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Making palliative care everybody’s business

According to a survey released by Palliative Care Australia (PCA), having a bucket list is not worthwhile if our most basic wishes in relation to death and end-oflife care aren’t being carried out. Heading the challenge to change this is 2013 Senior Australian of the Year, Professor Ian Maddocks.

As the founding president of the Australian Association for Hospice and Palliative Care (now PCA) and of the Australian and New Zealand Society for Palliative medicine, Professor Maddocks has paved the way for palliative care programs in Australia. He is the current Emeritus Professor at Flinders University, maintains his involvement at the University of Papua New Guinea where he spent 14 years, and continues daily care for the terminally ill.

Professor Maddocks’ awards are plentiful, and include an Australian Peace Medal when he was president of the Medical Association for Prevention of War, and a Nobel Prize for Peace when he was vice president of the International Physicians for Prevention of Nuclear War. He is also internationally renowned for his work on tropical and preventative medicine. But it is this latest accolade, Senior Australian of the Year, that will give him the most opportunity to promote his passion of palliative care to the public.

“It has given me a lot more forums to talk to people, such as this interview, and provided the opportunity to highlight that palliative care is an important part of life and people should be given every opportunity to reach the end of their time in comfort,” Professor Maddocks says.

“It’s been wonderful to have Ita Buttrose (Australian of the Year) talking about dementia and alzheimer’s, and Noelene Brown (Ambassador for the Ageing) talking about aged care, as they all have a lot of common themes. “It’s been good to talk about advanced directives and their importance, and also to recognise the work of volunteers, families and carers who are so important. “There really is so much to talk about,” he says enthusiastically.

Palliative care is specialist care provided for all people living with, and dying from a terminal condition and for whom the primary goal is quality of life. The PCA survey, which involved 1000 people who had recently lost a loved one, highlighted how hard it is for Australians to talk about dying. More than half of the participants felt unprepared for the death of a loved one and were stressed, anxious and exhausted, while one in two don’t even discuss end of life care with their loved ones. Only 15 per cent had a plan for their final weeks. The theme PCA has adopted to raise awareness of palliative care is ‘It’s everybody’s business’ and to professor Maddocks, this also includes the medical fraternity.

“A lot of general practitioners (GPs) need further support and encouragement to take up their role in palliative care,” Professor Maddocks says. “We are seeing changes in general practice that are not always positive. “A lot of GPs these days are not doing much in the way of home visits, for example. “Death at home is really quite desirable and we are not enabling this as often as we should.

“We also need to educate the family and carers on what it’s available.

“I think we’ve been more comprehensive in terms of trying to make it everybody’s business. “We began by showing, through palliative care specialist teams, that there is a great deal you can do, not only for people’s physical needs, but their emotional needs, spiritual needs and their family needs.

“It’s also not something that’s just done for people dying with terminal cancer, but it’s now more available for people with other chronic diseases, such as cardiac disease, respiratory disease, neurological disease, and so on.”

Professor Maddocks says there are two ways people can made sure their palliative care needs will be met. The first is to nominate a person who is going to speak for you if you can’t speak yourself. “If you are going to do that you have to have had fairly deep conversations with them about what your own sense of values is, whether you want to have anything done to keep you alive, or if you don’t want all that and just want to be kept comfortable until the time comes.

“The other thing you can do,” he says “is write it down. “Put it on paper if you want to go to hospital or stay at home. “The more you can write down in advance, the better. “These advanced directives are very important. “It’s clearly shown that when advanced directives are put in place the family is far more relaxed about what’s ahead.” PCA president Professor Patsy Yates agrees. “In the same we prepare a will, or let our families know if we want to be buried or cremated, we need to be telling our loved ones where we want to spend our final weeks and how we want to be cared for at the time.

“Advanced care planning can ensure our loved ones’ choices for future medical treatment are recognised so that their beliefs, preferences, values and decisions can be respected. “It also means that those left behind are not faced with the daunting prospect of making uninformed decisions on a person’s behalf.”

Helping people face the realities of death and dying can be a difficult task, Professor Maddocks says, but it can make a great difference to quality of life.

“Sometimes I feel, just because I am introduced as a palliative care physician, that it sets the scene. “They know what they are up against and they know they are going to be with someone who will focus on their symptoms through to the time of death. “Some are a bit sad when they meet me, but once we get to know each other, they are usually very happy and begin to look forward to seeing me; they look forward to talking about the realities, of what’s ahead and how we are going to meet it. “It’s a very important discussion and it has to happen early.”

For those people who have a loved one living with terminal illness, PCA offers advice and information. A new website MyTribute has recently been launched to invite people to acknowledge a lost loved one and reflect on their final weeks. The site aims to encourage discussion about death and dying and highlight the importance of taking control of decisions about end-of-life care through advance care planning.

As Professor Maddocks says: “palliative care is about management and trying to assess the needs, knowing what resources are available and bringing them together. “When it’s done well, it’s just lovely.”