NACCHO Aboriginal Health and Palliative Care Week @Pall_Care_Aus @RuralDoctorsAus @KenWyattMP #NPCW18 NEWS ; 1. Updated culturally appropriate version of the Dying to Talk Discussion Starter. 2. My Health Record improving outcomes for people in palliative care

.

“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.

Download Aboriginal-and-Torres-Strait-Islander-Discussion-Starter

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

 

While it may seem like a confronting conversation to have, the Rural Doctors Association of Australia (RDAA) is urging rural and remote Australians to take the time to discuss with their local doctor and family how they want to be looked after towards the end of their life.

Speaking during National Palliative Care Week 2018, RDAA President, Dr Adam Coltzau, said talking about end-of-life care now can help ensure patients are better able to have the palliative care journey they choose, rather than have it decided by others.

“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. They provide care for patients throughout the trajectory of their disease and then, as the doctor at the local hospital, aged care facility or hospice, they often also provide care right through to the end of life.

“A number of welcome new initiatives will make it even easier for rural patients to stay in their community towards the end of their life.

“The increased use of telehealth – where a rural patient and their GP can consult via videolink with relevant specialists, who may be in a distant city location – can greatly reduce the need for seriously ill rural patients to travel from their community for medical care.

“For patients with life-limiting conditions, often the last thing they want to be doing is commuting back and forth to a distant city for medical appointments, which can affect both their physical and mental well-being.

“The other important step forward is the development of the National Rural Generalist Pathway, which will deliver more of the next generation of rural doctors with advanced skills training in a wide range of areas including palliative care.

“Dealing with death and dying is difficult, but it is an important conversation to have with your family and your doctor if you are suffering from a life-limiting condition.

“Palliative care patients deserve to have a high level of care available to them within their local community, and planning for this can reduce stress on both the patient and their loved ones as their condition progresses.

“Talk to your doctor about the options available to you, and put a plan in place early to ensure your needs will be met.”

NACCHO Aboriginal Health #PalliativeCare : Supporting Indigenous people to talk about their end-of-life care

 

The end of someone’s life is a very special time in Aboriginal and Torres Strait Islander culture. To ensure people have the care they want, in the place they want, it is important to be able to plan and discuss their wishes,

For example, returning to country at the end of life and having a traditional burial are often important for many Aboriginal and Torres Strait Islander people.

Being able to discuss these wishes with family and their health care team means they are more likely to have the best death possible.”

CATSINaM CEO Janine Mohamed ( Pictured above with the on Ken Wyatt ) says these resources will help health care workers open conversations around end-of-life care in a culturally safe way.

See Ministers Press Release below

New resources launched today by the Hon Ken Wyatt, Minister for Indigenous Health, will help Aboriginal and Torres Strait Islander people discuss their end-of-life care wishes with their families and health care teams.

The Aboriginal and Torres Strait Islander Dying to Talk resources were developed in partnership by Palliative Care Australia (PCA) and the Congress of Aboriginal and Torres Strait Islander Nurses and Midwives (CATSINaM).

PCA CEO Liz Callaghan says the 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.

“I also thank the Australian Indigenous Doctors’ Association and Indigenous Allied Health Australia for their input on this project.”

The resources can be accessed at http://dyingtotalk.org.au/and printed resources can be provided by request pcainc@palliativecare.org.au.

Palliative Care Australia is funded by the Australian Government.

New resources to help Indigenous Australians broach end of life discussions

A discussion starter about end of life care, specifically developed for Aboriginal and Torres Strait Islander people, was launched at Parliament House by the Minister for Aged Care and Minister for Indigenous Health, Ken Wyatt.

Page last updated: 28 March 2017 8.15 pm

PDF printable version of New resources to help Indigenous Australians broach end of life discussions – PDF 311 KB

A discussion starter about end of life care, specifically developed for Aboriginal and Torres Strait Islander people, was launched today at Parliament House by the Minister for Aged Care and Minister for Indigenous Health, Ken Wyatt.

Launching the Dying toTalk resources, Minister Wyatt said that starting a discussion about dying is never easy and can be hard when we want to talk to our families and friends about dying but they don’t want to listen.

“Sometimes, we put these discussions off because its confronting and we don’t want to face our own mortality,” he said.

“No matter what the reasons, I am very grateful to live in a country that has such a strong palliative care system in place and palliative care health professionals who help us tackle these discussions.

“I hope that today, with the launch of these new resources, we edge a little closer to making these conversations less difficult and more open.”

The Dying toTalk resources include a culturally appropriate step-by-step guide to make those difficult discussions about death that bit easier and a set of cards that can be used as a tool to start the conversations.

“Throughout the pages of the discussion paper and on the cards it asks us to consider a number of critical questions,” Minister Wyatt said.

“It’s structured. It’s succinct. It’s clear. It helps start the discussion about what would happen if you or a loved one were sick.”

“When you are sick, what would happen to your family? What would happen to your belongings? What sort of health care do you want? How important is it to visit country? How important is it to be on country when you die?

“These are all questions that need to be asked, and answered when we are still able to make our wishes known to the people we care about.”

The Australian Government provided $95,000 to Palliative Care Australia to develop the Dying toTalk resources which has been co-designed with the support of the Congress of Aboriginal and Torres Strait Islander Nurses and Midwives, Indigenous Allied Health Australia and the Australian Indigenous Doctors’ Association.

“The resources will be distributed across Australia to Aboriginal Medical Services and Aboriginal Health Services which will in turn help Aboriginal and Torres Strait Islander people start a discussion about dying in a way that is helpful, constructive and compassionate,” Minister Wyatt said.

“It will help Aboriginal and Torres Strait Islander people have the most difficult of discussions, with respect and dignity.”

The resources can be accessed at the Dying toTalk website.

 

NACCHO Palliative Care :Culturally appropriate end of life care for Indigenous Australians

Painting for Supportive and Palliative Care Team

Painting for Supportive and Palliative Care Team

Palliative care for Aboriginal and Torres Strait Islander people needs to be delivered with cultural awareness and respect, says Palliative Care Australia (PCA) chief executive officer (CEO) Liz Callaghan.

Ms Callaghan says quality palliative care for Aboriginal and Torres Strait Islander people occurred in some parts of the country, where services have worked with the community’s organisations to develop appropriate models of care, but there are many parts of Australia where this is not the case.

“Palliative care, like the rest of the health system, is not one size fits all. It should recognise the individual and that includes acknowledging the needs of an Aboriginal person or a Torres Strait Islander person.

“For many Aboriginal or Torres Strait Islander people returning to country to die is important, as is telling the story of their life.”

Ms Callaghan says the Implementation Plan for the National Aboriginal and Torres Strait Islander Health Plan 2013-2023 was significant.

“This plan takes forward the vision for the National Aboriginal and Torres Strait Islander Health Plan 2013-2023 but the focus for palliative care is limited to older Aboriginal and Torres Strait Islander people, their families and carers. There are no key performance indicators for palliative care.

“While some aspects of palliative care are recognised in the Health Plan, but we would like to see measurable goals put in place to drive change where it is needed.”

According to Ms Callaghan the latest Close the Gap report shows improving health outcomes for Aboriginal and Torres Strait Islander people, but there is still some way to go.

“This is reflected in palliative care. While the report does not examine palliative care, we know anecdotally that culturally appropriate care is not done well everywhere in Australia. Some parts of the county offer exceptional levels of care, but we need to see that good work spread.

“Culturally inappropriate care at the end of life can cause unnecessary suffering and distress for Aboriginal and Torres Strait Islanders, their families and communities.”

She says it is important that non-indigenous health care workers develop culturally safe practices through education, ongoing training and appropriate engagement with local Aboriginal and Torres Strait Islander communities.

“Many Aboriginal and Torres Strait Islander people have one or multiple chronic illnesses, particularly as they age. These people should have access to culturally appropriate care at the end of life that will help them to manage the symptoms of their illness so they can continue to live their lives well,” Ms Callaghan says.

Support sites includes

Do you belong to an Aboriginal or Torres Strait Islander community that could benefit from learning more about caring for people when they are getting ready to ‘finish up’?

PEPA offers a tailored workshop program for Aboriginal and Torres Strait Islander communities and healthcare providers predominantly caring for Indigenous people. This includes most staff from Aboriginal Health Services (Indigenous or non-Indigenous) and healthcare providers in Indigenous communities. A culturally safe program for Aboriginal and Torres Strait Islander health workers, health practitioners, hospital liaison officers and community workers, in most cases, elders and other community members may be invited to attend events.

The workshop aims to increase community awareness in caring for people who are unwell and not going to get better.  This program is flexible and customised to local needs within each state and territory.

The program is underpinned by the principle of Cultural Respect in that interventions and services should ‘not unwittingly compromise the cultural rights, practices, values and expectations of Aboriginal and Torres Strait Islander peoples’*.    The program has been developed with steering from the PEPA for Aboriginal and Torres Strait Islander Health Workers Reference Group, which includes representatives from Aboriginal and Torres Strait Islander health, policy and education sectors.

To find out more, please contact the PEPA Aboriginal Project Officer/ Consultant or PEPA Manager in your state or territory.

Join the twitter conversation about palliative care 31 March #pallanz

pallanz