Lucinda Barry is Dying to Talk during DonateLife Week
With around 1,400 Australians currently on the wait list for a life-saving transplant, and a further 11,000 people on dialysis, the generous act of organ donation has a far reaching effect, changing the lives of both transplant recipients and their families.
For many people in palliative care, tissue and organ donation (e.g. corneal donation) is still a possibility and should be discussed as part of end-of-life conversations. Chief Executive Officer of Organ and Tissue Authority, Lucinda Barry, took some time this week to speak with Palliative Matters to discuss some of her end-of-life wishes using the Dying to Talk Discussion Starter.
If you had a condition that you could not recover from, what would be important to you, towards the end of your life?
Most important to me would be able to spend quality time with my family and friends and making sure they knew how special they were to me and how much I loved them. I would also make sure I had everything arranged to make sure my family had very little to do, including my will, medical power of attorney, advanced care directive and my funeral arrangements.
Are there any pets that you would like to see or be with you, if this is possible?
We have a gorgeous border collie, Charlie, who is a part of our family. It would be really important that he was able to be there, especially with my husband and children at the time.
Would you prefer a quiet environment or do you prefer activity and chatter around you?
Being a mum, I think activity and chatter, with a few quiet times with my husband, extended family and close friends.
Would you like music to be playing and if so, what style or what music?
I love a wide range of music and at this time I’d like the special songs throughout my life that make me smile. No morbid songs, but those attached to special happy memories of events and people. Abba’s Dancing Queen – I knew every word growing up and now my little girls sing it with me too! Murder on the Dance Floor – my song with my husband. And of course some Neil Diamond, my mum’s favourite so I grew up hearing him, and now my family is too. Our favourite family song at the moment is Betty Who’s “I love you always forever”.
If possible would it be important to you to have time outside?
I believe sunshine makes everything feel just a little bit better.
Would you prefer to be surrounded by lots of family and friends, or would you prefer one or two closest people to be with you? Is there anyone particular you would like to see or talk to?
My husband and girls (so long as my death is peaceful and not upsetting them too much) with the rest of my family as we are all very close and a couple of my besties! I definitely do not want to die alone, but at the time it may come down to just being one or two people, depending on how people are coping.
When my mum passed away in hospice, all of our family were there in the days leading up to it. We laughed, we cried, we talked, we made sure nothing was left unsaid and we had quiet time. What was lovely was the way my little girl continued with life as usual around us – giggling, playing on the floor in her room, sitting on mum’s bed eating chips, and of course a few little tantrums in the background! She kept things real.
But in the end it was just my brothers, my sister-in-law and myself with mum. It was peaceful and very special – I was sleeping on the bed with my mum holding her hand.
Are there any cultural or religious practices you would like to observe?
I believe in God and I believe in Heaven. This has given me a lot of comfort when someone close dies.
Is there anything else you can think of that you would like?
My funeral to be about celebrating my life. No sad songs! Just music and stories that will make people smile and laugh. And of course to be an organ and tissue donor if it’s possible – I won’t need them but I know there are many people who will. What an amazing parting gift to be able to give someone else life.
What is on your bucket list of things you would like to do or achieve before you die?
I have lived life to the fullest so I have had many adventures and ticked most of my bucket list. My first career was as an emergency/major trauma nurse so I found out a long time ago that life can be short. I try not to take anything for granted and prioritise what is important to me at the time. And importantly, I always tell those special people in my life that I love them. I don’t want to live with regrets.
For me the one thing left to do is to see my gorgeous daughters grow up being happy and ready to take on their own life adventures.
How did you feel during the process of completing this form? Was there anything about the process that interested or surprised you?
Talking about dying and end of life wishes is something I am comfortable with, both as a nurse and unfortunately as a daughter. Over the past 6 years we have lost both my mum and dad to cancer. Both spoke openly about their wishes, had their affairs organised and importantly we had the time to make sure nothing was left unsaid.
- Frail elderly put new pressure on prisons to provide palliative care
- One third of elderly patients receive futile treatment before they die
- Symbolic works created with ink-filled syringe capture life and offer therapy
- The most intimate thing I’ve done in my life: Kylie’s story
- Vicarious trauma: a young nurse shares her experience