Charlotte Coulson worked in central London before moving to the remote Kimberley region of WA five years ago. Charlotte presented at the Palliative Care Nurses Australia conference in Canberra recently. Afterwards, she told Palliative Matters some of what she has learned, working with people from remote Aboriginal communities who have end-stage kidney disease.

Have you had any stand-out experiences, working in the Kimberley?

There is a lady here in Broome who comes from a remote community. I’m allowed to tell her story, because she’s given me permission.

The Royal Flying Doctors Service had flown her to Perth because of her serious health problems. I met her about two years ago, when she was returned here to Broome for end-of-life care.

I asked her whether she wanted to withdraw from dialysis and return to country. She said “No, I don’t want end-of-life care, thanks. I want to try and get better”. So I went back to her doctors and said she didn’t want to stop her dialysis.

She was very unwell, but recovered enough to have several operations. She had an arm amputated and both legs amputated above the knee. She is glad to still have three fingers on her hand because she is a painter.

Last year she told me she wanted an electric wheelchair. Because she lives in a nursing home it was difficult to get funding, but local services pulled together and we managed it.

The day she got that wheelchair there was not a dry eye in the house. It was just wonderful to see her get her independence back and take herself off to the football or art class.

This lady isn’t elderly; she’s only in her late 50s. Her symptoms are well managed. She continues to paint and she is translating hymns into her language.

That is my absolute favourite story, because it highlights that palliative care isn’t just about end-of-life care. It’s engaging early, managing symptoms and understanding people’s needs. Then when they get to the point where they are going to die, they haven’t just lived. They’ve enjoyed living.

Charlotte Coulson (second from left) standing in 38˚ heat at Fitzroy Crossing, ready to do a clinic with a nephrologist, GP and pre-dialysis nurse.

What work did you do in England?

I did five years as a specialist nurse for the homeless in a London clinic run by the National Health Service. It was an attempt to engage with people in an environment they were used to, where they felt safe. Patients would drop in for breakfast and see me.

From there I worked with people who had an opiate addiction. They were very chaotic when they came to us, so we’d try to stabilise them on a methadone program over about 14 weeks and link them in with services like housing and advocacy.

I then had a case load at a general practice, where I was clinical lead for benzodiazepine withdrawal.

What brought you to the Kimberley?

I backpacked around Australia 16 years ago, nursing as I went, and ended up spending five months at Fitzroy Crossing Hospital. I loved the Kimberley, so I went home wanting to come back to Australia.

When WA Health advertised looking for nurses to work in rural areas I sent them my CV. They rang me the next day and said where do you want to go?

I went to Wyndham as a clinical nurse and after a few years transferred to Broome, working part-time on the ward at the hospital and part-time for the Kimberley’s specialist palliative care service. I’ve had five years in the Kimberley now and three of those have been in palliative care.

How did you end up working for the Kimberley Aboriginal Medical Service?

I was poached because their renal service could see a gap for patients who were not choosing an active treatment pathway. End-stage kidney disease has a huge symptom burden; for some patients it is the equivalent to advanced cancer. Even renal patients who continue to have dialysis often have quite nasty symptoms like pain, itch, restless legs, nausea and vomiting.

The gaps were occurring because patients and primary care providers weren’t aware that patients could feel better. Palliative care in renal care is still quite new and the idea of getting palliative care early wasn’t really happening.

Kimberley Renal Service is exceptionally innovative. As far as I’m aware, I am one of very few palliative-care-trained nurses who work for a renal service anywhere in the country.

What does your role involve?

A lot of it is planning, coordination and collaboration with other services to manage patients’ symptoms so they enjoy a good quality of life. I get involved quite early in the disease process, particularly if the patient wishes to take a supportive pathway, rather than receive treatment.

I try to enable patients to start thinking about their advanced care planning needs. We try to ensure patients understand their choices and we advocate for culturally appropriate care.

When patients enter the end of their life, I support the remote area nurses and GPs, so they know what to expect and how to manage renal patients appropriately. Most importantly, we talk with the family about their involvement and their concerns, and help them express their needs to the primary care providers.

People up here are very dependent on the support of family. If you explain to family, over multiple visits, what is going to happen and what they need to do, then at least they are prepared. It is good for the family and their grieving process.

We cover an area of 440,000km² and so I do a lot of video conferencing. But when the nephrologist visits the Kimberley I hitch a lift with them in little planes to remote communities or in a four-wheel drive to meet with families. I can’t be everywhere, so I do a lot to educate staff.

How many people does Kimberley Renal Service cover?

About 35,000 people live in the Kimberley and nearly 10% have some form of chronic kidney disease, so the incidence is huge. We have whole families, over generations, with chronic kidney disease, mainly because of hypertension and diabetes.

We have about 120 patients receiving haemodialysis in the Kimberley, but often we do not have space for more patients. At the moment, we have a further 100 patients choosing whether or not to have some form of dialysis.

What cultural issues affect local people’s end-of-life decision making?

Advance care planning is important to make sure people don’t end up having treatment they don’t want or understand. But you need to be careful about how you ask things.

If you say to someone, “If your heart stopped, what would you want us to do?” they would say “Everything”. But if you said, “If you get really sick and the medicine may not fix you, do you want to stay home or go to Perth?” the same person might say “No – if it is my time, I want to be at home”.

The patient’s needs might just be “Please keep me on country with family and let me go fishing. I want to live my life out until it is done.” We must always remember that English may be a patient’s third or fourth language, so interpreters are essential.

Up here, if you have end-stage kidney disease and decide you want dialysis, you have to go to Perth and stay there until a dialysis chair becomes available in the Kimberley. You could be stuck in Perth for months, if not years.

Being 2000km from home, not seeing family and living in a strange city can be very challenging. Perth is completely foreign. It’s a bit like if you were sick and in your 70s and told you had to go to Japan for treatment. Here’s an address written in Japanese. You can’t read the signs and the culture is different. Now find your own way there.

The pain of not dying on country has a huge impact on the wellbeing of the person, their family and the community. Often patients would prefer to be out bush with family, on country, than worrying about syringe drivers and pain management. The pain of not being on country may outweigh the pain of everything else. However, remote area nurses will support patients in their communities even when there are only limited resources available.

Were you confident to talk about dying with Aboriginal people?

When I first started up here I was really worried about it. You’re told you have to be careful, talking about death.

I work with one of the very few Aboriginal Health Workers in palliative care. I asked her what to say and how to say it, and she said “You just say it, Charlotte. People will let you know really quickly if they don’t want to talk about death”. So I did, and over the past three years I’ve found you can judge quite quickly if people are comfortable.

If they’re not, they will have a significant person who is. That person then filters information through the rest of the family. Usually there are family discussions and decisions. We must always respect that.

Above all, our patients just want plain language so they understand what you are trying to tell them. If you used the words palliative care, fistula and dialysis in the same couple of sentences, patients may not understand. It has no relation to their life or how they think about themselves and their health. If you say “There is no more medication now that will fix you. We can make you comfortable and ensure that you are with family in a place you want to be,” then that makes more sense.

When I see patients I’m always with an Aboriginal Health Worker or Care Coordinator and they make sure I’m being culturally safe and advocating for patients. If I’m talking too broadly too quickly, they will pull me back and say “We just need to talk about one thing at a time”.

Did you always know you wanted to do nursing and work in palliative care?

I’m a fifth generation nurse within my family. Mum was a district nurse. When I was sick and off school as a child she would sling me into her Mini Metro and take me to work. Mum was providing palliative care out in the community. In those days there were no specialist palliative care nurses.

I never thought palliative care was for me, but when the job came up I thought I’d try it as I had always enjoyed community nursing. I was very fortunate to work with Wendy Scott, whose knowledge and experience in palliative care is tremendous, particularly in the Kimberley. Wendy was really central to me understanding that palliative care needs to be patient-led, not clinician-led, and that really sparked my interest.

Wendy inspired me to do more study, so I’ve nearly completed my Master of Clinical Nursing specialising in palliative care through Edith Cowan University. I have a McLarty Palliative Care Scholarship, which was awarded by Cancer Council WA.