All About Multiple Sclerosis

More MS news articles for January 2004

Death Watch: The Dilemma of the Off Switch

The person you love is lying in a hospital bed, unconscious, attached to a row of machines that keep their heart pumping and their lungs breathing. It is time to let them go. But do you have you the strength of will - or the backing of legislation?

January 28, 2004
Julie-Anne Davies

Noeline Ling and her 26-year-old son James are part the way through the loneliest and most treacherous journey imaginable. Neither knows when it will end. But the final destination is not in doubt. James is severely brain damaged and paralysed from the neck down, the result of an accidental heroin overdose when he was 19.

His body clock keeps the same hours as yours and mine. He wakes for breakfast, a nutritional supplement poured into the feeding tube, which was surgically inserted into his stomach seven years ago. Lunch and dinner are taken the same way. This, combined with 24-hour, high-level nursing care in a Melbourne hospital, keeps James alive.

And so the days pass. But time has stood still for James Ling. The CD collection next to his bed is the same music he was listening to in the year of his overdose. Metallica, Triple J's hot 100 from 1997, Paul Kelly's Post album. His hair is still long and tied back in a ponytail. I introduce myself and he studies my face with eyes that are indisputably alive. He laughs and snorts when his mother teases him. It seems that James has some comprehension. It is unbearably sad.

The doctors and nurses who care for James believe he has no understanding of his situation, an attitude which, given his circumstances, could be some consolation to his family. But just as Noeline has never accepted false hope, she refuses to be comforted by thoughts that her youngest child is oblivious to his plight: "There is someone in there, I absolutely believe that." And she does, otherwise she would have let her boy die a long time ago. But what if James is alive because he has no choice?

There are days, says Noeline, when she visits James in hospital and finds his blinds drawn, his television turned off, his CD player silent. "The staff thinks there's no one home. So why turn on the light?"

AT THE beginning of the 21st century, advances in medical technology have made it possible to maintain life where it was previously impossible. But those advances have pushed us into new medical, moral and ethical territory. With the use of sophisticated life-support systems, is life being sustained or is death being deferred?

It is an issue many liken to the abortion debate of the 1960s and one which the medical profession, the church, hospitals and nursing homes, as well as the broader community, is being forced to confront. All agree that the right of dying is the hot ethical debate of the age and will only intensify as the pro-rights baby boomer generation increasingly finds itself facing death.

There are few bodily functions that modern medicine cannot replicate but when to withhold or withdraw that support becomes not only a clinical decision but also a judgment about when prolonging life is simply futile.

The fine but clear line by which doctors are able to practise in this murky realm is that removing life support is an omission, not an action, thus allowing nature to take its course. One of the newer life-support treatments, which is causing considerable unease, is the provision of artificial food and hydration via a feeding tube. It is being used increasingly in dementia patients in nursing homes, in intensive care units in hospitals and for people being cared for at home. The idea of taking away something as basic to human survival as food and water is abhorrent to some, notably the Catholic Church, but others argue it is no different from a respirator, antibiotics or a dialysis machine.

According to federal Department of Health figures, there are 1048 patients receiving funding for artificial tube feeding in Australia but these statistics do not include hospital or home patients. In the United States, there are more than 60,000 nursing home patients with advanced dementia being kept alive with feeding tubes, according to research published last year in The Journal of the American Medical Association. "Feeding tube use has no demonstrable health benefits in this population, and may be associated with increased risks and discomfort," it reported.

The issue gained prominence recently with the case of 40-year-old brain-damaged woman Terri Schiavo, who has been in a persistent vegetative state for 14 years. The legal ­battle between her husband, who has sought to disconnect the feeding tube keeping her alive, and her parents, who want to take care of her, reached crisis point last October after Schiavo's feeding tube was disconnected for six days on her husband's orders. But in an unprecedented action, Florida Governor Jeb Bush President George W. Bush's brother intervened, ordering the tube be reinserted. Governor Bush's actions have challenged the terms of the state's constitution, which guarantees Florida citizens the right to refuse medical treatment and which keeps separate the legal powers of the executive and judicial branch. The case is still before the US courts. In Australia, similar cases are beginning to be heard by state and ­territory guardianship boards that are being asked to rule on whether feeding tubes can be removed from patients unable to express their own wishes.

But for Noeline Ling there is no choice. From the moment ambulance paramedics resuscitated James after he was found unconscious, medicine's most sophisticated technology has been deployed to keep him breathing. That, and Noeline insists, James' own will to live: "I believe James is alive because he wants to be; he has been through too much for me to think otherwise. In intensive care the focus was on keeping him alive regardless of the result. I wanted him off life support, I was prepared to let him go if he had to depend on a machine to breathe for him. But the day they were going to perform the tests to determine whether they could turn it off, he began to breathe on his own. He was in a coma for six months and I had no expectation he would come out of it but he did."

She has been given the option twice of letting James die. Once, when he was in a nursing home and his weight had plummeted to 42kg and pressure wounds ravaged his body, a nurse took Noeline aside and told her it was time for James to die and suggested that his medication be stopped. "I believed her but then minutes later as I put my head on his chest and wept and said to James, 'Someone told me you were very sick', he laughed and I thought, it is not James' time yet."

On another occasion, a surgeon who was preparing to operate on her son to repair a perforated bladder told Noeline she could simply refuse permission for the surgery. Again, Noeline said no: "It was 3am, I'd been at work all day and I was sitting there on my own, everyone else in the world seemed to have gone home and I was trying to decide and I was so scared. Scared that if I said OK, just leave him, then one day a coroner would read on a file that James' mother had said 'let him die' and I'd end up in jail." But beyond this fear is something far more basic. She is a mother and James is her son. "It is just too hard ... that's what it always is, too hard."

So Noeline has drawn her lines in the sand. She has given instructions that James is not to be resuscitated if he has a seizure. She won't allow him to be readmitted to an intensive care unit. If he gets a chest infection, which he has many times in the past, depending on how she is reading James' wishes at the time, she may or may not authorise anti­biotics. "While I believe he is communicating, I will ask them to treat him with medication because I am positive I will know when James has had enough; we've been through too much for me not to know."

As for the feeding tube, Noeline has never considered having it removed and, she says, she would never request it unless she was certain James wanted to die. "For me it doesn't seem like aggressive medical treatment ... it is just a necessity."

FEW HAVE heard of Fred van der Heyden but many will have followed his story, or perhaps travelled the same desperate route. He is the husband of a woman known only to the nation as BWV, who suffered from a rare and progressive form of dementia.

For the last three years of her life, she lay permanently curled in the foetal position, her arms and legs twisted and lifeless in a Melbourne nursing home, unable to communicate and with no cognitive capacity. I met her once when Fred took me to visit. Her world had shrunk in every way until all that remained were the nursing rituals that kept her heart beating. The only obvious sign of life aside from her breathing were her eyes, which at times seemed to follow you around her small room. It was, said her husband, no life at all. She had been kept alive for eight years by an artificial feeding tube inserted in her stomach. Three times a day nurses poured a nutritional supplement into the tube and, although by the time I met her she weighed less than 50kg, it was enough to keep her going. By this time, Fred had begun his fight to have the tube removed and throughout our visit, he gently stroked his wife's cheek, his head bent close, whispering: "Soon, it will all be over soon."

There was no legal precedent in Australia for cases such as BWV's and under Victorian law it was unclear whether the tube feeding was regarded as medical treatment or palliative care. If it was palliative, it could not be withdrawn, but if it were regarded as medical care, then it could be refused. The court ruled in favour of the van der Heydens and two weeks after judgment in a move the Catholic Church branded as barbaric but one the family maintains was an "act of love" the tube was disconnected and Fred's wife of 46 years died. Mrs van der Heyden was oblivious to the furore that preceded her death; she would have been astonished and appalled had she known that her husband's determination to fulfil a pledge made together years earlier had transformed a private family tragedy into a very public national debate about the moral and legal rights of the dying.

Fred and his wife made a pact before she became ill that they would not allow their mate to linger, to be kept alive by artificial means if either became terminally sick. What neither could have foreseen were the implications of that promise. Fred, who until now has not spoken publicly about his wife's death, has no doubt that his efforts, which ultimately hastened her death, were morally justified. "There is a time for coming and a time for going. My wife's time had come, her quality of life was gone but everyone was frightened to take that final step. I understand it was a grey area legally but for me there was no grey. I'd watched her suffer for 15 years and the time came when I said enough."

But his wife's doctor and the nursing home where she lived refused, claiming they could face prosecution. The Victorian Public Advocate, Julian Gardiner, was appointed BWV's guardian and he decided that a definitive court ruling was needed to not only resolve this case but to provide legal guidance in similar cases in the future.

Six months on, Gardiner is convinced he made the correct decision in referring the case to the Supreme Court and, he says, predictions by the Catholic Church that the lives of hundreds of nursing home patients were now on the line as a result of the ruling have proved to be alarmist and wrong.

"People are not at risk," Gardiner says. Since the decision, he has dealt with three more similar cases where he had to investigate and decide whether life-support treatment should continue. "In one, the family of an elderly woman had decided, in line with the beliefs of the woman, to have a feeding tube removed. Their decision was met with considerable resistance from nursing staff at the facility where the woman lived. It took a lot of work by my office to get the staff to accept the importance of self-determination and the rights this woman had expressed not to have her life prolonged by medical treatment."

In contrast, Gardiner tells of another patient, a young man who suffered serious brain damage in an accident and whose family had asked his doctors to turn off his life support. The doctors, unhappy with this decision because they believed the man had a chance of some recovery, refused to comply. "It was an unusual situation," Gardiner says, "because in this case the family, tragically, had been through a similar situation before and so knew what this young man's beliefs were. They were convinced he would not want to be left alive because he had told them so but we were not convinced about his prognosis and refused their request to withdraw treatment."

In the event, the man did make significant improvement, enough for him to communicate his own wishes; he wanted treatment to continue. The two cases, Gardiner says, illustrate perfectly that the system does work but also exposes just how much is at stake when organisations such as the Office of the Public Advocate are called upon to intervene in life-and-death matters.

Although some claim the BWV decision has nothing to do with euthanasia, others, notably the Catholic Church, argue that the line in the sand has shifted as a result.

The desperation of the dying is something that can't be discounted. Fear of pain but also the indignity of being trapped in a body which no longer functions but where the brain is as active as ever, can transform the most law-abiding and conservative people into fugitives. Take the case of "Peter", a man at the top of his profession, a husband and father in his early 50s who was delivered a death sentence by his doctor a year ago. His life now has become dominated by his quest to find the perfect and banned drugs which will ensure he dies when and how he chooses. He was keen to be interviewed for this story but his wife, who has agreed to help him die, delivered a cruel but understandable ultimatum soon after the interview began. "If you go public with your story, I will not help you when the time comes," she said. Her anguish was unbearable; her partner in life is dying and one day she will have to administer the drugs which will kill him. An act of love, she believes, but she does not want to endure a court case and possible jail term after he has gone.

It is not an unreasonable fear. In Australia a number of people are facing jail, accused of helping another person to die, including:

FEAR of dying, not fear of death, is the issue for many. At one end of the spectrum is the radical euthanasia movement, led by Philip Nitschke, whose growing band of supporters are predominantly elderly, often middle-class and, most significantly, prepared to go out with a bang to further promote their cause. Civil disobedience has become the weapon of choice for EXIT Australia, a move being met with growing alarm by institutions such as the Catholic Church, the Australian Medical Association and more conservative state-based voluntary euthanasia societies.

Depending on where you live in Australia, your rights at the end of your life vary significantly. In some states Victoria, South Australia and Queensland laws have been passed allowing people to make their treatment wishes known through advance directives: living wills which set out what type of medical treatment they do and do not want at the end of their life, as well as appoint a person to ensure those wishes are respected. But in Western Australia, NSW and Tasmania, no such legislative safeguards exist. Every Australian does have a common law right to refuse treatment and can sue if their wishes are ignored. The reality is that almost no one does. All states do have substitute decision laws in the form of guardianship but the appointment is made by a guardianship board or tribunal, not by the individual.

Far more complex, though, is when the patient is no longer competent to make decisions regarding their end-of-life care and others are left to fathom what is in the best interests of the dying person. For example, in Victoria, a person can sign a refusal-to-treat certificate only when they become ill, thereby excluding automatically those who suffer brain damage through an accident or the sudden onset of an illness.

Colleen Cartwright, who lectures on health ethics at the University of Queensland, says one of the hardest concepts to teach aspiring doctors is what is and what isn't euthanasia. "At the point of incompetence, it doesn't become euthanasia because a doctor agrees or decides to withdraw treatment. A competent person can request that and it will be respected. It is unforgivable to leave someone in pain because of a fear you may hasten their death."

But medical paternalism, doctors' fear of litigation and their own ignorance of the law can and does lead to prolonged life-support treatment despite family objections. A Monash University-Latrobe University study of Victorian GPs published in the Journal of Law and Medicine in 2001 found 44% of almost 1000 doctors surveyed had little or no understanding of the legal effects of that state's Medical Treatment Act. Only 7% of doctors believed they had much, or a complete, understanding of the act. More than half of those surveyed said they had not discussed an enduring medical power of attorney with patients.

Dr Bill Silvester is not surprised by these results but he is concerned. An intensive-care specialist at Melbourne's Austin and Repatriation Medical Centre, he is heading a program that trains health practitioners about current laws and how to talk to patients about end-of-life decisions and encourage them to document their wishes. It is a project that has attracted national attention because ­nothing like it has been attempted before in an Australian hospital. Implicit in the Austin's approach is the admission that its own practices concerning the care of people at the end of their lives is not good enough. He says there has been quite a few cases at the Austin where staff knew intuitively that what they were doing was not in the patient's best interests. Like many other public hospitals, the Austin had a policy on providing best quality care at the end of life and supporting patients' rights to determine their own care. But, Silvester says, when the hospital's patient care ethics committee reviewed the policy in 2001, they found that it was not being followed.

"We held a grand round on why the policy had failed and it was one of the best attended we've ever had," Silvester says. "We had nurses standing up saying: 'Why are we giving undignified cardiac massage to elderly patients who we know are going to die anyway?' These circumstances are very traumatic for both the family and the medical and nursing staff. We know it's wrong, they know it's wrong, yet it was happening all the time."

Due to the success of the Austin's pilot program on advance-care planning, called "Respecting Patient Choices", it has received funding from the federal and Victorian governments to extend the program to other hospitals and nursing homes in Victoria and interstate. Typical requests from patients include: "If I deteriorate, I do not want resuscitation or to go to intensive care, I want to be kept comfortable and dry", "I would like to have the tracheotomy out now and to stop ventilation" and "I want no further transfusions". Silvester says programs such as this will dispel patient's fears of dying and reduce the calls for lawful euthanasia.

Nitschke, of course, disagrees. He is just back from the US, where he has been seeking funds for his latest venture: the development of a "peaceful biscuit". "The idea is it will be something that can be made at home using two commonly obtained chemicals," Nitschke says. The biscuit will complement his carbon monoxide machine, which delivers a fatal dose of poison to the user. As ever, Nitschke is pushing the envelope. He now advocates extending euthanasia to those who are simply tired of life regardless of whether they are terminally ill, a stance that has further distanced him from his more conservative euthanasia proponents who believe that change must come through legislation and be confined to the terminally ill.

"It would be an enormous reassurance to the elderly folk of Australia if they knew they had a pill or biscuit at home which they could take when the time was right," he says. "The paradox is that it also means people will live longer because they don't have to fear losing the capacity to take more radical action."

Most of the money EXIT Australia raises comes from donations from its 3000 members. Membership is $100 and Nitschke says last year EXIT received five donations of more than $10,000. "People see it as an insurance policy, a guarantee if you like." Nitschke says. He also receives donations from the US-based Hemlock Society through its euthanasia research organisation, Ergo. "They donate to me because they see I'm one of the few people in the world working on new methods to help people die in a dignified way."

He rejects the argument palliative care physicians mount that if good, accessible palliative care were available to all, there would be no need for euthanasia: "It's rubbish. People's wish to die is more complex than the symptoms of their illness. It is also about loss of dignity, the diminution of their sense of self by illness ... these are important factors, too, and pain relief does not alleviate that deeper pain."

A recent, controversial addition to this debate is the issue of terminal sedation and its relationship to euthanasia. Terminal sedation refers to the use of sedative drugs to induce unconsciousness in terminally ill patients in order to relieve suffering when other attempts at relief have failed. Death is the outcome but instead of one large dose of morphine, which would induce death in an hour, several doses over a period of days are given.

Dr Rodney Syme, Victorian Euthanasia Society president, describes the practice as a surreptitious drift into death: a method he admits to using on terminally ill patients but one he argues is hypocritical. "It is done in the best interests of the doctor, not the patient. But it is the way it has to happen because no doctor wants to be accused of hastening death. Instead, the doctor must contend he is doing it to relieve suffering, even if everyone including the patient knows otherwise."

Pitching any discussion about dying in these terms is anathema to palliative care physicians, who contend people such as Nitschke and Syme are misrepresenting what good palliative care is about. They say that the euthanasia movement is exploiting people's unfounded fears fears that reside with the healthy, not the dying. Further, they argue, scientific research and medical practice does not support the notion that large numbers of people want access to euthanasia.

David Currow, professor of palliative care at Adelaide's Flinders University, says most people receiving palliative care do not ask for their death to be hastened and, for the small number that do, their requests are rarely sustained. "I also argue there is no such thing as terminal sedation, and that in good palliative care, little sedation is necessary. The rates of uncontrolled pain are very low and you can count on one hand the number of cases where death is hastened by sedation."

The arguments between doctors and clergymen, academics and lawyers, hospital administrators and the various rights groups will go on. The only certainty in this is that our politicians will not stray too close to the debate. That is why, increasingly, the courts and tribunals around the nation will be left to decide.

Along with individuals such as Noeline Ling. "I have this terror which I've never expressed before that James will die alone," she says. "I don't talk about these things with anyone because it is too hard, I shouldn't have to think about making a decision that would see my child die, but I do."

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