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The 1988 Cartwright Report revived appreciation of the ethical importance of patients’ human rights.
In "The Unfortunate Experiment", a group of women with borderline cancerous cervical disease were part of a research study of which they were neither informed nor gave their consent. The aim was to demonstrate that invasive treatments were unnecessary. Of the 131 women followed-up, 29 developed cancers with eight deaths, and a further six died following non-curative treatment.
Defending themselves, the doctors claimed that they had local medical committees’ approval, and had prevented many women from unnecessary treatment. Cartwright recommended that a Code of Rights and a commissioner should be created. Denial of these women’s rights was eventually recognised and compensated in the courts.
Early this century, developed countries launched screening programmes for the early detection and prevention of colorectal cancer (CRC). Most CRCs arise in polyps, easily removed during colonoscopy. New Zealand has among the highest CRC rates in the world, so this was obviously important. The British NHS demonstrated that successful establishment of complex screening programmes mandated well trained and resourced staff. After considerable persuasion, our Ministry of Health eventually launched the Waitemata pilot programme from 2012-17.
Appeals to increase staff training (including nurses) required to meet the impending expansion of colonoscopy numbers have been repeatedly ignored over two decades.
Launching the National Programme (2018) followed the successful pilot. It was immediately realised that given the favourable response to the pilot, the resources to accommodate the clinical load fell far short of requirements. After a presentation at the highest ministry level in mid-2018, the NZ Society of Gastroenterology published a booklet detailing significant shortfalls in personnel required to carry out both screening and diagnostic services across the country. This deficiency continues.
Officialdom’s solution was to reduce screening programme numbers by increasing the entry age of eligibility from 50 to 60, and reducing the sensitivity of the test, which in itself reduced the detection of cancer by 16%. This diluted programme has been launched gradually across district health boards.
The Southern DHB serves a population with among the highest CRC rates in New Zealand. It certainly merits screening. At that time, it struggled to diagnose and treat patients with symptoms in acceptable time. Clear evidence for this is on record. Compared to other DHBs during 2014-18, SDHB patients had among the highest rates of CRC spread beyond the bowel at the time of initial treatment, the second highest rate of emergency surgery for CRC (both indicative of delayed presentation), and one of the lowest colonoscopy rates per head of population. A 2017 formal university review of the department of surgery commented on serious deficiencies in theatre time available to deal with required workload. Imaging and oncology services faced challenging numbers, now increasingly so.
Increasing complaints from GPs and specialists and patients throughout the region were that symptomatic patients were not being investigated appropriately. Despite this, the ministry gave the SDHB the green light for screening.
Persisting complaints by patients and referring doctors eventually led to three formal reviews of the SDHB Gastroenterology Service, each confirming previous critical findings. The third review (Bissett-Broome) studied 32 of the 102 cases of concern originally notified, revealing cancers in 11, colitis in two, and shortcomings in 19. They were the victims of deficiencies in the service; non-audited cases could well have been similarly disadvantaged.
Despite this, the Otago screening programme proceeded successfully, with now over 200 early tumours detected. An excellent screening programme for colorectal cancer is every bit as important as a quality diagnostic colonoscopy programme for symptomatic patients. However, symptomatic patients presenting during this time were subjected to ongoing unduly stringent access criteria. Review recommendations were ignored. If there should be a choice between screening and symptomatic patients’ rights of access to diagnosis and treatment from a common restrained budget, the latter is sacrosanct. Unfortunate SDHB choices were costly for many patients.
Despite an apology by the then chair of the board, those still at the helm have never conceded any mismanagement, rationalising that more lives were saved than subjected to incalculable risk.
A Crown Monitor had to be employed and, to his credit, corrected distortions in the referral system. However, many other problems detailed in all the reviews remain unresolved.
The National Screening Programme is still being rolled out, with other DHBs placed under undue pressure. Christchurch requires seven extra screening colonoscopy sessions a week. Screening programmes require extension to full potential with adequate independent funding. Importantly, Maori and Pasifika populations develop CRCs at a younger age than Pakeha, and are disproportionately excluded from screening because of age restrictions. The standard for screening needs updating.
Satisfactory resolution is not possible until Health and Disability Commissioner Code of Rights 4 ("The Right to Services of an Appropriate Standard") has been accepted and applied to the care of symptomatic patients in the SDHB. Recommendations made in official reviews also need implementation.
- Gil Barbezat is an emeritus professor of medicine and a past head of the gastroenterology department.