and is spreading, now backed by the federal government in changes in the annual nursing home surveys. Nursing homes are now being designed, architecturally and in management structure, to follow the Eden Alternative principles. The result? Some residents who have been walking with walkers, throw away their walkers. Others who have stopped speaking and feeding themselves sing “Amazing Grace” and grab the spoon. (See YouTube on “The Green House Nursing Home Alternative.” http://www.youtube.com/watch?v=l4Ap1ByNgKE ) Staff retention dramatically improves. And, miracle of miracles, it doesn’t necessarily cost any more than the old model. It actually can be cheaper. Read about the data in “Culture Change Goes Mainstream,” downloadable at http://www.linkedin.com/myprofile?trk=hb_tab_pro. The Eden Alternative also has a program for family caregivers.

As I write this, I am at home with the latest “bug” that has been going around. I had to cancel my visit with Ann and will deeply miss her this afternoon. We were going to play Scrabble together. When we do get to play, I’m betting that she will win.
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From Caregivers to Carepartners

When we begin to focus on Elders as people who continue to "grow and become," we open to what they have to offer us. Seeing Elders as mentors with something to give helps us make the leap from caregiving... to care partnering. When those usually described as care receivers learn they have something to give - and there is always some way that they can, no matter how subtle -and those usually described as care givers deeply acknowledge the ways that they receive from care receivers, some amazing shifts occur in the care dynamic. They become Care Partners."

Instead of seeing the needs of 'caregivers' as separate from the needs of 'care receivers,' we need to focus on the well-being of the whole care partnership. At the Eden Alternative, we firmly believe that words make worlds. Like the term 'Elder,' the phrase 'Care Partner' is an excellent example of the transformative power of choosing our language carefully. As a concept, care partnership evens the playing field, as it is often easy to get trapped in a one-dimensional experience of care. With this in mind, teams must fully appreciate what it means to be a care partner team. The term "care partner" should never be used simply as a politically-correct replacement for the words "staff" or "aide" or "caregiver/care receiver." Care partnership encompasses so much more, both in nursing homes and out in the larger community.

By our definition, a care partner team is composed of the following care partners: the Elder herself; those care partners who work with her, whether they work in a nursing home or through home health support; her family members, friends, volunteers, and any other health professionals that collaborate with her. Care partnering implies a balance of care, that opportunities to give as well as receive are abundant and experienced by everyone involved in the care relationship in every moment. To deepen the experience of care partnership, consider holding Learning Circles on the subject that bring Elders and all of their care partners together.


From the Eden Alternative Tip of the Week, 7/11/2010
Understanding Care Partnership
http://www.edenalt.org
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