Nearly every day we are confronted with death. We experience it personally, hear about it on the news, watch it in the movies and read about it in books and yet still, talking about death and dying with our loved ones remains a taboo subject. Conversely for 17 year old school student, Jemma Schusterbauer, personal experiences has made her eager to learn more about the end-of-life and understand the palliative care sector - an area she once found very confronting.

Studying at University Senior College in Adelaide, Jemma decided to complete a research paper on the weaknesses in Australians palliative care system and how to further improve them. The report focused on the human resourcing shortfalls, impacts of insufficient funding, legislation limitations, and public awareness knowledge. The paper also included her own recommendations for the improvements needed for the future of palliative care.

Jemma’s interest in the Australian palliative care system began at a young age as she watched her grandfather receive poor palliative care. This negative experience had a profound and emotional effect on Jemma and she knew she wanted her family to be better equipped when it came to end of life planning.

“I observed many shortfalls first hand such as a callous and indifferent diagnosis by GP’s, a late referral to access the palliative care system, overcrowding of the hospital wards as well as the inattentive and overworked staff. 

“Exacerbating the problem was my grandfather’s lack of preparedness in organizing an end of life care plan and lack of family discussion on the subject of death.  So naturally, I took up the challenge to base my research project on the palliative care system and how it can be further improved.  The resultant findings will hopefully assist my family better preparing for the future and to avoid a re-occurrence of past negative experiences,” Ms Schusterbauer said.

With an introduction to palliative care so young, Jemma was unable to grasp a true understanding of what palliative care is and what it should entail. Early last year, Jemma reached out to Palliative Care Australia CEO, Liz Callaghan, to provide a deeper understanding of palliative care. From this, Jemma decided to further explore the status of the Australian palliative care system through her school research project. From conducting her research, Jemma says one of the most interesting findings was the limited knowledge and the misrepresentation of public perceptions associated with palliative care.

“One of the most interesting things that I discovered, was the fact that the palliative health care sector was and still is considered a relatively new field in the world of medical science.

“Over the years, it (palliative care) has received minimal media exposure and this has contributed to the lack of understanding of what palliative care actually is and the services offered amongst the general populous. This lack of knowledge has given rise to the myth that palliative care is associated and/or one with euthanasia.

“This negative connotation to euthanasia has made palliative care become more of a ‘taboo’ subject within the public domain and as a consequence, there has been limited growth in this field within the medical industry,” Ms Schusterbauer said.

Jemma also admits that by talking to her friends and family about her project on palliative care, she has changed their understanding of palliative care.

“Initially, no one really understood what palliative care was. However, upon explaining it, it became a very controversial and emotional subject (very quickly!).

“Having identified some of the inadequacies of the system, I was able to underpin my research focus into a more positive direction and thus proffer some solutions. My teachers and classmates became very intrigued in my findings and further supported my justifications on where improvements could be made.

“I (now) implore people to make an effort and read about palliative care to better understand what it entails and the services offered. Raising the profile of palliative care will aid this relatively new medical field to further expand and improve in its services. Finally, it is important for families to have the hard discussion with respect to palliative care (the earlier the better) to avoid future disappointments and arguments,” Ms Schusterbauer said.

Looking into the future, Jemma would like to continue her studies in the medical industry and aims to make a difference and help communicate new medical findings to the public.

“I am aiming to head into Advanced Medical Research next year at Adelaide University. I would love to become involved in the medical field of science and be a part of a team that promotes new medical understandings and breakthroughs,” Ms Schusterbauer said.