Tanya Plibersek: "My dad had the right to die with dignity."

In her Mamamia column today, Shadow Foreign Affairs Minister Tanya Plibersek argues that we need to start talking about death and end-of-life care.

Everyone has a right to die with dignity.

My beautiful father fought cancer bravely, but when it had invaded his bone marrow and his veins were collapsing from the blood transfusions he relied on for white blood cells, he said no to further treatment.

He slipped away quietly, leaving the pain of sickness and the horror of treatment behind.

As a strong advocate for voluntary euthanasia, he didn’t, in the end, reach for the large bottle of morphine he’d been given to manage his pain. It sat at home in the refrigerator, used sparingly, a drop at a time, as he traded off pain for the lucidity he wanted as he said his good-byes.

Like most Australians he wanted to die at home. Like most Australians he ended up dying in hospital. (While 74% say they want to die at home, only about 16% do.)

But he was able to stay home almost to the end, because of great home nursing and wonderful support from the hospice where he was going for treatment.

Australia has one of the best life expectancy rates in the world.  But it doesn’t mean we can avoid talking about dying. It’s important the people closest to you know what you want, and it’s important that our health system supports those choices.

Your family need to know your wishes about being an organ donor.  More than three quarters of Australians say they want to donate their organs, but about half the time families ignore the wishes of their loved ones and prevent the organ donation. My Dad donated his bright blue eyes.

Related: 8 common myths about organ donation. Busted by a doctor.

Your family need to know how much medical care you want and for how long.  End-of-life care, or palliative care, is getting better all the time, but some people don’t want every medical intervention available: they want to go peacefully when the time comes.

When I was Health Minister, I asked palliative care expert, Dr Bill Silvester, to work on a $10 million project to improve end-of-life planning.  That included developing a standard format for instructions that a person could attach to his or her own electronic health record – so their end of life wishes were known to their family and any doctor, anywhere.

Of course, those instructions could be updated through-out your life: as a mother of a young family, if anything happened to me now I would want every intervention that had a chance of working. Perhaps later in life I would consider how difficult the treatment was and make a different judgement.

Euthanasia: should an individual have the right to die?

The conversation about dying with dignity can sometimes become solely about voluntary euthanasia.

The majority of Australians support voluntary euthanasia – as do I – as long as we can come up with a legal framework that protects vulnerable people. Older people fear being a burden to themselves and their family as they age.  As a society we would have to be very clear about the circumstances in which assisted death would be available, and the systems that would need to be in place to ensure people weren’t pressured.

But genuine choice can only be available if we provide the highest standard end of life care.

Assisted dying shouldn’t be the only way a sick person can escape pain. Pain relief has to be top quality and we have to allow more people die at home, surrounded by those who love them. For the majority of people, if you get pain relief right and support them to stay in their own home, they won’t choose voluntary euthanasia.

I believe that for my father knowing pain relief, and even oblivion, were available to him perhaps made bearing the pain easier.

Related content: Tanya Plibersek writes her first column for Mamamia.

For many, knowing they can choose to end their life on their own terms gives them greater strength in a difficult illness.

I wasn’t ready to lose my dad. I don’t think I ever would have been. But I was able to respect his decision to refuse further treatment.  I could see how weak he was physically, how difficult the blood transfusions had become, and how he hated not being able to walk to the bathroom. I could respect his decision because he had told me so clearly that when the time came, I had to let him go.

These issues are complex – undoubtedly.  And it is our habit to avoid these sad topics. But as families, and as a nation, they are conversations we must have.

The Hon. Tanya Plibersek MP is Deputy Opposition Leader and the Shadow Minister for Foreign Affairs.

How can end-of-life care be improved in Australia? Have you spoken to your family about your end-of-life care wishes?