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 that 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 led to a delay in treatment of my cancer, and further compromising side effects.
It also prompted the radiation oncologist who assisted with my subsequent ACC investigation to call for an immediate complaint to the Medical Council.
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 to police this system are failing, too.
It’s been a year since I made a complaint to the Office of the Health and Disability Commissioner (HDC), the watchdog body set up to protect patients. Last month, it decided to look into the case, a process it anticipates will take at least another six months – that’s as an “urgent” case. 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.
Hard choice
Although 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 were presented to me as being roughly equal in terms of risk, efficacy and side effects. The decision would therefore come down to me choosing between the discomfort and dangers of surgery versus the inconvenience and stress of undertaking radiotherapy every day for a month.
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.
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-CT scan, for the medically minded). This was important because any spread meant that the operation could not remove all traces of cancer and radiation would instead be recommended.
The surgeon reported back that the scan was clear, other than a slight mark on the ribs, which was deemed inconsequential. Thus, the operation should proceed as planned. 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 (prostate-specific antigen) blood tests to check that the operation had worked. It hadn’t. I still had cancer.
A second PSMA scan revealed that traces of cancer were present in a number of lymph nodes in the pelvic region. The surgeon told me these had not shown up on the first scan and that radiation therapy was now recommended. Definitely not ideal, but these things happen.
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, the radiation oncologist noticed that the cancer’s 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 the prostate and the lymph nodes at the same time. Because the spread of the cancer had not been disclosed, I could not possibly have made an informed decision on which treatment to undertake.
PSMA scans are highly accurate. But in the subsequent ACC 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.
When the ACC came to investigate what happened, it consulted two independent experts. One, a radiation oncologist, wrote they were “flabbergasted” by the surgeon’s comments, as it was clear from the original report that the cancer had spread. The expert added that anyone contemplating a radical prostatectomy should automatically get an opinion from a radiation oncologist. But this did not happen. The expert 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.”
Cancer still present
The consequence was that 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 the area operated on needed time to heal.
It was a full six months after the first scan that I underwent a month of radiation treatment. The subsequent PSA tests have indicated that cancer is still present, and I am awaiting further treatment.
To add insult to considerable injury, I had paid tens of thousands of dollars for this unnecessary surgery. Understandably, I wasn’t very happy about this, so set out to see how I could address the situation.
My initial reaction was to sue. In the United States, one case of wrongful removal of the prostate had resulted in a US$12 million payout, which would undoubtedly have gone some way towards retribution. But our accident compensation system means you are not allowed to sue doctors. Instead, the ACC is supposed to provide compensation and assistance. While this may be handy for miscreant medical professionals, I’m not sure it’s working for patients.
Six months after I filed a complaint to ACC, it accepted the fact of the unnecessary operation and awarded 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.”
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 that this really doesn’t cover. Also, the compensation was considerably less than the $51,000 that I had paid for private treatment. Consequently, I had lost money, the ACC had lost money, but the surgeon was financially untouched and could keep practising. I pointed this out and the ACC subsequently decided to refund most of the cost.
Bureaucratic wheels
Still feeling aggrieved, I wrote to the surgeon suggesting that perhaps they might feel inclined to pay compensation for the damage. This was declined.
Meanwhile, the HDC is just starting to investigate. Its 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, which seem pretty toothless to me (see “Complaints backlog”, opposite page). If an investigation raises competency concerns, the HDC may recommend a review by the practitioner’s registration authority, in this case, the Medical Council. So I contacted it after the ACC report.
The council informed me that although it had been notified about the case by the ACC, it had no plans to take action before the HDC released 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 with which it is already dealing. If medical practitioners are not called to account for their mistakes in the “fair, timely” manner that Health and Disability Commissioner Morag McDowell says she values, we can hardly be surprised if they keep on occurring. In this instance, had I not had the time and the indignation to raise this issue and keep pushing this matter myself, nothing would have happened at all, increasing the likelihood that it will happen again. Personally, I don’t believe this is healthy for anyone.
Complaints Backlog
Patient complaints have risen 43% over the past five years and the Office of the Health and Disability Commissioner (HDC) can’t keep up. In the 2022/23 year, the office received 3353 complaints, its annual report says. One reason was a surge in complaints about treatment delays caused by the pandemic.
The HDC, which received $19 million in funding in this year’s Budget, says it is now resolving more cases: 3048 in 2022/23, up 16% on the previous financial year. But there is a growing backlog. Just 75% of complaints are resolved within 12 months. In June, 11% were more than two years old.
A spokesperson says the average resolution time for complaints differs, depending on the method used. “Unfortunately, with the significant increase in complaint volumes we are not able to close the complaints as fast as we’d like and there is a gap between the number we receive and the number we are able to close.”
The vast majority of complaints are not formally investigated. They are either referred on – often to the HDC’s Advocacy Service but sometimes to other agencies or the health provider – or, for a significant number, no action is taken.
In mid-November, about 9% (266) of 2823 complaints in progress were formal investigations, which usually take about 12 months to complete.
HDC staff look for breaches of the Code of Health and Disability Services Consumers’ Rights, which covers rights ranging from respect and freedom from discrimination to informed consent and the right to services of an appropriate standard.
In cases where the office finds against the health provider – whether an individual, rest home or hospital department – its powers are limited to recommendations. These could include the professional undergoing further training, a review of policies and processes and/or a formal apology to the patient.
It can also trigger an investigation by the health professional’s registering body, for example, the Medical Council.
With serious breaches, it can refer cases to its director of proceedings, lawyer Courtney McCulloch, who might refer them on to the Health Practitioners Disciplinary Tribunal or the Human Rights Review Tribunal, or both.
In 2022/23, the HDC referred 16 providers in relation to 30 complaints to its director of proceedings, who successfully prosecuted four before the disciplinary tribunal and filed proceedings against another two. A further four cases went to the review tribunal. – Ruth Brown