Life at any price is a choice many of us would not want,  the purpose of maintaining this website is about creating awareness of the needs for others who may feel differently about their end of life choices.   Not to ram my own POV down others people's throats, but to create a tolerance and understanding of how people arrive at their life's destination, seeing the glass half empty or half full depending on the individual's perception.

As of March 2006, on the bottom of this page,  you can read an email (never acknowledged) I wrote to a Sydney Newspaper which gives on overview of "my say".  The important political Resolution dealing with Advance Directives/Living Wills and which highlights the necessary for end of life choices,  sits on the desk of the current Victorian Minister for Health, Bronwyn Pike.  The wording of the Resolution is on the bottom of the first opening page as you enter the website.

At present, Victorian law does not give us the right to seek a medical solution to end suffering when life ceases to have quality. To enable a medically assisted death to be legalized, it is necessary that our State politicians pass a Bill in Parliament.

The manner of dying is an issue created by advances in medical practice and technology which have enabled the life of the body to be prolonged long after a practical or meaningful quality of life ceases to exist.

I have raised the matter of possible Legislative change for the acceptance of Advanced Directives making them legally binding, without meaningful response, in addition to a Medically Assisted Death. 

I’ve written four times (written, printed, enveloped & stamped real letters! as distinct from convenient (and free emails) at personal expense, to all 88 Members of both Houses of State Parliament, plus 12 Victorian Senators,  perhaps,  40 of whom have responded. Most politicians said they would consider my concerns if and when such a Bill was presented in Parliament for debate. Rarely have any acknowledged the 76% of Victorians they represent who want VE with restrictions.

Mostly I talk about the legality of choice for the individual by the legalising of their Advance Directive or Living Will.  Currently they are "respected" but not to the extent that they are taken seriously by legislative change to ensure adherence to a person's wishes for their end of life choices.  Doctors still control the individual's right to choose the method of their final journey from life itself.   Doctors are trained to "save lives", not to consider its costs!

Death has been given a mysticism it really shouldn't have in society.   Once women died in childbirth at home, children died of infectious diseases, old people living within the family, died of illness or old age.  Death happened in the home, when the living finished. Now death happens in the sterile environment of a hospital without the reality of daily life going on around us.   I am old enough to remember when my grand parents were laid out on the dining room table, blinds drawn half mast and people visited them and paid their respects in hushed voices.   We, as children, kissed the dead bodies of our dead.  There was no fear of dying or the dead. 

We need to connect back to our roots and face the normality of death.   While not suggesting laying out the dead on the best dining room table is a way to go sixty years on, I believe we need a more normal attitude to the life altering event, that is, the art of dying.

To make a difference we must ensure our voice is heard. Be noisy! 

I have been described as self centred and "not listening", and I can understand the frustrations of those who know and love me, warts and all - But I am, who I am, and my life's experiences have made me into the "fighter" known for stubbornness in the face of adversity.   I apologise for my personality shortcomings which possibly grate on other's nerves I'm sure, but I couldn't achieve what I am attempting if I didn't have some arrogance about my success working without and within a group of like minded people.  

People have remarked that I "stand alone" on Parliament Steps and ask why don't I gather more around me.   I don't see it as a social event for idle chit chat, but rather a necessity to inform and clarify their understanding in many cases.  I've remarked elsewhere that dying is a lonely business.  It is possible to be made more joyful, if family could "enjoy" the sharing of company whilst still reasonably competent, but under the current laws we sit beside the silent bed watching the dying person drugged into unconsciousness to prevent their pain overwhelming them.   On the other hand a medical assisted death would enable the person to be fully functionally and able to share valuable but limited time with their loved ones.   Rather like Nancy did, all those years ago......

Endeavour to gain the support of your local Member of Parliament, and encourage them to initiate and support debate in Parliament. Write to them, ring them, make an appointment and go prepared. It is important to present a coherent point of view and to stay calm.

However, it is very hard for me to remain calm in the face of such inactivity on the part of the lawmakers “acting” on behalf of the rest of the community, when there is overwhelming evidence that Medically Assisted Dying is appropriate for some medical conditions. I don’t ask that they consider for themselves personally but rather others, who are not able to help themselves. It is about the choice.

As asked in the Tibetan Book of Living and Dying:

“What is compassion? It is not simply a sense of sympathy or caring for the person suffering, not simply a warmth of the heart of the person before you, or a sharp clarity of recognition of the needs and pain, it is also a sustained and practical determination to do whatever is possible and necessary to help alleviate their suffering. Compassion is not true compassion unless it is active.”

Again from the Tibetan Book of Living and Dying, among the many words of insightfulness acknowledging our pain is this little gem addressing the medical profession specifically.

“One of the things I hope for from this book is that doctors all over the world will take extremely seriously the need to allow the dying person to die in silence and serenity. I want to appeal to the goodwill of the medical profession, and hope to inspire it to find ways to make the very difficult transition of death as easy, painless and peaceful as possible. Peaceful death is really an essential human right, more essential perhaps even than the right to vote or the right to justice; it is a right on which all religious traditions tell us, a great deal depends for the well being and spiritual future of the dying person.

There is no greater gift of charity you can give than helping a person to die well.”

A very powerful message there, and is a repeated plea from countless others who don’t have a voice. 

My questions to you, readers of “your choices in dying”, are?

Is it possible to replace the address from doctors and make it to “politicians”? Why is it so hard for politicians to act with genuine compassion and charity to others, knowing they can create the legal safeguards against the abuse of legislation? Can we encourage them to think outside the voting square of the powerful lobby groups and have only compassion and charity as their priority? Can we do this together?

In fairness, there are compassionate politicians but they are overwhelmed by their colleagues demands to “toe party lines”, as in one major party’s organizational culture. Surely there are politicians with the courage to remain an individual, truly representing their constituent’s needs. The other major party has sympathy for the constituents but bowed to the power of the lobby groups, “pro life at any cost” rather than “pro life”. What of “Pro Choice”? Ex Premier Kennett and I disagreed on most political issues, however medically assisted dying was the one major point on which we agreed. Now he’s working with beyondblue (dealing with depression) which indicates that he is aware that sometimes life can be unbearably painful. Appropriate legislation, with safeguards, for those who have no hope is sorely needed.  Depression can also be experienced quite justifiably,  by people with terminal and chronic illnesses, without hope.

There are very real and tangible reasons for depression, not all “are just in the mind” many are in the body! It is very depressing to see your body being destroyed by disease and knowing there is no escape. Those who deny us the right to die with dignity are not faced with the realities of diseases such as cancer, advanced rheumatoid arthritis, muscular dystrophy or MS! Some of these diseases are not necessarily terminal in themselves; one just may wish they were. Their affects are being unable to control your bowels and bladder, unable to feed or dress yourself, too ill to brush your teeth or comb your hair, too ill to read, watch TV, talk to friends, too ill to do anything but hope for release. 
Valid reasons for depression? Yes! Avoidable?, yes!, by legislation!

Security in knowing that a peaceful death is a right would release many of us to really live for as long as we want to, whether a day, a year or ten. Because it is a personal choice, that feeling of confinement in a sick and useless body would no long apply. 

But, I feel many in the medical, political and related services know this already and can enjoy the feeling of gratification having such power over another human being. I feel it is almost a form of dictatorship which they enjoy to the extent they will not loosen the reigns of power for humanitarian compassion or charity. The, “ultimate” power and control, although, as with politicians, many just don’t want to be associated with “‘pro choice”. Doctors, Nurses and above all the lawmakers, the politicians remember “there but for the Grace of God, go I” Please consider! 

I visited a website, somewhere, that scoffs at the efforts of those trying to reword the word “euthanasia” in such a manner as to make it more palatable to the general public. Originally, I was dismayed by the gentleman’s sarcasm but then I realized he is the one with the problem. Put simply the word means “good death”. We’ve tried to make it “mercy” “compassionate” “dignified” “choice”. Do any of us really have a problem with describing the manner in which we would choose to die as anything other these descriptive words?

So many people have commented that it is not the dying that concerns them, (lets face it) , it is the one thing in life, that everyone will do including politicians and their loved ones; it is the manner of their death, and that which remains in the memories of those you leave behind.

The purpose of this site operated by just one woman with a passion for ensuring a good death,  I know I am not alone with this passion.

Please take whatever action you feel is necessary with your State and Federal Politicians to ensure that at least in our children’s lifetime, choice and dignity in dying becomes a right of all individuals. That is, to choose without the stress generated by secrecy in order to achieve serenity in dying.

When love and law clash, no one wins.

Jail takes many forms when faced with moral dilemma. Love & freedom, or just freedom? Faced with the anguish of illness, the law also creates anguish. Doctors and nurses who witness this could support the cause for change in a tangible way by adding their weight to the debate, Please.

Of course, if you don’t share for my desire for a good death, do nothing and let nature take its course, for you, but, please allow me the right to choose! Be passive, stand aside and let me and others pass through the gate!

The needs of the relatives of the ill person have also to be considered. They cannot be taken lightly, but should still, to my way of thinking be put to second place on our list of priorities. When very ill, the most important person is you (and your pain). Your friends and loved ones will sympathize and be of great comfort to you, but unless they’ve walked in your shoes, they can’t know your pain. Explain to them gently if need be, that your need for peace and serenity in dying is paramount. I believe, in letting you go, they demonstrate true love. No one has ever said “loving someone to death” was easy.

I found it extremely exhausting to be told constantly “to think positive”. sometimes silence is golden. Just a hug! But for all your sakes, do the necessary communicating, before it’s needed, about where you want to be when the action starts in earnest. Home is looking really good to me. Home, a quiet and serene sanctuary, leaves decision making in your hands.

We must accept that dying follows living and is inevitable for all us.

Sitting on a park bench  with a woman I’d never met before listening to her story of “one day at a time” had a profound affect on me. She had her “insurance” stashed. I understood the importance of her need for autonomy. She wanted a quiet "proud" death.  The woman had a brain tumor and had been fully aware of her prognosis.  Nothing was to be left to chance.

Doctors are afraid of litigation arising out making decisions based on patient needs.  After all, the doctor doesn't have a vested interest in the welfare of any specific patient.   I've been told, health staff don't like a death on their watch.

And again, the medical staff sometimes ignore the Medical Treatment Act 1988. This is a genuine concern.

One day, I went to visit an elderly man who’d had a number of strokes. I could push his cumbersome wheelchair into the sunshine on occasion and we could share the smell of genuine fresh air, away from the nursing home. He so loves the sunshine and fresh air. His wife was telling me how my friend had refused medication from the nursing staff. Witnessing this, the wife demanded that the medication be given, to make him take that, which prolongs his meaningless life for him. This man who had worked outdoors all his life, and for whom I hold great affection, is wasting away slowly with a mind still functioning, yet never to walk, read, garden or attend his own needs again. Of course, his legal right was to refuse medication but with the pressure of family, his rights were being denied in the name of what, - “love?”

I came away even more inspired to encourage legislative change to protect the vulnerable from the well meaning selfish, who would encourage life regardless of the pain and anguish experienced by the ill, who suffer an ignoble end, steeped in decay. Real loving means that you can release them, regardless of your pain, to witness their death knowing their anguish has ceased. If you are religious, you’ll know your loved one has gone to a peaceful, serene other world. Hold that thought! 

A Medical Enduring Power of Attorney or Living Will is essential for every person who wants the right to choose their own path to death. Perhaps a close family member is not the best person emotionally to represent your interests. Your appointed agent needs to be very strong mentally and physically capable of making important decisions in your best interests. An Agent can override the relative who may even find relief in having the decision taken out of their hands.

May I recommend you to the site of the Dying with Dignity Victoria, Contact Phone (03) 9877 7677, website www.dwdvictoria.org.au email: dwdv@dwdvictoria.org.au

In a very image driven world where most of us all “far too busy”, “couldn’t say that” “couldn’t do that” “what will the relatives say” “what will my friends think”…….Just do it!.....Be proactive, refer to the Media Link, and make legislative change a very real possibility…..

In an article issued for Suicide Prevention Week (6 – 10 November 2000) Wesley Mission states:

(Perhaps depression may clarify the word, Psychache.)

Suicide as Psychache

After working in this field for over 50 years Shneidman says:

An email I sent off as a result of a survey question which never did get a response

I was responding to a question asked by a Sun Morning Herald Journalist, with this article. I knew she meant walking the dog, dancing or doing crosswords, but I wanted the question taken outside the comfort zone of the majority of people!.. (Note as of May 2007 and I neither a member of a gym or the ALP)

From: On Behalf Of Your Choice In Dying
Sent: Tuesday, March 21, 2006 10:09 AM
To: dkaufman@smh.com.au
Subject: [right_to_die] Beneficial to my Health


Yes, I do something I believe to be beneficial to my health in that I am actively campaigning for Choice and Dignity in Dying. I do this on many fronts, I write letters to politicians, probably in excess of 400 over four years. I operate a website named www.yourchoiceindying.com in which I actively encourage others to lobby for Legislative change to the Medical Treatment Act 1988 to ensure legality of a person's Living Will in Victoria. And I walk the streets promoting the concept of voluntary euthanasia. I have stood on the steps of both Flinders Street and Parliament House, a solitary figure against the introduction of the Criminal Code Amendment (Suicide Related Material Offences) Act 2005. I promote Voluntary Euthanasia with stickers on three sides of my car. I wear a T-Shirt promoting my website, four, made to order.

I have stormed against the ALP in Victoria and Federally for not supporting what in excess of 70% of Victorians have said they'll support, that is Choice and Dignity in Dying under stringent guidelines. Mostly I am ignored.

Over three years I have attempted to have a Resolution brought to the State Conference through my local branch meetings and the ALP Health Committee which eventually was adopted in 2005 that would have seen Advance Directives honored in the Justice System. Unfortunately it was amended at the December 2005 State Conference affecting only those within six months of impending death. That Resolution now rests on the Desk of the Victorian Health Minister Bronwyn Pike and correspondence from myself regarding its progress remain unanswered. In an election year it is unpalatable subject for politicians yet 70% of Victorians want action.

It is actually detrimental to one's health to know that no one on either side of politics, with exception the Democrats, (who currently hold no power) even listen to our voices.

An elderly person contemplating suicide and discussing it with her best friend can be fined $110, 000 for holding a telephone conversation (refer Criminal Code Amendment (Suicide Related Material Offences) Act 2005. Very few people in the Media addressed the issues arising out of the law which came into effect January 6, 2006. In Sydney circles it has been established that Radio Talkbacks Jocks haven't even heard of the Bill which passed through Parliament with only the Democrats fighting for freedom of speech on our behalf. Knowing that someone cared what happens to the frail elderly who can't defend their own position because of illness, age and the incapacity to cope with modern technology would be very beneficial to their health.

No one has been convicted in Victoria for failure to abide by the existing rules of the Medical Treatment Act of 1988 which specifically states a person's rights to refuse medical treatment with the exception of palliative care eg pain relief, food and water. (I suppose because of the traumatic experience of dying leaves one person dead and their relatives too grieving to care after the event!) I have witnessed a relative overriding the patient's wishes to receive no medicine and the nurse concurred with the relative. The patient was too frail to argue. My letter regarding this matter also, to three Ministers remained ignored.

I see my activism as beneficial to my health because although change will not come in my lifetime, I hope I pave the way for others in the future. I believe I represent a concept for many frail elderly people who have neither the health, the energy, or the tenacity to face politicians who refuse to face up to their responsibilities of a State Health level, for fear of upsetting a very strong Right to Life Campaign. Whose views impinge on those who do not share their belief system.

I am a member of Dying with Dignity Victoria, Exit International and a committed Humanist (except I agree with Capital Punishment within limits). I receive no funding. I see what I do as very important. I believe the security of knowing that there is a "peaceful pill" available would make many terminally and chronically ill people more serene in facing their last months of life.

It would be extremely beneficial to my health to receive one very good reason why an Advance Directive or Living Will could not be a document bound by Statutory Law in Victoria. I have a tattoo on my chest which specifically states: Do Not Resuscitate. Thank You. VE Member. The nurse in the Emergency Department of a large hospital asked me what "VE Member" meant?. I thought she was joking, but she really had no idea. And this is in an Emergency Ward of a large Hospital! The doctor while smiling told me I wasn't going to die of my ailment (which I knew already) and was surprised that I knew of the Medical Treatment Act of 1988.

Keeping patients ignorant, and not respecting their POV, is not beneficial to their health.

I suppose my response was not as you expected but just to demonstrate I am a reasonably balanced 63 year old, I attend gym some three times a week and dip the odd toe into the pool pretending to swim. Unfortunately I haven't yet learnt how to breathe while actually swimming so it is one thing or the other, but not yet together!!!



Mary Walsh
www.yourchoiceindying.com

                                                                            ____________

Someone's else Say:

Decisions that should be mine!

I am 86 years old and my husband died five years ago, aged 80.

Although he was seriously ill for his last year of life, his initial collapse, caused by an aneurism in his brain, was quite sudden.
During his illness he had to be fed through a tube, was paralysed from the waist down and had a drastically reduced ability to communicate, with infrequent glimpses of reality.

After discharge from hospital he had to go to a nursing home as he was too incapacitated to be cared for at home.
1 know from the many conversations we had throughout our long marriage that he would have hated the loss of dignity, the inability to control his own life and the dependency he had to endure.

Yet when he contracted an infection and I and my adult children asked that no antibiotics be given the hospital refused this request.
I believe that my husband's last few months were demeaning and pointless, particularly as he had led a full life. I have a genuine fear of being forced to endure a similar situation when I am dying,

I believe that the place where I die and the people who care for me should be decided by the circumstances of my illness (for example, it was not possible for my husband to be cared for at home because of his incapacity). However, wherever and whenever possible the decision should be mine or, if I am unable to make it, those of my family, who know my wishes.

If the dying person is to have the maximum choice, there must be more services provided, such as on-call home nursing and effective symptom-relief which can be monitored by the person themselves.  I am fortunate to be active and independent at present and would want the choice of staying at home for as long as I can if I become terminally ill, although I do not want to be a burden on my family.

But I must emphasis that I see no point in a protracted dying process.  At 86 years of age I have seen other loved ones and friends die a protracted death and, as a consequence, believe strongly in law reform to permit voluntary euthanansia, and assisted suicide under strict guidelines.

Personally, I would go further and say I believe older people (perhaps 80 and over) should have access to a painless and dignified death even though they are not terminally ill.

I do not want money, mine or the government's, wasted on keeping me alive when death is inevitable. Neither do I want my family to remember me as a helpless shell of myself, possibly with dementia.
I have done all I can legally, in accordance with the Victorian Medical Treatment Act, and have followed the advice of the Voluntary Euthanasia Society of Victoria about ensuring that my family know all my wishes regarding medical treatment. But I know many people are not aware of their legal options and I believe that the Victorian government should publicise the Medical Treatment Act widely and provide help for people to make an effective Enduring Power of Attorney (Medical Treatment) at any stage of life.

After all, we are encouraged to make a will regarding our possessions/ surely it is far more important to make sure our wishes about our health are carried out?

But ensuring my legal rights under this Act does not bring me peace of mind. It will only be useful if I contract an illness whereby refusing treatment will hasten death. What good will it do me if I have a stroke that disables but does not kill me, particularly if some zealous health professional decides I must be given antibiotics if I get an infection, as was done with my husband?

As you can see, I feel very, very strongly about my dying.

We live in a democracy where others cannot force their views on me in many important areas yet representatives of churches and governments still impose their beliefs on me when it comes to matters of how, when and where I die.

I do not ask for legal changes that will force them to act against their will, so why can't I have the same rights?

Name and address supplied.
Extracts from a letter received by Dr Sarah Russell in response to her article on a research project on dying with dignity and a request for thoughts on the topic. (Printed in the VESV Newsletter November 2004)

PS I know the lady concerned personally and have her permission to share this article with you.   I spoke with her just now in October 2006 and asked if she would say anything differently.   No, was the firm reply and now aged 88, she added one more thing....I want the peaceful pill to be provided for those like me who are just tired of living.  Age and fragility have denied her any meaningful point in going on living even as she acknowledges the loving contribution of her family.

And another's "Someone Else's" Say

My support for VE has nothing to do with happiness in being in control  of my own health decisions. I would consider that the psychologist may  not have watched some one close to them SUFFER a long drawn out painful  death.... I also think of all the members that have gone through VE in the 23 years that I have been a member who were as ACTIVE as they could be, but still did not have death with dignity.....

Only now with access to the internet can individual members know first hand what is happening world wide......and how many reports etc have been written in the past..... we have handed out pamphlets, signed petitions, read books,( I have a shelf full of my own, read articles, etc etc, because I did sit by my parents and a friend who were suffering), and I decided to try to help change the law) Now I am reaching that stage in my life where I do not want to be in the situation they were in.

Until this touches a person personally, these words words words do not even register in their grey matter. Hopefully the Hollywood version of Terry Schiavo will draw movie goers, and THEN people may begin to think they may be would not like that kind of existence. People talk about it, feel uncomfortable, but still do not join in a movement for change, because it
is not going to happen to them, it is called entertainment. JR

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