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The Green Book

Tbe 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.