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Crucial end of life Conversations

by Sandra Moon.

The many health professionals oncology patients have to navigate can be overwhelming. Photo - National Cancer Institute.
The many allied health professionals oncology patients have to navigate can be overwhelming. Photo – National Cancer Institute.

‘I feel his organs are shutting down,’ my mother said on the phone.

But how?

Two days before Mum had rung me to ask for help getting Dad to the emergency ward at our local hospital. I burst into tears worried that he may enter hospital and not come out. I knew he was sleeping a lot, in pain, feeling unwell and his appetite had decreased but this?

My father has a terminal cancer diagnosis (prostate) and the oncologist had not so long ago told him he probably had eighteen more months left to live.

But doctors can be wrong, right? Australia’s Cancer Council’s End of Life booklet says, ‘A doctor can only give you an estimate (prognosis) based on what usually happens to people in your situation but can’t say exactly what will happen to you.’ Patients have lived for far shorter and longer than their prognosis and by all purposes Dad looked like he would be one of them. He had already survived melanoma cancer as well as stomach cancer.

So, for my father were the lights truly going out? I thought, Mum knows her husband of fifty-seven years better than anyone.

When I arrived at his bedside his face was ashen, and he was so tired he could barely talk or sit up. It was as bad as it had been. Dad was a fighter, but I wondered as Mum had, if this was his body giving up and saying ‘no more’.

Like many cancer patients, Dad’s separate and complex medical issues have separate health professionals. To get all the information required to understand what is going on requires a clear head, strength of character and a determined diligence. It’s tough.

It requires a steadfast resilience to arrive for visiting hours early and constantly be there to ensure you won’t miss the few minutes that the doctor sees them on the ward.   We ended up writing a list of questions to ask the surgeon. The surgeon’s registrar came to see Dad and Mum was there early to get the answers we had sought. She diligently relayed the information to me, and we felt relief until I realised the information didn’t marry up with what the oncologist’s team had said.

So, then there was a new list of questions for the oncology team. Making sure all the medical professionals were on the same page meant having to take the information to each health professional. There is the surgeon, the oncologist, another specialist and a GP.

Amidst all of this my mother happened to be there when a nurse queried why his iron drip was on a slow release and quickened the release, until my mother said, ‘Hang on it’s because he only as one kidney.’

Had she not been there the co-morbidity would have been unnoticed and his life risked.  And so, our week went with my mother and I sitting by his bedside like familial guardians of his health and wellbeing. We ensured that mistakes weren’t made, information was received and passed on. 

Dad has now been moved to a private hospital to recover and then what are we facing? My parents have recently moved to a retirement village in a shift that was to help reduce stressors in their life. It is also undeniably a move to help Mum imagine a life for herself after Dad dies.

So, after Dad leaves the hospital what then? The conversations will have to be brave. Can he remain at home for his palliative care? What help is there for him to stay at home as a palliative care cancer patient? And where and how would he like to die?

Whilst dealing with all this I have found Australia’s Cancer Council’s Facing End of Life booklet full of practical tips and encouraging for readers. They have thought of absolutely everything to support the dying and their family and friends.

The booklet could spark some courageous conversations. I urge you to read it and while you’re at it, you could think about some other ideas. When considering a funeral, maybe take another step and throw the party beforehand with a living wake.

And to read how facing death is good for the aged, revisit Good Grief’s discussion with Helen L’Orange who firmly believes in planning for a good death.

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