Nikki Johnston is a palliative care nurse practitioner at Clare Holland House in Canberra.

Can you tell us a bit about what you do?

I work in specialist palliative care in a consultancy service that supports residential aged care. General practitioners are the main clinicians delivering primary palliative care, but I provide them with specialist palliative care advice and support under a shared-care model.

I’ve worked in cancer for the majority of my 18-year palliative care career, but last year I started working in residential aged care. I’m absolutely loving it.

Offering in-reach specialist palliative care services is a relatively new concept in Australia, so it is exciting to be part of it. My colleague and I work across 26 facilities and we know that we’re increasing access to palliative care services where they’re really needed. I’m really proud to be working for a service that provides these important in-reach services.

What key equity issues do you think need to be addressed in palliative care?

We have the World Health Organization definition of palliative care that says everybody should have access to specialist palliative care if they need it, and it doesn’t matter what diagnosis they have.

The idea is that it should be given on a needs basis. But when we talk about dementia, one of the biggest causes of death in Australia, people have high palliative care needs over a long time. They are a very vulnerable group who have trouble letting us know what their needs are. Their level of function is very low for years and their needs may be high over that time.

I worry that some people are missing out on specialist palliative care. The dementia population is one of these groups. That is partly because dementia tends not to be recognised as a terminal illness. Also, we need to do a lot more work to build a broad understanding of what specialist palliative care has to offer.

Who decides who gets what care and when? How can people ask for services if they don’t understand the benefits? When people can’t make decisions for themselves, carers and the community require a certain level of knowledge in order to advocate on their behalf.

Why do you think people with dementia don’t have the same access?

Because people with cancer have a high burden of symptoms, like pain and nausea, they are more easily identified as needing palliative care. But people with dementia have a symptom burden that is equally high. It is just not recognised. This population often can’t tell us how they are feeling and their pain is often under-assessed and under-reported. I believe you need specific skills to assess someone who is cognitively impaired.

What are the implications for people with dementia not receiving adequate access to palliative care?

An enormous level of suffering, not only among age care residents but also their loved ones. It also causes enormous stress for staff, who work very hard. I’ve seen instances where a staff member has been hit by a person with dementia. It is not unusual for residents to lash out if they are in pain and unable to express that.

What practical things could improve outcomes?

About half of residential aged care facilities have dementia-specific units, which is great, but we need more. We also need more Commonwealth funding to ensure staff are paid more appropriately. Staff turnover is high. We need more incentive for people who are great at their job to stay working where they are needed.

Building a broader understanding of dementia being a life limiting illness is also important. We need to talk about that, because these residents are often getting sent to hospital for procedures and treatments that really aren’t going to improve their life.

There are times when hospital is the only choice, and that is where the relief of pain of suffering can be best achieved, say for a displaced fracture that requires an operation. But sending residents with dementia to hospital can actually make things worse. It can cause harm.

They tend to get delirium when they are taken out of their normal environment, and have challenging behaviours when they are moved to hospital. That can lead to them being given medications so they don’t get out of bed, which increases their falls risk. If they break a bone, then they’re on another treadmill of delirium and pain.

If it was better recognised that they had a life limiting illness, better decisions could be made about when they should be sent to hospital, or when they are better kept in their familiar surroundings.

Why isn’t advance care planning solving this?

I think it would help if people discussed specific scenarios when they’re doing advance care planning, particularly when they’re talking with relatives of people with dementia. We know that someone with end-stage dementia will lose the ability to swallow and that prior to this the chance of them getting aspiration pneumonia is very high. So we need to ask, what are we going to do if your loved one gets pneumonia and a fever? Do we send them to hospital, give them antibiotics, or keep them comfortable and relieve their symptoms? We need to talk about the burdens and benefits of treatment and what living well means.

Too much advance care planning only talks about resuscitation. When we do discuss it, we need to say ‘If your heart stops, do you want us to try to start it artificially?’ and explain that the chances of that succeeding are around 5%.

I start the conversation with ‘What are your goals? What does living well mean for you? What are you hoping for? What scares you the most? What are you worried about? How could we improve your quality of life now?

The responses vary widely and that is to be respected. I’ve had a mother of three say ‘I want to live as long as I can and I don’t care how much pain I am in’.

Others at the end of life, who know their health isn’t going to get any better, usually have different goals. They tend to want to die with their family near them, in a place they know, as comfortably as they can.