Nora’s Corner

Nora Gibson

Autonomy is Not Reserved Just for the Healthy Young

I’ve been listening to interviews with Dr. Atul Gawande, a surgeon at Brigham and Women’s Hospital in Boston. He’s also a science writer for The New Yorker and book author. This fall, he released his fourth book, “Being Mortal: Medicine and What Matters in the End.” He writes about our country’s medical model and its persistent focus on extending life without considering its quality.

Most interesting to me is his discussion about our long-term care system, where elders must often sacrifice choice in the name of safety. He points to personal experience with his wife’s grandmother. After moving into a care facility, she quickly lost her autonomy and was disallowed to make simple decisions about her daily activities, all under the facility’s guise of “making her safe.”

Dr. Gawande describes what life is like when you are not allowed to go into a kitchen and get what you want when you want it; not being able to eat a cookie because you might choke or see a rise in blood sugar. Noting how facilities are marketed to the children of potential residents, one expert told him: “Safety is what we want for those we love and autonomy is what we want for ourselves.” He believes an admirable goal of care should be “as good a quality of life all the way to the very end of life.”

I was very touched to listen to his words because they embody the spirit and goals of Full Life Care. We engage with people experiencing significant losses and disability – including those with terminal conditions – and we keep their priorities first and foremost as we journey with them, often all the way to the end of life.

At our small assisted living homes, Gaffney House and Buchanan Place, autonomy and choice are afforded to the residents, all of whom are living with Alzheimer’s or other dementia. Some residents are exiles from facilities where they “broke the rules,” perhaps a rule that forbids wandering around, indoors, at night. In this case, we acknowledge that it’s the residents’ home, and our response to them is simple: “May we walk with you, and enjoy the evening together?”

Most people want to age at home as long as possible, and Dr. Gawande notes that this can be successful because you’re not ceding your authority. When you bring in services like home care, autonomy and choice are maintained because “you make your own rules in your own home.”

Full Life Care’s focus has always been on enhancing quality of life and supporting people living with their families and in their communities. Because our roots are not in an institutional or residential model, we have naturally evolved into an organization that acknowledges risk as a part of living; enjoyment in life involves being able to make choices. From our memory care homes to adult day health care to home care, our goal is to offer compassionate support for, but not control over, people’s lives. We are always striving to find the delicate balance where personal choice is always included in the conversation about health and well being.

Of course, not every care situation is perfect all of the time, but that’s simply part of being alive. We all deserve to have our personal priorities acknowledged and respected. In the end, I think that’s what matters.

Comments? Contact Nora at norag@fulllifecare.org.

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