Palliative Stories – the EAPC’s blog series from the perspective of patients and family carers
Today, Jennifer Fox shares her story. Jennifer recently completed a PhD exploring the transition to palliative care at Institute of Health and Biomedical Innovation and School of Nursing, Queensland University of Technology, Brisbane, Australia.
“We must turn this negative into a positive.” My husband of 26 years said these simple, optimistic words on the day he was diagnosed with melanoma and was informed he might only have months to live. These words were an unexpected source of strength and guidance for me during his illness and continue to inspire me now, almost 10 years on from his death.
In 2004 my husband was diagnosed with melanoma. Five months after diagnosis the surgeon delivered the news, “go home and get your affairs in order, it is only a matter of months.” In the coming months my husband’s condition deteriorated. We had to make decisions about where he would spend the final weeks and days of his life. As a family we chose to care for him at home. This was made possible with the support of local community hospice and palliative care nurses. The compassion and understanding of these nurses in the provision of care was the inspiration that enabled me to ‘step outside my comfort zone’ at a time when my life was at a turning point…
Following my husband’s death in 2005, I was devastated, wondering if there was any purpose to my life. I was an accountant with a 25-year background in small business taxation, however, that position then seemed meaningless. Upon reflection I was struck by the privilege inherent in the role of palliative and hospice nurses in the provision of care to those nearing the end of life. I made the decision to study nursing.
My nursing career has allowed me to follow my passion and give voice to those impacted by the need for palliative care. In hindsight, my husband could have been considered for palliative care when he was advised, “go home and get your affairs in order.” However, palliative care was not mentioned and if it had been, I would have ‘run a mile’. At that time my husband had no symptoms from what the surgeon considered a terminal diagnosis. In my view he was not dying; he did not need palliative care.
Why was this my reaction and how would I react now, 10 years later, if given the same situation? This is an interesting and complex question and one that was the basis of a PhD I recently completed exploring the transition to palliative care. My PhD research identified a complex interaction between acute care services and palliative care. 1 It highlighted many social, structural and cultural factors that impinge upon the patient and family journey in the transition to palliative care.
There are no easy answers; however, my research provides knowledge and insight into the complexities of the transition process, and for me both the personal and professional journeys continue. I have heeded my husband’s advice. I have turned a negative into a positive by finding a more satisfying and rewarding direction in my life journey.
1. Fox, J.A. (2015). ‘The transition to palliative care: A critical exploration in the context of metastatic melanoma’, PhD thesis, Queensland University of Technology, Brisbane, Australia.
Read more ‘Palliative Stories’ on the EAPC Blog
If you missed the previous posts in this series, please click here. A new story will be published each month.
If you have a patient, or a family member or friend, who would like to contribute to the series please contact the editor.
A message from the EAPC
We would like to thank everyone who has kindly contributed to this series of ‘Palliative Stories’. In publishing patients’ and families’ stories we are aware that content may sometimes focus only on one side of the story but we hope that the stories will help us all to better understand people’s palliative and end of life care experiences. Unfortunately, we are not able to give advice or comment on individual cases but we share in the distress that our contributors have experienced.