Advocacy, Toward better care, Videos

7 reasons behind institutional care fails

Besides the MyAlzheimersStory FB page, I also started a FB group called Report Elder Neglect and Abuse where members share stories (their own and others’) of elder neglect and abuse– sadly, there are far too many of them.

When someone posted a story on pressure sores, not unlike this one from one Lori Dekervor who found (almost by accident) a stinking, gaping, infected hole at the base of her father’s spine, one of the group members shared her own experience:

“This happened to my dad who was in hospital for rehab. In two weeks we went from great skin to bone exposed bedsore. Mom was there everyday. I was there four times a day. His room was across from the nurses station. How could this have happened?”

The answer is at once simple and complex. Visitors see only the uncovered/exposed parts of the body (usually face and hands, sometimes feet), whereas care workers (CNAs, PSWs, etc.) and nurses see the unexposed bits (i.e. most of the body). No one goes from unbroken skin to bone-visible bedsores overnight, although it only takes a few hours of not being turned for a sore to begin to develop

Here’s how my friend Gail Weatherill, The Dementia Care Nurse, responded to the post:

“There is no reason, NONE, ZERO, NADA for a person in a building with 24-hour “health” care to suffer pressure ulcers. There are a million and one ways to prevent them. Makes me sick!”

I agree with Gail (who expands on the more global issue in the video at the end of the post). The way I see it, there are seven possible “explanations” for why pressure sores (and so many other institutional care failings), get to the stage that they’re bone deep and life-threatening:

1) Incompetence

The staff doesn’t see it because they don’t check and/or don’t know what to look for (in which case they are either overworked, incompetent or uninterested in doing the work, in which case the facility is negligent);

2) Ignorance

The staff sees it, doesn’t know what causes it, and does nothing as a result (in which case they are incompetent, and the facility is negligent);

3) Ignorant Inaction

The staff sees it, knows what causes it, but doesn’t know what to do about it and so does nothing (in which case they are negligent, and the facility is negligent)

4) Insufficient resources

The staff sees it, knows what causes it, knows what to do and don’t have time to do anything about it because they are overloaded (in which case the facility is negligent)

5)  Willful inaction

The staff sees it, knows what causes it, knows what to do, has the time to do it, and chooses not to do anything about it (in which case the staff is negligent and abusive and the facility is negligent)

6) Imposed inaction

The staff sees it, knows what causes it, knows what to do about it, and are instructed by facility management not to do anything (in which case the facility is negligent and abusive)

7) All or some of the above

A combination of two or more of the above over a period of time.

Canadian RN Sue Turner, who rescued her own parents from long-term care, adds this:

“Your “explanations” are accurate and beg the question: “Why do so many patients in nursing care facilities STILL get bedsores?” Either training is inadequate or workers are not doing their jobs or resources are lacking. It is a health care provider’s responsibility to be proactive.

There was a day when efforts to prevent bed sores were a basic and crucial part of patient care. Nurses were taught to check the skin for reddened areas whenever they bathed or turned the patient and patients were repositioned frequently. I remember when creams, special mattresses, sheepskins, wool pile heel and elbow protectors were used routinely for those at risk. No nurse wanted the shame of a bed sore developing on her watch! It’s the same old story. Hands-on nursing care, including regular skin inspections, requires time, manpower and training! Experts have estimated that bedsores cost the Canadian health system 3.5 billion dollars a year. Imagine how much good quality care could be provided for people in their homes for that price.”

I wish we didn’t have to imagine. I wish it were being done instead of being talked about, so that people wouldn’t suffer and sometimes even die from something that is preventable, and that the $11 billion and $3.5 billion spent annually in the US and Canada respectively on treating bedsores could be devoted to something else – like better dementia care. (Here’s one possible solution for bedsores for at home care).

But bedsores are just a metaphor. I also wish the seven reasons above didn’t equally apply to all kinds of other situations in institutional care. But the good news side of this coin is that identifying the causes is the first step to finding a cure for our failing healthcare systems.

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