Dying with Dignity ACT Inc. has made a move to new premises for its Committee and General Meetings to The Grant Cameron Community Centre, at 27 Mulley St, Holder. So far this year we have held two committee meetings and one General Meeting there. The rooms are very comfortable although people have complained that the Centre is hard to find, so those coming to the next general meeting should allow plenty of time to find it if you are not familiar with the area.
We have three new committee members; Roderick Kidston who was elected at the AGM last year, Janet Smith and Peter Martensz. Regrettably Clive Monty has ended his many years of committee membership. We thank Clive for his participation and work on the committee.
I attended a forum on end-of-life issues arranged by Mary Porter MLA AM this year. It was addressed by two lawyers from the University of Queensland followed by two discussion sessions. Mary has addressed the assembly on the issue of euthanasia recently and we hope that there will be more active community discussion generated by the Government happening in the next few years.
We have received requests for information about Advance Directives from people who are suffering from terminal illnesses or are about to go to hospital. We urge everyone to contact the Respecting Patient Choices program at The Canberra Hospital as soon as possible. The helpful team there will take you through what is required. There is no point in waiting to attend to this matter. And it is really just another stress to add to your worries when you are facing a life threatening illness. Our website gives links to the Respecting Patient Choices website which will lead you an Advance Care Directive form that can be printed out. When it receives your form The Canberra Hospital will scan it into their records and it will be used as a basis for guiding your treatment.
Our Communications Officer, Ailsa Turrell, continues to update our website with articles on a regular basis and has placed several more relevant articles on her Facebook page (linked to our Website). She has received Facebook “likes” even from overseas. Earlier this year I had an article called Death Fetish accepted for publication by the Festival of Dangerous Ideas site. That article is now on our website. We did plan to begin writing a book this year but a number of factors have led us to put aside that idea for the time being. In the mean time we have begun a new section on the website called ACT stories under our stories section. Anyone from the ACT can write their own story about why they want reform of the law to allow assisted dying and have it published on the website. So if you have a story to tell please email it or post it to us.
We had a stall at the Seniors Week Expo on 20 March at EPIC. Many people took a brochure and remarked on how they believed in the issue. However it translated into only a few memberships. The day has however forced us into organising brochures, a stand and other paraphernalia that goes with such activities so that we can be identified as a group which can begin to make an impact on thinking in the ACT.
The ACT Human Rights Office referred our submission (mentioned in previous Bulletins) to it to the Victorian Human Rights Commission with the idea of asking DWDV to pursue our human rights claim in a jurisdiction where there was no Commonwealth law influencing the capacity of the state to make laws on euthanasia. Unfortunately DWDV already has its own political goals planned and that idea has not proceeded. We will continue to pursue our submission and I made a submission to the Review of the Scope and Operation of the Discrimination Act 1991 last week since the basis of our human rights submission is a claim of discrimination.
We have been a little surprised and disappointed at the drop in renewals of membership this year. Nevertheless there are always new people ready to get involved and that is cheering. Membership is primarily important as a statement to politicians that euthanasia is an issue people care about. Membership fees are low and if we succeed in the end, it’s a bit of long term insurance for very little cost.
Our first General Meeting for the year was held at 2 pm on 10 April 2014. Twenty one people attended. Our Guest Speaker was Helen O’Brien, Executive Officer of Palliative Care ACT.
Helen is not a medical clinician but has a background in training. Helen described Palliative Care ACT as an organization that exists for people with a terminal illness. In pain management it was possible to use too many drugs so the patient becomes “out to it”. When people choose to refuse treatment, palliative care comes in. Others are involved too, from the GP onwards.
She identified various problems. Eighty percent say they want to die at home, but we don’t have the resources. Calvary Hospital (via Clare Holland House) has an aged-care nurse who visits the 50 or so aged care facilities. These various places tend to have different concepts of palliative care. They tend to send you off to hospital when things become dire. How are we to improve this?
From the floor, Adele Stevens said at Canberra Hospital they now must check if you have an Advanced Care Plan. All ward clerks do this and now the Emergency Department does too. It must be printed out and fastened to the front of your treatment record.
Helen described what palliative care is. Palliative Care ACT runs a volunteer service. But it is difficult to care for people properly at home. The EACH (Extended Age Care at Home) package should ideally include palliative care. There are 180 carefully selected volunteers, who are given 40 hours training based on a Victorian manual. There are three co-ordinators. Volunteers are used in aged-care homes and in private homes.
Palliative Care is there to provide whatever the dying person needs. It runs day-hospice programs for those living alone at home, one at Curtin and one at Cook. It is now moving volunteers into Canberra Hospital for those who have no-one – e.g. writing letters for them, reading, sitting with them, feeding help if needed, hand and foot massage, and so on.
From the floor, Jeanne Arthur remarked that in the ACT about 1700 people die each year.
Helen responded that of these only about 200 die at home, about 700 at Clare Holland House, and the rest in hospital. One can ‘self-register’ into the day-hospice program, but nowhere else. The team from Calvary provide “high-end” care. At Clare Holland House, some are admitted for medication management, and may return home. Clare Holland House is managed directly by Calvary Hospital, not by Palliative Care ACT.
A lively questions and answers session with discussion followed.
On the motion of the President, the speaker was thanked appreciatively and the view was expressed that we would like a talk from a Palliative Care nurse, a clinician.
Our General Meeting on August the 21st will be a combination of a Special General Meeting to accept changes to the Constitution that the committee is recommending and a talk that I will be giving at the Chicago Conference of the World Federation of Right to Die Societies in September.
Jeanne Arthur
President
Dying with Dignity ACT Inc.
PO Box 55, Waramanga ACT 2611