Professor Ian Maddocks makes Palliative Care his business and wants you to make it yours

Senior Australian of the Year Emeritus Professor Ian Maddocks is distinguished for his work as a palliative care specialist and advocate. He was the first president of what is now known as Palliative Care Australia and has been an international leader in raising awareness of palliative care in medicine. The Australian Hospital and Healthcare Bulletin spoke with Professor Maddocks about the inspiration behind his passion for palliative care, and the hopes he has for its advancement in Australia.
How and when did you first get interested in palliative care?
I read an article by Victor Zorza, a polish journalist in the UK who was published in The Guardian. It was about the death of his daughter and what impressed me most about it was that this young girl, dying of lymphoma in a hospice, had been so well looked after that she had been able to take her parents through the process of dying with her. She’d had such excellent care and the opportunity for the family to go through this together was both moving and powerful.
There were many people who were inspirational. Cicily Saunders worked at St Christopher’s hospice in 1967. One of the insights she had was she recognised that small doses of morphine were very helpful to people who were suffering pain, and until that message came to be recognised, we all thought morphine was something you could be given by injection and you could only have a certain amount of it. She began to show the world that people’s needs were variable. She was a very formidable lady, who trained as a nurse and then recognised she needed to do more, so trained as a social worker and then a doctor. She was a full team in herself.
What were some of the early advances in palliative care in Australia?
After reading Zorza’s article I said to the people at the hospital where I was working in South Australia that we should be doing something better for people who are dying. So, I began to explore a bit, because there wasn’t much at the hospital and they didn’t have any room for a special unit for people who were dying. We formed a group and started on working on how we could do this better. We got a small grant to research the problems for people who were dying and learn where we might be able to improve.
We had our first national conference on palliative care in the early 90s, formed a national hospice association and ran it in Adelaide. It eventually became Palliative Care Australia. We managed to get some changes fairly early on, for example, the government in South Australia accepted a policy that palliative care was part of everyday health care and they put money in to establishing a palliative care service. Now, throughout Australia, we have funding from government, hospices set up with government money, and we’ve done very well in that regard. To some extent, however, we miss out on community support and we are working on changing this.
Where do you see palliative care services placed at present?
I think we’ve been more comprehensive in terms of being about making it everybody’s business – that’s the theme Palliative Care Australia has adopted this year. 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.
“I think we’ve been more comprehensive in terms of being about making it everybody’s business – that’s the theme Palliative Care Australia has adopted this year.”
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.
We have seen a very even spread of services across the country, even regionally, so that there are now many palliative care teams that can reach out to support local community nursing services and so on. It’s a reasonable comprehensive service in Australia, but there’s still a long way to go.
What do you think needs to be done to further engage the medical profession in palliative care?
A lot of general practitioners (GPs) need further support and encouragement to take up their role in palliative care. 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.
There is a lot of help available. I say to my students that palliative care is about management and trying to assess the needs, knowing what resources are available and bringing them together. We also need to educate the family and carers on what it’s available.
Everybody needs training in symptom management – more than what they are getting. Much of medicine is about diagnosis and treatment and not so much about looking after the holistic needs of the patient. We need to talk more about patient-centred care, believe the patient and try to meet the needs of the patient. We have a way to go with this and there are still patches where it’s not being done very well. Specialists, who are very focused on their own little areas of medicine, are not prepared for comprehensive, holistic patient-centred care. They hand on to somebody else and some people can be trucked around from one specialist to another. I have a friend who said “I’ve got a radiotherapist, an oncologist and I don’t know who’s looking after me”. They need a GP or a palliative care team member who can assume control and make sure things that should be happening are happening. It’s very important.
What are your thoughts on how medical practitioners should approach palliative care with their patients?
I don’t think there are any special techniques you need to help people face the realities of death and dying. 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. We should all be thinking ahead about what we want in our later years, about what we are going to depend upon, how much our families are going to be able to support us and so on. Families used to look after each other when they were dying at home and now they are scattered all over the world. A lot of elderly people, who are sick, are also isolated. It takes a bit of management.
What would you like to see as the next step in the advancement of palliative care services being offered in Australia?
What we are hoping to see is a greater flexibility in the way in which aged care is delivered, so that it’s not so compartmentalised into nursing homes and community care and hospital care and so on. People should be able to move smoothly between all these options.
I’ve often drawn a triangle which is HHH – Hospital, Home and Hospice – and people should be able to move around that triangle and have the same contact available for them all the time. The opportunity to link everything together, to be flexible and coordinated, is going to be an important thing for us in the area of aged care.
Has your appointment as Senior Australian of the Year helped to get the message of palliative care to the medical and broader community?
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.
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.
Senior Australian of the Year
Professor Ian Maddocks
As well as being renowned for his work in palliative care, Professor Maddocks is an advocate for world peace. Since 1982 he has worked with medical groups seeking to eliminate nuclear weapons. He was President of the Medical Association for Prevention of War when it received an Australian Peace Medal, and Vice- President of International Physicians for Prevention of Nuclear War when it received a Nobel Peace Prize. He is also recognised internationally for his work in tropical and preventative medicine. As well as working as Emeritus Professor at Flinders University, he continues to work with projects in Papua New Guinea, where he spent 14 years at the University of PNG, becoming foundation Dean of medicine. He continues to practice as a palliative care physician, providing daily care for the terminally ill