As National Palliative Care Week shines a light on the vital role of palliative care, Mark Harris shares his personal journey of love, loss and advocacy from his own lived experience.
What is palliative care?
Palliative care is a holistic approach to supporting individuals with life-limiting illnesses – meaning an illness that’s active, progressive, or advanced, with little or no prospect of cure.
With the support of healthcare professionals – including doctors, nurses, and allied health professionals, Palliative Care aims to alleviate symptoms, enhance quality of life, and provide emotional, social, and spiritual support to both patients and their families.
Palliative care can begin at diagnosis, offering support throughout the illness journey, and can even potentially prolong life. It’s about empowering people to live their lives as fully and comfortably as possible, even in the face of terminal illness.
National Palliative Care Week, 19-25 May, aims to raise awareness about palliative care and its benefits, and advocates to ensure quality palliative care is available for all, when and where needed. A host of local events are being held around South Australia, allowing the community to connect with the people at the heart of quality palliative care: doctors, nurses, allied health practitioners, volunteers, and many others.
A family’s journey through cancer
Mark Harris’s life was turned upside down when his wife, Karen, was diagnosed with cancer at the age of 33. Their 12 years with the disease was a rollercoaster of surgeries, chemotherapy, radiation, moments of remission, and even the joyful arrival of their second child.
However, the cancer’s relentless return meant chemotherapy treatment eventually became unviable. Karen was placed in palliative care at the age of 45.
Breaking the news of Karen’s terminal illness to their two children, Lindsay and Ollie, was a heart-wrenching experience. “I still remember Karen telling our daughter that she was probably going to die,” Mark says. “The trauma of that experience and seeing the look on my daughter’s face, I still remember that.”
A mum’s spirit lives on
The following three months were filled with emotional turmoil and the gradual decline of Karen’s health. Despite the challenges, Karen’s spirit shone through. “She wasn’t bitter, she wasn’t angry,” Mark remembers. “She was very spiritually aware and brave.”
Inspired by his wife of 15 years (and partner of 11 before that), Mark would ask himself during those difficult last days: “What would ‘love’ do today? What would ‘care’ do today?” This simple reframing helped him prioritise and find meaning in the smallest of gestures, such as holding Karen’s hand or bringing her ice chips.
Mark credits his wife’s outlook on life, strength and humour for helping their family navigate the darkest of times. One year on from Karen’s passing, he says, “Lindsay and Ollie are happy kids now.”
On Mother’s Day this year, Mark, Lindsay and Ollie all wrote a letter to Karen: “It’s important to us that, even if mum’s not here, we can still celebrate and remember her. I see the kids laugh every day. They have fun. And I feel like it’s the positive nature and determination of Karen that helped us be okay now.”
Three pillars of palliative care
Mark says that for his family, three aspects of palliative care were crucial: access to expert medical care to manage pain and symptoms, emotional support, and open communication about Karen’s end-of-life wish to stay at home as long as possible.
“We had a doctor, two nurses, and a social worker who came out to our house and talked about end-of-life care,” Mark says. “That was incredibly difficult, but it was helpful,” he says. “They were able to provide the set-up for the pain relief that she needed, which meant that she could stay at home, she could sleep at home, she could be with the kids for longer.”
For Mark, the emotional support was the big one. “While you’re doing all the things for a wife and kids as a carer, it makes a big impact on yourself,” he says. “The emotional support that you can receive through doctors, nurses, and social workers who go over and above, that’s really significant and it was incredibly helpful for me personally.”
Turning loss into advocacy
One year on, Mark volunteers his time and insights as a consumer representative at the South Australian Palliative Care Statewide Clinical Network, a collective of health professionals, organisations, consumers and carers working to enhance the quality, availability and experience of palliative care in South Australia.
Mark’s personal journey has given him a unique, valuable perspective.
“It’s a very overwhelming experience when any member of your family is in palliative care. I felt like I know that space really well and thought that if I can provide my experience and help other people, then hopefully, you’re getting a better outcome for the patients and the family members in the future,” he says.
In addition to his advocacy work, Mark has founded a wellbeing coaching business, sharing the life lessons he learned with Karen during their journey with others facing health challenges. He encourages carers to prioritise self-care and focus on small acts of love and support, an insight he learned firsthand during Karen’s final months.
Conversations and community support
Mark believes raising awareness about palliative care through initiatives like Palliative Care Week is vital.
He would like to see more open conversations about dying and palliative care among the wider community. “It’s not an easy discussion to have, but it’s crucial for preparing communities to support patients and families in their time of need,” he says.
As for advice for supporting friends and their families through palliative care, Mark says it’s best to “just let the family know you’re thinking of them and you’re there if they need to reach out for help – that can really mean a lot”.
Palliative Care Connect: a lifeline for support
Palliative Care Connect provides information and links to palliative care and bereavement supports in South Australia to those who are dying and their loved ones.
To learn more, visit www.palliativecareconnect.com.au or call the dedicated Palliative Care Connect Statewide Navigation Service: 1 800 725 548 (PALLI8), available Monday-Friday from 8.30am to 4pm.
