Mr MILLS: My question without notice is to the Minister for Health. What input will the community have to a discussion paper on helping families and doctors to deal with the difficult issue of terminal illness?
Mr Moss: Whose brain were you holding?
Mr KNOWLES: I must say that I immediately thought I was holding the brain of the honourable member for North Shore. Seriously, I am sure that the honourable member for North Shore, like most honourable members in this Chamber, would have one story or another, usually based on their personal experiences, about the difficult decisions that need to be made when a loved one is near death. Anguish and uncertainty surround the very complex issue of determining how to treat a terminally ill member of a family. In such circumstances, there are no black and white solutions. Anyone who has ever been in the position of quietly saying to a doctor about his or her dying loved ones, "Look, just let them go. Let them be in peace," would understand just how difficult those decisions can be.
Naturally, the care of people who are dying also poses very difficult clinical and ethical questions for all health care workers. Advances in medicine mean that it is possible to extend life for terminally ill people, which raises questions about the degree of intervention by the health system and the health professional. Should sophisticated technology be used for dying patients? What are the consequences of decisions to withdraw life support from dying patients for both the health care worker and the hospital or hospice involved? How should those decisions be made? In 1993 the Health Department released interim guidelines on the management of those issues. The guidelines were designed to assist health care workers to make decisions about the care of dying patients. The guidelines are now being updated.
In a contemporary environment, where families, loved ones and next-of-kin are regularly incorporated in the decision-making process, it is appropriate that the medical profession be given the support of contemporary procedures and practices to assist them in one of the most sensitive tasks of health care—that is, assisting an individual and his or her family members through a person's final steps towards death. The revised guidelines acknowledge the basic principles of respect for human life, patient autonomy, the need for consultation, access to health care and, of course, professionalism. The processes outlined in the revised guidelines include the need to inform patients of all options available to them; the documentation of any discussions around those options; the development of management plans which document decisions made about the future of the patient; and the provision of palliative care. Since 1993 there has been an ongoing and iterative process within the health sector that has improved the interim guidelines as a result of the input of many experts in the field.
However, this issue needs to extend well beyond the medical profession and into the broader community. It is therefore appropriate to establish a formal process of consultation which will now canvass the views of not only medical and industrial organisations and nursing organisations in the medical field but will consider also the views of allied health groups, other health-related groups, such as non-government organisations [NGOs] and private health care providers, ethnic community groups, disability groups, consumer organisations and, of course, members of the general public. During the next three months there will be a formal consultation process involving over 900 individual organisations, government agencies, special interest groups, and operators of respite and palliative care facilities. These groups, together with interested individuals, will be provided with the revised draft guidelines for clinical decision-making at the end of life known as "Dying with Dignity".
Recipients will be asked to comment on important issues, such as how to define "imminent death"; whether the guidelines should be incorporated in emergency facilities; whether the guidelines should include intravenous therapy and nasogastric feeding as medical treatments that can be withdrawn; whether an expert reference group should be established to resolve conflicts, especially where children are involved; whether there is a need for legislation to enable a competent adult to appoint someone to make end-of-life decisions; and whether there should be a register of living wills for advanced directives about end-of-life decisions. These important issues need to be confronted sensitively and sensibly. My hope is that the revised "Dying with Dignity" guidelines and the community consultation process which is about to commence will assist in making those difficult decisions just a little easier.