TALKING ABOUT DEATH AND DYING – Why don’t we talk about death and dying? We can choose so many of our life experiences, but it seems we can have no say in whether we die in pain or at peace. Today we look at the Australian government’s efforts to suppress discussion of euthanasia.

There’s plenty of information available on how to kill yourself violently, so why does the Australian government so vigorously censor information on peaceful methods?

Voluntary euthanasia societies have long been pushing to legalise death with dignity. According to opinion polls, a strong majority of Australians support legalisation, yet Australian governments have been unreceptive. When the Northern Territory government legalised euthanasia in 1996, the federal parliament overruled the law less than a year later.

Philip Nitschke, despairing of the legal route, set up Exit International to enable people to learn how to obtain a peaceful death through their own initiative. Exit publications provide information about obtaining pentobarbital, commonly known as Nembutal, the drug of choice everywhere that death with dignity is legal.

Censorship and response

The Australian government has responded with amazingly draconian censorship. No other government has taken such extreme measures to prevent access to information on peaceful death.

Exit had an information phone line. The government passed a law making it illegal to convey information over the telephone about ending one’s life. Exit responded by putting its phone line in New Zealand.

Exit has a website. The government banned Australian Internet service providers hosting websites with end-of-life information. Exit hosted its website overseas.

For some years, the government has been pushing for a web filter, ostensibly to block material on paedophilia and violent pornography. The government kept secret its list of websites to be blocked but the list was revealed on WikiLeaks – and it contained euthanasia websites. Exit responded by providing information about using proxy servers to get around the filter.

Philip Nitschke and Fiona Stewart wrote a book, The Peaceful Pill Handbook, with detailed information about peaceful ways to end your life. The book is freely available in most of the world, but the Australian government banned it. This was only the third book banned in Australia in a third of a century. Exit makes it easy to obtain the book, in hard copy or electronic form, from its websites.

Exit produced a short advertisement with the mild message that being able to choose how to die might be a good idea. Prior to filming, it was approved by the regulatory body Commercials Advice.

Afterwards, just before screening, Commercials Advice withdrew its approval. Exit put it on YouTube, where it was free to view, and some Australian media ran the story of how it had been censored:

Exit has also encountered legal threats, last-minute refusals to use hired venues and attempts to block its billboard advertisements.

Many people are keen to obtain the information provided by Exit. Nearly all of those who attend Exit’s meetings are old – the minimum age to attend the members-only segments is 50. Some are seriously ill. They are looking for information on how they can end their lives peacefully, when pain, indignity and suffering become too great. The government is doing its utmost to prevent this.

Violent death

However, the government seems quite complacent about the availability of information about killing yourself violently.

Licensed handguns are legal in Australia, and you can take a course in how to use them. Shooting is one of the common ways men commit suicide. There are plenty of films and television shows with graphic portrayals of suicide by firearm.

The most common method for suicide in Australia is hanging. The technology – rope and something to tie it to – is readily available. Again, there are many media portrayals. For example, The Shawshank Redemption, a film rated very highly by audiences, includes an informative sequence of suicide by hanging.

It does not require much imagination to figure out how to kill yourself by jumping off a building, drowning or crashing a car, or you can look up suicide methods on Wikipedia. Shooting, hanging and other violent methods are not nice ways to die. They are unreliable: you might survive and end up permanently disabled. They are painful, often agonising. And they are highly distressing for family and friends.

The government is trying to prevent people suffering from terminal illnesses from finding out how to die peacefully. The result is that many of them choose violent methods instead, such as hanging. Yet the government is doing little or nothing to prevent access to information about violent suicide options.

Rationales

It might be argued that the government can’t prevent access to information about means for violent death – that would be censorship. But of course it has shown itself quite willing to censor information about methods for peaceful death.

Another argument is that people shouldn’t be able to choose a peaceful death, because that would make it too attractive. The evidence shows, on the contrary, that having the means to die peacefully frequently enables people to live longer.

Nor is there much risk of accidentally dying with the means described by Exit. Nembutal is extremely bitter, so no one is going to swig down a bottle by mistake. Another option, making an exit bag, requires considerable advanced planning and preparation. It is not a spur-of-the-moment suicide option.

The standard explanation is that the government is pandering to the religious lobby, which apparently is more concerned about stopping dying with dignity than stopping violent suicides.

The irony is that while physician-assisted suicide remains illegal, there is increased interest in Exit’s approach. So far, Exit has found a way around every censorship technique introduced by the government.

In some cases, the censorship has simply created more visibility for and interest in Exit’s activities. The government seems to have accomplished an unlikely double: appeasing the religious lobby while stimulating the development of ever better information and technology for do-it-yourself death with dignity.

Acknowledgements: I thank Paula Arvela, Trent Brown, Rae Campbell, Philip Nitschke, Russel Ogden and Fiona Stewart for helpful comments.

End of the care conveyor belt: death in intensive care units

TALKING ABOUT DEATH AND DYING – Why is it we don’t talk about the greatest inevitability in our lives? Why don’t we talk about death and dying? Today we hear from a professor of intensive care, who looks at why so many people end their lives in Intensive Care Units.

Intensive Care Units (ICU) were only just being established when I first became a specialist in 1981. They were small and intended for patients with life-threatening illnesses who could be supported for a few days to make a full recovery.

Admitted patients included sufferers of serious trauma or infections and those who had complex surgery, such as open-heart operations.

Thirty years later, the speciality has its own unique and legitimate place in medicine. Every large hospital has an ICU. I started with six beds in the early 1980s and have recently moved into a 60-bed unit.

The operating cost for each bed is over $1 million annually.

Their role has also changed. It’s now difficult to die peacefully in a hospital and an increasing number of our community will spend their last few days in an ICU. The change is not a conspiracy; it has just happened but it offers little benefit to anyone.

My grandfather died peacefully at home in 1959. It’s different now. If you become seriously ill, as most people do at the natural end of their life, urgent help is usually sought. An ambulance is called; you are transported to the emergency department where active resuscitation occurs.

This is a natural course of events as there may be a treatable component to the disease. Also, few people have advance care directives, which state their end-of-life wishes. And seriously ill people dying at home can be frightening for carers.

Futile care

Many of us will be put on this conveyor belt, eventually finding our way to an ICU. Along the way you’ll be cared for by professionals, such as general practitioners, ambulance personnel, and hospital clinicians.

Because medicine has become so specialised, they often won’t understand each other’s boundaries, so it’s more than likely that you’ll continue your journey, often ending up on a life-support machine for the last few days of your life.

Intensive care is seen as the natural place for the seriously ill. The challenge is to recognise whether it’s appropriate to sustain life with all the machines and drugs that we have in ICUs. Because we can do so much more these days, we often just reflexly do our utmost to save lives – that’s what doctors are trained to do.

Compounding the problem of futile care at the natural end of life is the fact that doctors, as a rule, don’t feel comfortable talking about death and dying. So small, incremental treatments are delivered, even in the face of almost certain futility.

Maybe it’s being “almost certain” that’s the issue, but it’s hard to be ever completely certain in medicine. And so patients are transferred to ICU, put on life support machines and more incremental therapies follow, with everyone hoping for a miracle.

Eventually, it becomes obvious the patient won’t survive despite all the machines. Discussions with families begin, usually a consensus is reached and treatment is withdrawn. The patient is finally allowed to die in peace.

Around 70% of Australians would like to die at home but over half will eventually die undignified and painful deaths in hospitals.

Reality and expectations

Intensive care specialists have had to be increasingly involved in the dying process. It wasn’t what attracted most of us to the specialty. We still gain a lot of our professional satisfaction from saving lives.

But we also have a responsibility to engage our colleagues and society in discussions about unrealistic expectations of what modern medicine can, and more importantly, cannot achieve.

Hardly a day goes by without reports in the media about the latest miracle drug or procedure. Most television dramas emphasise great diagnosticians and cures against all odds.

One study showed that most patients who have a cardiac arrest in hospital television dramas live. But the reality is that most die and resuscitation shouldn’t have even commenced.

In response, we can open up discussions by being honest about the limitations of modern medicine. These discussions may lead to greater acceptance of dying and death.

There also has to be a different emphasis in health professional education. Obviously, successfully treating disease is the major goal of medical and nursing education. But managing the dying process is an important part of that goal.

When people with a terminal illness are asked what they think is important, they identify adequate pain and symptom relief; avoiding inappropriate prolongation of dying; achieving a sense of control; avoiding being a burden; and strengthening relationships with their loved ones.

A different approach

An important part of a different approach to end of life care is to provide alternatives to hospital admission.

I recently visited my sister-in-law, Denise, who lives in Oregon. She’s in the terminal stages of motor neurone disease: a cruel condition where muscles gradually become paralysed until the diaphragm becomes involved and you can no longer breathe.

All of this occurs without any involvement of the brain, so the patient is totally aware of the increasing weakness and dependence on others for most functions.

As part of medical care in the United States, you can opt for what is known as hospice care. The word hospice refers to a program, not a site of care. The government-funded Medicare program covers all costs.

The catch is that you must forgo any options for active treatment of the terminal disease, such as chemotherapy. That’s fine for Denise because there’s no specific treatment for the disease and she doesn’t want to spend the last few weeks or months of her life with a tracheostomy and on a ventilator.

The health system in the United States is far from perfect, being the most expensive and low on the list of measured health outcomes. But the hospice care that Denise is now receiving must be one of the more appropriate ways of managing people at the end of their life.

She remains under the care of her general practitioner. Since her wish is to remain at home, a palliative care nurse co-ordinates care and is on call and available 24 hours a day. A social worker, physiotherapist, occupational therapist initially assessed her and now visit as needed.

Someone comes three times a week to bathe her and provide about four hours of respite from care for her husband, Paul. Denise can be admitted to the local hospital for five days of care if Paul needs more respite. There’s no limit on how many times this can occur.

A masseur and music therapist are also available. As are drugs for the relief of pain and other distressing symptoms. The co-ordinating nurse gives comprehensive instructions on their use to both Denise and Paul.

A happier ending?

An interesting finding from one study showed that hospice care combined with the option for active treatment resulted in greater survival and less suffering than for active management alone. The conclusion was, that given the choice, many will opt for hospice care rather than the often cruel and futile use of options such as more chemotherapy.

Almost half of the cost of health care is spent in the last six months of life. This is a huge and increasing burden for our ageing society.

I spent a week with Denise and met the team that cared for her. As a practising intensivist, I had the privilege of seeing a system that was co-ordinated and centred around the patient’s wishes.

The state of Oregon also respects the right of patients to not be resuscitated or transported to hospital by an ambulance. She has the document on her at all times and a copy fixed by a magnet on the refrigerator.

Currently, in Australia many people are transported to hospital because there is little in the way of comprehensive and co-ordinated community-based care at the end of life.

So it seems that improved care for the terminally ill would be of great benefit to society, both in terms of less suffering and cost savings – a win-win situation as they say.