Dean Smith (WA, Liberal Party) Share this | Hansard source

I also want to speak on the report of the Community Affairs References Committee into palliative care in Australia. The report is most definitely a timely reminder of the importance of palliative care in the Australian community. There are a number of elements of palliative care that I would particularly like to draw to the attention of the Senate. The first is its commitment and the place it plays in affirming life and regarding dying as a normal process and its place in recognising the integration of psychological and spiritual aspect of patient care, but also its place in offering a support system to help patients live as actively as possible until death and in offering a support system to help the family cope during the patient's illness and in their own bereavement.

Much attention has been given to the palliative care needs of older and ageing Australians and those enduring the debilitating effects of various cancers and their treatments. This is a powerful demonstration of the value we put not just on human life but also on living life. I would like to use the limited time available to me to draw attention to the palliative care needs of children and adolescents. I am pleased the report contains special reference to the palliative care needs of this special part of our community. On a personal level, it has been empowering to understand more about the need for and availability of special palliative care services for babies, both perinatal and neonatal. Like others, I am concerned about the lack of specialist perinatal and neonatal palliative care in Australia.

The committee was presented with evidence of several case studies which demonstrated the urgent need for perinatal palliative care. The final report details concerns of one professional about the misunderstanding, miscommunication, suspicion and neglect from medical professionals, specifically with regard to perinatal and neonatal palliative care needs. I want to specifically acknowledge the contribution of Professor Wilkinson, the Associate Professor of Neonatal Medicine and Bioethics at the University of South Australia. I want to share some comments made by Professor Wilkinson to the inquiry which demonstrate the significance of this all too forgotten area of palliative care need. In his contribution, he said:

Every year in Australia there are approximately 1,200 infants who die before their first birthday, most in the first days or weeks of life. Some of these infants die suddenly and without warning but for about two-thirds their death is expected or anticipated and those caring for the infant have recognised that they are unable or unlikely to survive. There are two main groups of infants. One group of infants have received life support and intensive treatments but have deteriorated despite treatment. For example, in the neonatal intensive care unit where I work there are a small number of babies who had been born extremely prematurely who have then developed very serious complications of being born so early and whose parents now face the difficult prospect of losing them after weeks or even months of treatment in hospital. There is a second group of babies who have been diagnosed in the womb as having a serious congenital malformation so serious that it is likely to lead them to dying both or in the newborn period. Their parents face the heartbreaking choice of either terminating the pregnancy or continuing it but in the prospect of spending only a short time with their baby.

I am pleased to say Professor Wilkinson's evidence also provides and identifies significant opportunity and hope for the needs of these families with unborn and recently born children. People are welcome to visit the Hansard to look at what I thought was a very hopeful contribution.

The committee's report contains a specific recommendation which addresses the special but neglected needs of neonatal and perinatal palliative care. The committee has recommended that the Commonwealth government give increased attention to the need for improved research, education and services to support the perinatal and neonatal palliative care needs of health professionals, pregnant women and their families and newborn infants.

Finally, I want to like pay very special recognition and appreciation to the courage and advocacy of Mrs Fiona Engwirda and Mr Richard Burnet who spoke of their very personal and individual experiences in identifying and securing palliative care needs for their young children. Again, their contribution has gone a very long way to building a better understanding of the palliative care needs of our community. As a result of the evidence presented, I am pleased that the committee has recommended that government give careful consideration to the special circumstances of families caring for terminally ill children when considering future changes to the eligibility criteria of the carer allowance and the childcare rebate. This inquiry was my first full inquiry since I was appointed to the Senate Community Affairs References Committee and I would just like to acknowledge the work of our chairman, Senator Siewert, the dedication and enthusiasm of my colleagues and the work of the secretariat. I seek leave to continue my remarks.

Leave granted; debate adjourned.