industry & policy
A good death
Kim Macgowan ( right ) with clinical nurse specialist Leanna Woods . Photo : The District Nurses
A Tasmanian pilot program that delivers in-home palliative care is giving patients the death they prefer .
By Dallas Bastian
In 2004 , chief executive Kim Macgowan was chatting with her 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 were 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 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 hospice @ HOME , has now been running for four years and has helped about 2500 people from all over Tasmania to die in the place of their choosing . The program aims to fill gaps in home hospice care , such as overnight assistance , levels of care on weekends and public holidays , equipment access and A good death service provision to people in rural and remote areas .
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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 hospice @ HOME 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 ,” she says .
“ I gave an undertaking to the Tasmanian people that every Tasmanian would have access to hospice @ HOME . 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 hospice @ HOME ’ 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 after-hours 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 after-hours access to support . The team also uploads the patient ’ s favourite photos , music and books .
The device would not only give people information and entertainment at their fingertips but also allow them to videoconference 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 call 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