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Living with end-of-life possibilities

As Serena Jones faces incurable cancer, she wants to add something personal to the end-of-life choice debate

Seven years ago I was told I had a 25 percent chance of living five years without the cancer returning; two years ago I was given 12 months to live. Plainly the upcoming End of Life Choice referendum concerns me, others like me, and all those involved in my care.

I’ve just put the phone down after my phone consultation. My results are excellent. No new disease showing up in my body and the tumour much the same as it was on the last scan. I’m back ‘under observation’ (meaning a doctor check-in every six weeks and CT scan every three months). It’s an upward-swing of the pendulum, another reprieve – delivered with care, grace, attentiveness, in the best possible way.

This was my post-chemotherapy review and I was nervous, though I’m mostly beyond this now. It’s two years since the cancer – an aggressive soft-tissue sarcoma – spread to the bone in my hip and I was told there was no cure: my treatment from now on would be palliative.

This was a shock. I’d already been through the treatment mill – radiotherapy every day for close on six weeks. And here I was almost over the five-year mark, sitting in a golf cart being ferried to the A&E department of my local hospital.

Two years on, and inconceivable as it seems to me, I’m facing the end of my life. We’re coming up to a referendum on this very topic. I’d like to add something personal to the conversation.

Many hundreds of Kiwi doctors want no part in assisted suicide, and believe that physician-assisted death is unethical and interferes with the doctor-patient relationship to the extent that it crosses a societal line.

Personally, I’ve noticed the reticence most people have around the subject of unexpected or early death, as if it’s either too delicate to speak about or not worthy of attention.

It seems to me we have a natural barrier to facing the end of life. It poses us with an immense challenge, a distinct loss of control. Action being easier than inaction, my first instinct was to fight. I was frightened, I was angry, I was incredulous. How could this be happening to me?

My next instinct was to draw a deep breath, pull myself up tall, and face things square on. A few years ago, my young daughter took me along to hear Joy Cowley speak. Her message was startling: ‘Face your fears in life!’ Her talk had a powerful impact on me: I’m indebted to her.

My initial prognosis was 12 months. It wasn’t long before my oncologist was ‘keeping me alive till Christmas’. Since then my family and I have lived through two Christmases. Clearly, in my case at least, there’s deep uncertainty here. The defining clause in the Act relies on this. I’ll be able to ask for an assisted death.

For me, the doctor-patient relationship is gold dust. There’s no reticence. The care from my doctors is palpable at every turn – in their words and gestures, language and phrasing, in the messages they give me carefully and consistently. I have in them and with them an implicit trust and respect. This has grown over these two years into treasure for me, as precious as the golden egg from the golden goose.

I heard it from my orthopaedic surgeon, in his dismay in discovering that there was another tumour next to the bone in my hip that he had repaired so brilliantly; in his words, "We’ll all work together to look after you."

I saw it in the radiotherapy specialist’s eyes, in her keen empathy in my situation as she worked out whether she could give me more treatment without splintering the bone.

I know it from my oncologist, in her clear language, her determined work in setting out my options, in her delivery to me of the optimum in her capability, while emphasising the uncertainty of the prognosis – "It could develop quickly or slowly;" "There’s very little research." From the hospital oncologist, holding my hand, "You have a horrible cancer, I’m sure you’d rather be at home." From the palliative specialist adjusting my painkiller prescription.

True care is an active and open-ended embrace. It’s a human interaction that, if it truly supports the individual, runs beyond individual care professionals and the community of carers to the nation.

I know it, too, from the young oncologists in the team, from their caring attentiveness to me, and consistent good humour. And from everyone at the local hospice, in their pro-active care, generous personal attention, reliable responsiveness.

Many hundreds of Kiwi doctors want no part in assisted suicide, and believe that physician-assisted death is unethical and interferes with the doctor-patient relationship to the extent that it crosses a societal line. It seems to me we’re risking a great deal here.

This referendum is an opportunity for us collectively to address our fears and recognise we’re in a privileged position. Recently ranked third in the world after only UK and Australia, we’re close to being world leading in our palliative care. How about we demonstrate to the world our commitment to excellence in this area instead of avoiding the issue.

In this debate, much is being made of pain and suffering and the concept of compassion. Compassion is not the same as professional care. It may be easier to express compassion than to take the trouble to ask, listen, and understand. It may be that this ‘compassion’ is a short-cut, or an exit, enabling the ‘compassionate’ to avoid understanding and participating in the actual requirements of care.

True care is an active and open-ended embrace. It’s a human interaction that, if it truly supports the individual, runs beyond individual care professionals and the community of carers to the nation. I experience pain – physical, emotional, all sorts and depths of it – and I’m lucky to have around me professionals and others, concerned and qualified to help me manage each of these.

As my family and I face this disease together, we’re living in the embrace of the palliative expertise surrounding us. It’s a steady, reliable and caring source of support for us, a dedicated approach to meeting the needs of the whole person. I’m lucky – we’re all lucky – to have it.

There are approximately 30 hospices throughout New Zealand, funded by a blend of government and community fundraising and supported by more than 11,000 volunteers. While the system is open to all Kiwis with life-limiting conditions, not all regional hospitals have a palliative specialist, and many senior doctors have not had any formal palliative care training.

Let’s understand that dying is an intrinsic part of life. Let’s talk about what end-of-life care actually is and strengthen, extend and improve what we already have in our palliative care. Such care is a commitment, one we need to make. Euthanasia is an avoidance of this commitment.

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