Medical Professionals

It is coming up to the one year anniversary since my Mother was killed by a Tucson brain surgeon [see update at bottom]. Of course he will say he didn't kill her, this was merely an unfortunate unexpected side-effect of the surgery. She died of a hematoma (bleeding in the brain that kills the brain cells it invades).

At the request of my Mother I talked to the surgeon to try and decide whether surgery was the right treatment. I remember asking him repeatedly if there would be any "mental deficit" or "loss of function". He assured me that my mother was healthy for an 85 years old and that the surgery would be simple. He left me with two thoughts:

1. He claimed that there was no way to provide any statistical information about treatments and outcomes. This was frustrating because without any background in medicine and nothing on brain tumours, I found a site that gave me some statistics. The surgeon simply ignored this possibility and kept telling me "each case is individual so we can't talk about statistics."


2. The operation would be "simple" and that he really couldn't think of any possible negative outcomes. As a surgeon he really had no option to offer other than surgery.

So I told my Mother to go ahead with the surgery.

To my shock, when I arrived after the surgery she had Left Neglect and other cognitive impairments. I had to diagnose this for myself since nobody on the hospital staff took the time to talk to my Mother, my Father, or to my brother or myself about her condition. It had taken me 3 days to drive 2000 miles to be at her bedside, I arrived 36 hours after her surgery. When I tried to talk to the surgeon he was "too busy" and had me chase after him as he left the hospital. He did confirm that she had Left Neglect but really said nothing about her condition, what caused it, or what her prognosis might be. I -- and the family -- were left completely in the dark.

While she was at the hospital it was a continuous effort on my part to try and find somebody who would take the time to explain what happened, describe her condition, or talk about what could be done. It took four or five days before a family physician (somebody from the office, not her regular doctor) to pull me aside and tell me it was a hematoma. At first I was ecstatic because this meant to me she would improve as the blood clot dissolved. It took several before I was again pulled aside and told that hematoma in the brain is unlike a hematoma elsewhere: the brain cells die and do not come back. Her deficits were permanent.

The surgeon never explained any of this. Never apologized.

I can accept that not all surgeries will be successful. Even after failing to warn me of bad consequences, if he had come in contrite and said "I'm sorry, this is not the outcome we expected..." and then proceeded to explain what happened and what could now be done. I would have been appeased.

But the only time I saw the surgeon after the surgery, some 6 days after the surgery when he "dropped by", I mentioned that I had asked if if there was any possibility of "mental deficit" or "loss of function" and that he had assured me that there was none. He shot up and said "You have insulted me!". Not a word about the physical insult he had done to my Mother. In his mind it was all about "me, me, me" and how his ego was insulted. So he stormed off. I -- and nobody in the family -- saw him again. My mother died within two weeks of this. Nobody in the hospital told us to "expect her to die".

Instead we were treated like lepers and she was hustled between "treatments". First they sent her off to a "rehabilitation" hospital at which they put her into an exhausting regime that gave her an H. Influenzae infection. From there she was sent back the the Emergency Ward and when she recuperated a bit, they sent her back into the regular ward. At this point she was at wits end about her treatment by hospital staff:

• She had Left Neglect so was completely unaware of things on her left, but they would often leave the service button on the left so she had no way to call staff.


• The hospital would serve food and cutlery encased in plastic wrap that would take two good hands to open, but she had use only of her right hand, so she was left to stuggle alone. Even when they helped set her up to eat, staff didn't have time to make sure she saw all the food or encouraged her to eat it. Instead things would get pushed to the left where they were as good as gone for her.


• A "modern" hopsital is a very inhospitable environment. It is noisy. Lights are on day and night. Loud conversations go on despite signs everywhere reminding people to keep quiet to let the sick hear. Staff constantly disturb you to run tests that they don't explain. You feel like a lab rat being experimented on.

In the end my Mother said "get me out of here!". The only option was via a hospice. So we moved her there.

The hospice staff immediately got on our case telling us that rooms in the hospice were only for those who are "actively" dying and that we had to find a nursing home to move her into. So, not being residents of the town, my brother and I spent most of the days left in my Mother's life on the road visiting nursing homes trying to find a good one. Meanwhile, my Mother died within 6 days of being moved into "hospice". The night before she died she had tossed covers off and when I arrived in the morning I found her body temperature down in the low 80s and she was unresponsive. I put covers over her and within four hours she could respond to simple questions. But she died only a few hours later.

The previous day I had fought with her old family doctor's staff all day long. I was requesting that he drop by to visit her because she wanted urgently to talk to him. I ended up threatening the staff before they finally got the doctor to call me. He showed up at my Mother's bed before his other visits at the hospital. This is the morning of her last day when I had found her unresponsive and cold. I thought "I've got a doctor here, he'll know what to do to bring her out of this". All he did was what I did: call out to her and jostle her trying to awake her. He pulled me aside and began talking about the need to plan radiation treatments. This was within 10 hours of her being dead. In short, he had no clues about the signs of imminent death. Thankfully the hospice staff notice a change in breathing indicating near death so I and my brother were able to be at her side during her last hour.

On the whole, I found "modern medicine" to be absolutely useless. The surgery killed her. It was not a "treatment" other than operating on the Medicare budget to move funds from the public purse to the purses of various medical personnel and institutions. The hospital was geared up for all kinds of "high tech" treatment, but overlooked simple care. The last days of my Mother's life were uncomfortable and terrifying because everything was strange and nobody took time to comfort her. The family was with her as much as visiting hours permitted. But she spent long hours alone.

The worst was when they left her on a metal bedpan for six hours. From that she developed a bedsore because she was very think and bone one metal caused a bedsore. Staff simply didn't take the time to check on the patients. They were either rushing from room to room promising to be back "in a second" or they were busy gossiping about weekends or after work activities in the hallways. Besides, these medically trained people were expensive. The hospitals need to cut back a bit in high tech gear and expensive medical staff and hire some minimum wage people whose job it is to be "patient advocates", i.e. bring a little humanity to the cold indifference of a modern hospital.

My Mother died at the hands of a medical system that spent a small fortune "treating" her. But it was a system that didn't honestly lay out options. That didn't face up to mistakes when made. That didn't respond to problems when they were pointed out. In short, it was a horror story. This is "modern" American medical care. (And Canada isn't much better. It is an institutional problem, not a cultural problem. It is the institution of "professionalism" and hierarchies like a hospital.)

Here is my bottom line:

In choosing a surgeon I had less information to go on than a typical sports fan has on a player. In baseball you get all kinds of stats to help you evaluate the player. In modern medicine, the professional societies and the hospitals refuse to disclose any facts on with a rational decision can be made. You have no information about experience and outcomes in selecting a surgeon. The surgeon is under no constraints to give you real options. The hospital is not required to disclose how many "accidents" or failed treatments they have had. In short, you have to make life-and-death decisions in a void. The professional societies and the medical organizations refuse to give you the kind of basic information that you can get from an innocuous pastime like baseball. It is shocking.

These professionals and institutions have an interest in keeping things opaque. A surgeon makes a living selling surgeries. Why discuss other treatment options. A hospital makes its money "treating" you and if it doesn't have to explain what it is doing or any options you might have, then they can set up things to meet the hospital's needs. Of course the hospital thinks this is best for the patient, but is it really? Just like the police shouldn't investigate police misconduct. A hospital is not really set up to monitor quality and effectiveness. Nor is the medical society. But in both cases, governments have given these institutions -- because they are "professionals" -- a self-regulatory power. That is just plain crazy. Why would they give themselves a hard time? Why would they look for a "better way". It is all too cozy for the incumbents.

Addendum: My Father died within a month of my Mother. He caught the H. Influenzae that my Mother caught at the hospital. In fact my brother and I caught it as well. This was too much for my 87 year old father, so he had to be hospitalized. He spent two weeks in hospital, two weeks in nursing home care, and was released and had one week at home before he died. I put his death down to "treatment" by modern medicine. He had been doing just fine until he was swept up in the maelstrom of "modern medicine" and driven to his end. I just hope that I can avoid the "care" offered by modern medicine.

I do believe that modern medicine has some real skills. Unlike the early 20th century when medicine was finally free of the mumbo-jumbo of blood letting and was getting onto a scientific footing but had no real medicines, by late 20th century modern medicine has much to offer. The problem is that the institutions of hospital and medical societies have failed to come into the future and open up and recognize their shortcomings and seriously try to address these problems. Instead they hunker down in a protective stance more concerned with protecting their "professionalism" than in serving the community.

Update 2009aug29: I removed the surgeon's name. I did send in a complaint to the Arizona Medical Board. I can see that the surgeon was named in a "proposed consent agreement" (see here, and the interpretation of a consent agreement is here). But these meetings are held in private. When I filed my complaint I thought I would get to work with the committee to shape the complaint. No. You get one shot and once you hit the "submit" button that is it. I get no say in the process. In later telephone conversations I was told "you only get to submit once and can't refine or amplify the submission". Additionally, I get no visibility into the deliberations. I get no details other than a thumbs up or thumbs down at the end of the process.

In short, the system is geared to protect the doctors from complaints. As far as I can tell there is no mechanism to track licensed "professionals" to ensure quality. Instead there is this one-shot-in-the-dark complaint system that will, on very rare occasions, allow the public to knock down a malfeasant doctor. But too often, it means that the profession protects its own.

As I told the hospital, I'm not interested in suing anyone. I'm interested in improving the medical system. I tried to work with the hospital's "patient's relations specialist". I sent many long e-mails with many details about deficient procedures and ineffective systems. I got nowhere. And finally gave up.

As for the surgeon, again I wasn't interested in lawsuits. I simply wanted the guy to be aware of the fact that he mislead me and that -- from my perspective -- he did an incompetent surgery (or the fact that he negligently went on holiday immediately after the surgery and didn't instruct staff to watch for a hematoma and deal with it). I wanted some recognition that things went wrong. I can accept that outcomes are not always what you desire. But the fact that before the operation I couldn't get him to admit to any problem enrages me. I want him to face up to the fact that this surgery did not have a happy outcome. But I got no satisfaction from him, nor from the Arizona Medical Board. The system closed ranks and protected their own. This is tragic because it means others will suffer tragic outcomes before someday, somehow, somebody is able to crack this system and shine some daylight in and clean up this self-protective "professionalism".