Michelle Hooke is an Aboriginal woman who, as a registered nurse, has specialised in palliative care since 2002. She has worked as a palliative care nurse consultant and nurse unit manager in inpatient, community and acute settings. Now focussed on facilitating student placements for the Victorian Department of Health and Human Services, she also works casually at a residential aged care facility where she introduces conversations about advance care planning and palliative care at every appropriate opportunity.

Below, Michelle answers questions from the Aboriginal and Torres Strait Islander (ATSI) Discussion Starter. The questions have been designed to get ATSI people thinking about what would happen if they were so sick that someone else had to make decisions for them. Download the full ATSI Discussion Starter here, because talking now can help your family in the future. If your family and health worker know how you feel and what you want in advance, it will make their decisions easier and less stressful.

What are some of the things you value most in life?

Family, communication, community and social justice.

For me family is broad; a family is made up of those you love and with whom you connect, not only those who are of blood.

My sons, grandchildren and the people who support me and make a difference in my life are my family and I value every ounce of them.

Life experiences, good and bad, define me and make me the best person possible.

Palliative care and bringing conversations about life and death back to community is especially important to me.

Raising Aboriginal cultural awareness in mainstream healthcare is of particular importance. Through perseverance and tenacity, I was able to persuade management to recognise the value of traditional ceremonies. In my role as a palliative care nurse, I delivered smoking ceremonies in a major tertiary hospital to two Aboriginal gentlemen on separate occasions and arranged for a Yidaki player to be present to aid in the healing process for an Elder.

It is essential that we ask the most important question: How can we provide a safe and culturally acceptable environment for our mob in their most vulnerable stages of life?

What brings you joy and happiness?

Often it is the little things that make my heart sing. Going home to the place I was born and bred (Murchison, on the Goulburn River in Victoria, which is in Yorta Yorta country); walking along the river, birdsong, the sky and obviously my family.

My youngest granddaughter, who is six years old and lives with her mother, stays with me on alternate weekends. Her mother acknowledges the importance of her connecting with our heritage and culture through me. To see and experience everything through my granddaughter is exquisite; her innocence and curiosity are endless. It inspires me to ensure my family stays in touch with our culture and connected to the story of our family and people.

Are there any cultural and family traditions that are important to you?

My grandfather was of the Stolen Generations and of Warlpiri heritage. He was raised by a white family in Victoria and discovered his background late in life.

In my pop’s time, being Aboriginal was not something easily embraced and it was the secret our family kept from the outside world for many years. Thankfully, later in life, my pop could explore his connection to country, express his natural storytelling talent and draw his children and grandchildren closer to culture than he himself had experienced. As a family, we can now celebrate our Aboriginality.

My dad found peace on Yorta Yorta country and settled there. He brought my brothers and me up knowing our background. He connected with local people so we had the opportunity to tap into Yorta Yorta culture; a rich culture that we are lucky to have experienced. Unfortunately, we have limited experience and exposure to our own Warlpiri culture. It is difficult connecting with your family when it has been displaced and generations with the knowledge and connections have died.

Our family tradition is telling a story, and the love and gift of art. My grandfather and father were wonderful at telling stories and were gifted artists. My granddaughter loves to hear about her daddy growing up and stories about when she was a baby. When we walk along the Goulburn River, I tell her my stories, we paint and draw. She loves drawing and creating art, which she sends to her daddy.

If you were very sick, what things would you and your family get strength from?

Each other. Our family uses humour to get through difficult and complex times.

My mother died when I was 11 and my brother and I were excluded from her hospitalisation, death and funeral. I suspect that is why palliative care as a career enticed me. I felt death and dying could be done better. I have always been conscious of how easily and quickly life can end and being a palliative care nurse, my family are very clear about death and dying.

While I am well, I do have significant unstable familial hypertension which has impacted on my cardiovascular health. I have had a small stroke (no residual effects) and am monitored and medicated, so I can continue being well. My oldest son, who is 30, also has hypertension, and I find having transparent and supportive conversations provide strength to us as well.

Through my career, I have watched others navigate through the palliative phase of life and I try to take the best of those experiences, learn from the not so good, and share these lessons with my own family.

When my grandmother was dying, my two sons, their partners and her great, great grandchildren (the youngest having just been conceived) were by her bedside. We spoke her story, we laughed and cried. I lay beside her, and when she died, we laid her out. Her great, great grandchildren drew pictures and these were laid with her. I recall the nurses saying they had never experienced such a special end-of-life time.

Are there any fears you have about the end of your life?

I wouldn’t call them fears, but rather anticipatory grief and bereavement at the prospect of not having future experiences with my family. So, I need to ensure my presence is felt now, to impact the future.

What would you like to do before you die? Are there any places you would like to visit or people you would like to see?

I worked in Swaziland in Africa for a period of time setting up a palliative care unit for the local people and I found a connection to their Kingdom and people. I’d love to go back.

If you were sick and you were not going to get better, would you want all available treatments, even if they might make you feel sicker?

No, we all die and for me, it is about quality and not quantity. I am clear about not wanting unnecessary treatment and I have been clear in communicating with my loved ones about my own personal definition of quality of life.

I have discussed my advance care plan with my children. There have been hard, complex conversations with my sons about my decisions. My sons try to negotiate with me, and my role as their mother and a palliative care nurse is to demystify death and dying with them – to make it a natural part of life.

How important is it for you to visit country before you die, or to be on country when you die?

The land on which we stand satisfies me.

To be able to visit Warlpiri country, the country of my family’s origin, and find connection and family there, would obviously please me, though I am careful to not expect too much of others, as these are my dreams.

Yorta Yorta country offers me connection and that appeases me.

I have a jar of earth that I have collected from each place I have lived. It is the earth of my footprints, memory and spirituality. The earth is to be buried with me.

How important is it for you to be buried or cremated on country?

I will be buried, to give back to the earth that has sustained me, in a place that is convenient for my family to visit, if they’d like. I have a prepaid funeral plan and ideally, I’d like to be buried in Murchison cemetery, or somewhere close by, but certainly within the Goulburn Valley hub of Yorta Yorta country.

How important is it to you that your organs are donated?

Extremely important. I would like to think that I have something more to give to someone else with need. Again, this was a conversation I had to have with my family, to document my wishes clearly and have their understanding.