When death is not the end
SHALOM OUANOUNOU was declared dead in September. The 25-year-old Canadian had suffered an asthma attack so severe that he was taken to hospital in Ontario where he was put on a ventilator. After carrying out tests, doctors found that his brain lacked functions such as consciousness and respiratory reflexes. They issued a death certificate and prepared to disconnect the medical equipment.
But Mr Ouanounou’s family said that he and they, as Orthodox Jews, believe that life ends only when breath and heartbeat cease. They won a court injunction to keep him on artificial ventilation; his heart stopped of its own accord in March, five months later. “It just doesn’t make any sense to us to say he wasn’t alive throughout that period,” says Max Ouanounou, his father.
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Mr Ouanounou would have been declared dead in the same way in almost all rich countries. They tend to treat irreversible loss of all of the brain’s function as constituting death. American states typically demand evidence that the whole brain has stopped working, for example a lack of intracranial blood flow, but there is no national protocol. Britain requires only the death of the brainstem, which runs between the spinal cord and the rest of the brain, and regulates reflexes and functions such as breathing. (Advocates for using brainstem death say it is a proxy for whole-brain death, though others disagree.)
In practice, the question of when someone is dead rarely arises. The heart and lungs usually shut down around the same time as the brain. The lack of pulse and breath is generally considered a biological marker for brain death, not an alternative to it. But determining when death occurs might matter for all sorts of reasons: when is someone widowed? When should a company pay out life insurance? Even, when should a new president be sworn in? As Lainie Ross, a doctor and bioethicist at the University of Chicago, says: “We can’t have someone being considered dead by some people and alive by others.”
Cases such as Mr Ouanounou’s are challenging the consensus about what it means to be dead. A court in Ontario will decide whether to revoke his original death certificate and issue another showing him as having passed away this year. “Death is a value judgment based on cultural, philosophical, religious, social and other considerations,” says Rihito Kimura, a Japanese lawyer and bioethicist. That makes it subject to change.
What it means to be dead was long considered simple; a lack of pulse and breath was the standard sign. But that changed in the 1950s and 1960s with advances in modern medicine. Machines could, for the first time, keep pumping blood through a person’s arteries and veins, and aerating their lungs, long after they lost the ability to do so themselves. That lengthened the dying process: no longer must all organs shut down around the same time.
In 1968 a committee at Harvard Medical School recommended that brain death be the standard definition, and came up with criteria for assessing it. In 1981 America drew on this report in the Uniform Determination of Death Act, which suggests states use brain death as the definition, and that it can be determined either by the end of the heartbeat and breath, or by permanent damage to the whole brain. Most Western countries followed suit.
Mind over matter
There are three reasons why policymakers and most doctors have focused on the brain. One is that Western philosophy sees a distinction between mind and body. And while in other cultures the heart is often viewed as the central organ, Western societies emphasise the importance of the mind, for which the brain is used as a proxy. Bioethicists argue that using brain death as the standard definition values what is unique about humans.
The second consideration is the cost of keeping a person on life support. Stretched health services do not want to spend money on what some consider to be “aerating corpses”. The hospital treating Mr Ouanounou reckoned it had, at the time of the injunction, spent C$500,000 ($400,000) on his treatment.
The final reason is to facilitate organ transplants. In Britain 1,332 people died in 2016 due to a lack of an organ donor; in America the figure is more than 7,000 (the two countries measure the tally in different ways). More organs can be used from a donor who is dead according to brain criteria than after cardio-respiratory failure.
In some countries it is openly recognised that a shortage of organs is a consideration in the use of brain death. This stokes fears that people will be determined brain-dead so that their kidneys, liver or heart can be used in a transplant operation. It also helps explain why Japan continues to rely on cardio-respiratory death, says Mr Kimura. In a famous case in 1968 a doctor in Sapporo, on the northernmost island of Hokkaido, carried out one of the world’s first heart transplants. It was applauded until some questioned whether the donor had been pronounced brain-dead prematurely.
Facing a severe shortage of organs, Japan in 1997 tried to find a middle ground by enacting a law allowing those who clearly express their wish to be a donor to be declared dead when their brains shut down. India’s organ-transplant law of 1994 specifies that death can be determined by a dead brainstem. But that has caused confusion about how to define the death of non-donors, notes Sunil Shroff of the Mohan Foundation, an NGO that promotes organ donation. Other laws dealing with death refer to it as the end of all evidence of life. It is not clear whether that means the brainstem or something broader.
A problem with using whole-brain death as the definition is that it is increasingly apparent that many people declared dead on this basis do not show the permanent cessation of functioning of every aspect of the brain, says Dr Ross. The hypothalamus may continue to secrete hormones, for example. That is one of the arguments being made in the case of Jahi McMath, a bubbly American teenager until a simple operation went wrong. Her family dispute the hospital’s assessment, made in 2013, that she is brain-dead, pointing to the fact she is menstruating, which is neurologically regulated.
Other critics of the status quo support the principle of using the brain-death standard, but worry about how it is applied. They point out that it can leave doctors a lot of room for interpretation. Defenders of the use of brain-death criteria retort that such problems can usually be resolved. Countries can clearly define death in law, in line with medicine’s ability to diagnose it, so there is less room for abuse or doctors’ personal judgments.
But the fundamental challenges to the definition are about whether the brain should be the key component of death. Often this is down to religious belief. Unlike in the past, when Jews were declared dead by a rabbi who would use a feather or mirror to detect when the final breath had left the body, today most Jews accept brain death. But Orthodox sects consider this wrong. Some Muslims hold similar beliefs. Another current case in Canada turns in part on the Christian beliefs of Taquisha McKitty, who was declared dead last year after a drug overdose. Her family say that she believes that the soul is present so long as the heart works and she is breathing, even if only due to medical equipment.
Hugh Scher, the lawyer for the families of both Mr Ouanounou and Ms McKitty, argues that Canada’s legal definition of death violates its constitutional guarantee of freedom of religion. (His opponents say that only living people have that right.) The idea has found some support. The American state of New Jersey bans a doctor from declaring someone dead from irreversible brain damage if the medic has reason to believe it would contravene the patient’s religious convictions. In 2008 Israel introduced a brain-death standard but still allows some choice for patients between that definition and using a cardio-respiratory one.
Many developing countries continue to use cardio-respiratory definitions. African traditional faiths often make people want to prolong life at all costs, observes Rabi Ilemona Ekore, a doctor at the University of Ibadan in Nigeria. Many Africans believe they will become an ancestor in the spirit world only if their life is not cut short.
Objections to brain death are not just religious, though. Some places prefer cardio-respiratory death because they lack the medical equipment to keep a brain-dead person breathing, notes Daphne Ngunjiri, a Kenyan doctor.
Japan is reluctant to see the brain-dead as gone partly owing to a different notion of what makes someone human. The whole body is given prominence in Japan, rather than the mind, as in the West. “If we explain to families the notion of death in Western countries, they struggle to accept it,” says Misa Ganse of the Japan Organ Transplant Network.
Opinion polls tend to show that people do not understand brain death, but when they do, the results suggest that even in Japan a majority supports the idea of using it as the standard. But Claire White-Kravette, a psychologist at California State University, Northridge, in Los Angeles, says that even if people accept it in the abstract or at an intellectual level, when it involves an actual person, they feel differently.
It is hard for people to accept that someone is dead when faced with a relative who is warm and rosy-cheeked. Mr Ouanounou, for example, says his son looked “like he was sleeping”. Ms White-Kravette also reckons that most surveys ask about the mind and body only, thereby failing to allow for a third component, call it life-force or a person’s essence, which many people, whatever the country, believe exists, and do not necessarily associate with the brain. Such objections are not catered for, bar in New York state, which directs doctors to show “reasonable accommodation” for not only religious but also moral protests against the brain-death standard.
The challenges to the status quo have a unifying theme: the lack of say over something as fundamental as one’s own demise. Blanket definitions of any sort go against what Rob Jonquière of the World Federation of Right to Die Societies, a network spanning 26 countries, says is a global trend towards more respect for people’s right to determine their own end. Few dispute that, for society to function, death must be clearly defined. But there are growing calls for countries to allow people to opt out of their national definition—within limits—by making their wishes known.
Dr Ross and Robert Veatch, a professor at Georgetown University, argue that those options should include not only cardio-respiratory death, but a more liberal definition of brain death based on the irreversible loss of consciousness. Assuming it is medically possible to determine this, they contend that it is what makes us human and what current brain-death definitions attempt, clumsily, to measure.
Allowing people some discretion in death would have practical implications. But none seems insurmountable. Insurance premiums could, for example, take account of medical charges to cover the costs of equipment and drugs for someone who favours cardio-respiratory death. The limited examples in Japan, Israel and parts of America have thrown up few problems. Societies find ways to deal with similarly tricky matters. Even when less is at stake.
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