An excerpt from Alone and Invisible No More: How Grassroots Community Action and 21st Century Technologies Can Empower Elders to Stay in Their Homes and Lead Healthier, Happier Lives (Chelsea Green Publishing, 2011).
Whenever I engage in a detailed discussion about our core mission of helping elders remain in their own homes, invariably the conversation turns to liability. “Aren’t you afraid of getting sued if something bad happened while you were involved in an elder’s care at home?” “How can you prevent something untoward from occurring?”
Maybe my family practice medical training has made me more comfortable with uncertainty. Perhaps I am too laid-back about our litigation-obsessed and risk-averse society. In any case, I freely accept that any endeavor entails risk and the certainty that navigating the complex terrain of aging will regularly produce unexpected twists and turns.
“The dignity of risk” is a phrase that grew out of the experience of those who promoted the deinstitutionalization of the developmentally disabled during the 1970s. That entire cohort was deemed incapable of living on its own in the community. Many were thereby deprived of experiencing the richness of the full human experience. That richness included the opportunity to succeed or fail, and the opportunity to learn from that experience.
We must get away from our risk-averse stance where older individuals are segregated from the rest of the community, and severely limited in their living arrangements in order to improve compliance with medication usage, and theoretically improve their safety. What will we accept in return for not missing a dose of medicine? We adult sons and daughters have been brainwashed into believing that our parents are no longer able to live independently, and that we are not expert enough to help them navigate daily living. Too many of our parents are either meekly acquiescing to the choices we made on their behalf or are equally unable to assess the full future consequences of these decisions.
When we do get involved and make a series of sensible choices with them on their behalf, we are often surprised to find that something that we did not expect happens. Either a component works enormously better than we could have possibly anticipated, or an equally reasoned choice turns out to be a very bad idea. That is life. And whichever outcome occurs allows us to shape subsequent choices with the benefit of that previous experience.
To me that is the meaning of the dignity of risk. We do not have the option of saying we will only embrace a course of action if it is guaranteed to succeed. Like many challenges we faced raising our own children, this time of life requires making the best choice with the information you have at hand, and moving forward. As others who navigated similar paths in other fields have noted in many ways, we will learn from the choices we make, and we need to accept that.
Many years ago, I made a 95-year-old man cry. Stanley had been driving a car since the first horseless carriages arrived in South Bristol in the early 1900s. He’d never had an accident, and now as his family doctor, at the behest of his son and neighbors, I was taking his license away. “But I only drive a few miles,” he protested. Within a short period of time, he began to lose weight (due in part to not getting to the area lunch counter), and to neglect his own self-care more obviously (having given up on life in many ways). After a brief hospital stay, a move to a nursing home was advised. There he sat more than twenty miles from everything he valued.
One afternoon, perhaps out of guilt, while making rounds at his facility, I asked him if he wanted to go see his hometown’s junior high basketball team play my son’s team at the Great Salt Bay School. There was no hesitation on his part, and with a wheelchair and my signature, away we went past some disbelieving staff into the December darkness. I had not thought through what we were going to do, but I was confident we could figure it out. Getting Stanley into and out of my sedan was the hardest part. Rolling him into the gym and negotiating the bleachers was equally challenging. But the look on his face, and the size of his eyeballs, as we watched the game transcended any logistical problems. Watching for his great-grandnephew was completely engrossing. After the game, we used the opportunity to take a brief tour of downtown Christmas decorations, and then returned to the nursing home. For a few hours, he was reconnected to the rest of the community. He had stories to tell for the rest of his life. Could something unexpected have happened? Absolutely. Would I take such a chance again? Without a doubt.
Several years later, my wife invited many of the Hodgdon Green assisted-living home residents to a summer dance party at our barn. To our delight, up drove Gayle Yost, clinical-nurse coordinator, with the facility van filled with seven residents. Gayle was not intimidated by bringing frail residents out for an adventure on her own time on a Saturday afternoon. They were treated to Esther Mariani playing her electric guitar and singing songs from the Beatles to Tori Amos, a glass of wine or two, and a private belly-dance exhibition by Natifa Sakti. A couple of residents danced regularly on the dance floor, and everyone tapped their feet to the beat. They had a ball. Despite varying degrees of memory impairment, the specifics of that event were retold for weeks. Lack of staff, limited resident mobility, and a porta-potty made for some interesting moments that only embellished the event. Being risk averse would have deprived many of a very special afternoon.
The point of making so much of this discussion of risk is to reduce the likelihood that we as a society have to spend another thirty years retracing steps already traversed in the groundbreaking social movement of deinstitutionalizing those with developmental disabilities. We have now embarked on an elder-citizen movement to provide options to prevent institutionalization for them. It makes no sense to repeat the same mistakes we made with the developmentally disabled. Compared to the developmentally disabled population, this elder cohort, with its acquired limitations, generally is more diverse, more capable, and more accomplished. Yet the obstacles put in the way of letting them live in their own homes or of providing a more independent environment in residential-care facilities are no less formidable. It is critical that we move decisively to rectify this situation. As pointed out elsewhere in this book, our failure to do so will have profound consequences for all sectors of our society.
In the health-care field in which I work, an area of complex medicolegal decision making regarding advanced directives or living wills has been adequately handled by pre-printed forms where an individual can check a box certifying that they “do” or “do not” desire to have CPR performed, a shock delivered to restart his heart, to be placed on a ventilator, or to have intravenous fluids administered. He can also designate someone else to be his decision maker if he is incapacitated.
One’s decision to continue to live in one’s home is much less complexand more straightforward. One’s ability to ask for any service from a home care provider, technology provider, personal care companion, or home repairman should not be more problematic. Arranging these services and making these decisions are often complicated and occasionally mishandled by our elders. But these difficulties should not so often lead to the conclusion to move our elders into institutional care with its drastic consequences. Moreover we should not be confused by liability issues. Some liability burden should fall on the institution, the health care providers, and the family members that take older individuals out of their homes. The team and the approach that tries to assist them to maintain their preexisting living situation should not be held to a higher standard. There are opposing arguments that accompany complex decision making. But attempting to honor the deeply held wishes of one’s elders should not carry the majority of the burden of proof and liability.
Clearly with risk comes responsibility. The risks should be measured, the responsibility taken seriously. But to paraphrase Robert Perske, there can be crippling indignity in safety.
And so my message is simply this: Have the courage and the generosity to allow the elders in your life to live their remaining years as independently and freely as possible. Take the time necessary to listen to their concerns. They may scrape their knees, or worse, but they will be living—not just waiting to die.
Allan S. Teel is a family physician and author of Alone and Invisible No More: How Grassroots Community Action and 21st Century Technologies Can Empower Elders to Stay in Their Homes and Lead Healthier, Happier Lives.