Nelson Mandela will be preparing this morning to endure his eighth day in intensive care. As nurses at the Pretoria hospital bustle about making the 94-year-old former president of South Africa as comfortable as it is possible to be amid the oxygen masks, tubes and beeping machines of a modern intensive care unit, the world anxiously awaits the next bulletin on the frail anti-apartheid hero’s health.
On Thursday, Jacob Zuma, South Africa’s current president, appealed to people to pray for “Madiba”, Mr Mandela’s clan name, following a visit to his bedside. He was improving but remained in a serious condition, Mr Zuma said, after a “difficult few days”.
While this glimmer of hope may temporarily have allayed the anxieties of a nation – and the world – it cannot disguise the fact that Nelson Mandela’s life is drawing to a close. And that has raised the question of when it is time to let go.
This is Mr Mandela’s fourth unplanned hospital admission since late last year. In December, he spent 18 days in hospital being treated for a recurrent lung infection and gallstones, and it is the lung infection, a legacy of the tuberculosis he suffered while imprisoned in the 1980s, that has led to his latest admission.
The prospect of his going terrifies many South Africans, fearful that he is the glue that holds the country together. At the same time, there are murmurings in the South African press calling on the Mandela family and his doctors to acknowledge the inevitable.
His old friend and fellow Robben Island prisoner, Andrew Mlangeni, told the South African Sunday Times: “The family must release him so that God may have his own way with him. Once the family releases him the people of South Africa will follow.”
Similar opinions are being expressed around South Africa dinner tables, the BBC reported, though few are prepared to join Mr Mlangeni and air their views in public for fear of a backlash.
Details of Mr Mandela’s condition are being closely guarded by his inner circle, anxious to preserve the dignity of the “father of the nation”, and the media has largely respected their wishes. When, earlier this week, a US TV station claimed to have details of the state of Mr Mandela’s internal organs, other news outlets declined to take up the story.
The dilemma his doctors face – when to stop “striving officiously” as the Hippocratic oath has it, and switch focus from curing to caring – is all too familiar to palliative care specialists. Recognising that the end is approaching and broaching the subject with the patient and their family demands strength and delicacy – and is often avoided.
“Breaking that bad news is very difficult but very important,” said Mayur Lakhani, the chairman of the UK National Council for Palliative Care. “Recognising the signs when someone is dying should not be seen as a failure but as opening up the doors to comfort care.”
In the old days, the choice was either/or, cure or care. “Now we can cure and care. Some things can be fixed – an infection, for example – but the focus is on maintaining the quality of life for as much of it as remains.”
In England, it is estimated that as many as 92,000 people a year die without their approaching death being recognised or acknowledged, so they are denied the palliative care that could keep them comfortable. Instead, said Dr Lakhani, they get the “standard aggressive treatment, which does not work”.“We have frail elderly people getting heroic treatment who end up suffering worse.”
According to the US surgeon and author Atul Gawande, writing in The New Yorker, the healthcare system we have built to save lives is utterly failing to deliver what patients want and need when the end comes. “Spending one’s final days in an intensive care unit because of terminal illness is for most people a kind of failure. You lie on a ventilator, your every organ shutting down, your mind teetering on delirium and permanently beyond realising that you will never leave this borrowed, fluorescent place. The end comes with no chance for you to have said goodbye or ‘It’s OK’ or ‘I’m sorry’ or ‘I love you’.”
Recognising the inevitable is not, specialists insist, defeatist. It does not mean abandoning active treatment, but changing focus from prolonging life to improving its quality.
The natural response of relatives is to wait until doctors tell them there is nothing more they can do. But modern medicine has advanced to the stage where there is always something more that doctors can do.
It was to halt the unnecessary suffering that can result – and too often does – from the unfettered use of technological interventions that the Liverpool Care Pathway was devised to guide medical teams caring for patients in the final few days and hours of life. As the body’s organs begin to shut down, the programme advises on when to give drugs, when to withdraw food and liquid and how to minimise pain and suffering.
Drawn up in a Liverpool hospital, it has spread across the NHS in recent years as a means of bringing kinder, less aggressive, hospice-style care to patients dying in hospital. But it has become embroiled in controversy over the alleged failure of some doctors and nurses, unable or unwilling to broach the issue of death, to explain fully to patients and their families what was happening and seek their consent. A review chaired by Baroness Neuberger is due for publication next month.
Arriving at an acceptance of our mortality and of the limits of medicine is a process. Death cannot be avoided – but it can be eased. A large part of negotiating the right treatment at the end of life is to help the family – and in Mandela’s case, the nation and the world – to cope with the overwhelming anxiety that death inevitably brings.
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