The importance of preparing for a good death

When the hospital rang to tell me my father had taken a turn, I did as I pleased. I had a shower and took my time before driving an hour into the city.

He was dead when I walked into the hospital room. Dead for so long that his chest had stopped moving, skin the colour of nothing. No one was with him. No one warned me.

Dad, a labour camp survivor, was just 57 years old when he died; and years of working 16-hour days, smoking and eating badly, ended as we would now expect.

In all this time, I've never thought to ask anyone from the hospital if ''turn'' was code for death and I doubt anyone still works there who would know. I was 19, my brother was 14. My sister, in my eyes, a grown-up 26.

I recall this now because of the panicked importance I now place on the chance to say goodbye. If I'd had a few months with my father, saying farewell, it would not have been that much easier but I would certainly have been more prepared. My little brother, my older sister, would have had the chance to be a little readier.

It's National Palliative Care Week and the message is this - make sure your family knows what you want from your dying. They are already consigned to grieving - but the uncertainty? That's worse. Did dad - or your family member - really want to be buried? Or cremated? Flowers? Or donations? A huge hoo-ha or a quiet family ceremony?


Yvonne Luxford, the chief executive officer of Palliative Care Australia, loved the stories she heard at last week's ACT launch of Palliative Care Week. They were, she said, all about the kind of life, not the kind of death, you want at the end.

When dad died, because we had no notice; and we were stoned with pain, more distant family members and friends took over.

Their intent was so well-intentioned. But the outcome was a funereal circus with no moment to pause. Oh, busy. Hand to hand. Rope to rope. Kitchen! Tea! Furious washing up. My mother, my siblings and I, sat on low chairs while everyone rushed around, patting, cooing. At the funeral, I wanted to throw myself onto the coffin.

Can you believe I still feel like this after 37 years? Good thing I pulled myself together by the time it was mum's turn to die.

For those of us left behind, the difference was knowing what mum wanted.

I mean - obviously - she mainly wanted to beat lung cancer but mum was a pragmatic type who knew what the odds were. So we knew who to have to the house, where to get the flowers, what she wanted on her gravestone, who should preside over the funeral service. Also, I got the wedding ring. The rest of the jewellery we quarrelled over for years.

People, make sure you allocate! Or have someone throw it into the pyre (I cannot believe I argued over brooches. I think it might be a way of turning death into piecework. Focus on that and not on the reality. This is how we deal with grief, piece by piece. So stupid. My own children know down to earrings who gets what).

My friend is dying now and she's known for six years. In that time, she's travelled and eaten and sung and swum and been in remission and travelled some more. Did she ensure her husband knew he was loved absolutely? Did she instruct her two lovely sons to find life partners before she died? It looks that way. They are very ready. Calm.

She is certainly the kind of woman who could organise - and she's done that in this dying she is doing now. She is at home, with a palliative care nurse making daily visits, surrounded by family and friends and flowers. There are 200 like her today in Canberra, looked after by the remarkable ACT palliative care teams; still more at Clare Holland House, still more in hospital.

As Yvonne Luxford from PCA says, most of us don't die in accidents - we get good notice; and there is room to tick off the bucket list well before we kick that bucket over, its contents spilt. And make sure you plan those dying days well. Tell your family who you want around - but even more importantly, who you don't want around. It's hard to tell someone to eff off when you can hardly breathe.

Luxford says, unremarkably, that we are not much good at talking about death. I'm awesome when I get maudlin (lots of flowers, lots of singing, lots of food and drink) but the reality is I am still too afraid to die to talk about it with my husband or children. Just, don't burn me. I think I want to be buried which will cause a divorce in death.

Even that makes me cry.

Twitter @jennaprice or email