Yeppoon woman Gabe Watkin dies after battle with motor neurone disease
A doctor says a grieving family should not have to be burying their mother today and has taken aim at the health chiefs who ignored her desperate pleas for an operation that could have prolonged her life.
Rockhampton
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At a time when euthanasia laws and a person’s right to die with dignity were dominating the medical landscape, Gabe Watkin just wanted to live.
The inspirational Yeppoon mother of two was diagnosed with motor neurone disease in July 2017, a week after she lost her mother to cancer.
She did everything in her power to defy the disease which destroys motor neurons, the cells that control skeletal muscle activity such as walking, breathing, speaking and swallowing.
As her family puts it, “she went from being able to run 10km to barely being able to move an eyebrow”.
Gabe passed away on November 18, aged 53.
Her death came about 14 months after she was denied a tracheostomy and laryngectomy (end tracheotomy), an invasive method of ventilation she believed would have prolonged her life.
Queensland Health’s blunt response outlined that treating Gabe ‘would significantly impact on the ability to provide critical care to the rest of the community’.
The denial came almost 12 months after Gabe made the request.
Dr Kirsten Harley, who was diagnosed with MND in 2013, had the procedure in New South Wales in 2018 after suffering catastrophic respiratory failure.
“It has given me three years of life that I otherwise would not have had,” she said.
“It has given me three years of precious time with my beautiful family, parenting my daughter as she has grown into a gorgeous 15 year old and meeting my baby niece.
“Of course MND is a horrendous disease, and many people quite rationally choose to go without possible interventions, to call it quits.
“But those of us living with MND know that, despite our malfunctioning bodies and needing carers to tend everything from our machines to our euphemisms, life can be wonderfully worthwhile.
“The surgery is the gift of life.
“It is routinely performed for people with spinal cord injuries. Why should people with MND be denied the same right to life?
“Gabe was such a beautiful, courageous woman, full of love and life.
“She and her family fought so hard for her right to have a tracheotomy.
“Knowing personally that it could have given her years, decades more time with her family, I am heartbroken and infuriated that her life wasn’t saved.”
The agonising process
It was September 2019 when Gabe wrote to Queensland‘s Metro North Hospital and Health Service asking that the Royal Women’s and Brisbane Hospital approve her request.
The service asked her to submit her request to an ethics committee for review.
“I am mother to two wonderful sons who mean the world to me, wife to the most supportive husband and sister to the five most caring sisters you can imagine,” Gabe wrote in that submission.
“I have been researching this for some time, and realise this will be the first request for this procedure in a Queensland hospital with a patient with MND.
“As part of my research into this procedure (and other forms of ventilation), I know that the tracheostomy has been performed with success in both NSW and Victoria.
“While this procedure is not commonly used in Australia for MND, in other countries it is offered as a standard form of therapy.
“I realise that my location in Central Queensland presents some difficulties, but they are not insurmountable. Getting access to good care should not depend on where you live.”
Having not heard anything for more than four months, Gabe wrote again to the ethics committee.
“I am keen to start this process before my window of opportunity passes,” she wrote.
“My letter to the Ethics Committee was several months ago (September 11, 2019), not having any reply or contact following my letter has been quite distressing.
“I feel that I have a right as a human being to decide to live for as long as possible.
“While I understand this surgery holds some risks, these are risks I am willing to take as without it my time is even more limited.
“I have already lost the use of my speech, and most muscular functions and despite these disabilities, I continue to feel that I have a very strong and positive quality of life.”
Still no reply and Gabe wrote again a month later.
“I feel that having six months (before the COVID-19 outbreak) is a lot of time to consider this given my lifespan average is around 27 months,” that letter read.
Why the surgery was denied
Gabe received a long-awaited response on August 31, 2020.
It read in part: “The RBWH Clinic Ethics Committee reviewed the clinical information available and sought legal and ethical advice in determining an appropriate outcome.
“Unfortunately, the committee has determined that it must decline your request for a tracheostomy +/- laryngectomy to be performed.
“It was concluded that it was not in your best interests and was not clinically appropriate to proceed with the procedure.
“It was also noted that the allocation of resources required for the request would significantly impact on the ability to provide critical care to the rest of the community.
“Your local health service, the Central Queensland Hospital and Health Service‘s (CQHHS), ethics committee also discussed your case at length and provided a written statement to the RBWH Ethics Committee prior to the meeting on the 28/07/2020.
“The CQHHS committee concluded that the CQHHS do not currently have the capability to provide the support required for a ventilated patient with a progressive disease and that this level of care is outside the scope of the Clinical Services Capability Framework (CSCF) for the Rockhampton and Capricorn Coast Hospital.
“This decision of the Committee was largely formed because the procedure is not considered standard of care for motor neurone disease, and that there is a high likelihood that the procedure will not result in the ability for you to return home with adequate health support from the local health service.”
Central Queensland Hospital and Health Service response
“We extend our sincere condolences to the family and loved ones of Ms Watkin in this difficult time.
“We understand they have been living with this debilitating diagnosis for some time.
“The health service acknowledges the lengthy consideration given to Ms Watkin’s request and respects the considered decision of the ethics committees.
“A statewide multi-disciplinary team comprising a range of specialties including intensive care, respiratory medicine, neurology, palliative care, medical administration, clinical ethics and legal services as well as representation from Central Queensland Hospital and Health Service considered Ms Watkin’s request over a number of meetings.
“Multiple meetings are often required over what can be a significant amount of time to allow for the careful, comprehensive and in-depth consideration for sensitive requests such as Ms Watkin’s.
“These are very complex cases that are decided based on the individual circumstances. Currently, there is very little evidence to suggest the clinical benefits would outweigh the clinical risks of the procedure Ms Watkin was requesting.”
The outcome
Sister Rebecca Sullivan said the decision devastated Gabe.
“Gabe was shocked that they wouldn’t consider it,” she said.
“She was pretty upset. She felt she should be considered as important as any other member of the community.
“While the 12-month wait was frustrating for her, I think she had that hope that it could be an option.
“She was relatively young and through her research, she had found people who had lived for years after having the surgery.
“She understood it was different for every person and the progression of the disease was always going to happen, but she was hoping for a few more years.
“She wanted Queensland Health to take that moment to listen to the person and take a person-centred approach to the decision.”
Rebecca said Gabe considered relocating to Toowoomba, as were family, in the hope the surgery could be done there.
“We wanted to support her in whatever she wanted to do,” Rebecca said.
“With the research, her hope was to have it so she could do it an organised way and be with family.
“She did have a fear she would never be able to come back home.”
Rebecca is hopeful that Gabe’s legacy is for MND sufferers to be able to decide their own fate.
“Gabe’s hope was for people to have the option to make a decision about their own lives,” she said.
“She wanted the right to make that decision of whether to extend her life or not.
“While it did not happen for her, her ultimate wish was that others who followed would have that choice.”
Gabe meant so much to so many
Gabe (nee Sullivan) was the second of six daughters for William Sullivan and Barbara Bennett.
Born in Mt Isa on May 17, 1968, she spent much of her childhood in Cooktown.
Gabe was an accomplished athlete, winning several national titles in judo.
At age 17 she met Colin, the man she would be married to for 32 years.
They moved in 2004 to Yeppoon, the community in which they would become firmly entrenched.
They had two children - Cameron and Daniel - who joined the Yeppoon Swans AFL Club.
“Gabe believed that there was no point in being part of the community if you didn’t contribute to it,” her family said.
In 2019, she was awarded life membership of the club, with which she helped raise thousands of dollars for Fight MND.
“Gabe was most proud of her two sons, winning her right to choose her own health directives and raising $130,000 for fight MND to find a cure for ‘the beast’,” her family said.
The fondest memories
Rebecca says she will always remember Gabe’s drive and determination.
“MND is a dreaded disease but Gabe never complained through it all, right to the very end,” she said.
“She never complained about pain, she never complained about not being able to move.
“She was a very strong lady.
“She continues to have an impact on those around her. I had someone say today that Gabe had inspired them to do further studies in the disability sector.
“My kids will never forget Aunty Gabe and all the support she gave them as well.”
How the Yeppoon Swans will remember a special woman
Gabe was a passionate Collingwood fan and she quickly developed a similar affection for the Yeppoon Swans.
She was involved in all facets of the club, from player, administrator and sports trainer to working in the canteen and cleaning the club rooms.
“Gabe was loved deeply, and revered by many,” a club spokesman said.
“Whilst she fought a long hard battle with the beast that is MND, she remained involved in the footy club right up until the very end.
“Gabe was enormously proud of the Yeppoon Swans as we were of her.
“Though Gabe’s fight was hard, her strength, strong personality and generous heart always shone through - and we know that her beautiful fighting spirit will continue on with all those who loved her.
“The sadness we feel at her loss is only outweighed by the love we share for her.”
Gabe will be farewelled at a service at the Sacred Heart Church in Lammermoor at 10.30am on Friday, November 26.
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