New Zealand man with Huntington’s disease dies in smoking accident

Just two days earlier Adam Duncan had been caught lighting up in his flat – something he was not supposed to do – but managers failed to appreciate the risk it posed him, a coroner’s report reveals.

Duncan, 29, lived in a flat at the Te Ruru centre in Christchurch, a specialised facility for people with Huntington’s operated by NZ Care Group Ltd.

His clothing caught alight while he lit a cigarette inside his unit on January 28, 2017, and he died two days later in Christchurch Hospital of complications from burns.

His family were worried he wasn’t supervised when he was smoking, and eventually took a private prosecution against NZ Care, but later dropped it.

Duncan had been diagnosed with Huntington’s Disease at 14. Symptoms of the progressive neurological disorder include involuntary movements and impaired judgment.

He was described as intelligent, caring, articulate, thoughtful and with a great sense of humour. Despite his terminal condition, he enjoyed activities including gardening, fishing, watching movies, swimming, and community events.

Coroner Heather McKenzie found that while Te Ruru staff supervised Duncan while eating and around water, he was not supervised while smoking.

He was not supposed to light up in his unit, but two days before the accident a staff member reported him doing so, and warning him of the dangers. Burn marks had been noticed on his clothing and his carpet.

A clinical review of Duncan’s condition a few months before his death noted “increasing risk of burns and falls. Also increasing risk of choking”.

The coroner commented that smoking might give sufferers of Huntington’s disease some autonomy, independence, and pleasure “in a life which might be becoming increasingly confined.”

Two other residents at Te Ruru smoked – one did not have free access to their cigarettes and the other had theirs held for them while smoking. Staff did not consider Duncan to be at the same stage of his illness as those residents, the inquiry was told.

The coroner said Te Ruru managers knew, or should have known, of Duncan’s smoking safety risks.

A review into the issue could have considered supervising his smoking, access to his lighter and cigarettes, and non-flammable clothing or a smoking apron.

“The general non-reporting of smoking-related safety observations compromised the ability of NZ Care’s management to fully appreciate the extent of Mr Duncan’s smoking safety risks in real time,” McKenzie said.

She said a safety review might not have been straightforward, as Duncan’s “escalating behavioural difficulties” might have intensified if his routine was altered.

When the fire happened, Duncan, who sometimes used a wheelchair, walked to the main house for help. The fire alarm sounded, alerting two staff members.

One rushed him to the bathroom and doused him with water to extinguish the flames, while the other evacuated the facility.

A Fire Service investigation found Duncan’s lighter, rather than the cigarette, set him alight.

The staff member who washed him down was subsequently diagnosed with post-traumatic stress disorder.

Duncan’s mother, Pauline Roberts, told the hearings she had raised the issue of his smoking and the burn marks in person.

“I trusted Te Ruru fully with Adam’s care … I trusted them to do their job and protect Adam from obvious risks,” she said.

“We were worried that he wasn’t supervised enough and to us it was management and staff who needed to take it seriously and address it.”

Roberts’ partner, Russell Parry, said when Duncan had been at Hillmorton Hospital for respite care, cigarettes and lighters were kept locked away, and he coped with that.

One Te Ruru staff member told the coroner’s hearing there was no written policy about helping clients with smoking, and no training on how to help clients.

The coroner’s report said that since the fire, NZ Care has instituted changes including updating its smoking policy and hazard register, conducting a national review, giving staff refresher training, and developing national guidelines.

The coroner described the incident as an extremely traumatic event for everyone involved.

She declined to make any recommendations, saying steps taken since “significantly mitigate against the chance of further deaths occurring in similar circumstances”.

NZ Care is now part of NZ Health Group. Chief executive Jane Kelley said it accepted the report’s findings and expressed condolences to Duncan’s family and carers.

“We know this has been a very difficult time for all those involved,” Kelley said.

“Our skilled team are absolutely dedicated to providing people we support with tailored disability support services to enhance their independence and achieve their goals in their community.”