“Death is hard. It brings us grief. But I think the other side of grief is when we know that we’ve met the wishes of a loved one.
I’m impressed with the quality of thought underpinning the Dying to Talk resources, which would ease people gently into the discussions that we need to have . The resource is helpful, constructive and compassionate”.
Such was the wisdom offered by Minister for Indigenous Health, Ken Wyatt, when he launched in 2017 resources designed to help Aboriginal and Torres Strait Islander people discuss end-of-life care wishes with their families or health care teams. See Part 1 Below
Read all NACCHO Articles about Aboriginal Health and Palliative Care
Picture above : The Minister for Indigenous Health, Ken Wyatt with Palliative Care Australia CEO Liz Callaghan (left) and Congress of Aboriginal and Torres Strait Islander Nurses and Midwives CEO Janine Mohamed. Originally published 2017
” Australians are being encouraged to include My Health Record in the discussion of ‘What Matters Most?’ during National Palliative Care Week for 20 -26 May 2018
What matters most for a lot of people is being able to take control of their own health and their digital health information.
My Health Record is an online summary of your key health information, which is controlled by the individual, allowing health care providers involved in a person’s care to securely share health information. For people who require palliative care, this takes a lot of the pressure off. ”
See Part 2 Below
“Many rural and remote patients want to be able to spend the last months and weeks of their life in their own community, and ideally on their own farm or in their own home, rather than at a major hospital in a distant city” he said.
While improving access to palliative care remains a critical need in rural and remote communities, rural doctors and other rural health professionals do a great job in providing quality end-of-life care in a patient’s own community, wherever that is possible.
This whole team approach can include palliative care nurses, Aboriginal Health Workers, community nurses and others, with support from the Royal Flying Doctor Service.
Rural doctors are frequently on the front-line of palliative care provision in rural and remote communities”
Rural Doctors Assoc. of Aust. See Part 4 below
The resources include a set of cards, each printed with a statement, which healthcare workers can use to facilitate discussion with individuals or groups.
Also launched was a culturally appropriate version of the Dying to Talk Discussion Starter.
Among questions about family, possessions and health care, it asks about the importance of visiting country if you were sick and not going to get better, or being on country when you die.
Mr Wyatt congratulated the organisations that collaborated to develop the “invaluable” resources: Palliative Care Australia, the Congress of Aboriginal and Torres Strait Islander Nurses and Midwives, The Indigenous Allied Health Australia and the Australian Indigenous Doctors’ Association.
“Your step-by-step guide will make those difficult discussions about death a little bit easier. It is structured, it’s succinct and it’s clear.”
During the launch, Dr Wyatt reflected on what he had learned while working as an undertaker and talking with relatives of people who had died. Often they said they had never discussed death and so didn’t know what their loved one had wanted. They wished they had had this important discussion, or taken the time to listen when their loved one had asked to talk about death.
“It was a salient experience and taught me to live life fully on a day-by-day basis, but to also have a long term plan as to where I wanted to go to. And that is why talking about death is important. Because you can signal your intentions but at the same time prepare your family for the event whenever it does occur, because we are all mortal.”
PCA CEO Liz Callaghan said the original Dying to Talk Discussion Starter was launched in 2016. The new culturally appropriate resources were developed after consultations with Indigenous health organisations that identified the need for a specific resource for Aboriginal and Torres Strait Islander people.
“The Aboriginal and Torres Strait Islander specific resources have been developed to support advance care planning and end-of-life discussions,” Ms Callaghan said.
“Focus groups were held with Aboriginal and Torres Strait Islander people to understand what barriers they had in discussing their end-of-life care wishes and planning for death. Those focus groups informed the design and content of the Discussion Starter and the Dying to Talk Cards to ensure they were culturally safe and useful.”
Development of the new resources was funded by the Australian Government. They will be distributed across Australia, to Aboriginal Health Services and Aboriginal Medical Services.
The Discussion Starter can be downloaded from http://dyingtotalk.org.au/aboriginal-torres-strait-islander-discussion-starter/.
The resources feature artwork by Indigenous artist, Allan Sumner. The artwork conveys the journey of palliative care patients over the course of their lives, reflecting memories, loved ones, what is important, and what they have done and achieved.
Part 2 My Health Record improving outcomes for people in palliative care
Australians are being encouraged to include My Health Record in the discussion of ‘What Matters Most?’ during National Palliative Care Week for 20 -26 May.
What matters most for a lot of people is being able to take control of their own health and their digital health information. My Health Record is an online summary of your key health information, which is controlled by the individual, allowing health care providers involved in a person’s care to securely share health information. For people who require palliative care, this takes a lot of the pressure off.
While most people think palliative care to be just for those in their last days of their illness, Palliative Care Australia CEO Liz Callaghan said that palliative care is not just care provided in the final stages of life, but helps those affected to live well with a terminal illness.
“People accessing palliative care services often have complex needs and their care team includes many health professionals including pharmacists, doctors, nurses, and allied health professionals. My Health Record makes it easier for those professionals to share information about medications, test results, and care plans.
“Australians can also share their advance care planning documents through their My Health record, ensuring all health professionals know what their wishes for their future care are,” Ms Callaghan said.
Agency Chief Clinical Information Officer and Executive General Manager Dr Monica Trujillo said palliative care is for people of any age who have been told that they have a serious illness that cannot be cured; it’s about assisting in managing symptoms and improving quality of life.
“For some people, palliative care may be beneficial from the time of diagnosis with a serious life-limiting illness. Palliative care can be given alongside treatments given by doctors and members of the treating team. Having a My Health Record means all medical practitioners and treating team can be kept up to date.
“My Health Record can enable important health information including allergies, medical conditions, medicines, pathology and imaging reports to be accessed through one system. The benefits could include reduced hospital admissions, reduced duplication of tests, better coordination of care for people with chronic and complex conditions, and better informed treatment decisions,” Dr Trujillo said.
Carers Australia CEO Ara Cresswell said My Health Record can also assist with carers or loved ones who want to assist the patient going through palliative care.
“My Health Record can lessen the stress of having to remember details of the diagnoses and treatments of others, and help prevent adverse medication events. The ability to upload the patient’s end-of-life preferences can also lessen the distress of those forced into making very difficult decisions on behalf of a family member not able to communicate their own wishes.”
A My Health Record will be created for every Australian, unless they choose not to have one. The opt out period will run from 16 July to 15 October 2018. Records will then be created for interested Australians by the end of the year.
For further information visit http://www.myhealthrecord.gov.au or call 1800 723 471
Part 3 Dying on Country
Part 4 Rural Aussies urged to talk end-of-life care
with their doctor and families
National Palliative Care Week – 20-26 May 2018