Page 494 - Week 02 - Wednesday, 17 February 2016
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I am pleased to inform the Assembly about what participants said. In regard to the first question, the forums overwhelmingly came to the conclusion that people want autonomy over their end-of-life experience, wanting a peaceful, painless and dignified death. They emphasised their preference to die at home rather than at a hospice or in a hospital setting, choosing support from the family doctor, although one group mentioned a preference for Clare Holland House.
Addressing the second question, the participants unanimously agreed that the ACT had its hands tied behind its back in terms of introducing effective end-of-life legislation because of the commonwealth Euthanasia Laws Act 1997, also known as the Andrews bill. The participants also discussed the need for greater awareness and education about end-of-life issues in the broader community and said that health staff need to be more formally educated on these issues, including palliative care. Furthermore, participants asked that the discussion continue throughout the community and that the ACT government should foster and support such discussions.
The forums produced many recommendations in regard to the final question. The recommendations varied from legislative action and policy changes to more support programs. While there was an overall consensus that the Andrews bill needs to be challenged, there was also considerable agreement that the ACT government needs to take a broader approach that goes beyond repealing the Andrews bill and developing legislation in this area.
The forum suggested that professional research should be commissioned, with input from citizens, doctors and other health professionals, and that there should be an analysis of the current healthcare policies in relation to responding to the needs of the dying. The forums recommended more information and more education, starting as early as possible, to enable people to understand the need for healthcare directives for the end of life.
We must remember that death and dying are not the domain of older members of our society. Sadly, death comes too often to the young. The forums recommend that the ACT government provide more resourcing and support for the adoption of advance care directives, with an emphasis on making them more efficient and accessible to all.
Members of the forum reported an occasion when an advance care directive had been ignored by a healthcare professional and another occasion where paramedics were not able to access an advance care directive when they went to the attention of a person who was dying at the time or unconscious. These are just examples.
Participants suggested that an online hub or digital portal where all advance care directives are stored and can be accessed would address this issue. This would be accessed nationally by paramedics, doctors and other health staff.
Forum participants want the conversation to be more informed by finding out what is currently happening here, interstate and overseas; and the current attitude of the medical profession, paramedics, lawyers, ethicists and the general public towards the question of choice.
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