At the time of eminent Sydney head and neck surgeon, Professor Chris O’Brien AO’s death as a result of a malignant brain tumour, the words palliative care hadn’t been mentioned in his orbit. Death was the “elephant in the room”, says his family.
“We were in fight mode,” says Juliette O’Brien, Chris’ daughter.
“He was constantly going from scan to scan and the hope was always that this next thing would work. Until the very end, in fact for me it was the final hours, we were still hoping to find that solution, that miracle, and holding onto that. I don’t think we ever did reach a point of actually saying the words ‘palliative care’.”
Gail O’Brien, Chris’ wife, says while they acknowledged the disease would end his life, they didn’t talk about palliative care or death other than discussing plans for his funeral service about one week before he passed away.
“It’s like it was the elephant in the room,” says Gail.
“Hope is what kept us all going, so that is what we focused on. We needed to keep holding on to hope. But in hindsight, we should not have done that at the expense of also preparing.
“It would have been very helpful to me to have some sort of facilitator or conduit to say to me ‘Gail, when you are ready, we need to talk about this. You may be the lucky ones but the survival rate is not good, so let’s talk about the possibilities and the options.
“I really think palliative is such a scary word to people. Maybe we could use another word. [‘Palliative’] spells death to everybody.”
Professor Chris O’Brien was diagnosed with cancer in 2006 and died in 2009 after being rushed from home by ambulance to RPA, the hospital where he worked and died, encircled by his family.
In a book Juliette wrote about her mother, This is Gail, she detailed the traumatic day when Chris was struck by a sudden burst of ill health at home and Gail struggled to get morphine to alleviate his pain.
Eventually, intensive care paramedics were called and Chris was transported to hospital. There was no understanding of the pain Chris might be in toward the end, says Juliette.
And the word palliative is problematic: “Palliative has a bad branding issue because it’s become a word that terrifies people.”
The idea of having a facilitator other than the oncologist or GP to prepare the patient and family for dying is a good one, says Gail.
“The timing of that conversation is critical. It does need to prepare the patient and family, so that they are better equipped physically, mentally, emotionally and even spiritually,” says Gail.
“And in some ways, it might also give the patient permission to stop fighting – that it’s ok to succumb gracefully.
“None of us thought about talking about it,” Gail says. “We didn’t know what we didn’t know”.
When our loved ones are diagnosed with a terminal illness they deserve the best possible care and support. But, right now, that’s not always possible because there's a shortage of specialist palliative care in NSW. That’s just not good enough. We need the NSW Government to fund an additional 139 doctors and nurses and to meet the palliative care needs of Aboriginal communities.