MELBOURNE euthanasia advocate Dr Rodney Syme is being investigated by police after he allegedly gave a dying woman lethal drugs to end her life last year.
A police officer involved in the case told The Age Dr Syme had been interviewed because the woman's son believed Dr Syme had visited his mother leading up to her death and provided her with drugs to kill herself.
The 67-year-old woman had a degenerative neurological disease called multiple systems atrophy, which slowly paralyses people.
The police officer said a toxicology examination of the woman after her death found barbiturates - a class of drugs veterinarians commonly use to euthanase animals.
Dr Syme, who has previously admitted helping ''many'' people die peacefully without detailing precisely what he has done for them, said he met the woman in February last year, about six weeks before she died. He said she was struggling to walk and eat at that time, was incontinent and feared having to move out of her home to be cared for.
''She had a thorough understanding as to the likely course of her disease. She did not want to enter institutional care and did not want to progress to the natural end of her disease because of the suffering and loss of dignity that would involve,'' he said.
''I determined that she was rational and competent to make decisions. Her judgment was not affected by depression. I discussed her situation with her at length and provided her with palliative advice that gave her control over the end of her life.''
Dr Syme said he also advised the woman that if she wanted to end her life, she should talk to her family about it so they could understand her feelings and decision and choose to be with her at the end if they wanted to.
While it is illegal to assist suicide in Victoria, the police officer said Dr Syme had not been charged with an offence. But she said a brief of evidence had been sent to a coroner for further investigation.
Dr Syme said although police had interviewed him about eight other deaths in the past, this was the first time a relative of a deceased person had told police he prescribed lethal drugs. ''I'll be very interested to see what the conclusion of the coroner is in this matter,'' said Dr Syme, the vice-president of Dying with Dignity.
The investigation comes as South Australian police prepare to interview the founder of Exit International, Dr Philip Nitschke, over the death of a woman for whom he unsuccessfully tried to source barbiturates through the federal government's ''Special Access Scheme''.
Last year, Dr Nitschke applied to get the potentially lethal drug for the woman through the scheme because it is not legally available in Australia. While he waiting for the application to be processed, the woman died and the Therapeutic Goods Administration referred the matter to the Medical Board of Australia. The board is now investigating whether Dr Nitschke's application was ''contrary to good medical practice''.
letters in The Age in response to the above article:
A DYING woman chooses to shorten her life by several weeks to avoid horrible suffering (''Police euthanasia inquiry'', The Age, 21/2). She is legally free to do this in Victoria. If she goes to a hardware store and buys a length of rope and dies unpleasantly by her own hand, no one is investigated, especially not the store's sales assistant.
But if the woman chooses medication to fall asleep and die peacefully in her own bed, there are investigations and possible charges. The intent is the same, the outcome is identical, but Victorian law is inconsistent in its application, and it is inconsistent in favour of suffering. The dying person who makes the hardest decision about their own death has legal options - just not humane ones.
Janine Truter, The BasinWHENEVER the speed of social change outstrips the capacity of governments to adapt, we end up with laws that no longer reflect public opinion. Such is the case with the laws on voluntary termination of life. Experts agree that palliative care cannot ease all end-of-life suffering, and public opinion overwhelmingly demands changes to archaic laws, yet governments repeatedly hide.
It is time the government revisited its own moral values and its commitment to act upon the will of the electorate. More compassionate laws could release police to pursue genuine crimes rather than manufactured ones, while a better range of options would relieve suffering rather than exacerbate it.
Bob Thomas, Blackburn SouthAnd another letter in The Age:
JANINE Truter (Letters, 22/2) is spot on. It is true too that people who wish to end their suffering often have to resort to hanging themselves, as other means are unavailable and no one else can really be implicated or charged with assisting a suicide.
It is an unfortunate fact that the wish to end one's life rises sharply, for many, after the age of 65, if there is the onset of disabling and painful disease and/or the loss of friends and other loved ones. Legal euthanasia, painless and peaceful, is purely an option, not an obligation.
Dutch statistics have long shown that its availability may well strengthen a person's will to continue living in the face of such adversity, strengthened by the knowledge that the escape hatch, if needed, is not bolted.
Malcolm Chalmers, Newtown, NSWThe following article appeared in The Age newspaper:
Tony Nicklinson made news around the world this week over his application to a British Court to be assisted to die.
Nicklinson has sustained a brain-stem stroke, which completely paralyses him except for being able to breathe and blink his eyes, which is how he communicates. His cognition is intact, so he is fully aware of his situation. Besides his paralysis, he almost certainly has pain from his immobile joints and muscles, but his greater suffering is psychological and existential. His circumstance is called a ''locked-in state'' - an intact, thinking mind locked in an inert body with only primitive means of expression.
It is surely unnecessary to spell out that his greater suffering is psychological and existential, and that such suffering is too great for most people to bear.
Tony cannot swallow and is kept alive by tube feeding. If he could swallow, and had even very limited use of one arm, he could peacefully and legally end his life by ingesting appropriate prescription medicines with advice from his doctor, and his doctor would almost certainly not be prosecuted as he is providing effective palliation. But Tony cannot do this.
He could decide to stop drinking and eating and die of dehydration, quite legally, and this is actually not considered in law to be suicide. Or he could instruct his carers to cease tube feeding - he has a legal right to refuse treatment, and tube feeding is medical treatment. If he was concerned about the distress of dying of dehydration, he could request continuous deep sedation, whereby he would be placed in a deep coma until he died. His doctor can comply, but some might find it morally challenging, and might only provide very gradual and minimal sedation. If his doctor felt his suffering was indeed intolerable, that doctor could provide continuous deep sedation without fluid provision, even without a request to withdraw hydration.
In all of these circumstances, it could be argued that the doctor was assisting Tony to die at his request, and that would be euthanasia, and that would be illegal, and the doctor would be prosecuted. But euthanasia is not a defined legal term, and is not mentioned in the Crimes Act. The doctor would almost certainly not be prosecuted, because he could argue that his action was palliative and no jury would convict him.
I said almost certainly, and there's the rub - the lack of certainty makes many doctors flinch when asked to provide such palliation.
Thus Tony Nicklinson has the option of dehydrating himself to death, or of being placed in a deep coma without hydration until he dies. I have provided such treatment to a person suffering from severe late multiple sclerosis - she did not suffer significantly while dying, but it was a harrowing and macabre experience for her family, her carers and for me. I would not do it again.
It is surprising that a person can be allowed to choose to die by dehydration over seven to 14 days, with or without deep sedation, but cannot choose assistance from a doctor that allows them to die peacefully in a few minutes. I am not surprised that Tony wants something better in the way of a secure, dignified and serene death.
Many readers would be surprised to learn that it is humane doctors practising ethical medicine who have fashioned medical end-of-life practice, not our parliaments passing statute law. Intensivists withdrew ventilators in the 1960s despite fear of prosecution, and doctors withheld futile medical treatment, which ultimately led to the Medical Treatment Act in Victoria.
Doctors performed abortions to protect the life and health of women despite the risk of prosecution until Justice Menhennitt made his famous judicial decision in 1968. It took the Victorian Parliament another 40 years to pass statute law. Palliative care specialists introduced continuous deep sedation in the late 1980s to deal with palliative futility, despite the risk of prosecution. Today such potentially death-hastening treatments are not even reported to the coroner.
My research shows that only two doctors have been prosecuted in Australia in the past 50 years for allegedly intentionally causing a patient's death, despite empirical evidence that Victorian doctors do assist their patients to die. Both were acquitted. That owes much to a decision of Justice Devlin in Britain in 1957, when he essentially pronounced that if a doctor is acting to palliate his dying patient's symptoms, and he unintentionally hastens their death, then he is not acting unlawfully. This decision is thought to protect doctors in Australia, although it has never been tested in our courts.
The Victorian Medical Treatment Act says something similar - ''dying patients should receive maximal relief of pain and suffering''. Devlin's precedent was based on intention, which is paramount in criminal law. Medical practice is based on necessity - the necessity to relieve suffering, and sometimes end-of-life suffering will only end with the death of the patient. This is the doctor's, and the law's dilemma - to accommodate the humane practice of end-of-life medicine, which also recognises the patient's right to make autonomous decisions, and the strict interpretation of the law.
This dilemma is currently resolved by benign neglect - doctors are not prosecuted providing no one makes a complaint. The law is practised ''more in the breach than the observance''. The rule of law surely cannot be proud of such a situation. And the lack of clarity in the law adds to the suffering of patients when fearful and uncertain doctors refrain from providing maximum relief of pain and suffering because of fear of censure or prosecution.
Clandestine practice is arbitrary and potentially dangerous. It is high time our Parliament resolved this matter.
Dr Rodney Syme is vice-president of Dying with Dignity Victoria.Letters responding to the above article:
RODNEY Syme makes a compelling case about someone who has reached the point of intolerable suffering and the ''clandestine practice'' that is sometimes invoked, be it interpreted as euthanasia or not (''Suffering man's wish to end it highlights the dilemma of law'', Forum, 17/3).
Very often there is a long period of additional anxiety, almost equally intolerable, knowing that such a debilitating end is approaching with no clear guarantee of preferred humane treatment. This can lead to premature suicide.
Our parliamentary representatives, whatever their personal persuasions, should have no authority to sit in judgment of an individual's right to euthanasia. Instead, their effort should be invested in ensuring the necessary safeguards are in place such that we can all feel secure in the knowledge that our personal choices will be respected when our time comes.
Ken Reither, GisborneDESPITE 70 per cent of the population being in favour of voluntary euthanasia, the Premier describes the matter as ''divisive'' and won't even answer letters on the topic. My partner died in a ''reputable'' palliative care institution by dehydrating and starving himself to death. He lasted for 5½ weeks, unable to swallow and without deep sedation - far longer than the seven to 14 days referred to by Dr Syme.
Beverley McIntyre, CamberwellRODNEY Syme's account is a watershed in the debate. Discussion should now move on to devising mechanisms to enable physicians to legally accede to a patient's request for a peaceful death - if the physician judges it ''right'' according to the circumstances.
Here's a proposal. The federal government should fund a campaign to persuade every Australian to complete an advance care directive - a witnessed and signed document specifying the care people want when ill health irrevocably destroys their quality of life, including whether or not they want medically assisted dying; and also appointing a trusted person to hold medical power of attorney.
State/territory legislation should be amended or enacted to exempt from prosecution any physician who assisted a patient to die in accordance with an advance care directive. If a patient were no longer able to confirm or deny their wish, their medical attorney would be empowered to make the decision. Since such directives can be used also to specify that dying should not be assisted in any circumstances, there would be no danger of them being legally applied to the unwilling.
Anne Riddell, MelbourneLetters in the Sunday Age:
FARRAH Tomazin's article (''Death with dignity backed'', 22/4) on the proposal by Victoria's Law Reform Commission on instructional health care directives is flawed. Extensive research on the use of instructional directives, primarily in the US, has shown poor uptake with minimal impact on patient outcomes.
Recent literature on advance care planning strongly discourages programs that promote binding directives, supporting a more dynamic model of care planning that urges ongoing conversations and in-the-moment decision-making.
Ongoing research at the Peter MacCallum Cancer Centre suggests that patients have a poor understanding of advance care planning in its totality. Illness exposure, trusting relationships with healthcare providers, values and understanding the treatment options available are stated as crucial to decision-making.
Central to such planning should be the promotion of a workforce skilled in communicating complex and confronting areas of healthcare and the use of creative solutions to incorporate person-orientated care into the health system. Advance care planning in itself is not the means to a dignified death.
DR NATASHA MICHAEL, consultant in palliative medicine, Peter MacCallum Cancer CentreCONGRATULATIONS to Health Minister David Davis for supporting the Law Reform Commission's recommendation regarding legislating for ''instructional [advance] healthcare directives''.
This recommendation corrects a deficiency of the Medical Treatment Act (1988), which clearly endorsed patient autonomy, but which only allowed refusal of treatment for a current condition, not a future condition which could deprive a person of the ability to make decisions (stroke, brain injury, dementia). It also serves to remind us that the act stated that it was ''desirable for dying persons to receive maximal relief of pain and suffering''.
Dying with Dignity Victoria has been arguing for 15 years for this change. It is vital to extend the possibility of a dignified death to those who develop severe brain injury. A well-designed advance healthcare directive can be found on our website at Dying With Dignity Victoria
DR RODNEY SYME, vice-president, Dying With Dignity VictoriaTHE bold banner ''Death with dignity backed'' lifted my heart. I thought at last our government is going to tackle this thorny issue. However, I was not so comforted when I read the fine print. Our parliamentary representatives always seem to allow political sensitivity to dissuade when it comes to making a commitment regarding the choice for a dignified death. A general advance healthcare directive has been available from Dying with Dignity Victoria for years. I completed my agreement 10 years ago. I trust that my request will be respected and followed.
ANNA SEWARDS, MitchamI DID not ask to be born but after a long life and under certain circumstances I would like the choice of when and how I die. The proposed changes to existing laws would give me the right to decide now in case the serious ailments of old age make it impossible for me to communicate my wishes. I hope no MPs take it upon themselves to stand out against my wishes; it is, after all, my life.
RUTH BOSCHEN, BalwynFrom Care2:
The 64-year-old British Columbia woman who challenged laws against doctor-assisted suicide has been granted her wish to die with dignity. With Lou Gehrig’s disease gradually eroding her health, Gloria Taylor became one of five plaintiffs to challenge the 20-year-old decision that made it a criminal offense for doctors to ease their patients’ deaths.
B.C. Supreme Court Justice Lynn Smith struck down the prohibitions as unconstitutional. In her 395 page decision, she pointed out that suicide is not illegal in Canada. Therefore, criminalizing doctor-assisted suicide is a charter violation which denies full equality to disabled people. She also pointed out it could have the unintended effect of hastening death, pushing those with terminal illnesses to end their lives while they were still physically able to do so.
In suspending the laws against physician-assisted suicide, Justice Smith gave parliament a year to work out the details. However, because of Taylor’s deteriorating health, Smith granted an exemption that will allow her to choose the time of her death.
The B.C. Civil Liberties Union had argued on behalf of the plaintiffs. Grace Pastine, litigation director for BCCLU, said of the decision:
The B.C. Civil Liberties Association launched this lawsuit and hails the court’s ruling as a major step forward in Canada for the protection of human rights, the prevention of needless suffering and compassion at the end of life.
Will Johnston, chair of the Euthanasia Prevention Coalition of B.C., was disappointed by the decision. Lawyers for the coalition had presented arguments that making assisted suicide legal would open the doors for elder abuse.
Justice Smith built safeguards into the procedures Taylor must follow if she decides she wishes to die in the coming year. She will have to submit a written request. Her doctor will have to certify that she is near death and specify the drugs to be used in the assisted suicide. The application will be submitted to the B.C. Supreme Court, which will then provide a ruling to the physician.
The desire to be allowed to choose her own death would not have come easily to Taylor. Interviewed by CTV last November, Taylor said:
I must make this very clear: I do not want to die. I don’t want to die anymore than any one of you. I want to live every day that I can to the fullest, one day at a time. What I do not want is to die an agonizing, slow, difficult, unpleasant, undignified death.
Now she will be able to die with dignity.
Letter by Dr Rodney Syme in The Senior – Victoria, July 2012:
The theme of Palliative Care Week ( May 20-26) was Let’s chat about dying.
Dying With Dignity Victoria (DWDV) agrees, and we’ve been having that conversation with Victorians for more than 30 years.
The standard of palliative care in Australia is world-class, yet even peak body Palliative Care Australia acknowledges that it can’t always relieve intolerable suffering at the end of life.
A critical part of the conversation is “what then”?. That’s DWDV’s expertise.
Eighty-five per cent of Australians want voluntary euthanasia choice as a last resort.
Why isn’t it law? Let’s have the whole conversation, not just part of it.
Dr Rodney Syme,Article in the Sydney Morning Herald:
If your elderly parent or beloved spouse became so seriously ill she was unlikely to recover, where would you like her to spend her last weeks or days?
Most people want to die at home. But in Australia it is harder than it should be to achieve the good death - at home, pain free, and surrounded by loved ones.
About 70 per cent of deaths, according to some experts, occur in hospital. And while it should be possible to achieve a good death in hospital, that is not always the case.
The country's palliative care services, which provide care to people with life-limiting illnesses - whether at home or in hospital - are under funded, over stretched and patchily provided. A Senate inquiry is looking into their deficiencies.
What would it take to have a good death at home? Here is a list of the basics: at least two family members (usually daughters) able and willing to put in the hard yards of caring, visits twice a day if needed from a specialist nurse, a GP who will visit the home, a phone number to call for overnight and weekend medical emergencies, a hospital-quality bed to ease the strain on carers, and advice from an occupational therapist about equipment.
It's useful to have access to a social worker to help deal with unfinished family business, fear and grief and, if required, a volunteer helper to give carers a break.
Such Rolls-Royce palliative care exists in some parts of the country. And, where it does exist, it makes the good death a possibility.
Swathes of the country miss out. A study of big regional towns, including Dubbo, Tamworth, Albury and Bega, concluded it was harder for residents there to fulfil their wish to die at home because of limited palliative care services. This had led to "futile treatments being offered for longer". Not just regional Australia is ill-served. Live on the wrong side of the Cooks River, or just outside the catchment area of, say, St Vincent's Hospital or John Hunter Hospital, and palliative care is harder to get.
If you live in a nursing home, it is also unlikely you will get to die there in peace with proper pain relief and the attention of a palliative care nurse or doctor. The ambulance will be called.
In a death-denying society such as ours, in which the focus is on treatment and cure, palliative care gets the dregs at the bottom of the funding bucket. It is seen by some not as real medicine or real nursing, but as hand-holding.
In fact, it is a medical specialty that improves the quality of life for people with life-threatening illnesses. It deals with complex medical issues, especially around pain relief, to ensure people do not suffer and are conscious for as long as possible. It also tends to psychosocial and spiritual problems that people face when they know they are dying.
Yet many people with terminal illnesses shy away, seeing it as "giving in" and giving up hope. General practitioners may resile from referring patients out of reluctance to talk about death or alternatively try to manage the dying even though they don't make house visits.
The result is a curious lack of pressure for better resources and huge inequities in service delivery, a recurring theme of submissions to the Senate standing committee on community affairs.
A society with an ageing population cannot postpone discourse about death and dying indefinitely. By 2050, the proportion of the population over 65 will be 23 per cent, up from 13 per cent today. And more of us will be given time to anticipate and prepare for death - we are less likely today to be struck dead from a heart attack. Death will come with warning bells.
Because of historical funding arrangements, the main beneficiaries of palliative care have been people with cancer. People with motor neurone disease, lung diseases, renal failure and heart disease also need the service. The need is growing exponentially.
Even with the best support, most Australians could end up dying in hospital. Dying at home is not for every family. Cleaning, changing and comforting someone you love can be a privilege but it can also be exhausting and distasteful. For a child, watching a parent or grandparent die can be traumatising.
And very ill people can change their minds, seeking the re-assurance of hospital.
Not all hospitals, even in the metropolitan areas, have a palliative care doctor or specialist nurses. This is a situation that needs to be changed. Inexpertly handled, dying in hospital can be under-managed, leaving people in pain and discomfort, or over-managed, prematurely bringing on unconsciousness.
The incoming president of Palliative Care NSW, Carolyn Walsh, experienced her mother's dying from cancer as "an amazing journey". In Canberra she and her sister had the benefit of top-notch palliative care in the home with all the elements described earlier. But, when her mother became too weak and sick, she went to a hospice for the last 10 days. Again the care was specialised and first class: "We could be daughters, not nurses."
The way a loved one dies can leave people feeling angry, frustrated and guilty - or sad but feeling as if the journey was a privilege. More Australians need access to the kind of palliative care that helps them enjoy a loved one's last months of living and accept their dying.
Article from The Age:
RICHARD Wesley has amyotrophic lateral sclerosis, also known as Lou Gehrig's disease, which lays waste to muscles while leaving the mind intact.
He takes solace in knowing that he can decide exactly when, where and how he will die. Under Washington State's Death with Dignity Act (2009), his physician has given him a prescription for a lethal dose of barbiturates. He would prefer to die naturally, but if dying becomes protracted and difficult, he plans to take the drugs.
''It's like the definition of pornography,'' Dr Wesley, 67, said at his home in Seattle. ''I'll know it's time to go when I see it.''
Critics of the Washington State law feared that poor people would be pressured to kill themselves because they or their families could not afford end-of-life care. But the demographics of patients who have gotten the prescriptions are different to what was expected, according to data from 2011.
Dr Wesley is emblematic of those who have taken advantage of the law. They are mainly white, well educated and financially comfortable.
In both Washington and neighbouring Oregon, which passed a similar law in 1997, rigorous checks remain. Two physicians must confirm that a patient has six months or less to live and the request for the drugs must be made twice, 15 days apart, before they are handed out. They must be self-administered, which creates a special challenge for people with Dr Wesley's condition.
He said he would find a way to meet that requirement, perhaps by tipping a cup into his feeding tube.
Dr Steven Kirtland said he had little hesitation about agreeing to Dr Wesley's request.
''I've seen a lot of bad deaths,'' Dr Kirtland said. ''Part of our job as physicians is to help people have a good death, and, frankly, we need to do more of that.''
NEW YORK TIMESArticle from The Age:
Tony Nicklinson, 58, who had sought to end his ''dull, miserable, demeaning, undignified and intolerable'' life after he was left paralysed below the neck by a stroke seven years ago, wept uncontrollably after the judgment and said it meant his anguish would continue.
As he and his wife announced they would appeal, Mr Nicklinson, via a computer, said: ''I believe the legal team are prepared to go all the way, but it means yet another period of physical discomfort and mental anguish for me.''
In upsetting scenes following the judgment Mr Nicklinson's wife, Jane, stood by her husband at their home in Melksham as he shook with sobs. She described the judgment as one-sided and disappointing.
''All the points that we put forward have just really been ignored, it seems. You can see from Tony's reaction he's absolutely heartbroken. We always knew it was a big ask but we hoped the judges would see sense, but clearly they haven't.''
Another locked-in syndrome sufferer, who can only be named as Martin, had sought permission for volunteers to help him get to the Dignitas clinic in Switzerland. ''I wish to be able to exercise the freedom which everyone else would have - to decide how to end this constant tortuous situation,'' Martin said in a statement issued by his lawyers.
In a serious blow to pro-euthanasia campaigners in Britain, judges said that while the cases were deeply moving and deserved the most careful and sympathetic consideration, the questions they raised were too significant to be decided in a court, and could only be answered by Parliament.
Lord Justice Toulson said that allowing the two men to be helped to end their lives would have implications far beyond their cases, and a ruling, in Mr Nicklinson's case in particular, would have amounted to a major change in murder laws, which exceeded the powers of the courts.
''It is not for the court to decide whether the law about assisted dying should be changed and, if so, what safeguards should be put in place,'' he said.
Mr Nicklinson had sought assurance that it would not be unlawful for a doctor to assist him to die.
The GuardianLetters in The Age:
THE suggestion that the use of Washington state's dying with dignity law was ''different to what was expected'' is not correct (''US states warm to death with dignity'', The Age, 13/8). Neighbouring Oregon has had dying with dignity laws for 15 years and the results are exactly the same: that those who use the law are white, well off and educated. Similar results are found in other countries where such laws exist. What the article should have perhaps said was that those who opposed the law ignored all the evidence in their scare-mongering arguments against the legislation.
Janine Truter, The BasinIT WAS like a breath of fresh air to read of Oregon and Washington state's dying with dignity acts (The Age, 13/8). Australian politicians, please take note.
Peter Seligman, EssendonEuthanasia letters in The Age:
VICTORIAN citizens should be aware that their life could fundamentally change due to an accident or a stroke that results in extreme disability and continuous pain. This is not the only road to a life not worth living, but it is highlighted in the article ''Court ruling shatters death wish of two paralysed men'' (The Saturday Age, 18/8).
This case highlights the need for a humane and compassionate society to legislate for voluntary euthanasia. Some 80 per cent of Victorians support the introduction of such legislation. Surely in a democracy legislators would feel obliged to introduce it. Why is there such reluctance? What possible reasons could override the extreme suffering endured by people such as Tony Nicklinson? No one is being forced to take their own life, but it provides that choice for some. Humane end-of-life legislation is long overdue.
Ralph Blunden, HawthornSO ONCE again the great majority of citizens in Britain and Australia - and every other country where Tony Nicklinson's plight has been publicised - are left shaking their heads that such cruelty can be upheld by law.
While still balking at assisted dying for everyone who wants it, the British and Australian parliaments must be able to draft legislation to cater for people like Mr Nicklinson who are likely to live horribly for many years, are begging for release, yet are physically unable to end it themselves. How in God's name could that be termed the thin end of the wedge?
Anne Riddell, MelbourneArticle from the Guardian:
Locked-in syndrome sufferer died of pneumonia at home, his lawyers say, after verdict that left him 'totally devastated'
• Sarah Boseley, health editorTony Nicklinson, the locked-in syndrome sufferer who went to the high court to fight to be allowed to end his life with the help of a doctor, has died, just six days after losing the case, his lawyers said. He had been refusing food since the verdict, but contracted pneumonia and "went rapidly downhill last weekend", they said.
His lawyer, Saimo Chahal of Bindmans, said Nicklinson's wife, Jane, told her after the draft judgment was handed down on 12 August that "the fight seemed to go out of him".
"He said that he was heartbroken by the high court's decision that he could not end his life at a time of his choosing with the help of a doctor," Chahal said.
Nicklinson, 58, died at home at 10am on Wednesday, with his wife, his daughters Beth and Lauren, as well as his sister Ginny, at his side. All had supported his legal action to be helped to die.
Wiltshire police said Nicklinson's doctor had certified that his death was from natural causes and they were not involved.
Chahal visited Nicklinson two days after the high court decision, along with his barrister, Paul Bowen QC. Communicating via a computer, which he operated by eye movements, he told her: "So, we lost. In truth I am crestfallen, totally devastated and very frightened. I fear for the future and the misery it is bound to bring.
"I suppose it was wrong of me to invest so much hope and expectation into the judgment but I really believed in the veracity of the arguments and quite simply could not understand how anybody could disagree with the logic. I guess I forgot the emotional component."
Nicklinson's despair following last week's ruling was evident to all, as he broke into sobs that shook his paralysed body. He and his wife said they would appeal. "I believe the legal team are prepared to go all the way, but it means yet another period of physical discomfort and mental anguish for me," he said at the time.
In a statement issued through his lawyers, he added: "I am saddened that the law wants to condemn me to a life of increasing indignity and misery."
Although the judge acknowledged that his case and that of another paralysed man, known as Martin, were deeply moving, he said it was for parliament and not the courts to decide if the law should be changed.
Nicklinson was paralysed from the neck down after a stroke seven years ago. He wanted assurances from the court that anybody who helped him end his life would be free from prosecution.
Neither he nor Martin were physically able to end their lives themselves. Neither wanted or felt able to travel far from their homes and loved ones to Dignitas in Switzerland, where death can be legally administered through a lethal cocktail of drugs.
Chahal said that the legal action Nicklinson initiated must now come to an end, but that "the right to die with dignity, issues that Tony championed, will not be forgotten due to the light that Tony shone on them and … this important debate will continue due to Tony".
She called Nicklinson "an extraordinary man" who was "gutsy, determined and a fighter to the end". It had been a privilege to work with him, she said. "I only wish the outcome had been different during Tony's lifetime," she added.
A message posted from Nicklinson's Twitter account by his family on Wednesday said: "You may already know, my Dad died peacefully this morning of natural causes. He was 58.
Before he died, he asked us to tweet: 'Goodbye world, the time has come, I had some fun.' Thank you for your support over the years. We would appreciate some privacy at this difficult time. Love, Jane, Lauren and Beth."
Jane Nicklinson tweeted: "I have lost the love of my life but he suffers no more."
His daughter Beth added: "RIP @TonyNicklinson. Couldn't have asked for a better dad, so strong. You are now at peace, we will be fine. I love you xxx."
Article in The Age :
'Where is the quality of life?'
Suffering from a congenital bowel disease for the 35 years of his life, Jay Franklin has taken the decision to end his life.
AT FIRST glance, Jay Franklin looks like a healthy 35-year-old man. He has bright blue eyes that light up when he laughs and tattoos on his body that tell stories about his life. But this hearty appearance hides a painful truth. Mr Franklin is tired of being sick and wants to die.
Since birth, the Melbourne man has been suffering from a congenital bowel disease which has required nearly 100 operations. The countless incisions have left him without a large bowel and less than a quarter of the intestines he was born with.
Every day he struggles to eat without vomiting and when he does hold down food, it goes almost straight to a colostomy bag. Most distressingly, his illness has caused chronic pain in his abdomen that even the strongest drugs won't kill. As a result, he cannot work, study or move freely.
Jason Franklin 30 yrs old is suffering from a serious bowel disesease that he has had since birth. He has had over 100 operations and surgeons are now saying there is nothing more they can do. Jason is seeking euthanasia because he's in pain and feels his life is not worth living.
His mother Bertha ( in photograph ) supports his decision. photograph taken in Daylesford, Victoria.
No exit: Jay Franklin and his mother Bertha, who agrees that life for her son is just too hard. Photo: Simon O'Dwyer
About five years ago, Mr Franklin asked his doctors if he qualified for a multi-organ transplant to give him a second chance at life. Their answer was definitive.
''They said no … They said, 'In your situation, we don't feel we can do it','' he said breaking into tears. ''I thought OK, it's time to start putting things in place.''
According to pro-euthanasia group Exit International, Mr Franklin is one of a growing number of young people with chronic illnesses who are seeking help to die. Like Mr Franklin, they are not terminally ill, but feel they have the right to end their suffering in a peaceful and humane way. Many of them have the support of their families.
Another young man in this situation is David Bedford. Ten years ago, his career as a chef at a top Sydney restaurant was taking off when he crashed his car into a pole one night. He was not drunk or under the influence of drugs, just tired from working long hours. When he woke up in hospital, he was a quadriplegic.
Now 30, Mr Bedford says he is completely reliant on others and suffers phantom pain in his paralysed limbs and depression. His hands have curled into fists and bed sores limit how long he can sit in his wheelchair. ''I don't see the point of living every day. I'm existing for the point of existing,'' he said from a Brisbane nursing home this week.
In his quest for a peaceful death, Mr Bedford has approached Dignitas - an assisted-dying clinic in Switzerland that helps foreigners with ''unendurable disabilities'' end their lives. While he has some family support, he is advertising for an assistant to help manage his application, which includes psychological and medical assessments.
Euthanasia advocate Philip Nitschke is confident Mr Bedford's application will be granted. If it is, he says Mr Bedford will be the first Australian without a terminal illness to be approved by the Swiss clinic.
Without enough money to get to Switzerland, Mr Franklin says he is considering his options to die at home. He says his loved ones, including his mother Bertha, would like to be with him when he dies, but he fears they could be charged with assisting suicide if they are.
This aspect of Australian law angers him. He says the criminal charge of assisting suicide has forced him to plan a death in an ''underground'' fashion.
''We don't have any say about coming into this world, so I feel like we should have the right to a peaceful, comfortable and humane death without doing something drastic,'' he said.
While a spokeswoman for Right to Life Australia, Dr Katrina Haller, said both men needed better medical attention rather than directions for killing themselves, Bertha Franklin, 63, disagrees. She says although her son's wishes are heartbreaking, she has watched his quality of life deteriorate for many years. She says she understands his views and believes it would be worse to protest.
''I feel honoured in a way that he's had the courage to confide in me and has not tried to hide this,'' she said.
''Of course it will be a dreadful thing but it's too hard for him now, it's just too hard.''
Letter in The Age :
IF JAY Franklin and David Bedford (''Jay is sick of being sick but, not being terminally ill, doesn't have a way out'', The Saturday Age, 6/10) were being held and tortured by some foreign power there would be mass outrage and clamorous demands for the Australian government to obtain their release.
Our Dying With Dignity groups focus on the needs of the terminally ill because that is the most obvious situation in which some people seek medical assistance to die when they want to. But let's recognise also the plight of these two young men, and possibly others, whose quality of life is irredeemably ruined and who in their own estimation are ''existing for the point of existing''.
Oh, for a federal government with the courage to instigate an inquiry by doctors and lawmakers into how death can be made a more acceptable and better-managed process, delivering the outcomes each of us may desire, whatever our beliefs and attitudes.
Anne Riddell, MelbourneFrom The Age newspaper:
People want responsible law reform but politicians block the path.
Death With Dignity Book: deathwithdignitybook.com
Winner Of Kirkus Star Review. Buy Now!
A VOLUNTARY euthanasia debate is being hosted by the Wheeler Centre at Melbourne Town Hall on Wednesday evening. Under discussion will be the sometimes ghastly indignities that some of the dying are forced to endure, against their specific and considered wishes, on the journey towards their certain death.
Take former journalist Steve Guest, for example. Mr Guest had oesophageal cancer, which prevented him from swallowing. Unable to enjoy any of his favourite meals and beverages, fed by stomach tube and on painkillers that he likened to pouring concrete in his head as the cancer spread, he argued passionately in the media for law reform to permit a legal choice of a peaceful and dignified doctor-assisted death.
A compassionate doctor, Dr Rodney Syme, consulted with Mr Guest and provided him with advice and medication that gave Mr Guest control over the end of his life. Dr Syme has stated so on the public record. Before his death in 2005, Mr Guest recorded a message of very profound thanks to Dr Syme for lifting a huge weight off his shoulders through the mere availability of choice, and bringing dignity back into the last phase of his life.
Six years on, the Victorian Parliament is still mute on the subject, having rejected both a bill and a motion for public consultation, both brought by Greens MLC Colleen Hartland. More than 80 per cent of Australians, including Victorians, want responsible law reform to allow choice according to the individual's own circumstances and conscience.
Premier Ted Baillieu has publicly voiced his personal support for voluntary euthanasia law reform, yet the government and the Parliament do nothing but obstruct the will of the people.
Only a handful of our political representatives have the courage to actively embrace the issue. This is partly because in the debate ''sweepstakes'', misinformation and fear campaigns are common from vocal opponents of assisted-dying law reform. Here are three examples.
First, Els Borst, the Dutch health minister who introduced their 2002 assisted-dying law, remains proud of and satisfied with that reform. I interviewed Dr Borst in the Netherlands in June and she again confirmed this view. Yet opponents, on the basis of flimsy and refuted ''evidence'' continue to claim that she regrets it.
Second, the rate of non-voluntary euthanasia (a doctor-hastened death without a current explicit patient request) in the Netherlands has not risen as predicted by opponents but dropped to the same level as it is in Britain. The UK is recognised as the global gold standard for palliative care practice and has no assisted-dying law. Despite this scientific evidence, the website of the Catholic Archdiocese of Melbourne still states that 1000 doctor-assisted deaths occur in the Netherlands, while the Sydney Archdiocese website states that it's 500. Who's right? Both of them. What neither admits is that the 1000 figure is before, and 500 is after euthanasia law reform. And it has since dropped even further.
Nor do either of them mention that the rate of doctor-assisted in Australia, when studied here, was five times the Dutch rate. Assisted-dying law reform doesn't degrade medical practice, it improves practice by establishing visible standards.
Third, opponents repeatedly assert a slippery slope for supposedly ''vulnerable'' people, ignoring the published research that shows predicted ''vulnerable'' groups use assisted-dying law far less, while it is used far more by white, educated folks with health insurance. Why don't opponents shout that ''white, educated folks with health insurance are vulnerable!''? Perhaps they know how those folks will respond.
Refusing rational, dying Australians the right to choose what for them is a dignified death is a failed policy. As Catholic philosopher Dr Jacques Pohier points out, it is not a choice between living and dying, but between different ways of dying. Such has been the case for Steve Guest and many others.
Attorney-General Robert Clark, like Rob Hulls before him, has refused to refer the issue to the Victorian Law Reform Commission for public consultation. But Liberal MP Philip Davis, in speaking against Hartland's motion for that referral, specifically advocated referral to a parliamentary committee instead.
It's time to stop dancing around and actually make the referral.
Neil Francis is chairman and CEO of YourLastRight.com and president of the World Federation of Right to Die Societies.
--------------------------------------------------------Letter in The Age 7 November 2012
MY GRANDMOTHER recently passed after suffering for almost two decades with Alzheimer's disease. I was infuriated when I read Shakira Hussein's case against euthanasia (Comment & Debate, 5/11). It is admirable that she is able to assert her strength in the face of multiple sclerosis, but her situation is not universal. The pain that drives people to seek euthanasia often is not exclusively physical or restricted to the person with the illness.
Shakira argued that a life should not be deemed of less value due to illness. My grandmother died paralysed, unable to eat or speak (only whimper) and with an eroded, inoperative brain. There is no question that her life was devalued at this point. When she was diagnosed, Gran asked my mum to smother her with a pillow if she progressed to the point that she eventually did. At each visit, we were crippled with guilt and tortured by her suffering. Neither her death nor illness were preventable, but her suffering and humiliation could have been avoided.
Claudia Nugent, West BrunswickEuthanasia letter in The Age 9 November 2012
MY HUSBAND died of brain cancer a year ago. He was a clever man and wanted to die with all his faculties and his family by his bedside. We went through chemotherapy and radiotherapy, but he died as a four-month-old baby, completely dependent on the nurses in a palliative care centre, over three weeks. He couldn't talk, walk, or in any way convey his thoughts; then he refused to eat. It was humiliating for me and his friends to stand by and do nothing. He had terminal brain cancer at 76 years - no hope. Why doesn't the law allow an injection? For me, it was excruciating, every day, to witness death so slowly approaching. A mangy dog or horse would be given relief but not a human being.
June Plate, BellbraeReports from the Sydney Morning Herald and The Age:
Greens senator Richard Di Natale is set to announce laws that would overturn a ban on the territories legalising euthanasia, Richard Willingham reports.
EUTHANASIA will be thrust on to the national agenda again with the Greens set to introduce laws that would overturn a ban on the territories legalising the controversial practice.
Greens senator Richard Di Natale, a doctor, will today announce that the party is drafting legislation that would wind back a 1997 Kevin Andrews bill that banned the Northern Territory, ACT and Norfolk Island from allowing euthanasia.
Mr Andrews, now shadow minister for families, introduced the legislation in 1996 after the Northern Territory's approval of euthanasia. Then prime minister John Howard allowed a conscience vote.
Asked last year, Prime Minister Julia Gillard said Labor MPs should be granted a conscience vote on euthanasia.
Senator Di Natale said there was clear public support for euthanasia and that territories were a good place to test social reforms because they were more open-minded and had a wider range of voices. ''This is an issue that deserves a conscience vote,'' Senator Di Natale said.
''It's a hugely popular reform and it shows how out of touch the old parties are with many of the important social issues.''
Former Greens leader Bob Brown tried twice to repeal Mr Andrews' law but his bills were never put to a vote.
The Victorian senator has raised the issue with the Greens' sole ACT Assembly representative, Shane Rattenbury, who was positive about raising the issue in the ACT. Mr Rattenbury holds the balance of power in the ACT Parliament and in exchange for supporting the Labor government has been given the Ministries of Territory and Municipal Services, Corrections and Housing.
Senator Di Natale says there needs to be a focus on how to better manage end-of-life care. ''Most doctors at some point will have faced the prospect of providing medication to ease pain, knowing that it will hasten a person's death,'' he said.
''In many instances it's a process that is welcomed by patients and families and it's important to provide every possible choice to the individual.''
Senator Di Natale said that in countries where euthanasia was legal, including the Netherlands, Belgium and some American states, the law provided comfort to patients and doctors.
Last November Parliament passed laws removing the power of a federal minister to override laws made by the ACT and NT but Parliament can still do so.
That bill, introduced by Dr Brown, kicked off a caucus battle with some of Labor's right wing opposed to the bill over fears it would lead to same-sex marriage and euthanasia.
Today in Sydney, the Dying with Dignity group is hosting a forum featuring commentator Phillip Adams, Professor Ken Hillman, Professor of Intensive Care at the University of New South Wales, economist Richard Denniss and writer Gillian Mears.
----------------------
DESPITE suffering from multiple sclerosis for more than a third of her life, award-winning author Gillian Mears has only recently undergone a ''drastic change'' of heart in favour of voluntary euthanasia.
Ms Mears, 48, won the Prime Minister's Literary Award for fiction this year for her novel Foal's Bread. She told Fairfax Media she did not want to end up like two characters in that book: ''They had no choice but to take their own lives, and the way they do it is extreme and drastic.''
The author is mostly confined to a wheelchair because of her MS, which she has described as ''the slow road to death''.
Although diagnosed when she was 30, Ms Mears was opposed to voluntary euthanasia until recently.
''As little as five years ago, I really did believe that without safeguards, voluntary euthanasia could be open to the terrible abuse of the elderly and the vulnerable in our society. I felt that quite strongly.''
But now, she wonders why it is illegal: ''Look, if I've got a suffering animal, I will not hesitate to have them euthanised.''
Ms Mears is writing an illustrated fable about life and death for all ages, The Cat with the Coloured Tail, which she hopes will be like a feline Little Prince (the story by Antoine de Saint Exupery).
Ms Mears will appear before the NSW Parliamentary Forum on the Rights of the Terminally Ill Bill on Monday in favour of legalising voluntary euthanasia.
Euthanasia letters in The Age 21 NOVEMBER 2012:
PETER Doherty's compelling interview frequently refers to dementia - ''this terrible disease''. He says ''I think a lot of people would much prefer to say, 'I'm not going to sit around with Alzheimer's disease''', implying that he fully understands that most of us exist through our minds and our ability to think and communicate. When that is gone, there is not much point in just ''being there''.
I have created an advance directive that will prevent treatment that merely prolongs my life if I become no longer competent because of dementia. But frankly, I do not want to become incompetent from dementia, and would happily end my own life before that point, if only I could legally obtain the means to do that in a safe, dignified and serene way. I would very happily forgo five years of care with dementia, save myself and my family from this pain, and coincidentally render a financial benefit to my community.
Dr Rodney Syme, ToorakIT DOESN'T surprise me that Gillian Mears has changed her mind on voluntary euthanasia (''Author changes her mind on right to die'', The Age, 19/11). The whole point is that it is voluntary and it is a personal choice. Why, in 2012, do I not have the legal right to something my animals have a right to - death with dignity and without prolonged and unnecessary suffering, not only for those wanting to end it but for their loved ones?
Ann Bull, HawthornWEBSTER'S Dictionary says democracy is that form of government in which power rests with the people. In Victoria, it seems, that power rests with our elected representatives who impose their personal beliefs and prejudices over the desires of those whom they represent. Roughly 80 per cent of the electorate are said to be in favour of some form of legislation to end the lives of people who are enduring intolerable pain and suffering close to death. Despite this we seem unable to even raise a discussion on this topic with those people who are elected to represent our views.
I periodically receive letters from my local member, Attorney-General Robert Clark, suggesting he welcomes input from constituents. However, in relation to euthanasia, which he opposes, a recent request by me to discuss his views was denied, as the minister could not spare the time.
The refusal by Parliament to even consider this admittedly difficult subject is based, I understand, on religious beliefs. Thank God the majority are not vegetarians or we would have to fight for our right to eat meat.
Lindsay McArthur, Box Hill NorthFrom The Age newspaper:
![](philip.jpg")
EUTHANASIA campaigner Dr Philip Nitschke says he has been abandoned by his medical indemnity insurer as he fights a new medical board investigation that threatens his registration.
Anti euthanasia group, Hope, has complained about Dr Nitschke’s promotion and sale of nitrogen to members of Exit International, saying it has "overstepped the bounds of reasonable behaviour" and makes him an unfit person to hold a medical license.
Last year, Dr Nitschke set up a company to sell nitrogen to members of his group who are interested in buying the gas to commit suicide. The company’s website does not mention Exit International or Dr Nitschke.
In a complaint to the Australian Health Practitioner Regulation Authority, executive director of Hope, Paul Russell, said although Dr Nitschke’s group had advised people of various methods to commit suicide in the past, selling nitrogen to people created "a far more direct relationship between Exit/Nitschke and the suicide candidate".
While Dr Nitschke says he works predominantly as a human rights activist and scientist when he works for Exit International, Mr Russell has called for AHPRA to consider his workshops medical consultations.
"Were he to provide the kind of information he promotes in his workshops to a patient in his consulting rooms I doubt that anyone would disagree that such behaviour is inappropriate," Mr Russell said in his complaint.
In a letter to Dr Nitschke, AHPRA said it was investigating the matter. Under the Health Practitioner Regulation National Law, it has the power to act against a practitioner who is not considered "a fit and proper person" to practice. It can suspend or cancel a doctor’s registration.
In a written response to AHPRA, Dr Nitschke said although assisting suicide was a crime, he was teaching people about end of life decision making within the bounds of the law.
"Suicide in Australia is not a crime. It is a course chosen by people, quite apart from any activity of mine, sometimes in ways that are thoroughly gruesome and worryingly distressing for all involved. One of my several concerns has been to ensure as far as possible that if people are going to choose the option of suicide they do so in a manner that is the least traumatic for all concerned," he wrote.
Dr Nitschke said AHPRA was being asked to arbitrate a dispute about different political and social views on a contentious subject when there was no suggestion he was lacking appropriate knowledge, skills or commitment to the health of patients.
Furthermore, he said his medical indemnity insurer, The Medical Insurance Group, would not fund his defence in the case because the investigation did not arise from his practice as a medical practitioner.
"The whole question about where their responsibility stops and starts will be of great interest to doctors," he said.
Dr Nitschke said he was getting pro bono legal support, but wanted to know how AHPRA could investigate such a matter when his insurer did not believe the complaint was related to his medical practice. Managing Director of The Medical Insurance Group Mandy Anderson said Dr Nitschke’s policy did not cover his activities with Exit International.
President of the Australian Medical Association Dr Steve Hambleton said although he did not know all the facts of the case, doctors should be able to hold views on matters like voluntary euthanasia "provided they do not impact adversely on patients".
"Everyone’s got a right to express a view," he said, adding that doctors should check the fine print of their insurance.
A spokeswoman for the Medical Board of Australia would not comment on the case but said public safety was the board’s top priority.
For help or information call Suicide Helpline Victoria on 1300 651 251 or Lifeline on 131 114, or visit beyondblue.org.au
jmedew@theage.com.auEuthanasia letter in response to above report – in The Age 28 NOVEMBER 2012
THE ironically named anti-euthanasia group Hope is out to get Philip Nitschke over his non-medical business (''Nitschke abandoned'', The Age, 27/11). Given that hanging is currently the most common way for the terminally ill with intolerable suffering to take their own lives, I would expect Hope to be urgently pressing for the deregistration of hardware store owners who sell rope. But this might excite the 80 per cent-plus of the public that supports dying with dignity, and that's the last thing this tiny group wants.
Janine Truter, The BasinFrom The Age newspaper:
MORE than 80 per cent of Australians support voluntary euthanasia for terminally ill patients, and almost a quarter say they would change their parliamentary vote if their preferred candidate opposed euthanasia reform, according to polling for an advocacy group.
A poll of more than 2500 people, commissioned by YourLastRight.
com, which advocates for voluntary euthanasia, found 82.5 per cent of respondents said a doctor should be allowed to provide a lethal dose of drugs on request to a hopelessly ill patient who was experiencing unrelievable suffering and had no chance of recovery. Almost a quarter - 23 per cent - said they would change their vote if their usual preferred candidate opposed voluntary euthanasia.
The issue was of greatest importance to Greens voters, 32 per cent of whom said they would drop their support for a candidate who opposed euthanasia, compared with 24 per cent of Labor voters and 15 per cent of Coalition voters.
Letters in The Age:
I AM interested in how Michael Maloney defines the ''real business of government'' (Letters, 18/12). Could it be something like a National Disability Insurance Scheme? Or perhaps putting a price on carbon? A national broadband network maybe, or even a Murray Darling Basin Plan? In which case, it seems to me that someone, somewhere, is getting on with the ''real business of government''.
Patrick O'Brien, South YarraMORE than 80 per cent of Australians support voluntary euthanasia for the terminally ill (''Resounding 'yes' for terminally ill'', The Age, 17/12). That 23 per cent said ''they would change their vote if their usual preferred candidate opposed voluntary euthanasia'' should alert politicians to take this debate more seriously, especially in the face of an ever-ageing population. The politicians are there to create laws for the population and we have spoken.
Belinda Ramsay, CamberwellFrom The Age newspaper:
Entering a high-care nursing home is like walking into a vision of hell. Broken bodies huddle in wheelchairs or lie, immobile, in stark rooms. Eyes stare unseeingly, any sense of awareness lost within shattered minds. Voices shout random words.
Visitors sit with loved ones, trying to communicate. Hoping for some sign of recognition. Wondering if this helpless dependence lies in their own future.
Those few patients capable of movement pace endlessly, like wild animals in a cage. At mealtimes, trembling hands attempt to convey food between plate and mouth, failing more often than not. Overworked staff feed those who cannot cope, trying to do the impossible and be everywhere at once. Patience is an essential job requirement.
My mother, completely unable to look after herself, spent the last few weeks of her life in a high-care nursing home. It took two staff and a hoist just to get her frail body out of bed. It was a nightmare, both for her and anyone who visited, the terrible culmination of a two-year period in which the relentless progress of dementia transformed her into a stranger. Our memory of that time inevitably casts a dark shadow over the 88 years that had gone before.
Don't get me wrong. My mother received the best of care, and the staff did what they could. But all they were doing was prolonging abject misery.
Although, in a way she was fortunate, and so were we. For many, the decline lasts much longer. Individuals and their families suffer through long years of mental and physical deterioration, of humiliation, embarrassment, anger, frustration, despair and, finally, desperation.
Thoughts of ongoing care are overwhelmed by the desire to see the suffering end, to find some way of bringing relief. But that is not possible within the law.
Supreme Court judge Betty King recently sentenced Heinz Karl Klinkermann, 73, to an 18-month community corrections order for trying to kill himself and his terminally ill wife, who was suffering dementia and Parkinson's disease and was no longer able to communicate. Justice King's decision was, given the possible penalty, lenient, but the case highlights the failure of our laws to deal properly with an issue that is going to loom ever larger in our ageing population.
As Justice King said in her judgment: ''To keep an animal alive in the precarious health circumstances of some of those in palliative care may well lead to charges of cruelty, but the law protects human life and places it into a special category. It is protected at all cost.''
It should not be. At the moment, doctors can help people prepare an Advanced Healthcare Directive but, although it is a move in the right direction, it is only one step on a much longer road towards finding a legal way to show mercy in extreme situations.
Of course, there will always be those who insist that nature be allowed to take its course, no matter how long it may take or how unpleasant the consequences might be. Fine. If that's what they wish for themselves, then so be it. But I don't want that inflexibility dictating my future.
My mother should not have been forced to suffer as she did. She hated every ghastly, degrading moment. She should have had a choice, and not one that carried the stigma currently associated with the word ''euthanasia''. If the situation arises, I want legal access to an informed choice, one seen as a reasonable, honourable course of action.
The thought of facing even one day of what my mother went through, and what I saw others enduring, fills me with horror. Justice King's use of the word ''cruelty'' is significant. What we do to so many of our fellow human beings at the end of their lives is simply cruel. There is no other word for it.
The law will change, because it must. There will come a point when, despite the dithering of timid politicians, common sense and compassion will prevail. But in the meantime, how many others will be condemned to a wretched existence that makes a mockery of the word ''living''?
It is the law's harshest life sentence.
David Campbell is a freelance writer.Letters in The Age newspaper:
David Campbell could not have described a high-care nursing home any better - ''like walking into a vision of hell'' (Comment & Debate, 30/3). My mother spent more than 10 years in ''hell'' and my sister and I, and our families, visited her. We all suffered ''long years of mental and physical deterioration, embarrassment, anger, frustration, despair and, finally, desperation''.
As has been reported previously, about 80 per cent of the population is sympathetic to the legalisation of voluntary euthanasia. David Campbell cites the ''dithering of timid politicians''. I am more concerned with the political power that religion holds over them. I have nothing against anyone's religious belief but I am distressed when the religious want to decide how I must die. No one wants the right to kill others or encourage people to die prematurely. Advocates of voluntary euthanasia are concerned that they will suffer as my mother and David Campbell's mother, and our families, suffered.
Belinda Ramsay, CamberwellResidential aged care is typically presented as smiling residents enjoying afternoon teas in the dining room and walks in the garden. To obtain a complete picture of life in high care, we need to look at the management of acute health episodes and basic health care.
There are four prominent issues in the stories I hear regularly from relatives. One is a slowness or failure to act on injuries later diagnosed as fractures. Second, a slowness or failure to act on infections. Third, lengthy delays in requests for toileting with its attendant embarrassment and increased risk of infection. Fourth, insufficient assistance with meals.
Currently Federal Parliament has before it five bills relating to aged care reform. Not one concerns the quality of healthcare in nursing homes.
Carol Williams, Elder Care Watch, BlackburnDavid Campbell's account of what his mother was forced to go through at the end of her life was very moving. Changing the law takes forever, but surely the time has come for common sense to take over and compassion to be the motivation. The question for politicians is simple. They just need to ask themselves: Would I like that to happen to me?
John Millard, East DoncasterI heartily support David Campbell when he says that prolonging life can be an act of cruelty and that it can be a long time of suffering. For a friend of mine, it was six years. Anyone who has seen it first hand could surely not feel any other way than dread, lest it should happen to them.
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