In Conversation provides a glimpse into the life of an ‘outlier’ – an exceptional person going above and beyond to improve outcomes in their field. We speak with Palliative Care Nurse Practitioner Nikki Johnston OAM MACN. As inaugural winner of the Health Minister’s Award for Nursing Trailblazers, Johnston was recognised for her work on the INSPIRED project, which integrates specialist palliative care into residential aged-care facilities.
What is the INSPIRED project?
The INSPIRED research project is the largest randomised control trial of its kind internationally. The trial focuses on integrating specialist palliative care into residential aged-care facilities (RACFs), providing better pain management and supporting older Australians to die in their preferred place.
What was the catalyst for the project?
I have worked in palliative care for more than 20 years and found that people’s experiences with death and dying were often not very positive; people were dying badly. They weren’t being asked what they wanted and there were no plans as to how or where they wanted to die — no one was talking about it, whether they were afraid to approach the topic of death or due to their cultural beliefs. I noticed specialist palliative care was not being offered to our older Australians in RACFs.
I was concerned about the inequity of access to palliative care for those living in residential aged care and that the experiences of those dying varied greatly. Residential aged-care staff are very busy. Staff weren’t recognising that they were caring for people who were dying and residents were being unnecessarily transported to hospital. We want people to have quality of life and a good-quality death, and to have better connections with their families and to spiritual care as they go through the dying process.
How did the INSPIRED project come about?
In 2015, I recognised an urgent need to increase access of specialist palliative care in residential aged care as older people were dying badly; dying wasn’t recognised and therefore not planned for. Avoidable transfers to hospital were happening at a high rate. We developed and tested a new model of care integrating specialist palliative care into residential aged care. We ran a pilot program and tested our intervention ‘Palliative Care Needs Rounds’. We did this across four RACF sites in Canberra.
Due to the success of the pilot, we ran a randomised control trial (INSPIRED) that included 1700 residents across 12 RACFs in Canberra. The implementation and data collection took 18 months.
How does INSPIRED work in practice?
Palliative Care Needs Rounds are monthly meetings with staff, facilitated by a palliative care nurse practitioner, and occur in RACFs. These hour-long meetings focus on discussing residents who are at risk of dying and who may not have an adequate plan in place.
Many of the staff working in RACFs are not equipped or prepared with the knowledge that the people they are caring for are dying. We take it upon ourselves to mentor and share our insights with those working at the RACFs and teach them how to recognise the signs of death and dying and identify those who are at risk of dying. By supporting and educating staff, we are able to normalise death and dying in residential aged care.
How are residents and families benefiting from INSPIRED?
In the pilot, we evaluated the Palliative Care Needs Rounds model and found that residents and their families felt more confident, comforted and relaxed once they had discussed the residents’ end-of-life wishes. To me this highlighted the importance of having conversations that allowed for end-of-life plans to be discussed and provided opportunities for residents and their loved ones to ask the questions they wanted to ask.
One of the biggest results from the project (a full review of the results will be published later this year) that we noticed included a reduction in the number of complaints being made about the care in the facilities. By default, we can conclude that since the residents and families were better consulted and the decision-making was shared, it allowed for care to be provided more holistically.
Palliative Care Needs Rounds also improved residential aged-care staff confidence in discussing death and dying with families and planning for symptoms and goals of care at end of life. The pilot reduced length of stay in hospital by 67% and reduced hospital deaths, with significant cost savings to the community.
The trial mirrors the pilot results and is due to be published shortly. Palliative Care Needs Rounds has normalised death and dying in RACFs and ensured better pain management and support for older Australians to die in their preferred place.
With your background in nursing, what are you passionate about?
My drive in nursing is to help vulnerable people and advocate for equality and equal access to appropriate care, including end-of-life care. I am particularly passionate about advocating for those who aren’t able to speak for themselves and believe all Australians deserve access to quality care in their last months of life, regardless of their age, their diagnosis or where they live.
I am passionate about helping people to die well. People remember when their loved ones experience a bad death. If the process of dying was planned and normalised by those involved, the experience is far more positive and makes everybody feel better.
What does this award mean for you and INSPIRED?
Being announced as the winner of the inaugural Health Minister’s Award for Nursing Trailblazers is the highlight of my career — it is an enormous honour and I am very grateful as there are so many talented nurses.
For the INSPIRED project, I hope that this award will encourage further recognition of the work that the team has done and the results that this program has achieved to support residents, families and communities.
The best thing about winning this award is that our research will have a better chance to change practice, which will mean that those who are living in RACFs will have the chance of a better death, as staff will recognise when they are dying and put a plan into place. Staff are able to talk about death and dying and support residents and their relatives and loved ones to live better and die better in their preferred place of death.
We hope with this recognition that the model of care will be rolled out nationally. We want to see further engagement with telehealth to adapt to, and connect with, rural and remote areas. We have partnered with Palliative Care Australia to further develop and collaborate on these ideas.
Learn more about new nursing models and other compelling case studies at the Australian College of Nursing’s (ACN) National Nursing Forum (NNF), 21–23 August 2019, in Hobart, Tasmania.
The NNF is the ACN’s signature annual leadership and educational event bringing together nurses, students and other health professionals from around the country and across the globe. The theme for the NNF is Nursing Now – Power of Policy, which will be explored in the keynote plenary sessions and throughout the program.
For more information, visit: www.acn.edu.au/events/national-nursing-forum-2019.
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