I recently posted about how doctors act like predators, in the sense of having what Jane Jacobs called “guardian values” (e.g., loyalty to other doctors is more important than honesty to patients). Here is an example of medical behavior that coming from an ordinary business would be shocking:
On February 21 , I had my evaluation for a kidney transplant at a university-affiliated medical center about 100 miles from where I live. The way this institution operates, it takes about 8 months to get from initial referral to evaluation and there are all kinds of diagnostic tests in between (see previous blogs for more details). Once you are an approved transplant candidate and an organ becomes available, you go to the hospital and have surgery. The average stay for a kidney transplant is about 3 days and then you are discharged to a local hotel for 5-7 days. During that time, you return to the hospital every day for blood work, monitoring of the immunosuppressive medications and patient education. Also, you must have a full-time caregiver. That can be a friend, family member, stranger off the street corner, but they must be with you at all times to ensure that you are eating, taking meds, bathing, etc. Also, driving is prohibited until about six weeks post-transplant so the caregiver is also a chauffeur and attends the educational activities as a back-up in case the patient becomes incapacitated or symptoms of rejection appear.
In short, your caregiver must be able to put their own life on hold for about two weeks with as little as two hours notice. When you think about it, that’s a pretty tall order to fill. I have a caregiver, he happens to be a member of this forum. He is a dear, dear friend and always will be if only for the fact that he is willing to undertake this role with only the merest of acquaintance. He is more than willing to put himself and his home at my disposal if necessary. I won’t call him out by name, he obviously knows of whom I speak, but I truly feel as though Karma has smiled on me since our paths have crossed.
So the evaluation finally rolls around. Caregivers must be present during the evaluation. We check in at the medical center and are shown to an exam room. We are seen by a barrage of clinicians; dietician, nephrology resident, nephrology attending (the doctor in overall charge of my medical care while at the transplant unit), and the transplant surgeon. There are physical exams (kind of interesting since my caregiver knows me pretty well, but not THAT well), an EKG and a side trip to the lab. At the lab, the phlebotomist doesn’t pay any attention to my advice about using a butterfly catheter and proceeds to draw 20 (count ’em, 20) vials of blood for type, cross match, antigen levels, etc, etc through a Vaccutainer. About halfway through, my vein collapses and she has to switch to the other arm, this time with a butterfly. After that, a chest x-ray. Back up to the 9th floor for our final meeting of the day; the social worker.
Up until this time, everything had been encouraging. I can’t say enough good things about the clinical staff, they were all wonderful, professional, warm, willing to answer questions, etc. My transplant surgeon looks like he should be on a TV medical drama, he can unzip me any time! The good vibes ended the minute we sat down with the social worker. She informed me that I would be required to have a second caregiver, a backup so to speak. WTH? People that can call a halt to their lives don’t grow on trees. Talk about hitting a brick wall. Here’s a sample of the conversation:
Social worker: What will you do if you are discharged to home and you can’t take care of yourself?
LadyDoc: Well, if I can’t take care of myself then I guess I shouldn’t be discharged, should I?
Social worker: Well, you could always go into a nursing home.
LadyDoc: Over my dead body.
And there you have it, the standoff. I have looked through every single printed word and email that I have ever gotten from this institution (and I keep very good records) and there is NOT A SINGLE WORD about having a second caregiver. The only family I have in the area is my daughter and she has two little boys under the age of five at home, so I can hardly ask her. My circle of friends is painfully small, many are disabled and not up to the challenge and the others have lives of their own.
The social worker called me a few days later to see if I had changed my mind and it suddenly began to sound like a sales pitch. She was touting all the advantages of this particular institution but I just don’t see it. I am now turning my attention to medical centers where the inpatient stay is closer to 5-7 days and then the patient is discharge directly to home, none of this stay-in-a-hotel stuff. I can’t think of too many places where germs and nastiness run more rampant than a hotel. I am so frustrated, I feel as though the last 7 months of my life have been an utter waste of time. Furthermore, the evaluation day was wasted; if we had met with her first we could have simply gotten up and walked out and said “Thank you for playing, please try again”.
In case you needed any convincing that customers for health care differ from customers for other services. (The difference: they are more desperate.) Think of this example if you are sure that government-run health care must be worse than the current system. You can learn what happened next at the link.
7 Replies to “An Example of Predatory Medicine”
Or they could put her on a ketogenic diet for a few weeks and cure her kidneys. But where’s the money in that?
I second Tuck’s comment. There are anecdotes about people doing a paleo diet (low carb, low protein (high protein is bad for those with kidney disease), high fat) and regaining kidney function. The blog nephropal which contained one such anecdote is now hidden. It was written by a paleo friendly nephrologist, Ken Tourgeman.
Wow, there are anecdotes??? Man, I’m sold. Hey doc, cancel my chemo! I read on a blog the there are anecdotes that this fad diet will cure me.
Signed, Steve Jobs
Alta Mesa Memorial Park
Seth: what if the fad diet was harmless? And takes only a few weeks to try
“Reversal of Diabetic Nephropathy by a Ketogenic Diet [in mice]…
…Diabetic nephropathy, as indicated by albumin/creatinine ratios as well as expression of stress-induced genes, was completely reversed by 2 months maintenance on a ketogenic diet.”
Paper can be found at PLOS One.
Seth: Thanks, Dennis, that’s good to know. The paper was published in 2011. Three of the authors are from a neurobiology department.
Wilbur, yes, anecdotes are not necessarily clinically valuable. But as Seth points out, if the alternative treatment suggested does no harm on its own, there’s only upside. I really don’t get this attitude.
My mom’s kidneys were beginning to lose function last year. For various reasons, I suspected she had a problem with gluten. Her doctor offered no real advice, other than ‘when they actually fail you will need dialysis etc.’ He offered no other treatment possibilities. He suggested she lose a little weight , although she wasn’t particularly overweight. (Maybe 15 extra lbs.)
I insisted she adopt a paleo-ish diet, with gluten avoidance being the priority. A year later, she feels better in many ways, and has improved her kidney performance substantially. Her GFR has improved from 31, which is moderate-to-severe, to 62, which is mild kidney disease. Apparently this kind of improvement is vanishingly rare for a 70-yr old.
So I’ll take that anecdote, thank you very much.
In mice (as mentioned above):
You’ll get a kick out of that one. Of course he doesn’t want to put actual *humans* on a ketogenic diet, he want to develop a drug…
“Pete is a 30 YO male, 175cm tall, 110kg (I can’t tell you hw depressing and embarrassing it is that the US can’t figure out the metric system) and pretty much a mess. He is sedentary, stressed, has terrible sleep and exists on packaged pastry products and beverages with “DEW, Pepper” and similar monikers. Recently Pete had to get a physical and he had: high blood pressure, elevated: blood glucose, BUN, creatinine. Given that his condition was obviously not good it was recommended that his renal function get checked out. Tests indicated Pete was operating on approximately 10% of normal kidney function. Pete was pretty shaken up by his condition…peri-diabetic, facing dialysis ( his doctor wanted to start dialysis IMMEDIATELY) and all at the ripe old age of 30. Fortunately for Pete, his employer was a member at a wacky little gym called NorCal Strength & Conditioning and the employers offered to not only pick up his gym membership for a few months, but would pay Pete on an incentive basis: $5 for every pound lost. This is a small IT company, and I’m sure this situation violated multiple California state “fair employment” laws…but it’s what happened here. Pete went through an initial assessment at NorCal, and it was recommended that he work with Amy Kubal on his nutrition. The course of action involved a low protein (10-15% protein) low carb ( less than 10%) high fat (mainly from coconut products), ketogenic diet. Pete’s doctor was horrified, but we petitioned for one month of “tinkering” to see how things went. Three weeks later Pete’s GFR was 80% of normal instead of the previous 10% and his BUN was within normal ranges. His doctor was interested…but baffled. Pete has subsequently titrated up his protein intake with no ill effects on kidney function.”
“Anyway, the first thing to do with a paper like this is to check whether the authors cited Nielsen’s 2006 case report of a human being having their diabetic renal failure halted and partially reversed. I mean, this might be relevant…
I hadn’t kept up with the comments on your post… Sorry for being unnecessarily cryptic.
The fascinating thing from Mobbs work was the importance of keeping protein very low, since protein in excess of dietary requirements was converted to glucose, which is what was poisoning the kidneys… Remove the glucose, kidneys heal.
And to Wilbur: All case reports, or any published science, is an anecdote. What’s important in science in reproducibility.
This person misunderstands the purpose of a hospital. Patients are kept admitted to the hospital for medical care, not help with activities of daily living. If a patient can’t manage ADLs, they need a caregiver or nursing home. She will not find a hospital that is willing to keep her admitted for the entire recovery. This is her own fault for being unwilling to use a skilled nursing facility/rehab center, which is a very common and normal thing to do, and not the fault of the hospital for providing poor “customer service.” Rather, the hospital would have been negligent to perform a procedure on a patient that had no way to meet her care needs at home. Another option would have been to hire a visiting nurse or home health aid.
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