Q&A with Nikki Johnston OAM

8th July 2019

Palliative Care Nurse Practitioner

Palliative Care Nurse Practitioner, Nikki Johnston, is at the forefront of nationally and internationally acclaimed ground-breaking research to improve end of life care for older Australians living in residential aged care.

Ms Johnston is a lead member of a multidisciplinary research team that recently completed the largest randomised trial of its kind anywhere in the world of a new palliative care model, the ‘Palliative Care Needs Rounds’ model, which integrates specialist palliative care into residential aged care facilities.

The ‘Palliative Care Needs Rounds’ model aims to help people to live better and die well in their preferred place of death. It comprises three core elements:

• Palliative Care Needs Rounds which support educating residential aged care staff to recognise and plan for dying and increase their capacity to care for people in their last months of life.
• Multidisciplinary case conferences (initially facilitated by specialist palliative care) with general practitioners, residents, families, aged care staff, where goals of care are discussed, advance care plans completed and which help to increase the capacity of community to normalise dying.
• Specialist palliative care clinical work for residents and families that have complex needs.

The trial, funded by the ACT Government and supported by Calvary Health Care, ran for 18 months in 12 Canberra residential aged care services with 1,700 residents. Nikki Johnston sat down with Health Matters at Calvary’s Clare Holland House to discuss the ground-breaking research and its potential benefits.

What was the catalyst behind Calvary Health Care’s ground-breaking palliative care research?

In 2014, Dr Michael Chapman, Jane Etchells and I identified a need to be proactive instead of reactive as residents in aged care facilities where not constantly dying well. Residents were being transferred to hospital avoidably as dying wasn’t recognised and therefore no plans were in place.

We wanted to improve the experience of dying for residents, their families and the staff that cared for them. At the time the experience for aged care residents differed enormously. There were no standards in place—staff trained in aged care generally weren’t taught about death and dying and didn’t really understand that they would be caring for residents in there last months of life.

We wanted to better the experience of dying for those living in residential aged care. We came up with the ‘Palliative Care Needs Rounds’ model, a proactive model to integrate specialist palliative care into residential aged care. 

We piloted this model in four facilities in Canberra. We increased the capacity of the staff to do this work, we reduced the length of stay in hospital by 67% and we improved dying in a preferred place to 100%. Due to the success of the pilot we formed a research team that went on to define what ‘Palliative Care Needs Rounds’ were. The research team, led by Professor Liz Forbat, then developed a protocol and tested the ‘Palliative Care Needs Rounds’ model via a randomised control trial called the INSPIRED trial.

What are the key elements of the ‘Palliative Care Needs rounds’ model?

Our model has three elements. The first component is the palliative care needs rounds themselves. Palliative Care needs rounds are monthly meetings to discuss residents at risk of dying who may not have an appropriate plan in place. These educational meeting discuss up to 10 residents at a time and there is cross fertilisation of knowledge from each case that is discussed.

Staff are educated and mentored and learn how to manage symptoms like pain and breathlessness, understand about the law and end of life decision making and how to communicate with residents and relatives about death and dying. And by staff I mean all staff. Really whoever is interested in making death and dying better—registered nurses, carers, pastoral carers, activity officers. Everyone has the potential to help someone to die better.

In particular we needed them to recognise dying. If we don’t recognise dying as a normal part of life we won’t plan for it, and if we don’t plan for it we get bad outcomes.

The next thing we wanted to do was to increase the capacity of the community to normalise dying. We value ‘cure’ in our society. We think that if we are sick we go to hospital and get cured. Many older people can’t be cured and need help to manage chronic illness and help to die well in a safe environment that provides care and acknowledges dying as a normal part of life. Transferring people to hospital can be harmful, particularly for those who are older with cognitive difficulties and there are often more burdens than benefits of hospitalisation for this group of our community.

We needed to educate people to better understand the reality of death and dying to increase the chance of people dying in their preferred place. Under our model staff are mentored to have end of life discussions with families and lead multidisciplinary case conferences were goals of care are discussed and advance care plans completed. Collaboration with General practice is vital at this point.

Our multidisciplinary case conferences are attended by the residents (if able), family members, their GP and staff. We talk about the resident’s health status, their goals and what is important to them in their life now. From this we end up with a plan where everyone is on the same page—where it is clear what the resident wants and what they don’t want. If families are part of planning they are much happier.

he last element was to increase access to the specialist palliative care team to support residents and staff when their needs are complex. For example when collaboration is needed with general practice to treat complex pain at end of life.

What benefits does the approach offer aged care residents, their families and residential care staff?

For residents what this means is better dying—dying well in a place they’ve chosen in the way they’ve chosen. Families benefit so much. The way people die remains with those left behind; if people die badly it has a long lasting effect on communities.

And for staff, they come alive. They feel good because they can recognise what is happening. They know when someone is in pain, they have a plan in place and can provide treatment. They are no longer scared and don’t have to send residents to hospital.

What does the future hold for the Calvary Health Care project?

The ‘Needs Round’ model is now up and running in 16 out of Canberra’s 28 residential aged care facilities. Our aim is to have it in all 28. We are also waiting for the results of our randomised trial to be published. Then what we would really like is to see it rolled out across Australia.

Everyone, all older Australians, deserve the right to quality end of life care regardless of where they live and what it is that is ending their life. Some places don’t have residential aged care facilities, so we could adapt this model to work in a little rural hospital or use it in telemedicine.

It is a simple idea in which the returns to government outweigh the costs of running it.

What do you see as the biggest challenges in the field of palliative care and what can we do about them?

We need to create more awareness and understanding around palliative care—both the benefits is has for patients and also its capacity to relieve pressure on the acute care services. Recognising that would allow us to look at new funding arrangements, notably to expand services so more people can access good palliative care.

We need to better value residential aged care staff, and ideally have more skilled nurses in these facilities to support the staff. It is promising to see that conversations around these issues are happening more widely and honestly.

We need to normalise death and dying. I often hear it said that people don’t want to talk about death and dying. That is not my experience. Older people are desperate to talk about it … residents tell me all the time that they are dying and no one will talk to them about it.

We need to create a workforce to deliver specialist palliative care; we need to fund the training; and we need to roll the ‘Needs Care’ model out across Australia.

Your contributions to nursing and palliative care have been recognised with a Medal of the Order of Australia, the inaugural Health Minister’s Nursing Trailblazer Award and the 2019 HESTA Team Excellence award. What is the value in this kind of recognition?

The biggest benefit is to help the cause for getting better care. Since receiving these awards I’ve had so many people contact me, people talking to me, asking what can we do. Getting the message out there, getting death on the front page of the Canberra Times, changing perceptions is really helpful.

This is not about winning awards, it is about getting the message out about how to have a good death. We have an idea, we have tested it and it works. I am driven to see this helping as many older Australians as possible.

How does the work of a nurse practitioner differ from that of other registered nurses?

Within the nursing field there are enrolled nurses, registered nurses and then nurse practitioners. To be a nurse practitioner you have to complete a Master of Nurse Practitioner, in a particular field of speciality. I completed my Master of Nurse Practitioner, specialising in Palliative Care, in 2008 and got my first job as a nurse practitioner in 2010.

We are advance practice nurses working to a scope of practice. Within our scope of practice we can diagnose, order tests, prescribe medicines and develop treatment plans. One of the greatest advantaged of having nurse practitioners in palliative care is improving timely, safe, effective access to medications at end of life.

What advice do you have for other health professionals considering working in palliative care?

Do it! It’s the best job ever. People often ask me how I keep doing this. I’ve cared for thousands of people who are now dead. This time of people’s lives is raw. It is intimate. It is such a leveller.

If we do this well it is a privilege and satisfying. If we did this badly there is no way I could keep doing this.

What is great about palliative care nursing is you are an advocate for people who don’t often have a voice. Lots of people don’t ‘fit’ the health system. Let’s make the system fit them.

This article first appeared in Health Matters Issue 90 | Winter 2019