Nola Marino (Forrest, Liberal Party) Share this | Link to this | Hansard source

As the co-convener of the parliamentary end of life care group, I was delighted to be part of National Palliative Care Week yesterday and the launch of the Palliative Care Australia community awareness campaign and the guide to social media after life. This is the campaign aimed at getting Australians to talk about dying. Through a new community awareness campaign featuring prominent Australians doing just that—talking about dying—we heard from Jean Kittson, a very well-known and loved writer, comedian and performer of stage and screen in this country. Jean is also the patron of Palliative Care Nurses Australia who is very committed to the work of PCA.

Connie Johnson was a particularly inspirational but incredibly moving speaker. Connie is a mother of two children who has had to fight two cancers—a bone tumour at 12 and a tumour in her womb at 22—before being diagnosed with terminal breast cancer at the age of 33. She is now 38 and agreed to be part of PCA's campaign as part of her and her brother's commitment to raising community awareness, hoping that other young mums like Connie will not have to say goodbye to their children at such a young age. Connie encourages others to be 'breast aware and not fall into the booby trap'.

Connie co-founded Love Your Sister with her brother, Samuel, sending him off around Australia on his unicycle to raise funds for breast cancer research. Sam raised $2 million on his ride. Connie spoke about one very important thing she has done for her family and her own peace of mind. She has written what she calls her 'death book'—the explicit instruction and plans for each stage of her care and treatment ahead. As well, she has detailed exactly what she wants done for her funeral and has all the relevant legal documents. What a wonderful thing to do for her family—to take away the guesswork, the worry about what to do, when and how to do it and if the decisions being made are what she would want. Her family will be doing exactly what Connie wants because it is written down and she has discussed it with her family and medical support team.

The Assistant Minister for Health, Senator Fiona Nash, launched Palliative Care Australia's practical booklet called 'Guide to a social media afterlife'. This booklet gives clear information of what happens to your social media accounts when you or someone you love dies—the different rules for deletion, deactivation, data downloading and memorialisation on Facebook, Twitter and Instagram.

In closing, I acknowledge the commitment of the board of Palliative Care Australia, Professor Patsy Yates, the other board members as well as CEO Liz Callaghan and her hardworking team. As a previous guest speaker of PCA, Dr Sarah Winch, said:

We haven't cured death; and we're not likely to, so why don't we plan for one of life's certainties.

Every Australian needs a plan to die—you only die once!

That is what Dr Sarah Winch said. Truer words were never spoken. So take the pressure off your family, those who love you most and want to do their best for you. Put together your advance care plan, your advanced health directive and your enduring power of attorney—all that is needed.