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Mum celebrates her son’s life while remembering his death

Sam Hurst may have lived a few extra weeks had he opted for more chemotherapy. Instead, the 17-year-old declined treatment and made the most of his remaining months. In the lead-up to National Palliative Care Week (21-28 May) his mother, Lorna Hurst, generously shares his story, celebrating Sam’s short but vibrant life and the factors that contributed to him dying a good death.

Writing Sam’s story brings up difficult memories but at the same time it also evokes feelings of gratitude and acceptance.

In 2009 my 17-year-old son, Sam, died from bowel cancer, following 16 months under the care of the multidisciplinary team at the Total Care Unit, Princess Margaret Hospital, Perth.

Sam’s treatment involved nine months of intensive chemotherapy. This was an incredibly difficult time for Sam and our family – at a time when he should have been spreading his wings, exploring adulthood and looking to the future.

After receiving his prognosis, Sam was offered palliative chemotherapy. He declined this treatment and his decision was fully supported by our family.

To embark on further chemotherapy may have given him extra weeks of life, but it may also have resulted in a permanent stay in hospital due to the treatment’s side effects.

Instead, Sam bought a car and passed his driving test; read all his beloved Harry Potter books one more time; revisited favourite childhood haunts around Perth; attended his Year 12 graduation ball; and achieved everything and more on his wish list.

Our family also travelled to Ontario to watch a hockey match between the Toronto Maple Leafs and the New York Giants, funded by Sam’s ice hockey club and organised by the Make A Wish Foundation.

Whilst acknowledging that some patients may choose palliative chemotherapy, the ‘normal’ time Sam spent at home in his last four months gave our family the opportunity to make the memories we hold in our hearts today, and in some way it has helped us to reconcile the loss of our beautiful, spirited boy.

At that time, we tried to live each day in the moment and we supported Sam to do all the things he wanted to do.

It was exhausting but it was also a huge privilege, and it was filled with many tender moments.

Through honest conversations with clinicians about the benefits or otherwise of further treatment, discussing preferences for his ongoing care and early referral to palliative care, Sam was given the opportunity to consider what was important to him and to decide what he wanted to do in the limited time that he had left.

As a result, we all felt supported and as prepared as possible when he died peacefully at home, four months after receiving his prognosis. In all aspects of his care – physically, spiritually and emotionally – Sam died a good death.

Throughout this heartbreaking time, my thoughts constantly turned to the fact that all of these experiences, and the pain that came with them, could not have been for nothing. I needed to find some meaning in these experiences.

Following two years of adjusting and supporting family members as much as is possible (I came to realise that we all grieve in very individual ways), I actively sought out a job in palliative care.

My role as project officer in the WA Cancer and Palliative Care Network, WA Health, involves achieving system-wide change in end-of-life and specialist palliative care and supporting clinicians in their work.

I don’t have personal contact with patients and their families but I do know that every day I indirectly contribute to their experiences within the health system and, ultimately, I contribute to their care.

This article was first published in the AMA (WA) journal Medicus, August 2016.