The award, launched by Health Minister Greg Hunt in conjunction with the Australian College of Nursing, recognises Johnston’s contribution to towards improving end of life care for older Australians living in residential aged care.
She’s worked in palliative care for 20 years and recently spearheaded a research project called INSPIRED, the largest randomised controlled trial of its kind internationally. The trial focuses on integrating specialist palliative care into residential aged care facilities, providing better pain management during end of life care and supporting older Australians to die in their preferred place.
This is something Nikki has been passionate about for years, especially after witnessing first hand that many staff who took a job in aged care did not realise they would be caring for people who are dying.
“I was concerned that there was an inequity of access to specialist palliative care for those living in residential aged care and that the experiences of those dying varied greatly,” she told Women’s Agenda.
“I believe all Australians deserve access to quality care in their last months of life regardless of their age, diagnosis or where they live.”
She’s also recently been recognised with an Order of Australia Medal, a nod to her change-making capabilities and significant contribution to nursing in Australia.
Below, Nikki Johnston tells Women’s Agenda about her groundbreaking research in palliative care, what needs to change in the profession and why she has a lifelong passion for nursing.
What does it mean to you to have won the Health Minister’s award for Nursing Trailblazers?
What an enormous honour as there are so many talented nurses. The best thing about winning is that our research has a better chance of changing practice and this means that older Australians living in nursing homes can look forward to better deaths as staff know how to recognise dying and put a plan in place. They are able to talk about it and support residents and relatives to live better and die better with symptoms like pain managed. Also, dying at home instead of hospital can happen more readily.
Why did you decide to initiate research in the area of palliative care?
I was concerned that there was an inequity of access to specialist palliative care for those living in residential aged care and that the experiences of those dying varied greatly. Staff didn’t realise that they would be caring for people who were dying when they took a job in aged care. Dying wasn’t being recognised and avoidable transfers to hospital where happening as there was no plan in place. I believe all Australians deserve access to quality care in their last months of life regardless of their age, diagnosis or where they live.
Can you tell us a little about your palliative care project INSPIRED?
In 2014-2015, we developed and tested a new approach to integrating specialist palliative care into residential care to meet the objectives of the national strategy and improve the delivery of high-quality appropriate care to older Australians. The new model of care involved monthly triage meetings called ‘Palliative Care Needs Rounds’.
These hour-long meetings focus on discussing residents who are at risk of dying and who may not have an adequate plan in place. The intervention was delivered by myself, a palliative care nurse practitioner. The model is provided on the basis of risk stratification and specialist need.
The pilot confirmed significantly reduced length of hospital stay and reduced hospital deaths with significant costs savings to the community. The approach improved RACF staff confidence in discussing death and dying with families and planning for symptoms and goals of care at end of life. It supports palliative care in residential aged care facilities (RACFs) and normalises death and dying, while providing essential anticipatory prescribing and better decision-making leading to planned care for residents.
Due to the success of the pilot we embarked on a randomised controlled trial integrating specialist palliative care into residential aged care called the INSPIRED trial. This is the largest trial of its kind internationally and we are in the process of publishing our results that mirror those of the pilot.
We’d love to hear about the early stages of your career. Did you always know you wanted to pursue nursing and what enticed you initially?
I wanted to be a nurse for as long as I remember, my mother started nursing at Mona Vale Hospital in Sydney and nursing was thought of highly in our family. I was one of the first to do nursing at university and studied at the University of Technology Sydney in the late 80’s. I was so proud when I got my first job at Royal North Shore Hospital. In the interview I was asked “What does your father do for work?”
I then went overseas for a year and worked in England as a nurse and returned to work for the Sisters of Charity at St Vincent’s Hospital Darlinghurst. I was again very proud to work in such a fantastic hospital where care and compassion was valued so highly. At this time I had the honour of caring for people who had HIV/AIDS and haematological conditions like leukaemia. This was sad and confronting as most of the patients were young and I noticed that we could learn more about how to recognise dying and honour it instead of people dying unprepared.
I then moved to Canberra and started studying palliative care and I have been doing that ever since – 20 years now. I am still learning. It’s a privilege to do this work. I am currently employed by Calvary Public Hospital Bruce, Clare Holland House Campus and I am so grateful for the support my employer has given to me and the research team. I came up with the idea and they said “Yes you can.” ACT Health also needs thanking as they funded the INSPIRED trial.
You were recognised in the 2019 Australia Day Honours as a recipient of a Medal of the Order of Australia for your contribution to nursing. Congratulations! How does it feel to have your hard work acknowledged?
It has all been a bit overwhelming. Firstly, I wouldn’t have got here without the strengths of our whole research team especially Professor Liz Forbat who was the research lead and I have been so fortunate to have had teachers and mentors throughout my career including the people I have cared for. My family too needs to be thanked – my kids often say “you have to be dying to get attention around here!”
Secondly nursing has given me so much opportunity to be innovative and to change the system to fit the people we are caring for instead of people having to fit into a system that doesn’t meet their needs.
Women are over-represented in the nursing profession, yet still underrepresented in higher level nursing roles, particularly in leadership and research. What factors do you think contribute to this reality and what needs to be done for women in this space?
I think it is because nursing is seen as a caring profession and that caring professions have been historically done by women. Unfortunately even though nursing is the largest portion of the health care system we don’t always have the biggest voice. There is definitely an opportunity to improve the way we value nursing and, in turn, women. Many Nurse Practitioners, for example, cannot yet work to their full scope of practice as there are regulations and laws that still need to be changed. Most of the workforce in residential aged care are untrained, unregulated assistants in nursing who are underplayed and undervalued for the work they do. The majority of these workers are women. If we valued our elderly more, in turn we would value the people caring for them.