For a several years I was family doctor to a lady I’ll call June Cunningham, who lived in an expensive private assisted living facility. June was an American Pollyanna of the frontier persuasion who would usually say something like, “Doctor, are you? I’m perfectly okay. Nothing wrong with me at all. Go find somebody who’s sick.”
But this dear lady was not okay. Dementia had caused her to think she was inChicago, to believe it was 1968, and to need to be re-introduced to me each time I visited. She got frightened and shouted, especially at night, and I had no choice but to give her some sedating medication at bedtime (on this topic, I respectfully ask you to have a look at the diatribe on my website).
June Cunningham’s other big trouble was that she fell all the time. She was stiff and awkward on her feet from bad Parkinson’s disease. Sadly, her dementia dulled the memory of that, so nothing we said to her could stop her from getting out of her chair, and falling on her face at the drop of a hat. Out of bed, in her room, in the hallway, getting up in the dining room, in the bathroom, you name it. How many times this week? Doctor, we’ve lost count.
Somehow she never got badly hurt (okay so she looked like she had just gone five rounds on Impact Wrestling) until one afternoon she whacked her neck tumbling backwards in the doorway of her room. The emergency room x-ray showed a break all the way through the little bone that connects the first and second vertebrae (which we call C1 and C2) just under the skull. This tiny important bone keeps those two spool-like spinal segments from sliding back and forth against one another, so they don’t slice off the spinal cord like a paper cutter, or at least squash it. Messages telling the lungs to breathe pass down the cord at that high spinal level, so if you cut the cord at C2 there’s no message, no breathing, and an alive helpless person in the terror of not enough air until she loses consciousness, and then dies. Four to six minutes to brain death and around eight minutes to cardiac arrest, we’re told.
The consulting spinal surgeon at the hospital was reasonable. He understood my patient couldn’t survive an operation to fix the bone, and thought there was a good chance the soft tissue around the spinal cord would harden up if we sent her home with a neck collar for maybe two or three months. As long as she didn’t fall again. I was happy with that and so was her family.
Trouble was, Mrs. Cunningham’s injury hadn’t changed her enthusiasm for jumping up and doing things, and for sure it hadn’t improved her insight into what would happen if she fell. I mean there wasn’t any choice: if we didn’t strap her into her wheelchair, within 24 hours she would drag herself up out of her wheelchair, fall, transect her spinal cord, and die a five-or-six-minute terrifying death.
What happens next is an illustration of how big healthcare organizations focus on safety, or to put it in their terms “risk management”. I wrote a doctor’s order in the chart: “RESTRAIN IN CHAIR 24/7”. Ten minutes later I got a phone call from the nursing home administrator telling me they couldn’t do that. It was against the policy of their international organization to restrain anyone.
Let me put this in perspective. Nursing homes here and in theUnited Statesin the middle of the 20th century were variable in their quality. The worst ones were stinking cash cows in which disabled old people were drugged, tied in chairs, straitjacketed in bed, and fed dog food. So rules were made in response to public outcry, which stopped a lot of that kind of abuse. But then human nature took hold and administrators, insurance companies, and facility owners got the message that they had better not be caught dead using drugs or physical restraint on old people, and these prohibitions were written into facility policies and procedures. Absolutely forbidden. No matter what.
Never mind that forming a relationship with an old person and their family, trying to understand and meet their odd personal wishes and needs, doing the daily detailed kindnesses that would make their life in an institution tolerable, and observing what we call common sense are what the best care in nursing homes consists of, this prohibition of restraint and drugs was about an insurer being able to point to rules on paper when crabby relatives were unhappy and lawyered up.
Back to Mrs. Cunningham. I wrote a short letter to the administrators. Here is your choice: restrain her, or accept responsibility for her terrifying death. I don’t know whether this got flashed to the office inAtlanta, the insurance company, its lawyers, and back down again, but I can tell you that within 24 hours the facility had that seatbelt on June’s chair.
My dear old patient died of pneumonia about eight months later, after careful and emotional consideration by her daughter to withhold antibiotics and keep her comfortable with morphine.
Is the moral of the story that rules are made to be broken? But this is a delicate balance, isn’t it? Imagine a world with no rules, and then a world with nothing but rules. While we’re on the subject, imagine ideas that oppose one another while both of them are indispensable to life as we know it. Like (in healthcare) Access to Information and Privacy. Another set of ideological opposed ideas (and this is the one active in June Cunningham’s situation) is Safety and Freedom. Thing about these important pairs of ideas is we all dearly respect and value both of them. We make huge efforts and sacrifices to be safe, and also to be free. We want information to be private but we want our doctors to be able to find it in an emergency.
Here’s my take on this. When you face difficult situations, if your heart is in the right place (not quite sure how we define that) most of the time you can find your way. Of course we can’t escape from having rules, and the pendulum of public opinion swinging one way or another. But in each individual situation we depend on people meaning well and being reasonable with one another. I’ve read ethics and law philosophers on this subject, and I don’t find any conclusion. In a crisis, give me sincere people and their instincts over rules based on interest or ideology. Anyway, we made it work for old June Cunningham.