Burden of choice for coma patients

Every day in an intensive care unit somewhere in New Zealand a decision is made about whether to withdraw medical treatment from a patient - whether that means turning off a ventilator or deciding against complex surgery.

Across the Pacific a battle is raging over whether American woman Terri Schiavo, who has been in a persistent vegetative state for 15 years, should be kept alive by artificial feeding. Schiavo suffered a heart attack, believed to have been brought on by an eating disorder, and has been sustained by artificial hydration and food since.

Now her husband and parents are locked in a legal tussle over whether that treatment should continue.

Doctors and lawyers here say while the Schiavo case is unlikely to be repeated in New Zealand they cannot rule it out.

Professor Donald Evans, director of the Bioethics Centre at Otago University, says no clinicians are obliged to provide medical treatment they believe is futile. He does not think anyone in New Zealand would be artificially fed for 15 years when they had no prospect of recovering consciousness.

He says political opportunism in America - where the conservative administration is conscious of extreme right, pro-life views - and doctors' fear of litigation are the reasons the situation has developed this way.

"As a result they are always having to practise with an eye over their shoulder, protecting their backs. So they err on the side of hyper, hyper caution, which is not always good for patients."

Under New Zealand's ACC legislation people do not have the option of suing for civil damages - something Evans describes as a huge advantage because it prevents the development of "defensive medicine".

"I don't think all of this fuss would have happened in any other country in the world apart from the US."

Dr Tony Smith, an intensive care specialist at Auckland City Hospital, says it would be unusual for such a case to happen here but he would not rule it out.

He says in the past decade there has been a big shift in attitude over the way people view "the balance of risk". Some families want every possible medical treatment performed and say they don't care if their loved one is permanently and severely brain damaged, needing 24-hour care. But what the family wants is not binding.

Smith says hospitals are now treating much older, sicker patients with more invasive, complicated and expensive treatments for which the chances of a good outcome are not guaranteed. That is not necessarily a bad thing - "it's part of advancing medicine" - but he says it soaks up scarce resources that could be used to help many more patients.

Ultimately, the decision to withdraw medical treatment from a patient belongs to the doctor and is made in consultation with other specialists.

The decision is made case by case and based on whether there is a reasonable likelihood that medical treatment could benefit the patient. Factors such as how reversible their condition is, how much resource (staff time and money) would be needed and how successful such treatment would be are taken into account.

"If it is successful, what is the outcome for the patient?" Smith says. "How disabled are they, what are the chances they will make any useful recovery, how much pain and suffering will we put this patient through? It's not science, it's an art."

Doctors will ask a patient what their wishes are where possible, or alternatively, their family.

Smith says there are probably not "more than a handful" of patients in a persistent vegetative state (PVS) in private hospitals around New Zealand. The reason he believes the figure is so low is that doctors try not to artificially prolong a person's life if it is clear the most likely outcome is persistent, severe brain damage.

He describes PVS as a state in which people remain severely brain damaged. They are usually unaware of their surroundings and unable to communicate. Their eyes may be open and they may be able to move and breathe on their own but they are not able to interact or understand what is going on around them.

In such cases Medical Association guidelines state a decision must be made about whether to continue feeding or hydrating the patient. The decision to withdraw a feeding tube must be made by the medical team, along with the family of the patient or those closest to him or her.

If there is persistent disagreement, help can be sought from an ethics committee, or as a last resort, the courts.

If the diagnosis is not clear, feeding and hydration must continue, possibly for months.

Smith says families are told of the decision in an "open and honest" way and asked what they believe their loved one would have wanted. They can ask questions and give opinions. In 99 per cent of cases families openly agree with the medical decision.

Smith says most New Zealanders will say they would rather be dead than profoundly and severely disabled with little chance of recovery.

Evans says in some cases where a person is in a persistent vegetative state, they may be able to breathe spontaneously, appear a good colour and their eyes may even follow objects around a room. But neurologists say that is purely a reaction - much like tapping a person's knee causes their leg to jump - and is not a sign of consciousness, interest or attention.

"What would be terrible in these situations would be for the family to be allowed to make the decision, because they haven't got the same grip on the clinical details as a clinician. They see eyes moving and are always hopeful and convinced that something good is happening and that there is an improvement," Evans says.

"If they had to make this decision they would never forgive themselves for what they would regard possibly as killing their loved ones. So it isn't their decision, it is the clinician's decision. It's made on a professional basis of best interests without it being clouded by this emotional attachment."

Under the law, any patient can refuse treatment - some people specify that they do not want to be kept alive by extraordinary means, such as artificial feeding - but they can not demand treatment.

Evans says "advanced directives" - sometimes known as living wills - can be useful in such situations but are not the answer.

Family law expert Stephen McCarthy says people can express their wishes in Enduring Powers of Attorney but those wishes do not override everything else.

"You can't express that wish in advance and expect it to be honoured regardless of medical opinion of anything else. The legal test is what's in the person's best interests and that ultimately ends up being a medical question."