I have been researching and writing about long-term care of older people for about forty years. My epiphany came about ten years ago when my mother had a stroke. My sister’s and my three year adventure sowed me that even with a dedicated caregiver (my sister) and an expert case manager who knew lots of people in the field (me) and a reasonable pool of financial resources we could not get the care we wanted. If it doesn’t work under those circumstances, I have to conclude that the system is broken.
You can read about our frustrating encounters with the system in It Shouldn’t Be This Way (Vanderbilt University Press, 2005), but a few observations are worth making here. The care system is not a caring system. It is driven by caution instead of imagination. Safety is an overvalued commodity. As a result of risk aversion, older people are deprived of many activities and subjected to unnecessary suffering.
Let me give you an example. Our mother had dementia (we never knew—and frankly did not care—whether it was Alzheimer’s Disease exacerbated by the stroke or a direct effect of the stroke). She had a fixation about needing to go to the bathroom all the time; it seemed driven by anxiety. She was living in an assisted living facility on Long Island (New York) near my sister. She fell frequently. If she injured herself in any way, the risk averse staff would call the EMTs lest they be accused of neglect (and someone else can then manage the problem). EMTs are also risk averse; their response is to bring the patient to an emergency room for an evaluation. As a result, our mother would be taken by ambulance to the emergency room with bruises. Needless to say, she was not a high priority patient there. The assisted living facility would call my sister who rushed to the emergency room to find this old lady, confused and agitated, lying on a gurney (those wheeled carts they use to move patients) screaming about needing to go to the bathroom. After each of these visits it took several days for our mother to recover her cognitive function back to its baseline.
We approached the assisted living facility and offered to sign a waiver of liability to avoid calling the EMTs unless there was evidence of serious problem like a fracture. They said they could not do that. They would still be at risk and they would be criticized by external regulators. So our mother became a frequent flyer to the ER, and we watched hopelessly.
Another example. In the last months of her life (as it turned out) we lost our battle to keep her out of a nursing home. We found one that was reputed to be one of the best in the area. I visited with the medical director, who knew me by reputation and was certainly eager to please us (even more so because we were paying privately). This was a full-service facility with its own medical staff on clinics on site. They noticed that our mother occasionally choked while she was eating and were concerned about the risk of aspiration pneumonia from inhaling food into the lungs. They did a relatively simple test called a barium swallow that followed the food as it was ingested and discovered that she did indeed have some swallowing problems. The response was to put her on a soft diet with thickened liquids. This meant that one of her few remaining pleasures was removed. If you want a disgusting experienced. Try drinking thickened hot tea. Food is rendered both physically and taste wise unpalatable.
We met with the medical and nursing staff and again offered to sign waivers of liability in case of an inspirational event (alas not the good kind). Once again, they said they could not care for her unless she was on this terrible diet.
In both instances, these were not mean or venal people. They were intimidated by fears of being seen as neglectful. They were, at least in part, the product of a regulatory system that has not been very effective but has certainly destroyed any lingering spirit of innovation. Frail older people are abused. They do need protection. But they also need the right to take informed risks. Simply dying with no bed sores is not the mark of a fulfilling end of life. We can and should be able to do better. That is why the subtitle to our book is “It Shouldn’t Be This Way.”