Giving Australians the death they’d prefer

In 2004, chief executive Kim Macgowan was chatting with The District Nurses team and came across a student nurse who was sobbing. The nurse felt she had just made the last visit to one of the service’s clients. The man she had been caring for had terminal cancer and she was concerned that he would die alone and in pain.

Macgowan told her that while those things might be true, he would also be dying at home, in the place of his choosing, and that while many Australians would like to do the same, they’re not always able to.

That was a turning point for Macgowan, who knew something had to be done to ensure more people would have a good death.

Fast forward to 2013, speeding past several years of knockbacks when trying to get a program off the ground, The District Nurses won an Australian Government tender for $35 million to improve access to palliative care.

Its program, called [email protected], has now been running for four years and has helped close to 2500 people from all over Tasmania to die in the place of their choosing. It aims to fill gaps in home hospice care, such as overnight assistance, levels of care on weekends and public holidays, equipment access and service provision to people in rural and remote areas.

Macgowan says: “The whole purpose of our program is to keep people out of hospital for as long as possible, with the view that we will do whatever we need to do for people to be able to die at home, and within their own community.”

Almost two-thirds of people cared for under the [email protected] program have been able to die at home, and Macgowan says all have stayed at home far longer than would have been possible before.

"In order to achieve this, we had to train an entire workforce [of community support workers] in the entire state,” Macgowan says. “I gave an undertaking to the Tasmanian people that every Tasmanian would have access to [email protected] We've achieved that, with patients being seen on every mountain, in every valley and on every island.

“As The District Nurses, we didn't come riding in on our big white bikes and take over. We used a brokerage model where we engaged the smaller organisations that are already there in the community and usually staffed by people that patients already know. We would pay those organisations to be able to put in the extra care that these clients needed to stay at home.”

Ironing out the kinks before they arise

One of the challenges the service faced was the availability of medication. Macgowan says: “In Tasmania, there is not any access to medications after 8 o'clock in the evening. There are no pharmacies open. And the only place you would get medication after 8 o'clock is in a hospital, or sometimes through a 24-hour call-out doctor. But end-of-life medication is really quite specific. So, even if you got your GP to visit you at home, you still couldn't get the medication until the next day.

“We knew from our research at the very beginning of this that if we could prevent the phone call to an emergency department or an ambulance, we could prevent people being admitted to acute care, and not only then all of the costs of the acute care system, but also they very rarely go back home.”

One of [email protected]’s solutions was the ‘just in case’ box. Inside it was an internationally recognised suite of medications required to manage someone at end of life. “That way, if the afterhours nurse goes in, if the ambulance service goes in, if a GP goes in, they can access the medication, and it prevents people being sent to emergency departments,” Macgowan says.
Another workaround the team thought up was to provide patients with an iPad loaded with information to ensure people had afterhours access to support. The team also uploads the patient's favourite photos, music and books.

The device wouldn’t only give people information and entertainment at their fingertips but allow them to video conference with a nurse. Macgowan says: “In the middle of the night when you might be sitting with your mum, who's at end of life, and she starts to make horrible noises, you can pick up the phone and phone one of our nurses, and be reassured that this is normal, and this is what we expect, and this is what you can do for it.”

Macgowan says: “We covered off all of the possible reasons why someone ends up calling an ambulance, going into an emergency department, then remaining in acute care and not getting home.”

The future of hospice in the home in Australia

The funding for the project is coming to an end soon, in December this year. The District Nurses team has been busy presenting the results of the program to the Government through the Productivity Commission and Federal and State Budget submissions.

Macgowan says: “We would like to see a consistent approach to palliative care/end-of-life care across Australia and for the Australian Government to now look at introducing a model of care across the country that supports people to remain at home and take that burden away from the acute care system.”

The Australian College of Nursing (ACN) has echoed that call. Chief executive adjunct professor Kylie Ward says it’s time to investigate how to enable trained healthcare professionals to provide end-of-life care in a person’s home. “States and organisations are currently successfully delivering this type of care in locations around the country, but what we are saying is support must be provided so all Australians are given the right to die in the place of their choosing.”

ACN says programs like [email protected] demonstrate that in-home palliative care not only enables people to stay in an environment where they are comfortable and with their family and friends, but offers significant health-care savings.

“The Tasmanian experience shows that providing palliative care in a person’s home costs around $39 a day, yet a hospital bed costs $1500 a day,” Ward says.
Macgowan, who will be presenting on the project at next week’s ACN National Nursing Forum 2017, says the program has been so cost effective that the service was able to run it for an additional year to the three for which the funding was allocated.

On top of that, she says the program has made a saving to the Tasmanian public hospital system of an estimated $12.4 million its inception in 2013. “Added to that is the incalculable cost of all these families who, after the death of their loved one, are not in that terrible bereaved traumatised state, where they wish things had been different, and are exhausted from travelling to hospital. What our families tell us is that because they've been able to contribute to that end-of-life period and give mum [for example] a good death, and a death surrounded by her loved ones, they're in a better place as well.”

Ward says: “While we are fortunate enough to have one of the best health systems in the world, we must not become complacent and opposed to consumer-driven ways of delivering care. In particular, we must constantly work to make sure we are delivering health care in the manner and place that is best for individuals.
“People’s preferences change. We can see this in the increasing desire Australians have to age in place, and now we know they want to extend this to being supported to die at home.”

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