Consumer Education Changes the Game Where Care is Concerned
Yesterday, the Washington Post published an article entitled “Promise You’ll Never Put Me in a Nursing Home.” I agree with Dr. Bill’s Thomas’ assertion in this piece that having the right language for what we’re asking for is really the crux of the issue. What we typically react to is our fear of institutional care in general – not in terms of the building we live in, but rather the nature or quality of the care we experience. The truth is that care can feel “institutional” regardless of where we receive it. Care at home can feel equally institutional, if it is focused entirely on the trappings of the medical model.
Under most circumstances, the focus of care revolves mostly around the physical body. The emphasis may be on treatment and task-doing, rather than the needs of the human spirit or the quality of the relationships involved. The needs of the individual are sacrificed for efficiencies and productivity quotas. This is the institutional care that everyone fears.
Our job as agents of change is really to empower consumers to ask the right questions when seeking support for their care, wherever it’s delivered. In this market-driven economy, we know all too well that we vote with our dollar. Families prepared to articulate exactly what they desire when it comes to care are in a unique position to raise the bar of expectation. It’s our job to make sure they know that what they are asking for, beyond medical treatment, is a powerful sense of well-being. We need to feel well-known by those who care for us and to have the opportunity to develop meaningful connections with our care partners. We need to know that the care environment will genuinely support individualized care, our right to choose, our ongoing growth, and our sense of dignity, security, and purpose.
Recently, we at The Eden Alternative have had the pleasure to witness the power of consumer education in a national CMS funded grant project of ours. In Creating a Culture of Person-Directed Dementia Care, we’ve brought together teams of three from different nursing homes across the country for a learning experience called the Care Partner Workshop. These teams consist of a family member and two employees. They are learning to work together as care partner teams, each equally invested in understanding the tenets of person-directed care. Already, the family members are having an incredible impact on class conversations, feeling empowered by what they’ve learned. The bottom line is when “we don’t know what we don’t know” we can’t ask for what we want. These family members are showing us that education makes the difference. This is how we change the system.