Patients and their families harmed by substandard health care can’t sue and aren’t getting justice through the country’s complaints system. Donna Chisholm reports.
The ophthalmologist, however, did not seem overly concerned. As he did at the first appointment, he said he thought it unlikely Kaya’s symptoms were the result of disease, and were probably “functional” – in other words, that Kaya was, for some reason, making them up. He made a “semi-acute” referral for Kaya to see a paediatrician to rule out a neurological condition.
By the time Kaya saw the ophthalmologist, he was terminally ill with a metabolic brain disease – the same one made famous internationally in the film Lorenzo’s Oil. He died six months later, in May 2014. Had he been referred earlier, after his first appointment in August, his life might have been saved with a bone marrow transplant.
In February, 2016, Gibson contacted the Health and Disability Commissioner (HDC) about Kaya’s care, sending an emailed complaint to its website. She thought that would start an investigation during which she’d be interviewed, along with experts who treated Kaya at Auckland’s Starship and shared her concerns about his treatment. A year later, however, Gibson was told the HDC would be taking no further action. It had sought expert advice on the ophthalmologist’s care and decided it was reasonable, and “consistent with expected standards”.
Yet in December the same year, the HDC came to a different conclusion in a case which seemed, superficially at least, to be very similar, after an optometrist failed to diagnose a brain tumour as a cause of vision and eye problems in a six-year-old boy. The boy was left blind in his right eye and with poor vision in his left after delayed surgery. The optometrist was found not to have properly assessed the level of the boy’s vision loss or considered other diagnoses before saying he had “lazy eye” and exotropia (outward turning eye) and prescribing glasses. He’d failed to refer him for further testing or institute regular follow-up.
This time, the HDC launched a formal investigation, and found the optometrist breached the patients’ Code of Rights. Although such cases are often referred for disciplinary action, no such referral was made and no reasons were given.
Now, in a trenchant paper published in the New Zealand Law Review, Auckland University law professor Jo Manning, an expert in health law, has highlighted what she calls the glaring inconsistency in the procedural treatment of those cases, and the raw deals patients and families can get when they complain to the HDC. She says patients, who can’t sue for medical negligence because of our ACC laws, are being denied access to justice. “The HDC complaints process is virtually the ‘only game in town’ for complainants. Yet they cannot access it as of right, nor can either party seek to correct decisions they consider wrong or unjust.” Although ACC decisions can be appealed, the only paths for dissatisfied HDC complainants are to seek an internal review, a prohibitively expensive judicial review, or an appeal to the Ombudsman. And in the latter cases, the review will focus on procedural unfairness and errors of law, not the merits or fairness of the decision itself.
She is calling on the HDC to justify the different procedures and outcomes involving two such similar cases. “If the complainant parents in the ophthalmologist case became aware that the complaint in the optometrist case was investigated and resulted in breach findings against providers, they could justifiably feel the victims of an injustice and that the HDC’s decision not to investigate their complaint accorded insufficient value to their son’s life. Whether the HDC’s decision that the doctor’s management was reasonable was right or wrong, surely these parents should have received a full, independent investigation into the adequacy of their son’s care.”
Arguably, she says, the optometrist was less culpable, since he was not medically trained, and saw the boy only once, whereas an ophthalmologist is a medical specialist whose scope of practice includes diagnosis of diseases of the eye. She told North & South the different outcomes could lead to allegations medical specialists received favourable treatment. A complicating issue in ophthalmology is the small pool of practitioners from whom the HDC can seek expert opinions – fewer than 200 practise here and senior specialists are likely to know each other personally.
For Vicky Gibson, and Kaya’s father Jimmy Miller, it’s about doctors being accountable for how they act, and for patients to feel the system is equally weighted between them and the professionals who treat them. “It feels absolutely that it’s in favour of doctors and you are constantly up against it,” says Gibson. “They went to him and got another ophthalmologist to look at it, but I don’t think they talked to any of my people at all. I’m an educated, middle-class, white woman. If it’s this hard for me, how hard is it for people who are less advantaged than me?”
The process has left her feeling flattened and unheard. “I felt that they want to push you through and take you off their list. It’s very easy for them to have a name on a piece of paper, but unless they can see your face, it’s easy to turn the page. I guess you just throw up your hands. You just want to get on with your life.”
But even when investigations are held and providers are found to have breached patients’ rights – about 60 times a year – they seldom result in disciplinary proceedings or other follow-up because a breach finding is increasingly treated as sufficient accountability. On average, only about 10 providers a year are referred to the Director of Proceedings for disciplinary action.
“Practitioners are likely to face prosecution only in cases of serious misconduct, typically sexual misconduct, misuse of drugs or fraud,” says Manning.
Although most complaints are quickly “resolved” – often by being taken no further – investigations can take two to three years. She says the HDC publishes less information on resolution times than it did before and key dates are no longer included in its reports. “The last two tactics are surely intended to shield the office from criticism for delays.”
Health commissioner Anthony Hill told North & South the paper raised some interesting points “and some to think about”, but he would not say if he thought it was fair. “Some of the things she said are simply wrong; some of the suggestions could be helpful.”
He says complaints are increasing in complexity and investigation numbers are beginning to rise, with 120 completed this year, 102 last year, and 130 expected to be finalised next year. In nearly 500 cases in the past year, the HDC made recommendations that were almost always complied with. “It may not fit your narrative, but the reality is those bring change in our system that improves performance. Consumers say to us that they don’t want this to happen to anyone else. They want the system to improve.” Hill says he, too, is concerned when lengthy delays occur, and the HDC has beefed up its resources for investigations.
The ophthalmologist and optometrist cases Manning highlighted are not similar, even though they appear to be, he says. “They are highly nuanced; highly complex. They are both really complex. They both have very grievous journeys for the people whose stories they are.”
Hill says that in Vicky Gibson’s complaint, there was a careful analysis of what happened and expert independent advice obtained, which found no material departure from expected standards. “So it follows automatically that unless there are other features that would lead us to say there is a departure from the law in New Zealand, you’re not going to go there.”
But Manning disagrees. “There is no point in having an independent watchdog if he is going to blindly follow the opinion of the experts and not exercise an independent judgment. Why not then just get the experts to decide the cases? The law is very clear that the final decision on what amounts to acceptable practice and breach of the code is the commissioner’s, not the experts’.
“The expert’s opinion is relevant and can be influential, especially in cases relating to diagnosis and treatment, but it is not determinative of standards of care. In these two cases, you had inconsistent views of two experts in an area of overlapping practice, and the commissioner could not simply blindly apply those inconsistent views to each case, which would then lead to opposite outcomes. Someone, complainant or practitioner, would inevitably be treated unfairly if he did so, and that cannot be acceptable.”
Hill did not accept the ophthalmologist was somehow more culpable because he was medically trained and the optometrist was not. “The optometrist was assessed against the standard expected of optometrists. Within their discipline, each is fully qualified, so the comparison doesn’t work.”
But Manning says in examining the child’s eye in each case and suspecting (or not) a possible organic abnormality and deciding what to do about it, they were carrying out the same task – although an optometrist would not be expected to diagnose and treat a disease of the eye, but an ophthalmologist could well be. “The law is clear. An ophthalmologist, who is a trained doctor with a specialist qualification [and experience] in diagnosis and treatment of diseases of the eye, is held to a higher standard of care and skill than an optometrist, reflecting that extra training and experience.”
Asked why the HDC didn’t seek advice from specialists outside the country, particularly when the ophthalmologist pool is so small here, Hill says it’s not for him to decide New Zealand specialists are incapable of giving independent advice against their peers. “There is demonstrably no evidence for that. Our process is designed to identify people who are recognised as experts and are of good standing.”
Hill says the fact Gibson felt so aggrieved by the HDC process “is obviously feedback we need to take on board. We say on the website that it’s done on the papers [rather than interviews]. Consumers are contacted quite frequently by the assessors or investigators, so there are telephone conversations and email updates. The process is designed to elicit information, but we don’t want anyone feeling they haven’t been heard. My heart goes out to her because this was a moving and painful case and I’m very conscious of that. But what we do – and I am confident that it worked here – is to make sure the result is fair and just. The conclusion was appropriate on the evidence and I think that was the right outcome.”
He wouldn’t comment on other aspects of Gibson’s concerns, but offered to meet her privately to discuss those. Gibson declined the meeting, saying she was having a hard enough time coping with the anniversary of Kaya’s death in May – on Mother’s Day.
Starship metabolic specialist Dr Callum Wilson – to whom Kaya was referred after his delayed diagnosis – says hospital doctors will often find it much easier than their colleagues in the community to diagnose rare or unusual conditions such as Kaya’s. “We see zebras all the time, they see horses all the time. If they suddenly see a zebra, they miss the zebra. If you see zebras all the time, you pick up the zebras.”
That said, however, given how ill Kaya was at his second appointment on 11 November, he’s surprised the ophthalmologist didn’t send the boy straight to Waikato Hospital for an urgent MRI scan because of the risk the symptoms were caused by a brain cancer – a much more common diagnosis than the rare metabolic disease Kaya had. Wilson says it would be very unusual for an eight-year-old to fake blindness.
“The key is the history – if it’s consistent and he can’t find his shoes or walked into the table, for example, rather than waking up suddenly saying he can’t see and there’s a maths test on today.”
Vicky Gibson, who gave birth to her fourth child six days after Kaya’s consultation with the ophthalmologist, was so worried by Kaya’s condition that she asked Miller to take him to Waikato Hospital on 19 November “and not leave until they could tell us what was happening to our son”. He was diagnosed with adrenoleukodystrophy the following day.
Gibson, who has degrees in psychology and education, and has worked as a caregiver for children with special needs, says she always found the idea of Kaya’s problems being behavioural rather than physical as outlandish, but she felt the ophthalmologist dismissed her concerns. “I know my child. I’m not some irrational, neurotic person. I know what my child is like and he is not like this and that is the bit he did not listen to.” She found it ironic they’d twice paid private consultation fees they couldn’t really afford to make sure Kaya was seen more promptly than through the public hospital. “I thought at our first visit, ‘The professional has got it under control. We are here now. We are safe.’”
In a statement to North & South, the ophthalmologist said although Kaya’s family thought he should have ordered an urgent MRI, the expert opinion was that his decision to refer the case to a paediatrician was appropriate.
“Vicky has been hurt by my suggestion that functional visual loss was a possibility. I am regretful of any hurt this has given her, but it had to be considered and in no way did it imply any negative thoughts toward Kaya himself. I think an independent observer would think that Vicky’s concerns were heard and examined in detail by the HDC process. I imagine she feels disenchanted as the outcome was not what she had hoped for.” He said he could only apologise if she considered he had been dismissive or offhand.
“Certainly, it has been a painful process for Vicky and Jimmy. Obviously to a lesser extent, for me also. I have found myself needing to justify myself in a medico-legal process (which by its very nature I found to be quite challenging and threatening) and somewhere along the line the opportunity for me to communicate with them openly and more personally has been lost. The HDC decisions suggested that I reflect on this case, with a view to identifying those unique circumstances where greater urgency should be given to the referral. You can rest assured that I have certainly done that.”
The doctor acknowledged he knew of the supply issues, but the company had told him they would be resolved and because of that, he didn’t tell Haslam and Daly. The HDC acknowledged Daly had raised a valid concern about the company’s loss of supply, but said the company wasn’t a health provider. As for the alleged breach of the right to be fully informed, the HDC decided the consent form Haslam had signed explained the possibility of this.
Daly vigorously disputed the findings, saying the potential for the interruption in the supply of a lifesaving drug was critical information a reasonable patient would need before making an informed choice about whether to enter the compassionate access programme. “I cannot bring a negligence action in the courts to have my grievance considered. If the HDC will not properly investigate my concern, which all would agree is not a trivial or insubstantial concern, I have nowhere else to go. I am left with unaddressed and unresolved questions about Laura’s death that will persist for the rest of my life.”
Daly told North & South he was happy his case had been raised in Manning’s paper. “There is a lack of consistency when NFA decisions are made. The HDC is the only game left in town and their process is flawed. They are driven by efficiency, and fairness is suffering.”
In another case Manning highlights, two adult children complained to the Ombudsman about the NFA decision on their complaint about a physician’s failure to prescribe antibiotics and high-dose steroids to their 81-year-old mother when she was admitted to North Shore Hospital in April 2013 with severe chronic obstructive pulmonary disease. She was given oxygen and discharged the next day, but three days later was taken by ambulance back to hospital where she died less than an hour later.
The HDC’s in-house GP adviser thought the care met expected standards and the commissioner decided to take no further action. It reviewed the decision – twice – after submissions from the family and another GP before confirming its initial call. The Ombudsman said although an NFA decision was not for him to second-guess, its discretion had been “exercised unreasonably”, given the follow-up advice which identified a moderate or major departure from professional standards, setting the scene for a breach finding if a formal investigation had been done. However, when the case went to an inquest in 2015, the coroner found that, in light of the divided views of the medical experts, the physician’s management was not a significant departure from accepted standards.
Another NFA decision which left a complainant frustrated involved Aucklander Casper Nassau, 45. Nassau was 38 when he was a donor for a bone marrow transplant that went wrong, leaving him unable to walk unaided for most of the following year.
Nassau was a high school student when he signed up to become a marrow donor after donating blood. “I never thought anything would come of it; I was just ticking boxes.” In 2011, however, he was notified that he was a blood match for a French woman with leukaemia – could he become a marrow donor to save her life? Nassau, then in heavy training to achieve his long-held dream of becoming a police officer, asked if the procedure would interfere with his training. “They said no, it was straightforward.” It was anything but.
The procedure, in early 2012, was technically difficult, and the haematologist ended up using large biopsy needles as the smaller needles couldn’t penetrate the bone and mid-sized needles weren’t available. Both Nassau’s sacroiliac joints were damaged during the procedure, in which 1.5 litres of marrow was harvested – five times more than the amount Nassau was told would be taken.
The HDC noted the “inadvertent penetration” of the joints but its expert adviser said the procedure was done with “reasonable care and skill”. The haematologist’s decision to proceed using the bigger needles when the middle-sized ones weren’t available was also reasonable, saying that “by the time of the bone marrow harvest, the recipient has an absolute requirement for the donated marrow and delays are potentially life-threatening”. Postponing the procedure would have increased the risk to Nassau by prolonging the anaesthesia or requiring a second anaesthetic.
The Auckland DHB’s consent forms now explicitly mention the possibility of accidental damage to the sacroiliac joints and the rare possibility of prolonged pain.
Nassau feels “ripped off” by the process, the lack of an appeal mechanism and the HDC’s “lack of teeth”. “It was a joke. What is the point of having an HDC if they can’t hold people to account? I was really devastated at the way it seemed to work in their [doctors’] favour because they only answered questions they wanted to answer, not the ones I requested. I feel betrayed.”
He says he later spoke to the doctor who did the procedure. “He said he wished he had stopped the operation.” Seven years on, Nassau is still trying to qualify for police training.
Incredibly, he says if he could save a life, he’d do it all again. “I said to them I would, despite what you guys have done to me.”
Vicky Gibson wonders what, if anything, was learned from Kaya’s death. Six months after he died, she received in the mail a reminder of a follow-up appointment for her son at the ophthalmologist’s practice. It was addressed to “Miss Kaya Miller”.
HDC annual reports say “no further action” decisions are often taken when:
- The in-house or external expert opinion is that the care was of reasonable standard.
- The conduct departs from accepted practice only to a mild degree and the provider recognises the need for improvement.
- The allegation is not serious and the provider apologised.
- Further inquiry will not resolve the complaint, or evidential issues.
- The provider has made the necessary changes to practice to address the issues.
- The issues have been appropriately addressed in other ways (such as an in-house DHB inquiry).
- There is no apparent breach of the code of patient rights.
What patients need
Law professor Jo Manning says before issues can be resolved, patients with justified complaints need:
- To be heard.
- An explanation so they can understand what went wrong and why.
- An apology that acknowledges the harm caused and accepts responsibility.
- A system change or review of a practitioner’s competence to prevent a recurrence and protect future patients.
- Restoration, such as compensation for actual losses.
- Accountability. For some patients, this may include a desire for sanctions or disciplinary action.
This article was first published in the July 2019 issue of North & South.