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Pioneer Network's "Color Book" Series

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Meeting of Pioneers in Nursing Home Culture Change
March 16-17, 1997
Rochester, New York

Leaders of four pioneering approaches to culture change in nursing homes met March 14-16, ]997, in Rochester, New York. The other 28 invited participants drawn from across the nation as well as the local area, were from the fields ofregu]ation and law, nursing home administration (administrators, directors of nursing and social workers), as well as advocates.

The goals of the meeting as set out by the funder, The Daisy Marquis Jones Foundation were:
  • identification by the Pioneers of what was common among the four different approaches;
  • identification of indicators of culture change;
  • guidance on the research, evaluation and assessment of culture change

Relationship: The Heart of Life and Long-Term Care
by Carter Catlett Williams

Once upon a time, there was an old man who went to live in a nursing home. He had a friend who visited him soon afterwards. At the end of the first visit, as his friend was saying good-bye, the old man held onto his friend's hand and said, "Come back to see me soon so I will know that I'm living."

But this is no fairy tale. It's my own, very real experience. This man was my friend, and it was my hand he clasped, and it was to me he said those words, "Come back to see me soon so that I will know that I'm living." This captures the feelings of thousands of elders across the country who enter nursing homes each day. Many, if not most, feel that to go into a nursing home is simply to wait to die rather than enter into another stage of life to be fully lived.

My friend had gone straight to the heart of the matter: When I am with someone with whom I have a relationship, I know that I am living. But, surrounded by people who are strangers, funneled into daily routines that are unfamiliar and uncomfortable, my life unknown to others, I'm not sure I am live. It's as though I have fallen out of life -- perhaps into a living death.

Here, at the beginning of this discussion, I state my conviction: relationships are not only the heart of long-term care, they are the heart of life. And life ought to to continue, wherever we live.


The Pioneer Challenge: A Radical Change in the Culture of Nursing Homes
Wendy Lustbader, M.S.W.

Imagine this — you live in a nursing home. You wake up when you feel like it. You summon help to get out of bed when you're ready to face the day. You wheel yourself a few yards down the hall to a family style kitchen for some freshly poached eggs, your favorite breakfast. You sit at a normal kitchen table with afew of your neighbors, and then take your coffee mug back to your room with the morning newspaper. After some quiet time with your coffee and newspaper, you let your assistant know that you will soon be needing her help getting dressed. You know each other well, because she is with you almost every day. You glance at the events calendar, but decide that you would rather stay put the rest of the morning after you stop in at the community meeting. Your assistant promises to remind the afternoon staff that later you'll need help getting over to the child care center, as today is your day to read stories to the children. Right before dinner, you'll have a glass of wine with a friend who visits from another floor and with whom you've had this daily ritual for the past year. At night, you're likely to get caught up in a novel and read past midnight, glad that you'll be able to sleep in the next day if that happens.

Spontaneity. Self-direction. Relationships. Community. Privacy. Meaning. Why do these qualities not describe a typical nursing home in America? Why must we forfeit the basic freedoms of life when we become frail and need assistance? Instead, the acute care model has been dominant in nursing homes for decades. This model is essentially a control model, e.g. the providers of care do what they see fit to ensure residents' health and safety. Instead of addressing the meaning of the lives of those who become frail, we have narrowly limited our society's resources to address only the physical concerns of residents. We have centered our efforts on quality of care, largely to the exclusion of quality of life.

In places where care is provided on a short-term basis, taking control over someone's life may make some sense. Acute conditions require intensive management, and doctors and nurses possess specialized knowledge that people need in critical situations. Under these circumstances, we surrender a certain degree of our right to self-determination in the hope of getting better and returning to our lives in the community. The error was to transfer this model of care to a setting where it is not necessary and where people then experience a fundamental and ongoing loss of control over their lives.


The Sanctity of Life and the Sacredness of Death:
A Journey of Putting Pioneer Values into Practice

by Rev. Julie Berndt

Values in practice are at the heart of the work of caring for elders. If you talk with staff involved in long term care for decades, time and time again the discussion returns to the power of the relationships that were built: resident with staff, staff with family, resident with resident and staff with staff.

What is remembered over the years are the stories of these relationships; stories that bring laughter, stories which bring tears because life in a nursing home or community where elders live is all about relationships. Quality care, as well as quality living, happens when people are connected to one another.

"I know that how you remember and take care of my neighbors is how you will remember and take care of me."  — Edith Keller, age 93