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Diagnosing death: not as easy as you might think

 

A new Viewpoint in the New England Journal of Medicine this week looks at the thorny question of how we distinguish the living from the dead. As the author, bioethicist Dr Robert Truog, points out, being able to clearly make this distinction is an essential function of any society, determining who can be buried, whose wills can be executed, when people can be taken off a ventilator or when their organs can be donated. At first blush, the question of knowing whether someone is alive or dead may seem relatively straightforward – but there’s a surprising amount of disagreement and variation around how death is actually defined.

Take the recent case of Jahi McMath, a 13-year-old girl from California. In 2013, after undergoing a complex tonsillectomy, she experienced a massive haemorrhage which left her with severe, irreversible brain damage. Her doctors proclaimed her brain dead and notified a transplant donor organisation. But her parents didn’t agree, and went to court to oblige Jahi’s doctors to keep her on a ventilator. They argued that whatever the state of her brain, Jahi’s still beating heart meant that she was still alive.

Eventually the courts let Jahi’s parents remove her from the hospital, which issued a death certificate. Jahi was moved to New Jersey whose laws prohibit clinicians from declaring death by neurological criteria if this violates the religious beliefs of the patient. The upshot is that Jahi is legally dead in California, and legally living in New Jersey. She is kept biologically alive with a ventilator, feeding tubes and hormone supplementation, and her body continues to develop. Now aged 17, Jahi has  passed through puberty since her brain injury.

Jahi’s case is rare, but certainly not unprecedented. She is one of what are known as “beating heart cadavers” – people who, after a devastating brain injury, no longer have any brain function, although their hearts can be kept beating with medical intervention. Some of these beating heart cadavers can live on for months or years or, in one case, for two decades.

In most jurisdictions, beating heart cadavers are considered dead for legal purposes. But definitions of brain death vary from country to country and, as can be seen in the Jahi McMath case, even from state to state within a country.

In the UK, for instance, brain death can be declared when there is no activity in the brain stem, even though there could still be activity in the cortex. We are stricter in Australia, where brain death can only be declared when the whole brain is dead. But Australian law leaves it up to the doctors to determine “the creation and prescription of techniques of diagnosis” of death, without further defining how that may be done.

This vagueness has led to controversy in the past. In 2013, Melbourne-based bioethicist Professor Nicholas Tonti-Filippini claimed that patients in ICU were being declared brain dead and having their organs harvested even though they had not been properly found to be brain dead.

“They are diagnosing brain death while there is still some midbrain function. They say. ‘So what?’, because the person is not conscious.” he told Fairfax Media.

But the claims were strongly denied by the Australian and New Zealand Intensive Care Society, which claimed its brain death criteria were “an exemplar of rigour”.

Dr Truog, in his Viewpoint, says the problem with definitions of death stems at least in part from a variance in the way things are defined legally and biologically. Legal definitions are typically defined by “bright lines”, whereas biology tends to be continuous. He gives the example of how people acquire a completely new legal status in society on their 18th birthday, despite the fact that they are biologically and psychologically barely any different from the day before.

Death, he suggests, may be like that. There may be a legal point at which one is dead, but death itself exists on a continuous biological spectrum. There may be some people who have barely any more brain function than Jahi McMath, but who are considered by most jurisdictions as alive. And these patients may be able to live for many years.

The legal definition of death, like so many other legal definitions, is a social construction, Dr Truog says, “based on biological reality but not completely defined by it.”

Jahi McMath’s case remains relatively rare, which prompts Dr Truog to wonder why there aren’t more cases like her. The answer, he says, is that diagnosis of brain death acts as a self-fulfilling prophecy.

“In almost all cases, the diagnosis of brain death is quickly followed by removal of the ventilator or by organ donation, which invariably leads to cardiorespiratory death,” he writes.

You can access the full Viewpoint here.

When life is coming to a close: three common myths about dying

 

On average 435 Australians die each day. Most will know they are at the end of their lives. Hopefully they had time to contemplate and achieve the “good death” we all seek. It’s possible to get a good death in Australia thanks to our excellent healthcare system – in 2015, our death-care was ranked second in the world.

We have an excellent but chaotic system. Knowing where to find help, what questions to ask, and deciding what you want to happen at the end of your life is important. But there are some myths about dying that perhaps unexpectedly harm the dying person and deserve scrutiny.

Myth 1: positive thinking can delay death

The first myth is that positive thinking cures or delays death. It doesn’t. The cultivation of specific emotions does not change the fact that death is a biological process, brought about by an accident, or disease processes that have reached a point of no return.

Fighting the good fight, remaining positive by not talking about end of life, or avoiding palliative care, have not been shown to extend life. Instead, positive thinking may silence those who wish to talk about their death in a realistic way, to express negative emotions, realise their time is limited and plan effectively for a good death or access palliative care early, which has actually been shown to extend life.

For those living closer to the prospect of death, being forced to manage their emotions is not just difficult but also unnecessary, and counterproductive to getting the help we know is important at the end of life.

Myth 2: dying at home means a good death

The second myth is dying at home always means a good death. While Australians prefer to die at home, most die in hospital. Managing a death at home requires substantial resources and coordination. Usually at least one resident carer is needed. This presents a problem. Currently 24% of Australians live alone and that’s predicted to grow to 27% by 2031. We also know many Australian families are geographically dispersed and cannot relocate to provide the intensive assistance required.

The role of the carer may be rewarding but it’s often hard work. We know timing of death is unpredictable, depending on the disease processes. Nurses, doctors and allied health professionals visit, problem solve and teach the carer to perform end-of-life care. They don’t move in, unless they’re hired in a private capacity; a possible but pricey alternative. Finally, specialist equipment is required. While this is usually possible, problems can arise if equipment is hired out for a specific time and the patient doesn’t die within that allotted time.

It’s not a failure to die in a hospital, and may be the best option for many Australians. While it would appear that large public or private hospitals may not be the best places to die, in many areas they provide excellent palliative care services. Appropriate end-of-life planning needs to take this into account.

Myth 3: pushing on with futile treatment can’t hurt

A window of opportunity exists to have a good death. Pushing on with treatment that has no benefit or is “futile” can be distressing for the patient, family and the doctors. Doctors are not obliged to offer futile treatment, but unfortunately patients or family may demand them because they don’t understand the impact.

There are cases where people have been resuscitated against better medical judgement because family members have become angry and insisted. The outcome is usually poor, with admission to the intensive care unit, and life support withdrawn at a later date. In these cases, we have merely intervened in the dying process, making it longer and more unpleasant than it needs to be. The window for a good death has passed. We are prolonging, not curing death and it can be unkind – not just for those sitting at the bedside.

The ConversationThe story of a good death is perhaps not as interesting as a terrible one. Yet there are many “good death” stories in Australia. There are likely to be many more if some of the myths that surround dying are better understood.

Sarah Winch, Health Care Ethicist and Sociologist, The University of Queensland

This article was originally published on The Conversation. Read the original article.