Talk for Alzheimer’s Australia ACT Dementia Network – End of Life Care Planning for People with Dementia

My talk today is in three parts: It’s designed to ask you to think about why we need law reform in relation to death. I am arguing that we currently have no control over the end of our lives and this is due to the law. How we die is completely in the control of parliamentarians and the laws they have made.

  • The first part of my talk reflects on what happens when we die
  • The second is a brief outline of DWD ACT’s ideas about how we should manage dying and death.
  • The third part is about how these ideas connect with dementia.

I’m going to start with three quotations about death. The first is from Bill Bryson’s, A Short History of Nearly Everything, written in 2003.

“All things are made of atoms” They are everywhere and they constitute everything. They are fantastically durable. Every atom you possess has almost certainly passed through several stars and been part of millions of organisms on its way to becoming you. We are so atomically numerous and so vigorously recycled at death that a significant number of our atoms – up to a billion for each of us, it has been suggested-probably once belonged to Shakespeare …..and any other historical figure you care to name ……. So we are all reincarnations – though short lived ones. When we die, our atoms will disassemble and move off to finds new uses elsewhere – as part of a leaf or other human being or a drop of dew. Atoms themselves, however go on practically forever.  Won the Aventis prize for Science books in 2004.

Commonly we think in terms of death as being the end of life rather than the end of this life – that our atoms are using us as a vehicle to make their way through on their journey. Consequently we think of death as being a ‘Grand Tragedy’ if it comes as we judge, too soon, as a result say of an accident or murder or at one’s own hand or early onset cancer. In the end our death doesn’t matter. We move on through our atoms into the next stage of their existence.

My second quotation comes from John Gribbin’s, In Search of Shrodinger’s Cat, First published in 1984.

Virtually everything we see and touch and feel is made up of collections of particles that have been involved in interactions with other particles right back through time, to the Big Bang in which the universe as we know it came into being. The atoms in my body are made of particles that once jostled in close proximity in the cosmic fireball with particles that are now part of a distant star, and particles that form the body of some living creature on some distant, undiscovered planet. Indeed, the particles that make up my body once jostled in close proximity and interacted with the particles that now make up your body.

In fact every single person here is made up of particles that are billions of years old, looking with eyes and brains in a highly evolved state at each other and thinking and evolving as I speak.

My third quotation comes from Paul B Sears, 1935, book Deserts on the March.

The face of the earth is a graveyard, and so it has always been. To earth each living thing restores when it dies that which has been borrowed to give form and substance to its brief day in the sun. From earth, in due course, each new living being receives back again a loan of that which sustains life. What is lent by earth has been used by countless generations of plants and animals now dead and will be required by countless others in the future ….. No plant or animal … can establish permanent right of possession to the materials which compose its physical body.

This quotation stresses that we are organisms like all other organisms and we have a time to die; we are designed to fail so that we are returned to earth to further the next generation of organisms that will come after us. Death is not a grand tragedy. On the contrary what is a grand tragedy is the way we are forcing ourselves to live at the end of our lives.
There are four ways to die.

  • Murder (the least likely since fewer than 300 Australians are convicted of murder each year)
  • Accidental (Around 5% of deaths)
  • Death by one’s own hand (1.5%)
  • Natural (Around 93% of deaths)

A ‘natural’ death according to Australian Bureau of Statistics is a death caused by one or more diseases. This is how our politicians expect us to die. Politicians and lawyers have made murder a criminal act. Laws protect us from accidental death to the greatest extent possible. Death by one’s own hand is not a crime but assistance is, therefore people wanting to shorten their lives are forced by law to hang (the most common method) gas or shoot themselves or use other slow and unreliable methods of achieving death such as sleeping pills. This is completely unnecessary. It is possible to access peaceful means of bringing about death within minutes with minimal help by others.

In 2010 the ABS records that 9003 people died of dementia and Alzheimer’s disease which was 6.3% of all deaths. It contributed to the deaths of 20,645 or 14.4% of deaths.  In addition to dying of dementia 4.9% of these people had malignant cancers, 12.1 % had Ischaemic heart disease, 9.7% had cerebrovascular diseases, 3.5 % had chronic lower respiratory diseases, 8.1% had diabetes, 11.7% had disease of the kidney & urinary system, 7.5% had heart failure, 12.1% had hypertensive diseases, 30.5% had influenza and pneumonia. So a natural death is not an easy way to die. There is no moral superiority in a natural death.

Dying with Dignity ACT believes that politicians should only be involved in death to the extent that they are supportive of our own individual wishes. We consider palliative care, the politicians preferred option for supporting a natural death, to be inadequate to meet the need of everyone. We believe that we should have the option of an elective death. An elective death we define as a voluntary decision to shorten one’s own life. As we have a range of options in giving birth; natural birth, epidural, elective section, water birth, we believe that we should have more options at death.

In the ACT we would like to see law reform in this area to include;

  • The repeal of sections 17 & 18 of The Crimes Act 1900 which provide for penalties for assisting suicide. We would like to see suicide renamed and called an elective death. We believe that the label ‘suicide’ is demeaning and reflects the general failure by society to understand that to end one’s life is a choice a person intentionally makes in the exercise of her/his own lawful right. The choice is not respected as a choice that is made like every other choice people make in their lives. ABS data indicates that the largest group of people shortening their lives are those over 60. The law forces people who want to shorten their lives to die violently. This is completely unnecessary.
  • The repeal of the Federal 1997 Euthanasia Laws Act and the sections of The Australian Capital Territory Self Government Act that prohibit the Assembly from making laws that allow assistance to die.
  • The encouragement of doctors to use fast acting medications in treating their dying patients if requested.
  • The establishment of a well-publicized Peaceful Death unit in or associated with a Canberra Hospital. The unit would have three sections; firstly it would have an education facility to prepare the community for death, from childhood – to assist people to let go of life, to understand what death is and to prepare themselves for death; secondly it would have the resources to provide the best financial, relationship and personal counselling available to clients as well as immediate access to police, the coroner and funeral services. Thirdly the unit would have a room with the facilities to assist those wanting an elective death to die comfortably. Access to lethal medications should be via non-human mechanisms.
  • Support for an elective death to any adult ACT citizen following provision of a reason for the wish for death and offers of help through counselling and police assistance as needed if people change their minds about dying. A cooling off period would be negotiated with the person wanting to die. The decision to die would be respected as would the decision to live.
  • On diagnosis of a terminal illness, terminally ill people may request a referral from their doctors to the Peaceful Death unit for an elective death at the time of their choice. Accessing the counselling services of the Peaceful Death Unit would be a matter for them.

 

How might an elective death be relevant to people with dementia?
I am going to tell you three stories that illustrate aspects of the elective death model. The first story comes from an article in The Weekend Australian Magazine this year.

An 86 year old woman who was severely demented and had the added complication of heart failure died after three complicated operations in rapid succession. Despite her advanced age and precarious health she was scheduled for surgery to repair a split duodenum. She was subjected to a three hour operation and then sent to intensive care. An elderly friend produced a signed and witnessed letter written by the patient long before she had been hospitalized stating that she didn’t want to be kept alive if she had to be hooked up to life support machines. Nevertheless she was operated on twice more and she died 6 days later.

An elective death would have enabled this woman to have chosen death early in her dementia without the interference of doctors. This story shows that doctors cannot be trusted to accept the wishes of a dying person; that they have their own agendas which have nothing to do with an acceptance of the inevitability of death. On the contrary they are trained to keep people alive despite their obviously having reached the inevitable end of life.

The second story is about a friend who had prepared herself for death. She was a member of Exit International and she attended all the workshops. She had bought a number of different devices, two helium bags and a bottle of unopened pills containing the ingredient sodium pentobarbital, which would, if she had taken sufficient and they were still active, have brought about her death. Since that time she has developed dementia and has become dependent on her family to look after her. She has delayed too long and now has lost the capacity to determine her death.
I believe she delayed because she only prepared herself with the mechanisms of death. She didn’t prepare herself psychologically. Death preparation is an essential feature of the elective death model. It’s hard to accept that we are going to die so we leave preparation too late if we prepare for it at all. My friend is as likely to die the way the woman in my first story died unless her family intervene. Given her strong stated commitment to dying with dignity let’s hope that is what happens.

My third story is about another friend of mine. He had finally got a job he wanted in Sydney where he had always wanted to live when he received the news that his mother had Alzheimer’s disease. She lived in Melbourne. He was her only child and the only person who could care for her. He looked at nursing homes and was not satisfied with them; he gave up his job, left Melbourne, became self-employed and went to care for her himself. She lived for 10 years after he began caring for her. Fortunately she was an amiable person and was happy to fit in with his arrangements of three meals a day at regular intervals. Other than that he washed her, dressed her, took her out and managed her life.
Not only did dementia affect this woman’s life but it affected a decade of my friend’s life. No-one wants their child to become their parent. I certainly don’t. The incidence of dementia is on the rise and many people will live for years with it. An elective death would provide those people who do not want to go into care with dementia with an option of a peaceful death, not involving doctors, at a time of their choosing. An elective death does not require people to be dying in order to access it.

Dying with Dignity ACT believes that politicians need to rethink their attitudes towards death and stop seeing it solely in terms of guilt and innocence. We as a community need to stop thinking about death as a ‘Grand Tragedy’ if it comes sooner than by our expiration by disease. Death is a transition from life to another state of existence. Death can be actively undertaken by a dying or ill person using peaceful means but it needs to be underpinned by psychological and educational support. That’s what an elective death undertaken within a peaceful death unit would provide.

Jeanne Arthur
President
Dying with Dignity ACT Inc
PO Box 55
Waramanga 2611
dwdact.org.au

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