A 30-year career in palliative care has taught Karen Conte many things about life. Having worked as a registered nurse in oncology, a clinical nurse educator and a nurse practitioner specialising in palliative care, she has supported hundreds of people as they were dying, both in hospital and community settings. Karen holds a Master of Palliative Care from Flinders University. She is the project manager of Decision Assist, an Australian Government funded project that seeks to enhance the provision of palliative care and advance care planning services to older Australians.

What impact has working in palliative care had on your outlook on life?

The main thing is that I don’t sweat the small stuff. It has given my life incredible perspective so I don’t usually worry about things or let them get me down because I am healthy and my family is healthy. To me, they are the main things.

I really think we are here to have a good time and enjoy ourselves. If I’m not enjoying what I’m doing I don’t keep doing it. It’s not worth it. I have been with hundreds of people when they are dying and no-one says on their deathbed ‘I wish I’d spent more time in the office’. If people have regrets, they’re about relationships with family or friends, not about career or money. Relationships with people – that’s what life is all about.

What emotional impact has palliative care work had on you?

I’ve developed the ability to switch off from work when I’m at home. As soon as I walk in the door, I’m a mum and a wife and a sister and a pet owner again.

But there have been times at home where I’d need to go for a walk and have a cry. Usually after that I was okay. But some patients have impacted strongly on me and I remember them very clearly. It depended a bit on where I was in my life. When I had a young child and I was looking after a child of a similar age who was dying, that impacted me enormously. And when I was looking after a 19-year-old man and I had a boy of a similar age at home… I could still cry now thinking about him. He sat up in bed and said to his mum ‘This isn’t fair – I don’t want to die’. That will stay with me for me forever.

There are particular patients who absolutely get under your skin. Some you’d get to know so well that you’d think if you’d met them at a barbeque, you would have become friends. To think they were going to die in a few months’ time was bizarre in some ways. Because you met people at a very intense time in their lives, you got to know them very quickly and have incredibly intense philosophical discussions about life and death and what it all means.

I remember one man sitting on his back decking on a beautiful sunny day, looking up at a tree and listening to the birds. He said he couldn’t imagine not being able to see the tree and hear the birds anymore. Grappling with the idea of not being here anymore is an amazing concept for human beings to get their heads around. Those conversations are mind blowing.

What made you choose oncology so early in your career?

I loved the ongoing relationship that you could have with people in oncology. They weren’t coming in for surgery and then heading out again. People would come into the wards often for their chemotherapy and you got to know them very well. By the time they were dying, you had a really strong relationship with them and their families.

Even though we couldn’t change that these people were going to die, we could have an impact on the way they died, to make it as dignified and peaceful as possible. That has a huge impact on the family left behind, who would remember it for many years.

For a long time I worked in the area where I lived, so I’d often be giving bereavement support over the veggie isle in the supermarket. That was good and bad – a bit like working in a country town.

How do you feel about death?

Very few people I’ve come across are afraid of death itself. Like them, I’m not afraid to die. But I am afraid of how I might die.

A lot of that fear is about losing control. It’s a fear of being a burden on family, requiring really intimate care, or dying a horrible death or being in pain.

Do you think there is such a thing as a good death and if so, what does it look like?

Yes. I think there is such a thing as a good death. I think it’s about the person who is dying having choices about where they are cared for, where they die and how they die. It’s a good death if somebody dies pain free and peacefully, with dignity, in the place of their choice with the people of their choosing.

What are the key things in your advance care plan?

If something acute happened to me, I would definitely want treatment in this point of my life. But in the future, if I had dementia and did not recognise my family, then that is when I wouldn’t want any life-prolonging treatment. I just don’t see the point.

It goes back to my belief that life is about relationships. If you don’t have them anymore, there’s not much point to it. I don’t believe in life just for the sake of existing – eating and drinking and that’s it.

I know from my work that not everybody feels that way. Some people value life for life’s sake, regardless of the quality of that life. That is okay too. But that’s not how it is for me.

How do people tend to react when you tell them you work in palliative care?

People often think it is really sad and depressing and ask how I do it. I usually tell them it is far from that. There are sad moments but there’s also a lot of fun and black humour. It’s not all doom and gloom.

You learn so much from the patients and families you are working with. They teach you every day what is important.

What do you think is the most common misunderstanding people have about palliative care?

Definitely that palliative care is for the last days or last week of life. It is understandable that people think that, because often the community palliative care service doesn’t come in until the person only has a few months to live. But the service can also dip in and out of care when it’s needed much earlier on for symptom management and support. Palliative care has a role much earlier in a person’s disease trajectory than just at the very end.