When my wife’s mother had a stroke in the spring of 2001, it launched our whole family on an odyssey that I hope we never have to repeat.
My wife and I and our two children were in Amsterdam on a family vacation when we got the call from her brother, Steven. Ada had had a stroke and was stable but paralyzed on her left side.
We flew home to Philadelphia, and our lives changed. Lois and Steven flew to Florida the next day, and for the next several months they shuttled back and forth, sitting at their mother’s bedside and attempting to manage the medical bureaucracy.
We learned things – things I would have preferred not to know. Both my parents had worked in medicine. They taught me at a young age that medicine has a curing function and a caring function. We found both to be in short supply in Florida.
Let’s take curing first.
Ada had gone to the doctor the day she had her stroke. She complained of numbness and an inability to move several of her left toes. Her doctor knew that she had had a previous stroke several years before, from which she had made a good recovery. He told her she had “nerve damage,” suggested she get a cane, and told her to make an appointment with a neurologist. So she went home and had the stroke.
That’s only the beginning. When Ada had her stroke, she fell and broke her left hip. The fracture was not diagnosed for two weeks.
Here’s the best construction I can put on this. It seems the initial fracture was a subtle hairline. It’s possible to miss such things.
After two days in the hospital, Ada was discharged to a rehabilitation center where she had physical therapy every day. The therapy involved her standing – in great pain – on her broken leg, which in the ordinary course of events would tend to make the fracture larger. Eventually a nurse, who I think had had enough, pointed to the way Ada’s leg was lying on the bed, and said that she had a fracture. The diagnosis was confirmed on X ray, and Ada got her hip pinned.
Now to the caring function. At the rehab center the nurses were, with a few exceptions, surly, uncommunicative, and unresponsive. The meds nurse – the one who dispensed medication – had apparently never heard of breakthrough pain. The nurse’s aides, again with a few exceptions, were surly, uncommunicative, and unresponsive. One of the exceptions, a lovely, caring woman, wound up taking a job in the county highway department because the pay was so much better.
Overall, though, the nurse’s aides were so unresponsive that my mother-in-law gave up trying to go to the bathroom. Even with my wife there, it took up to forty minutes to get an aide to answer a ring. Ada started wearing diapers. She wasn’t incontinent, but the staff made her act as if she were.
Eventually she was well enough to leave the rehab center, and we considered bringing her north. It hadn’t really been an option up to that point.
Ada still wasn’t in great shape, but she had lived in Florida for nearly 20 years, and she wanted to stay with her friends. We thought it might be okay.
She moved to an assisted living facility in Florida, and it was okay for a little bit. Then things started to go wrong. She developed acute pain in her left leg. Nobody (including an internist, an orthopedic surgeon, and a neurologist) knew what it was. An aide accused her of faking it. (There’s an ongoing theme that she was considered a “complainer.”) We added a geriatric case manager, and then we added a private-duty aide, a lovely, caring woman.
Finally Ada was readmitted to the hospital. The pain in her leg was caused by a blood clot – phlebitis, a condition which is life threatening.
The doctor at the hospital prescribed a blood thinner. Then Lois reminded her that Ada’s stroke had been caused by a bleeding blood vessel in the brain, and suggested that, in view of this patient’s history, a blood thinner might be contraindicated. Exit blood thinner.
The hospital also ran a chest X ray, and Ada had some huge tumors in her lungs. They hadn’t been seen on prior X rays – one taken when she had the stroke, and one a few months later.
We ordered up an air ambulance and moved her north, to a nursing home just outside Philadelphia, so she could be near her family at the end. A week later, and about seven months after her stroke, she was dead.
This ending was inevitable. What was not inevitable was the amount of suffering and humiliation she endured for seven months because of slipshod medical and nursing care.
People suggested that we sue for malpractice – and, of course, that brass ring of litigation, the award for pain and suffering. We were disinclined to do it because we didn’t think her pain was fungible – it couldn’t be converted to money. And I don’t believe that suing people causes them to improve their behavior – it simply causes them to improve their defenses.
I don’t have any answers. But I do know this. We need some.