If someone attacks you with a knife they go to prison. But what if it's a surgeon?

(This is the gist of an article I wrote for New Zealand's Listener magazine.)

Last year I was diagnosed with aggressive prostate cancer. I had an operation to remove the prostate, known as a radical prostatectomy. This is an invasive procedure which leaves you incapacitated and wearing a catheter for the next couple of weeks. Typical side effects of the operation are damage to sexual function, a degree of incontinence, and increased urgency to urinate. This I accepted as the cost of removing a potential deadly disease from my body. However, as it turned out I should never have had the operation at all. ?

The problem was not so much that the operation didn’t remove all the cancer, but that it couldn’t possibly have done so. The actions of the surgeon in carrying out this unnecessary procedure left the radiation oncologist who assisted with my ACC investigation calling for an immediate complaint to the Medical Council, led to a delay in treatment of my cancer, and further compromising side effects.

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Doctors are people too, and while the New Zealand healthcare system is full of many dedicated and hardworking people, from time to time there will be issues. One measure of the overall health of the system is how well it deals with failings when they occur. In this case it wasn't just the system that was found lacking, I would suggest, the systems set up in order to police this system are failing too.

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It’s been 11 months since I made a written complaint to the Office of the Health and Disability Commissioner (HDC). Only last week did they decide that they would look into the case at all, and they anticipate that process taking at least another six months. The Medical Council, which says it has strong legal powers to protect patients from harm when a doctor falls short of its standards, has decided to wait for the HDC decision before taking any action.

While prostate cancer is considered a relatively survivable form of cancer, it still kills many men.?If treatment is necessary the initial choice is generally between surgery, to remove the diseased prostate, or radiotherapy which can also destroy cancerous areas in and around the prostate. Both methods are designed to be curative (to rid the body completely of cancer) and are presented to the patient as being roughly equal in terms of risk, efficacy, and side effects. The decision would therefore come down to the patient’s choice between the discomfort and dangers of surgery versus the inconvenience and stress of undertaking radiotherapy every day for a month. .

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The initial contact for prostate cancer treatments is a urologist, all of whom are surgeons. In this instance, I opted for surgery which several friends had already undertaken.?

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A month before the operation was scheduled, the surgeon recommended that I have a scan to check that the cancer had not spread beyond the prostate (PSMA PET CAT scan for the medically minded). This was important, because any spread meant that the operation could not remove all traces of cancer and therefore that radiation would be the recommended path. The surgeon reported back that the scan was clear, other than a slight mark on the ribs which was deemed inconsequential, and thus the operation should proceed as planned.

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I went into hospital, and after a couple of weeks to allow my body to calm down from all the joy and relaxation that only an invasive operation in the groin can bring, I undertook PSA blood tests to check that the operation had worked. It hadn’t. I still had cancer.

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A second PSMA scan revealed that traces of cancer were present in a number of nodes in the pelvic region. The surgeon told me that these had not shown up on the first scan and that radiation therapy was now recommended. Definitely not ideal, but these things happen.?

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I was packed off to see a radiation oncologist who went through my medical notes to confirm the process so far. In a matter of fact voice they noticed that the cancer spread had in fact been picked up by the first, pre-operative scan. I was stunned. Even with my limited medical knowledge it seemed to me clear that therefore the operation should never have taken place. Instead, radiotherapy should have been undertaken which could have treated both the prostate and the lymph nodes at the same time.? Because the surgeon had failed to reveal the spread of the cancer I could not possibly have made an informed decision on which treatment to undertake.

PSMA scans are 95% accurate. But in the subsequent report, it is noted that the surgeon claimed to believe that the first scan overcalled the disease due to the small size of the cancers, potentially causing this to be a false positive report. This seemed bizarre to me as the local lymph nodes were the most likely place for cancer to be found. And even if there was doubt, then radiation would be the most likely option.

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When the ACC (New Zealand's Accident Compensation Corporation) came to investigate what happened, an expert radiation oncologist consulted by ACC wrote they were “flabbergasted” by the surgeon’s comments as it was clear from the original report that the cancer had spread. They added that anyone contemplating a radical prostatectomy should automatically get an opinion from a radiation oncologist.? But this did not happen. They went on to say, “The ACC should consider if this requires referral to the Medical Council as this, in my opinion, represents a serious breach of the code of patient rights.”

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Therefore, having been through the stress, dangers, and considerable side effects of a pointless operation, I then required a month’s radiation treatment with further physical damage. The radiation treatment couldn’t be carried out immediately because of issues associated with irradiating an area that’s recently undergone surgery.

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So it was a full six months after the time of the first scan that I underwent a month’s radiation treatment. The subsequent PSA tests have indicated that cancer is still present, and I am awaiting further treatment.

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To add insult to considerable injury I had myself paid tens of thousands of dollars for this errant surgery. Understandably, I wasn’t very happy about this, so set out to see how I could address the situation.?

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My initial reaction was to sue. In the U.S. a case of wrongful removal of the prostate had resulted in a US $12 million payout which would undoubtedly have gone some way towards retribution. However, under New Zealand law you are not allowed to sue doctors. Instead of the legal system providing protection for patients, the ACC is supposed to provide compensation and assistance. While this may be handy for medical miscreants I’m not sure that it’s working for patients.

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I duly filled in the complaints form and after six months the ACC announced that they had come to a conclusion on my claim, having consulted two independent experts. They accepted the fact of an unnecessary operation and would pay me compensation for permanent injury. A further quote from one of the independent specialists who reviewed the case states: “This man has, in my opinion, received an unnecessary radical prostatectomy and lymph node dissection due to his surgeon not appreciating the results of his scan which clearly showed he had inoperable disease.”?

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For this “treatment injury” the ACC paid me compensation of $36,000. Now this may seem like a decent sum, but the damage inflicted has permanent effects which this really doesn’t cover. Also, the compensation was considerably less than the $51,000 that I had already paid myself for treatment. Consequently, I had lost money, the taxpayer-funded ACC had lost money, but the surgeon was financially untouched and could keep practising. After I pointed this out the ACC subsequently decided to refund most of the cost.

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Still feeling aggrieved, I wrote to the surgeon suggesting that perhaps they might feel inclined to pay compensation for the damage which they had profited from. This was declined.

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Meanwhile, the HDC is only just now starting to investigate. The HDC’s website records that less than 10% of complaints are formally investigated. An investigation can result in a written apology as well as specific training for the provider and other preventive remedies, which seems pretty toothless to me. If an investigation raises competency concerns, HDC may recommend a review by the practitioner’s registration authority, for example, the Medical Council, so I contacted them.

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The Medical Council informed me that although it had been notified about the case by ACC, it has no plans to take action before the HDC releases its decision. “As this matter concerns the standard of care provided to you as a patient, it is appropriate that the HDC considers the matter in the first instance. Unlike the Council, the HDC can assess/investigate all aspects of the care provided to a patient, including the involvement of the various practitioners/providers involved. The HDC can also look at systems and processes at hospitals or medical centres,” the Council wrote in its rationale for doing nothing.

The HDC claims that the reason for its glacial response is the large backlog of complaints they are already dealing with. I would suggest two reasons for this. Firstly, complaints are backing up because they’re dealt with too slowly, secondly, the system itself is leading to more complaints because of its tardy toothlessness. If medical practitioners are not called to account for their mistakes, certainly not in the ‘timely’ manner that HDC Commissioner Morag McDowell values, we can hardly be surprised if they keep on occurring. For example, in this instance, had I not had the time and the indignation to keep pushing this matter myself nothing would have happened at all, this increasing the likelihood that it would happen again. Personally, I don’t believe this is healthy for anyone.