One of the purposes that this blog has come to serve over time is to show how acute problems that individuals face are often not theirs alone, but are the result of larger social and economic structures that work against them. Sometimes the damage done to individuals is an accidental byproduct of poorly thought out products or policies. Other times, it looks to be a disturbingly central element of the business model.
We’ve been alerted to an issue that no doubt many readers have had the misfortune to encounter, but our sense is that has yet to be recognized as a broader societal issue, namely, how the medical-industrial complex takes advantage of the elderly. As Lambert put it:
Eldercare is really the limit case of health care for profit. Stick a tube in the helpless body, extract rent. It’s brilliant in its simplicity!
We don’t want to pre-empt the excellent Maggie Mahar, author of the widely acclaimed book Money Driven Medicine, who is about to launch a series of posts on how longevity will become the major medical crisis of the 21st century, with Alzheimer’s and other types of dementia a particularly acute problem. She is starting this coverage with a discussion of Katy Butler’s book: Knocking at Heaven’s Gate. It chronicles what took place after a doctor insisted on outfitting her father, who was cognitively impaired after a catastrophic stroke, with a pace maker. It’s a troubling account of how families are effectively shoved aside in making decisions on behalf of loved ones, even when a medical power of attorney is in place. I strongly suggest you sign up for her e-mail alerts from her Health Beat blog
We had a reader, Mark L, tell us over the last two weeks of his worry and frustration about how his elderly father seemed to be held hostage in a rehabilitation facility. His father had previously been cared for at home by his wife with the assistance of a aide who visited four to five days a week. Mark L admitted he could not be fully certain of all the details, since he was working in Eastern Europe and was getting updates from his increasingly distraught mother. However, Maggie Mahar described an even more clear cut instances of medical “caregiver” overreaching in her correspondence with me, so directionally, Mark L and his mother’s fears seem well warranted. Key sections from one of his e-mails:
My father is 89 years old and was admitted to a hospital a little over a month ago because his care-giver said he was sleeping too much (both at night and during the day) and that was “not normal”. The care-giver contacted a nurse and doctor who thought it would be good to take him to the hospital.
The doctors could find nothing wrong with him. However, they guessed that this might be the effect of medicine he’d been taking for many years. Possibly the cumulative effect was to decrease the activity of his kidneys. This was speculative and it lead only to a brief period when the medicines were not administered.
In the end, the only problem was that he’d lost strength from being in the hospital bed, and sleeping so much without being on his feet. So, he was admitted to a “rehabilitation center” – presumably one owned by the same for-profit entity that owns the hospital.
My mother was told that he would be there for two weeks, to get his strength back. (During the time, he was to be given physical therapy, and regularly walk with the assistance of staff.)
Now that two weeks are almost up, my mother has just met with a Social Worker and an Unidentified Hospital Employee — someone who had no name badge, and who did not even have the courtesy to introduce himself.
My mother was informed that Medicare would pay for so many days, and that their Private Insurance would pay for so many days, and that after that, she would have to pay. But the message was that my father will not be going home.
No explanation has been given as to why he must stay longer than two weeks, and the orginal reason for admitting him to this facility has not been referred to again.
Evidently the goal of this is to obtain the maximum amount of money, and indirectly to bankrupt the family.
Note well: The entity where my father is being held is under-staffed. My father has been found wandering around because no one is keeping an eye on him. And, that on several occasions.
Moreover, due to Skype, I was able to hear a conversation between my mother and the care-giver in which she described the situation in the facility. She did not use the word “understaffed” but between her sympathy for those who work there and the words she actually used, it is clear that the problem is an insufficient number of staff. The care-giver was trying to help out in sympathy with those who worked there because she’s worked in such facilities before. She identified with the situation of the employees there, saying words to the effect that you go to one room, check that someone is OK, and then rush to the next room or to a room where there is a problem. In other words, there is not time to give proper attention to any one individual. This is not what my father deserves, nor should it be legal. It is not acceptable. It is plainly a case of housing people in an under-staffed facility.
Most recently, when my mother’s care-giver visited the hospital to spend time with him, she did not find him in his room. Instead, she found him unattended with an oxygen cord dangerously wrapped around his neck in a room down the hall from his room. He was unharmed, but he was in the wrong room, and confused.
This looks to me like a scam – BAIT and SWITCH — aimed at extracting the maximum amount of money for the for-profit entity. Bait: Only two weeks to get his strength back. Switch: Now, that we’ve got him, we won’t let him go; and you will have to pay!
I must emphasize: in this facility, my father is not receiving the care he needs, and he is not happy. He frequently complains that he wants to go home, and he asks for my mother at night. (To deal with his “anxiety” they give him a pill. But if anything, his desire to leave the place is evidence that he remains rational. No sane and healthy person wants to be in such a sterile, lifeless environment, without a familiar face, and only the professional affection of nurses, if one happens to be present.)
When my father was hospitalized in the past, my mother stayed in the hospital with him. Now, they do not allow her to stay at this under-staffed facility. Moreover, my parents have been married for sixty-three years, and this separation, is, in and of itself cruel.
All for the sake of profit. And not because the care-givers or nurses are receiving high salaries or generous pensions.
Note that putting a person who suffers from Alzheimer’s or dementia in strange surroundings is particularly stressful to them. With their memory impaired, the ability to have a daily routine and recognize familiar places gives them a sense of still having some control.
This story does not have a happy resolution. The hospital’s position had been that the father was safe where he was, despite falling repeatedly in his efforts to escape. The mother was able to get the father rescued from the facility only by virtue of having her son’s brother-in-law, an attorney, start attending meetings with hospital staff. However, the hospital/rehabilitation center stay appears to have impaired him. His dementia was markedly worse, likely due to the stress of being deprived of familiar surroundings, most importantly, the presence of his wife.
The potential for victimization is obviously most acute with Alzheimer’s patients, but mere lapses in care, which seems all too common with the elderly, can wind up producing the same results. One of my in-laws sent this story in response to Mark L’s account:
The story Mark shared with you is very close to what happened with my dad. He had knee replacement surgery. He suffered a lot of discomfort and could continue with physical therapy, hoping the pain would go away. The doctors could not help him, but the also didn’t consider any of the factors that would be causing him pain, such as the metal in his body from injuries during battle in Korea contributed to his pain. Because he didn’t recover from the operation he had trouble getting around, he also had an abundance of medications for his heart, diabetes, and pain. This turn him into a recluse and my mom into his nurse and slave.
It finally reach a point where he feel over a table, could not get up and my mom called an ambulance. They brought him to the hospital. After two weeks of trying to figure out what would be the right steps for him medically, including looking at the 20 prescriptions he was taking, they sent him to a nursing home for rehabilitation. The place was so bad that he eventually fell broke and broke his hip. He eventually got pneumonia and went to the hospital. Lucky from there we were able to move him to a Veteran’s Nursing Home (much better home for him) but he never came home, never recovered and slowly wasted away as they tried to keep him breathing and moved him back and forth from the Vet’s nursing home to the Vet’s hospital.
It was horrible, the system is fucked up, and I never want to see this happen again.
Now one can correctly point out that we all die in the end and the process can be painful, demeaning and frightening, particularly if someone has a terminal disease like the less treatable forms of cancer. But the structure of our society and the priorities of our medical system conspire against the elderly. People in most advanced economies live in nuclear families, often finding it hard to make their own way, so the marshaling the time and resources to take care of an aged parent or relative is difficult to impossible. By contrast, historically, extended families lived in the same house or in close proximity, so care of both the young and the aged could be spread among relatives.
It is particularly hard to care well for a failing parent with Alzheimer’s. I saw one woman do it well, but her mother had enough money to pay to rent a home where she and her daughter could both live comfortably and the daughter could hire two aides so the mother had close to 24/7 assistance. There is presumably a better middle ground between the sort of warehousing approach Mark L’s father was subjected to and high touch/high cost care, but that means more expense, and the direction of the medical-industrial complex is to increase top level pay and corporate profits, and not to improve service levels if they can get away with less.
And the elderly themselves often see what is in store for them and take matters into their own hands. My father had an auto-immune disease that was diagnosed as terminal. His father had languished in a nursing home for 12 years, 10 of them blind because he got glaucoma that went untreated. My father shot himself when his condition got bad enough that he might be hospitalized; he was afraid that if he went in, he’d never be allowed to leave. One of my mother’s friends had survived cancer twice, and got lung cancer when in her 80s. She was told she had 6-12 months to live. Her lungs would fill with fluid and she’d have to have a tube inserted to drain her lungs. She killed herself via an overdose of sleeping pills rather than suffer through increasingly painful interventions to keep her alive. Another friend of my mother’s went into the hospital, was discharged to a rehab center too early, where a combination of misdosing and lack of supervision left her sufficiently impaired that she would be unable to live on her own again. She got her kids to remove her from the facility, and she stayed with one of them and refused to eat or take medicine.
This is clearly not a pleasant topic, but it is one we need to face if we are to come up with better approaches. And this situation is unlikely to improve absent more public interest and outcry. We have the immovable object of an aging population that can be kept alive longer, albeit not necessarily with much improvement in quality of life. And on that side, as we’ve seen above, is a medical industry loath to give up an obvious source of profit. On the other is the irresistible force of broad societal pressures to reduce health care spending, particularly on the unproductive elderly. It’s naive to imagine that many of us won’t be subject to the problem that Mark L’s parents face, either directly or indirectly. Yet the public remains complacent even when it is their own well-being that might eventually be at risk.
Update 6:30 AM: I hadn’t heard from Mark L for the last couple of days, and I had hoped that his father would show some improvement when he settled in at home. Mark saw the post and wrote just now:
You should know: my father is doing much better. I spoke with him briefly on Skype yesterday. I could see that he was better, and he was even willing to briefly sing with me an old song (or a snatch of it), “The horse went around with his foot on the ground.”
He did not seem so confused and lonely as he had been only the day before. And, my impression is that his progress also lifted my mother’s spirits, and the spirit
of the woman who helps them regularly.
In the interest of telling the complete story, the day before my father was admitted,
an ambulance had been called against my mother’s wishes. (She was afraid that
once he was admitted, they would not release him again to come home.)
When the ambulance came, my father (here I rely upon what my mother told me)
told the men that he did not want to go to the hospital. Now, on that day, I did see my father through Skype, and he did look pretty bad.
Someone, I believe one of the men who came with the ambulance, told my
mother that if he continued to be so sleepy (I cannot be sure of his exact words)
then she should have him taken to the hospital. And, so on the next day, he
was taken to the hospital.
Just before he was released, he actually fell and hit his head. (He must have fallen
three or four times while in their “care”.) And, so they had to send him to a hospital
to have a brain scan. I thought that they might have released him because they
were afraid he would fall again, and then the family would sue him.