Problems with Conventional Medicine


(Note: I changed names to protect the innocent.) Hello everyone. Overall, I think it’s important to realize that the treatment Paul receives at the Ellis is strictly conventional, meaning that whatever medication they give him or prognosis they offer comes out of (what I always saw as) a collective medical brain, not the mind of an individual. This means that the doctors do not necessarily approach Paul's situation from a relative standpoint. They see a problem and they solve it by giving him a medication that has been known (according to mainstream medical opinion) to provide a solution to that problem.

 

It is certainly true that conventional medicine has come to be known as “conventional” because its methods have proven to provide satisfactory solutions for the majority of patients in the world. However, if our family history is any indication, the solutions that conventional medicine has to offer are not always the right ones.

 

The reality of the situation is that there are, indeed, cases where conventional practices fail to offer adequate solutions and, in some cases, only serve to worsen the existing problems, not to mention create new ones. But practitioners of conventional medicine (e.g. the Ellis doctors and nurses) will never fully acknowledge this. Why? Not because they are bad people, but because, in the doctors’ case, it goes against everything they were taught in medical school and, in the nurses’ case, it goes against everything they were trained to do as part of their jobs in the Ellis [nursing home], an institution that strictly specializes in conventional approaches to problems.

 

If the doctors did anything the least bit unorthodox that turned out to have negative consequences they would risk ruining their reputation due to “malpractice.” If the nurses in the Ellis were to do anything the least bit unorthodox, they would risk losing their jobs. In fact, if the institution as a whole did anything the least bit unorthodox, they would risk an enormous lawsuit and maybe even lose their license from the State, both of which are obviously not in the best interests of the business they run. So, in consequence, everyone plays it safe by sticking to the conventional blueprint…even if the blueprint doesn’t turn out to be in the individual patient’s best interest.

 

To put it simply, the doctors and nurses at the Ellis will never admit the fact that their conventional methods aren’t appropriate. And it is with this in mind that you should cautiously heed the advice/opinions the Ellis doctors and nurses provide you. When they say Paul's dementia can be attributed to the strokes, they don’t say so from their own mind, they say it from their collective medical brain, which unavoidably possesses a great deal of ignorance. If Paul has adverse reactions to the drugs, the doctors and nurses essentially cover themselves by blaming the strokes, which appears to be a reasonable explanation, but is not necessarily the truth.

 

In brief, you can trust the doctors to voice a valid perspective of the situation, but you must acknowledge the fact that they are only voicing their conventional opinion, which is not always the right opinion. Unfortunately, it’s up to the family to decide what is in Paul's best interest (after taking all opinions into consideration, of course). Doctors can’t be trusted to do all the thinking for us. The results can be disastrous. Thanks for listening, Matt

 

Nursing Homes in Our Capitalist Culture

I wrote the following diatribe (call it what you will) about a month or so after I wrote the letter to my family (see last blog). At this time, [Paul] had just died in the nursing home. It was of my opinion (and several others in the family) that he had died because of the drugs he was given. In the diatribe, I logically explain why I felt that way:

 

America is run by a capitalistic ideology that values good decisions in terms of how much money they will make and bad decisions in terms of how much money they will lose. A business can only be successful if it adopts this capitalistic mindset. Morals, as sad as it may seem, aren’t given much value when running a business; if they were, the business would be at a much greater risk of failing. So people almost have no choice but to put their morality aside when running a business, not because they are evil, but because their job is to run a successful business and oftentimes the only way they can do that is by compromising morals.

 

I’ve worked at a supermarket of some sort off and on for about seven years now. One way in which these supermarkets ensure themselves the largest profit each year is by hiring and scheduling the least amount of employees possible in order for the store to function satisfactorily, and also by paying these employees the least amount of money that they can legally get away with. The supermarket I work at now has taken these cost-effective hiring practices to a perverse level by employing a cheap but reliable supply of Latino laborers who are so poor that they have no choice but to work anywhere between 70-90 hours a week and to accept whatever pay the store gives them for doing so. Taking advantage of these poor Latino workers isn’t exactly the most moral way to run a business, but it is cost-effective and that’s all that matters when operating from a capitalistic mindset.

 

Now, I’m sure you’re wondering what this all has to do with nursing homes. The point I’m trying to make is that supermarkets are run no differently than a place like the Ellis, because, as sad as it may seem, nursing homes are businesses (most of which are run by large corporations) where the ultimate goal is to maximize profit and minimize cost.

 

Of course, the problem with running a nursing home as cost-effectively as a supermarket is self-evident: there is absolutely no way to determine how many nurses and aides will be needed in order to make the nursing home function satisfactorily. Their business involves the rehabilitation and long-term care of human beings and an inventory of human beings is not as easy to manage as an inventory of groceries. A nursing home patient could be reasonably healthy one minute and only require minimal care but become ill the next minute and require constant care. This means a team of five nurses may be all that is necessary one minute, but a team of three times that amount may be needed the next.

 

The reality of the matter is that the nursing homes don’t properly account for this inconsistency in patients’ need for care (it would probably be impossible to do so anyway). Given their cost-effective budget, all the nursing home administration can do is hire a limited team of nurses and nurse’s aides and schedule a minimal amount of them to work each shift.

 

But if we take all the medical attention that patients need, add all the feeding, dressing, grooming and washing on top of it, then add bathroom-trips and Depend-changing into the equation and even factor in all the difficult patients who verbally and physically fight the nurses, it’s pretty easy to understand how things can become stressful for the Ellis staff.

 

Nurses aren’t superhuman. They can only do so much. But when the demands on them exceed their capabilities as human beings, they have no choice but to resort to very desperate measures to alleviate their stress. The quickest solution is to introduce artificial means of keeping the patients “under control.” And this is where drugs—euphemistically referred to as medications—help them out. These drugs are substitutes for nurses. Since the price of drugs doesn’t come out of the nursing home’s own pocket (either Medicare, Medicaid or the patients themselves pay for them), they are a cost-free way of managing patients, absolute godsends for any nursing home operating from a capitalistic mindset.

 

For obvious reasons, Paul didn’t want to be in the Ellis nursing home. During the first month or so that he was there, he would constantly ask the nurses to go home and the nurses understandably grew tired of his determination to escape. So they decided to give him a drug called Seroquel that would, as they put it, “calm him down.” Exactly 24 hours after starting the Seroquel, Paul flipped out. As everyone probably remembers, this is when he “became violent” and supposedly tried to push a patient out of her wheelchair. Lisa and my mother had to go down to the nursing home and, together, they eventually calmed him down. The Ellis staff, obviously not wanting to admit that the tantrum may have been triggered by the Seroquel, implied that Paul was just an extremely difficult person who didn’t want to be in the nursing home. (Now, we all know Paul didn’t want to be in the Ellis, but we also know he wouldn’t have resorted to such violent behavior in order to get himself out of there.) Nevertheless, per our request, the Ellis agreed to hold off on giving Paul any more doses of Seroquel.

 

But they didn’t hold off for too long. The night following his tantrum, Paul somehow managed to escape the Alzheimer’s ward. He didn’t get too far, as Sarah was surprised to discover him just outside the locked door at the end of the hallway (which the nurses should have known by the buzzing alarm that sounds whenever the door is opened). Needless to say, the incident was somewhat embarrassing for the Ellis staff. In order to take the attention away from their negligence in properly monitoring their patients (again, because they’re overworked), they simply shifted the blame over to Paul, saying that he was way too difficult of a patient and they would either have to resume giving him drugs to keep him “under control” or they’d be forced to send him to a psychiatric unit. Obviously the last thing our family wanted was for Paul to be admitted into a psych-unit, so we had no choice but to allow the Ellis staff to resume their drug approach.

 

The following day, Paul was back on Seroquel and also another drug called Depakote, though the nurses assured us that the doses of the two drugs were very low. We later found out, however, that the doses were only low for adolescents and young adults with bodies that could process drugs more efficiently. According to an article in the New York Times titled “Aging and Infirmity Are Twinned No Longer” printed on January 25, 2005, when people grow old “body fat is gained at the expense of lean muscle, resulting in less body fluids to dilute water-soluble drugs…loss of body fluids allows certain drugs to reach toxic levels when given in doses appropriate for younger adults.” For an elderly person with a higher susceptibility to dehydration—let alone an older liver and kidneys—the doses of Seroquel and Depakote were undoubtedly very high.

 

Week after week went by where taking the Seroquel and Depakote basically turned Paul into a vegetable. He’d have some semi-good days where he would play cards and engage in simple conversation, but for the most part, he was mentally aloof. On the rare occasions that he did show signs of lucidness, it was usually in the form of a bout of anger totally uncharacteristic of the Paul we always knew.

 

Whenever we expressed our concern about these problems to the Ellis staff, they would offer us a variety of unsatisfying answers. The dementia, they said, was part of a downward spiral that began with the three strokes Paul had while in the hospital. This appeared to be somewhat of a reasonable explanation, but seeing how he had become a vegetable only after he started taking the drugs, it wasn’t easy to digest as the truth. Something seemed fishy. [In fact, such suspicions made us wonder whether the mental confusion Paul experienced while in the hospital the first time he was there (thinking he was on the Charles River loop and such) actually could be attributed to his strokes, as the doctors prognosticated. After all, the hospital staff medicated Paul with a long list of strong drugs, such as Neurontin, Ativan, Lasix, Proscar, Lopressor, Zocor, Lisinopril, Ditropan, Digoxin, Plavix, and even Seroquel itself, just to name a few. Incidentally, according to a medical friend, many of the side effects of these drugs included mental confusion, and some of the doses given to Paul were higher than normal.]

 

The dementia, however, was probably the least harmful of Paul’s problems. Not long after he started taking the Seroquel and Depakote, Paul’s vegetation in the nursing home became so bad that he either slept through many of his meals or, if he was awake, didn’t have the energy to eat them anyway. One of the times that my mother questioned the effects of the medications on Paul, Nurse Mary explained there was a “trade-off” involved. That explanation, however, never seemed too logical. In order to keep him “under control” (not asking to go home) the Ellis had to give Paul drugs that made him sleep through meals and, in effect, starve/dehydrate him to death. Asking to go home vs. starving to death? There wasn’t much rationale supporting that so-called trade-off.

 

Of course, for most of the time Paul was at the Ellis, we never had any hard evidence to corroborate our suspicions that Paul was, indeed, having adverse reactions to the drugs. But in mid-April, that all started to change. On exactly April 11th, the FDA issued a warning that stated Seroquel and other anti-psychotic drugs used to treat schizophrenia (that’s right: schizophrenia, not asking-to-go-home syndrome) should never be used on elderly patients, as studies showed a link between the drugs and a high death rate. Could the high death rate be due to the fact that the drugs made patients too incapacitated to eat and drink? It wouldn’t be too far-fetched to say so.

 

As for the other drug, Depakote, the FDA had never issued any warnings about its use with elderly patients, but according to several qualified medical sources, it never should have been given to Paul either. The woman next door to us is a nurse who works with young kids who take Depakote. When she heard that the Ellis was giving Paul Depakote, she nearly flipped. Depakote, she said, is so strong that it should only be used with young people and in only very small doses, never with the elderly. One of the Norwood hospital nurses that admitted Paul in late April was also bewildered when she saw Paul was taking Depakote. She asked Jane, “Why is he on Depakote? Is he having seizures?” Jane said he wasn’t having seizures and the nurse had no idea why he’d be taking Depakote otherwise. Even Karen Smith herself (the psychiatric nurse practitioner in charge of medicating the Ellis patients, Paul included) admitted in a phone conversation that Depakote probably wasn’t the best drug for Paul to be taking. I’ll talk more about Smith in a moment, though.

 

The bottom line is that, according to several reputable sources, neither Seroquel nor Depakote should have been given to Paul in the first place. If there were drugs that were, indeed, appropriate for him to take, Seroquel and Depakote definitely weren’t the ones. The Ellis nurses outright abused these drugs to keep Paul “under control” (not asking to go home) and more than likely drove him to his grave in the process.

 

After hearing about the FDA warning, everyone in our family was alarmed. Nancy scheduled a meeting with Karen Smith so that all concerns with Paul’s drugs could be addressed. At the meeting, Smith dismissed the FDA warning simply as “guidelines” and made no effort to address the situation any further. On the phone—a day or two later—she still didn’t really acknowledge the Seroquel warning as something to be concerned about, but she did come to agree that Depakote may not have been the best drug for Paul and that she would look into finding an alternative solution.

 

Apparently Smith didn’t look too far, though. Paul was never taken off Depakote. And it was impossible to follow up on Smith’s progress because she never answered or returned any more phone calls. While Smith was supposedly “looking into it,” Paul was potentially starving to death simply because he was on drugs that he should never have been on. It wasn’t until about a week before his death that something was actually done about Paul’s drugs; the doctors lowered the doses of Seroquel and Depakote, but only by an insignificant amount.

 

So combining the FDA Seroquel warning with Karen Smith’s admission of (but failure to follow up on) Depakote’s inappropriateness, there is no doubt that taking Seroquel and Depakote was not at all in Paul’s best interest. And knowing this makes it much easier to believe that it was drugs (not the strokes/dementia) that ultimately lead to Paul’s death.

 

Because the situation is so complicated (it took me about five pages to just touch the surface of it), there is no one person to blame for this horrible tragedy. We all went into this situation completely blind to the problems plaguing understaffed nursing homes. The safest thing to do throughout the ordeal was to trust that the doctors and nurses at the Ellis knew what was in Paul’s best interest. And as soon as we started to realize these “qualified” personnel may not have known what was best for him (around the time when the FDA issued their warning) it was too late. The damage had already been done. And the only positive thing to do from that point was to learn from the tragedy so as to prevent the same thing from happening again to another member of our family.

 

Granted, Paul was ninety-years old and had lived a wonderful life prior to the five months leading up to his death. Perhaps his age made the situation somewhat easier to accept. Maybe it wasn’t really worth being such a squeaky wheel, questioning everything the Ellis nurses and doctors did, when Paul’s time was potentially right around the corner anyway. Though that may all be true, one thing is for sure: the way Paul ended up dying wasn’t natural. He was given artificial drugs in a very abusive manner, which turned him into a vegetable and made him starve/dehydrate to death.

 

But, again, no one person can be blamed for this tragedy. Pinning the blame on the nurses wouldn’t be fair; they simply did what they had to do in order to do their jobs. Pinning the blame on the doctors wouldn’t be fair either; they simply prescribed whatever drug would make the nurses’ jobs more doable (in fact, the doctors were never even around the ward long enough to properly monitor how the patients were reacting to these drugs, mainly because they too were overworked and didn’t have the time). But, more importantly, we can’t pin the blame on ourselves, because there was no way to know all that we know now way back in January when the seeds to this tragedy were planted.

 

If the blame can actually be pinned in any definitive place, it would have to be on our nation’s ruling ideology: capitalism. Nursing homes are simply an extension of the American capitalist culture. They are run the same way as the supermarket I work in. Every decision by the nursing home administration has to be made in terms of whether it will maximize profit and minimize cost. Whether it’s communism, socialism, fascism or capitalism, no absolute ideology is perfect. Nursing homes are merely one example of capitalism’s drawbacks.

 

So I guess we can consider this whole five-month experience as a kind of Susan Wornick “Buyer-Beware” experience. Now we can all be a little more proactive when dealing with medical personnel and pharmaceuticals, not only in nursing homes, but in all other situations as well. -Matt Burns

 


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