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Address to the 12th Annual Anniversary Release of the Cartwright Report

Ron Paterson
Health and Disability Commissioner

4 August 2000

Ron Paterson, five months into his job as Health and Disability Commissioner, spoke at Women's Health Action's function to mark the twelfth anniversary of the release of the Cartwright Report on 5 August 1988.

Before he took up the Commissioner's role, Ron Paterson was at Law School at Auckland University and more lately was Deputy-Director of Safety and Regulation at the Ministry of Health. He has had a particular interest in human rights and patients' rights issues. The following is an edited summary of the main points of his address.

Introduction

Sociologists looking back on the twentieth century will see the Cartwright Inquiry, the research that led to it, and the resulting Report as the watershed event in terms of doctors' attitudes to patients in New Zealand, as the Bristol Paediatric Cardiac Surgery Inquiry, occurring now, is for the UK, or the Tuskegee Inquiry in relation to untreated syphilis in African-American men was for the USA. The sheer fact that we finally have in place a Health and Disability Commissioner and a Code of Rights does represent significant progress. It was a hard won victory. In relation to the issues of informed consent that lay at the heart of the Inquiry, there has been a lot of change, although there is room for more. Today probably fewer than 20% of the complaints to the Office relate to issues of communication, information disclosure, and consent.

However, there is still a long way to go. Recently an opinion came to my desk for signing out, and will appear on our website shortly (see 98HDC15056). The allegation was that prior to surgery in a women's hospital, the anaesthetist did not allow the patient sufficient time to read a consent form, administered a benzodiazepine to her without her consent, and was aggressive and rude in his manner. A particular aspect of the allegation was that the woman had said to him that she did not like the feeling of the oxygen mask on her face. The alleged response - and I found that it did in fact occur - was that she could 'suck on the end of a tube for all I care as long as you get some oxygen'. More importantly, she had carefully noted that because of her own mental health history and experience with benzodiazepines, she did not want any such anaesthetic. Those notes were not read by the anesthetist, whom she met just before she went into surgery. He acknowledged the use of the word 'suck', and said that he used it to describe the method of getting a tight seal on the tube. He said he did not intend to be offensive and was speaking quite light-heartedly, comparing the procedure with scuba-diving. He advised that she was mildly sedated, but still distressed, and that the administration of the drug itself may have influenced her comprehension of his explanation. However, she had not at that time had the drug, and she replied to me that her experience of his manner was anything but light-hearted. He also said that the anaesthetic risk is greater when the patient is anxious. Knowing there was no medical risk with giving a short-acting benzodiazepine, he explained the absence of request by saying that there had been no formal refusal. 'Therefore I made my decision about what was best for the patient.'

Those events were in 1998, and that doctor, who is now in Australia, has been found quite clearly in breach of the Code. However, there is a right of response to any adverse comment under the Act. The doctor wrote:

I wish to express my extreme disappointment at your opinion. I feel humiliated, powerless, cheated because I had just endeavoured to practise my profession according to the best standards of humanity and safety. However I understand that I should endeavor to at least practise more defensive medicine, spend more time documenting the requests of my patients, even if these are irrelevant to the safe administration of the anaesthetic.

The adjudicative function

This right of response raises some important issues. An important part of the Commissioner's job is its adjudicative function. If my final opinion is that there was a breach of the Code, recommendations of consequence flow from that. I have a requirement to act fairly in accordance with the rules of natural justice, and so forth.

For example, in relation to South Auckland Health, I made a considered decision to go public about what I saw as very serious systems issues. I carefully chose to spotlight a case in which it could not be said that the young woman, Amanda Gardner, had died as a result of those systems failures, because I thought that this might be a very useful attention tool. (See www.hdc.org.nz 98HDC21016.) The patient would unfortunately have died regardless, but the way she was treated was appalling. By midday that day the Chief Executive of that hospital was on the phone to me.

I cannot simply alienate the whole community where I am seeking to effect some change. I don't want to get captured by the medical profession or by hospital management, but I cannot afford to have opinion-leaders simply think that the Office is clearly out of touch or on some kind of witch-hunt. The right of response is an unusual feature of the job which is not found in court proceedings. Sometimes you see criticism about bail or sentencing decisions, and then the Attorney-General steps in and speaks in defence of the judge. You never hear the judge speaking. This Office is much more open and accessible.

Informed consent

Documentation - the wrong focus

The Evening Post recently revealed that Capital Coast Health (Wellington) has devised, albeit only in draft form, an 'Additional Informed Consent for Interventional Procedures'. It proposed that the patient sign the following:

'Due to resourcing constraints post-operative care in Wellington's ICU may be available. I may receive post-operative care in a surgical ward or I may be transferred somewhere else. And I consent to any specific additional risks that may arise from the fact that the care is unavailable.'

I stated publicly that I thought this made a mockery of informed consent. The surgeons at that hospital are struggling in very difficult circumstances and I have sympathy for their situation. But their response had been to draft a form indemnifying hospital management for any liability they might have in relation to accident compensation. Yet medical misadventure has nothing to do with individual liability. People feel strongly that we should give some attention to this.

Secondly, the surgeons wanted to be indemnified in terms of being investigated by the Health and Disability Commissioner if someone complained. I called that an exercise in covering your butts. They were trying to use legal processes to get around a very real and serious problem, where there are some questions about the quality of care that people are getting and are going to get at Wellington Hospital.

So although we have made progress in relation to informed consent, there is clearly still some resistance, and there are some very wacky ideas out there. There is still a focus on documentation and on forms, rather than on the process of explaining.

Highlighting complexities of informed consent

Last year there was a court case involving Guthrie Cards. [Ed note: Guthrie Cards are used for storing blood taken from newborn babies. The blood is tested for various disorders.] The parents' relationship had broken up and the mother said he was not the father of the son. The child had died, and the father was seeking to establish paternity as part of his grieving process, by getting a declaration under the Status of Children Act. He wanted to be recognised and identified as the child's father. The woman opposed this, saying she did not know the test had been taken or that the test had been stored. The first judge ordered the Guthrie Card sample to be made available for DNA testing. The second judge, Justice Morris, a former Crown Prosecutor, introduced that evidence and said, 'I can see no possible public policy implications.' As a result, Privacy Commissioner Bruce Slane commenced an inquiry in relation to the privacy issues, and my Office received a specific complaint.

This case (www.hdc.org.nz 99HDC09011) highlights some of the complexities in our health system. From the hospital's perspective, it was the responsibility of the lead maternity carer (LMC) to explain these issues to the woman in terms of the Section 51 contract notice. That does seem to be the case, but it was certainly not the understanding of the busy GP who was the LMC in this case. Karen Guilliland of the College of Midwives says that a midwife LMC might have been more conscious that that was part of her responsibility.

The hospital said they did not know whether or not the consumer had been given the information about why the test was being done, the purposes for the sample, and the fact that the parents had the right if they wished not to have the sample retained, because the technical people taking the blood did not have the capacity to give this information. Therefore it was the LMC's responsibility.

As Commissioner, I find myself trying to devise a sensible and workable system for dealing with these issues. There is a very good, readable brochure for consumers on the test, but it does not cover all these aspects. I have recommended that the brochure be reprinted so that it spells these out quite clearly and specifically explains them. It should also be possible to have a form stating that the woman has been given the brochure, it has been explained, and she is happy for the sample to be taken and for it to be stored, or else that she does not want it stored. That form could be given to her at the time of admission. Presumably there are maternity service managers in the public hospitals who could oversee this process.

To come up with this recommendation, however, we needed to get information from all the various bodies involved - the Royal College of Obstetricians and Gynaecologists, the College of Midwives, and the Royal College of GPs.

Complaints to the Commissioner

Two years ago, on the tenth anniversary of the Cartwright Report, NZ Doctor quoted Phillida Bunkle as saying that the Commissioner had been ineffective and her Office had become another expensive bureaucracy. We have to look at how effectively the Commissioner's Office is working and whether it is meeting the aims of the people who fought for it to be there.

In May 1999, the open files peaked at 1,000. Today there are 580 open files actively under investigation. That reduction is good news. For the whole health and disability sector, the number is unlikely to come down much below 500.

What does need to come down is the average time taken to investigate a complaint. That is currently just under 44 weeks. I would like to see it come down to six months. Some very public investigations have taken two or three years. There are still far too many in the system from 1997 (a few) and 1998 (quite a lot). It is very difficult, particularly in hospital settings where staff change anyway, to investigate matters that go back to 1997 or even 1998. Getting the time down makes it so much easier, because matters are relatively fresh in people's memories.

I have been struck by the absence of complaints from people with disabilities. Perhaps they are so busy fighting for services, and also are required to have ongoing relationships with their providers, that they do not have the energy or support to bring complaints. There is a real need to do more work in this area.

In terms of group providers, we are still seeing many complaints in relation to public hospitals. However, public hospitals do seem to be doing a much better job, first of understanding that patients have a right to complain and, secondly, of addressing those complaints. That is affecting the flow of work that comes into the Office. Approximately 60% of the complaints against group providers are against public hospitals. There are also a significant number of complaints against rest homes. In terms of individual health professionals, as you would expect, around 60% of the complaints relate to medical practitioners, both general and specialist.

Issues for the future

Quality of care

The vast majority of complaints I receive, probably 80%, relate to quality of care. There has been much emphasis in this country over the last few years on quality assurance. Many of the issues that we have seen unfold in Gisborne are quality issues. For example, there were apparently boxes of files that nobody had even done quality checks on when the lab was sold. Talk of 'quality assurance' is empty unless it translates into better care. Do we go down the regulatory route, or down the route of increased attention to ethics?

Merrilyn Walton, former NSW Complaints Commissioner and now a Professor at Sydney University, gave a speech to a medico-legal conference recently about how much work is still needed in the area of teaching ethics to medical practitioners. Later, I hear, one of the doctors present turned to her and said, 'Well that is irrelevant. We learn about ethics at mother's knee.'

A recommendation from the Cartwright Report led to the appointment of David Seedhouse as senior lecturer in Medical Ethics. He was put into the Department of Psychiatry and Behavioural Science, had very little support from the Medical School, and left very frustrated. Fortunately he has now come back to take up a Chair in Health and Social Ethics at AUT. It is clear that there is still a great deal more to be done in relation to the teaching of ethics, both during professional training and in the ongoing education of health professionals and providers.

Advocacy services

Advocacy services need a major re-think. I have commissioned Mary O'Regan to prepare a report looking initially at the guidelines under which advocates are working. These were first issued in 1996. In 1999 there were funding cuts and significant service cuts, and Robyn Stent recommended that the advocates should become employees of the Office. That goes to the heart of the original recommendations: the advocates were to be the Commissioner's 'eyes and ears on the ground' and employed by the Office. Currently our advocates are not as well linked to their communities as they might be, and certainly they are not as well linked as they need to be to our own Office. We need to bridge those gaps. They are symptomatic of the whole purchaser-provider split. We have a Commissioner, an independent Director, a contracted manager of an advocacy services organisation, and staff employed there. It all feels a bit wrong to me, so I am seeking advice.

Quality, safety and accountability

Much of the original thinking about the Commissioner envisaged an Office that would take claims and be more like a prosecution body, which is the model in NSW. But the model we have is different. The Commissioner is required to facilitate the 'fair, simple, speedy and efficient resolution of complaints'. As at 30 June 2000, of all the cases that have been breach opinions, only 15% have been reported to the Director of Proceedings. She then has to have a sort of mini-hearing and to weigh the wishes of the complainant and the public safety. Within those statutory criteria, she has felt able to bring a prosecution in only 50% of the cases referred. Of those 50%, only two-thirds have led to a successful prosecution before the disciplinary body.

We are about to have a debate around whether we should move to a health professional disciplinary or competence tribunal, and whether this should have somebody with the status of a District Court Judge, or a lay majority. This is important, because consumers feel that the accountability piece of the equation has dropped off somewhere.

Consumer advisory group

I feel very strongly that the Office is very isolated. It needs to build some bridges with groups such as Women's Health Action and with consumers generally. In the next few months I want to set up some sort of advisory group of consumers from a range of perspectives, to give me feedback on how the Office is doing, to become involved in our policy and our directions, and to provide support. For the last five years the Office has stood alone. That is not how I want to run it. I need that support - otherwise it is very easy for pot shots to be taken whenever a Commissioner comes out with an unpopular finding. I want to build that support in advance, not come running for it after the event. I welcome some ideas about how we can do this.