Source: Radio New Zealand
Unsplash / RNZ composite
- Man with Prader-Willi Syndrome died of multi-organ failure from a complication of undiagnosed diabetes, triggered by perforated bowel that went unnoticed
- Care staff failed to recognise the severity of his condition or seek timely medical assistance, according to the Health and Disability Commission report
- He was not supervised, monitored, nor cared for adequately when he became unwell, investigation shows.
Caregivers at a secure residence for people with intellectual disabilities failed to notice that a 20-year-old man was dying under their watch after suffering a perforated bowel the week before, an investigation has found.
In a report released on Tuesday, the Health and Disability Commission has found “severe systemic shortcomings” in the care by the unnamed provider, including poor staff training and oversight.
The man, referred to as “Mr B” in the report, had the rare genetic condition Prader-Willi Syndrome, which causes people to eat life-threatening quantities of food if unsupervised.
He died in May 2023 after being rushed to the hospital three days earlier, critically ill with diabetic ketoacidosis – a buildup of acids in the blood – triggered by sepsis from the undiagnosed rupture in his small intestine.
His parents complained to the health watchdog that the provider and individual staff members did not adequately care for their son, and failed to manage his Prader-Willi syndrome, which allowed his weight to balloon 20kg in six months.
Furthermore, they said staff failed to recognise clear warning signs that he was seriously unwell in the days before he was hospitalised.
Staff accounts ‘differ’
According to the provider’s account, Mr B “went about his day as usual” (except he declined to attend a morning outing) before his condition suddenly deteriorated.
“At handover (3pm), staff were advised that Mr B had spent most of the day in his room. Staff member A recollected that Mr B had been unwell during the day, but the provider noted that this was not staff member B’s recollection.”
At about 4pm, Mr B called out that he was “dizzy and thirsty”, and was brought drinks.
“The staff member stated that Mr B said that he had felt sick since breakfast and that the morning staff did not check on him, and he had had nothing to eat since breakfast (which is in contrast to a statement by the other staff member, who advised that Mr B had had lunch).”
As he said he was unable to eat solid food, he was given some Weet-Bix softened with milk and reportedly “felt better”.
Staff members checked on him after that, but when they came in to wake him for his medication at 8pm, his speech was slurred, he had wet the bed, and he told them “he could not really move”.
Shortly after taking his medication, staff noticed he seemed “hot” and had developed a red rash on his skin, dry lips and dark bags around his eyes with visible veins on his stomach.
After phoning the duty manager and the on-call health advisor, they were advised to call 111.
Mr B was picked up by ambulance at 8.48pm and taken to the hospital.
The company conceded it had been struggling with staff recruitment and retention at the time, but based on its own review, it said “the actions taken by [staff] were appropriate in the circumstances”.
Care failings ‘severe’
However, an expert adviser to the Commission, John Taylor, who has 37 years’ experience in the disability sector, including working closely with people with Prader-Willi Syndrome, said the service provided to Mr B “severely departed from the expected standard of care in a number of aspects”.
Systemic failures included the ineffective management of Mr B’s syndrome, inadequate leadership oversight, poor record-keeping, and inadequate staff member supervision of Mr B.
Its many failings contributed to Mr B’s rapid weight-gain, and “food incidents” such as Mr B eating an entire plate of ham and “drinking all the milk” in the fridge, he wrote.
From 20 May 2023, there were “multiple failures” in passing on essential information in shift handovers, such as Mr B’s loss of appetite – a major red flag in someone with Prader-Willi Syndrome – frequent bathroom visits, abdominal pain and distension.
“Staff did not recognise the severity of [Mr B’s] condition and failed to seek timely medical assistance.
“They also failed to check on him, monitor his condition or provide adequate hydration.”
Instead, they relied entirely on Mr B to “self-report” health problems.
“It appears that he was largely left alone in his room with no proactive checking. On the morning he was taken to hospital, it appears that the usual staff member didn’t turn up to work and a reliever was called in and this reliever was unaware [Mr B] was in the house for quite some time.”
Death ‘avoidable’
Deputy Commissioner Rose Wall said the company failed to put safety plans in place to “mitigate staff shortages”.
“I accept Mr Taylor’s advice, and I am critical that Mr B was not supervised, monitored, and cared for adequately when he became unwell. I am concerned that the provider staff members’ recollection of events on 27 May 2023 varied greatly, which raises doubts about the accuracy of the staff statements.”
It was “more likely than not” that Mr B was seriously ill much earlier than indicated by staff (due to their lack of knowledge of PWS), and the lack of adequate supervision also explained how he came to eat something that caused his intestinal perforation and subsequent abscess.
“Accordingly, I disagree with the provider’s statement that Mr B was receiving appropriate services.”
Mr B’s worsening health and ultimately his death were “avoidable”, Wall said.
“I am very critical that the provider did not engage in learning about PWS [Prader-Willi Syndrome], and it did not provide appropriate training and resources to its staff members to allow it to provide a safe standard of care to Mr B.
“There was also a missed opportunity to utilise the family resources available to the provider that had been provided by Mrs A, who effectively had been supporting Mr B to manage his PWS when he was residing at home.”
Wall has told the provider to apologise to the man’s family, and made several recommendations, including that it audit management plans for compulsory care residents, revise operating procedures, train staff and review its daily notes and shift handovers.
Provider makes changes
The provider accepted the finding of a breach and the Commission’s recommendations.
It said it had made “numerous changes” since Mr B’s death, including recruiting more staff, creating a new quality manager role, and changed the way it grouped residents in care homes.
“Mr B’s death and the investigation into care provided to him has been taken very seriously by our team, and we are committed to using the learnings from this investigation to support improvements in our services.”
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– Published by EveningReport.nz and AsiaPacificReport.nz, see: MIL OSI in partnership with Radio New Zealand