Ryan’s Rule: Queensland’s patient, family and carer escalation process24 September 2018 | Health Sector
Ryan Charles Saunders was nearly three years old when he tragically died in hospital. His death was, in all likelihood, preventable.
Ryan had attended upon his general practitioner on 20 September 2007 with enlarged glands on his neck and general unwellness. In the days following this consultation, Ryan had eaten very little, was having difficulty sleeping and had become increasingly listless and agitated.
At 1am on 24 September 2007, Ryan appeared to be in a great amount of pain and was inconsolable so his mother called for an ambulance. Ryan arrived at the Emerald Hospital via ambulance at 1:35am on 24 September 2007. Doctors at Emerald Hospital considered Ryan to be acutely unwell and suspected that Ryan may have had a bowel or abdominal issue. Morphine was prescribed to manage Ryan’s pain and he was transferred to the better equipped Rockhampton Base Hospital by the Royal Flying Doctors Service.
Ryan arrived at the Rockhampton Base Hospital at 4:45pm on 24 September 2007. Over the next 22 hours, Ryan underwent a number of diagnostic tests to establish the cause of his pain without success. Ryan’s parents later described that during this time, the doctors at Rockhampton Base Hospital “were happy to let [Ryan] cry in agony for hours rather than do their job... Ryan was left to cope with his excruciating pain and was only given Panadol and Nurofen.”
Critically, blood cultures were not performed until the afternoon of 25 September 2007. At about 3:35pm, Ryan’s blood culture results became available and suggested that Ryan was suffering from a serious infection. Intravenous antibiotic treatment was commenced and a transfer to the Royal Brisbane Hospital was arranged but tragically, it was too late. Ryan suffered cardiac arrest and was pronounced dead at 12:15am on 26 September 2007 at the Rockhampton Base Hospital.
Autopsy confirmed that the medical cause of Ryan’s death was toxic shock syndrome due to a group A streptococcal infection which probably originated in his throat.
The Queensland State Coroner delivered a report which was particularly critical of the decisions made at the Rockhampton Base Hospital to limit pain relief to Ryan to Panadol and Nurofen for the first 22 hours after admission and the failure to conduct blood tests at an earlier time.
The Coroner also found that Ryan’s passing was likely preventable.
In his report in relation to Ryan’s death, the Coroner noted that all of the doctors and nurses who cared for Ryan while he was in the Rockhampton Base Hospital were profoundly distressed by his death, and some had reflected deeply on whether they could have done more and whether a different outcome would have resulted had they done so.
However, the Coroner also stated that the distress of the nurses and doctors pales into insignificance when compared to the anguish of Ryan’s parents. The Coroner noted that his parents had to watch Ryan writhe in agony and listen to him cry and moan while their pleas for stronger pain relief were denied and they were forced to stand by helpless as Ryan grew weaker and slid beyond the point of complaint.
Ryan’s family felt that their concerns about Ryan were not adequately addressed prior to his death. Ryan’s parents described how they watched Ryan’s condition deteriorate while he was in excruciating agony but felt that staff did not have Ryan’s best interest at heart. Despite their pleas for action and stronger pain relief, Ryan’s parents described an uncaring attitude, lack of urgency and poor communication from staff at the Rockhampton Base Hospital.
Ryan’s father describes that on the morning of Ryan’s death, he told one of the doctors at the Rockhampton Base Hospital that he thought Ryan’s condition was deteriorating and that he was concerned that the constant pain and stress that he was experiencing would surely be affecting Ryan’s heart. Ryan’s father recalled saying to the doctor “look at my son… is he going to die or should we get him to Brisbane?”. Ryan’s father recalls that the doctor gave a little laugh and said “oh no, don’t say that”, leaving Ryan’s father to feel that he and Ryan’s mother were the only ones with any real concerns for him.
Following his death, Ryan's family campaigned for a change to the ways parents can advocate for their children in healthcare.
The Health Quality and Complaints Commissions investigated Ryan’s death and made a number of recommendations to minimise the possibility of a similar event occurring in the future.
In consultation with consumers and clinicians statewide, the Queensland Department of Health (Patient Safety and Quality Improvement Service, Clinical Excellence Division) introduced a patient, family and carer escalation process which was incrementally rolled out state wide to all public hospital between December 2013 and March 2015. This process is now implemented in all Queensland Health Public Hospitals.
This process is known as “Ryan’s Rule” in honour of Ryan.
Ryan’s family was involved in the development of Ryan’s Rule and the associated resource material. Ryan’s Rule brochures and patient information posters are readily available and in public view at all Queensland Health facilities.
The Ryan’s Rule escalation process is as follows:
- Step 1: a patient or their caregiver must first talk to a nurse or doctor about their concerns regarding their/ the patient’s condition. If the patient or caregiver is not satisfied with the response, go to Step 2.
- Step 2: the patient/caregiver should talk to the nurse in charge of the shift. If they are not satisfied with the response, go to Step 3.
- Step 3: the patient/caregiver should phone 13 HEALTH (13 43 25 84), or ask a nurse to call on their behalf, and request a Ryan’s Rule Clinical Review.
Once Ryan’s Rule is enacted, a nurse or doctor will undertake a Ryan’s Rule clinical review of the patient and the treatment that they are receiving.
Ryan’s Rule should only be used for concerns relating to a patient’s condition getting worse or not improving as expected whilst the patient is in hospital. Ryan’s Rule is not for general complaints.
Ryan’s Rule is not limited to children and can be invoked for all patients of any age who are being treated in a Queensland Hospital.
In Ryan’s circumstances, the Coroner accepted that the progression of Ryan’s condition from mild infection to life ending septic shock was rare and unusual. It was also accepted that the symptoms of Ryan’s developing illness were atypical, making diagnosis by clinical signs and observations difficult.
However, when implementing Ryan’s Rule, Queensland Health acknowledged that staff at the Rockhampton Base Hospital did not know Ryan as well as his parents knew him. Ryan’s doctors and nurses did not know that Ryan was nicknamed “Happy Chappy” due to his usually happy demeanour and medical staff seemingly did not appreciate that Ryan’s complaints of pain caused his parents serious concern.
From a medical practitioner’s perspective, Ryan’s Rule should been seen as an additional layer of defence aimed at minimising preventable harm to a patient. This is particularly relevant in pediatric patients where a patient is unable to fully describe their complaints and may have difficultly advocating for themselves.
There have been numerous reports of circumstances where Ryan’s Rule has potentially saved lives in Queensland and the feedback released by Queensland Health to date from patients and caregivers has been almost universally positive.
Not only does Ryan’s Rule have the potential to save patient’s lives, it may also reduce the number of compensation claims and disciplinary complaints against hospitals and medical practitioners.
While it is still a relatively new program, it is also hoped that the Ryan Rule reviews will assist Queensland Health to establish if there may be any shortcomings in the care provided to patients and the data collected from the Ryan’s Rule reviews may be able to help formulate protocols to continue to minimise preventable harm to patients.
Where to from here?
At this time, Ryan’s Rule has only been implemented in Queensland. Some other Australian states have implemented policies and guidelines for patients, their families and carers to escalate their concerns but many argue that these programs do not go far enough to ensure that a timely and/or independent review will be available when requested.
Accordingly, there is a push from many medical and consumer groups for the Ryan’s Rule program to be implemented nationally together with a campaign ensuring that patients, families and care givers are aware of their right to escalate care when a patient’s condition is getting worse or is not improving as expected whilst the patient is in hospital.
While Ryan’s Rule cannot change the tragic outcome experienced by Ryan’s family, his legacy has changed the way that Queensland Health listens to the concerns of its patients and their loved ones.