Money is often believed to be the main motivation of patients who take action against doctors and hospitals. But even in cases where patients have been very severely injured, money is rarely the sole factor driving claims. Please support our petition for no-fault compensation for Australian injured patients.
What injured patients really want
There is striking unanimity in what injured patients say when asked what they want, regardless of whether the context is a no-fault compensation claim, a hospital communication-and-resolution program (CRP), medical negligence litigation or an incident covered by an open disclosure policy. Injured patients want a clear explanation of what went wrong, acknowledgement of their injury, and action taken so that patient safety is improved and others do not risk similar injury.
International health law expert Prof Jennifer Shulz and her colleagues have explored patient experience in New Zealand’s no-fault compensation scheme and in the CRPs run by some hospitals in the United States. In an article published in 2022, she summarised what they found when interviewing patients covered by the New Zealand scheme.
Injured patients, Schulz said, “value tailored responses, rather than one-size-fits-all responses. Secondly, injured patients and their families value opportunities to tell their story and be heard. Thirdly, apologies should be sincere and culturally appropriate. Finally, safety efforts should be undertaken and communicated to patients and their families.”
Their research on CRPs showed the pivotal place of compassion. “Patients and families reported that they felt dissatisfied with ‘resolution’ when institutions communicated with adversarial and hostile tones, failed to communicate patient safety efforts to them, and offered compensation too slowly.”
Litigation does not satisfy all patient aims
Like Australia, Ireland relies solely on medical negligence litigation to deliver compensation to injured patients. In 2023 Irish legal academic Mary-Elizabeth Tumelty published her research on plaintiff aims in such litigation. She interviewed 12 barristers specialising in medical negligence and two patient representative groups, though no injured-patient plaintiffs, “due to the potential for distress to individuals given the subject matter involved”.
Tumelty found five plaintiff aims which she classified in two categories: realistic legal aims, comprising i) financial compensation and ii) a desire for a day in court; and extra-legal aims, comprising i) an explanation, ii) an apology and iii) prevention of recurrence. The extra-legal aims were not considered something that the litigation system could deliver. Only 2% of cases ended up before the Irish courts, so very few patients got a day in court, which left financial compensation as the main achievable aim. She found that lawyers often “conditioned” plaintiffs to accept that financial compensation was all that the litigation system could provide.
In the words of the Patients for Patient Safety group: “Most people accept that what happened is now unchangeable, they are distressed because it happened, but it is very important to them that it wouldn’t happen to somebody else.” The barristers interviewed regarded this aim as something the adversarial system was incapable of addressing. In the words of one: “[…] all the judge is doing is determining what damages you’re entitled to, judges don’t have an ability to dictate how surgical practice follows over the next 20 years or anything like that and sometimes cases do highlight a particular problem, but in most cases they’re simply about liability and damages.”
Discussing options for meeting plaintiffs’ extra-legal aims, Tumelty said mediation was available but had a low uptake in Ireland. She said: “[W]hilst open disclosure does not guarantee prevention of recurrence, it would encourage a commitment to finding out how and why the negligent outcome resulted. […] Given the increasing importance placed on patient safety, consideration should be given to how the adversarial system of litigation and the move towards achieving a ‘just culture’ can align.” Such an alignment seems extremely unlikely, as the values underlying the adversarial system and those underlying open disclosure are fundamentally in conflict.
Australia’s patients and clinicians want a better compensation system
In 2011 Australia’s Productivity Commission recommended establishment of a no-fault National Injury Insurance Scheme covering catastrophic injuries, including medical injuries; the medical injury stream has yet to be implemented. In 2013 Australian researchers Prof Rick Iedema, then Director of the Centre for Health Communication at UTS, and lawyer Donella Piper published details of their findings from interviewing patients and relatives in an open disclosure program.
In 2008 they interviewed 150 Australian patients and their families and found that what patients wanted were: an apology; timely and honest communication; acknowledgement of the error and for responsibility to be taken; reassurance that the incident would not happen again; and emotional support. The researchers reported that most people did not want to litigate even in cases where the service was evidently at fault. Those who litigated did so because they required financial resources to deal with the injury. They said that Australian health services were usually reluctant to offer financial compensation unless there was a finding of liability. “Our open disclosure studies found that both clinicians and patients want a better method of providing compensation, including ex gratia payments, for expenses incurred as a result of adverse events.”
Transparent compensation systems lead to patient safety
Iedema and Piper said it was too early to move to a no-fault system, given the lack of openness about current compensation models and of research on patient experience. There might be ways of “tweaking” the current system to achieve appropriate compensation and more forthcoming attitudes by health services. This, they said, could enable services to reject the “conventional ‘deny and defend’ approach” (though it is difficult to see how services could reject this approach if litigation, with its inherent adversarial stance, remains the sole avenue to compensation). The researchers said that if a no-fault reform was introduced, the public should be granted a greater right “to collaborate closely with health professionals in designing strategies and processes for ensuring that patient safety is enhanced, not sacrificed.”
Improved patient safety is a major concern for almost all injured patients. Yet medical negligence litigation has little positive effect on it. For a start, only a minority of injured patients file negligence claims: in Victoria, only about 7% of the incidents reported by hospitals are filed as claims, but healthcare incidents are well known to be under-reported (Better Patient Safety Strategy 2020-2024). Secondly, only about half the negligence claims filed in Australia are successful, so in Victoria this would mean around 3%. Thirdly, of those claims that succeed, most are settled before they reach court, with no admissions of liability and the injured having to sign non-disclosure agreements. So there is no way of communicating the lessons for patient safety.
Fourthly, negligence claims usually take three to five years or more to finalise. So even those that end up in court, and where the injured patient wins and the result is public, involve substantial delay, during which the same life-changing mistakes may recur with others. Certainly, if an injured patient wins the case and substantial damages, the healthcare system will try and avoid the treatment that was deemed negligent, if it is not already doing so. What is often not realised, and is shown by what happened in Sarah’s case, is that where the injured patient loses the negligence claim, the court decision may facilitate continuation of unsafe treatment.
The power of lived experience to influence change
Vickie and Sarah both suffered traumatic healthcare injuries with lifelong impact. Both experienced first-hand the shortcomings of the medical negligence system. Both used their professional skills to take action to ensure that others did not risk similar experiences.
Vickie suffered life-threatening injuries in 2017 during routine surgery for pelvic organ prolapse. Within days of her surgery, when things should have been settling down, she complained of extreme pain. However, her cries for help went unheeded, even though Vickie was a trained nurse and midwife and led a team that investigated such harm for the state Department of Health. She and her husband were shocked that serious damage to her internal organs was ignored and that she was discharged against her judgement. Her deteriorating condition eventually led her to override her surgeon’s advice. Her husband called an ambulance and she had life-saving emergency surgery within hours of certain death.
The subsequent litigation process was very stressful and protracted: among the attempts to discredit Vickie's claim, the defence produced evidence of sexual assault that she had suffered as a teenager. The hospital never acknowledged responsibility for what happened and the litigation lasted nearly five years. Vickie was so traumatised by what had happened, including the arduous battle to obtain compensation, that she set up a charitable organisation called the FairCare Alliance to support others in similar situations.
Sarah was admitted to hospital in 1990 with a spasm in the urethra and chronic urinary retention. The neurologist initially thought this was due to spinal cord compression. He ordered a myelogram, a spinal x-ray in which contrast medium is injected directly into the central nervous system. When the myelogram proved negative, he diagnosed multiple sclerosis. He prescribed a five-day course of a potent corticosteroid, followed by a five-week course of injections of ACTH, adreno-cortico-trophic hormone, which triggers production of the body’s own corticosteroids.
Both provisional diagnoses turned out to be wrong. Sarah suffered severe damage to her central nervous system. She was left with permanently abnormal electrical activity throughout her brain and spinal cord, activity so abnormal that other people could feel it through her skin for three years afterwards. Initially, she feared that she would end up dead or a vegetable. She survived but had to learn to live with constant nerve pain and the slow but relentless deterioration of her nervous system. Unable to work any longer as a journalist, she spent most of the 1990s lobbying for patient safety improvements and pursuing her compensation claim.
How an injured patient brought about change
In 1991 Sarah lodged a complaint about her treatment with the Complaints Unit of the NSW Department of Health. In 1993 her complaint was dismissed. In 1994 the sections on adverse effects in the product information for both drugs were substantially revised and extended. In 1995 the corticosteroid prescribed was taken off the Australian market. In 1996, two months after her adverse reaction was finally reported, the ACTH product was taken off the Australian market.
As no doctor had been able to explain to Sarah what had gone wrong, she did research to try and work it out herself. In 1997 she circulated about 40 copies of her research summary, Chronic Stress and the Dangers of Myelograms and Steroids, to doctors, scientists and health authorities in Australia and overseas. She listed the risks associated with myelograms, provided details of eight studies showing an increased risk of adverse reactions among women of reproductive age, and pointed to the legal consequences of using myelograms when a non-invasive, diagnostically superior and far safer alternative existed, namely MRI scans.
She also explained the role of corticosteroid hormones in the body’s stress system; drew attention to recent scientific findings suggesting that excess levels of corticosteroids, whether produced by the body or due to steroid drug treatment, could have direct pro-inflammatory effects; and highlighted the relevance of these findings for women of reproductive age. She made recommendations for change, including that patients be allowed to report adverse drug reactions.
In 1998 the federal government introduced a Medicare rebate and substantially increased funding for MRI scans, rendering myelography obsolete. The number of myelograms performed fell from 4,000-5,000 in the early 90s to fewer than 500 in 2002.
In 1999 Dr Ross Wilson, the lead author of the Quality in Australian Health Care Study, advised Sarah to write to the Federal Minister for Health, Dr Michael Wooldridge, about her recommendation that patients be allowed to report adverse drug reactions. Her letter was tabled at a meeting of a resurrected Therapeutic Goods Administration (TGA) committee on consumer reporting. In 2003 Australia’s first national Adverse Medicines Events Line was launched, a telephone hotline enabling patients and health professionals to report suspected adverse drug reactions. Today patients can report directly through the TGA website.
In April 2001 an international panel headed by Prof WI McDonald, to whom Sarah had sent her research, published revised criteria for the diagnosis of MS. The new criteria eliminated the “probable MS” category into which she had been placed, and allowed treatment only once the diagnosis had been confirmed.
No compensation without an expert witness
But no doctor was willing to support her compensation claim. By the time her case came to court in February 2001, Sarah had no expert and no lawyer. Of the 45 potential experts approached, only two said there was no negligence, but none was willing to testify. The court excluded the documentary evidence that she had hoped to rely on, and she based her legal submissions on the defence expert evidence. She lost her case and never received compensation.
At the time the ACTH product was prescribed for Sarah, it was marketed by a well-known European pharmaceutical company. In 1996 the drug was placed on limited access in the United States. On 27 July 2001, the day after Sarah’s hearing was completed, the drug was sold to a US company for $100,000 plus royalties. On 26 September 2001, the day the appeal period in her case expired, the company announced that the drug was returning to general distribution in the United States.
At this time, a vial of the drug cost around US$40. Today, it costs nearly US$40,000. This extraordinary price rise is for a drug that has no proof of efficacy, apart from a few studies on infantile spasm done in the 1980s. Research reported in the Journal of the American Medical Association (JAMA) in 2017 found that there was little evidence that it was any better for adult conditions than far cheaper synthetic steroids. It warned: “Physicians should be aware of this lack of evidence when prescribing this highly expensive drug.”
Injured patients have an essential role in increasing patient safety
Sarah and Vickie believe that injured patients have a key role to play in contributing to increased patient safety. Australia needs a compensation system that incorporates the lessons from injured patients’ lived experience, is transparent, and facilitates the collection and public reporting of data on claims outcomes. Claims data was collected nationally by the Australian Institute of Health and Welfare (AIHW) under the Medical Indemnity National Collection (MINC) and was published until 2014, including data collected by the states and territories from 2003-04. By 2015 the collection had ceased. When Vickie enquired as to why it had ceased and whether it would be reinstated, she was informed that there was no plan to re-introduce it.
Regulatory authorities rely on clinical trials when approving drugs or medical devices for use, but the safety of a drug or device only becomes clear once it is on the open market. Reporting of adverse reactions is essential in establishing the limits to that safety. Doctors are often reluctant to report suspected adverse reactions. Allowing both doctors and patients to report reactions makes the system safer and is an example of the power of lived experience to transform the system for the better.
All the patient safety literature points to the vital importance of listening to patients and placing them at the centre of decisions about care. Injuries can often be avoided by good communication. If medical staff had listened when Vickie first complained of severe pain, she probably would not have endured the terror of coming so close to dying by not being heard.
When patients are injured, our health systems should listen and learn, and not impede patients’ physical, psychological and financial recovery. Our current litigation systems are antithetical to safety learning and continuous improvement. To ignore this is akin to writing off injured patients as simply part of the cost of providing healthcare. If injured patients are unanimous in wanting action taken so that other patients are not injured, it is because such action confirms that what happened to them mattered. Injured patients matter.
Experience throughout the common law countries – United States, Canada, Ireland, the United Kingdom and Australia - makes it very clear that medical negligence litigation, with its adversarial stance, is not conducive to supplying what injured patients most want: a clear explanation, an apology, and action taken to ensure that other patients do not risk similar injury.
Vickie and Sarah are calling for:
- implementation of the medical stream of the no-fault National Injury Insurance Scheme (NIIS) covering catastrophic injuries, a policy which the ALP took to the 2022 election;
- restoration of the funding for the Medical Indemnity National Collection, which was cut by the Coalition government in 2015, to enable data to be collected again on compensation claims and their outcomes;
- and an inquiry into whether the changes to the statute law introduced in response to the insurance crisis of the early 2000s are fair and provide equality before the law between plaintiffs and defendants.
If you agree that Australia’s injured patients deserve a better compensation system and should no longer be hidden from view, please sign and share our petition. If you can manage it, please donate a few dollars so the petition is distributed more widely.
Gratefully,
Sarah and Vickie