For our ancestors, dying often happened suddenly. On the time scale of human history, antibiotics are a recent arrival.
One morning, the first US president, George Washington, had a sore throat; the next evening, he died.
Madiba’s situation is different. Last week, his wife, Graça Machel, asked Rivonia Trialists Ahmed Kathrada, Andrew Mlangeni and Denis Goldberg to visit him in hospital for her husband to have “the stimulation of hearing voices that he knows”. Goldberg chatted and Madiba turned his head.
Graça reportedly said to Goldberg: “He is talking to you . . . It’s just that he cannot move his mouth.” The pipe down his throat prevented him from doing that.
The Latin edition of the 1415 medieval bestseller, Ars Moriendi (Latin for “the art of dying”) had 100 reprints across Europe. The book is about readiness to die, as people back then took preparing for death pretty seriously.
Recently, at my doctor’s rooms, I noticed a patient’s file with a sticker on it, which read: “Do not resuscitate.” This sticker is, of course, that of The Living Will Society (SAVES), which more than 43 000 South Africans have registered with.
“SAVES”, is a shortening of their motto: “Saves Suffering and pain, saves Anxiety for loved ones, saves Valueless prolongation of a terminal illness, saves Existence without quality of life, and saves Spending life savings unnecessarily”.
Those 43 000 people have made a decision ahead of time when they are sound of mind and not under the stress of imminent death. But 43 000 is a drop in the ocean. In 1991, medical leaders in Wisconsin, in the US, campaigned to get end-of-life issues discussed.
Over five years, the percentage of living wills grew from 15% to 85% of the adult population. When people went to a care facility they were asked to complete a form listing advance directives with questions that covered the extent of treatment they would be willing to allow to keep them alive.
Doctors are given clear guidance and a living will avoids conflict. When an 85-year-old I know fell ill, her kidneys were failing and the doctor advised she would not recover.
She had made it clear she did not want life-prolonging interventions, and so her final hours were her last gift to her family – a precious time of conscious leave-taking.
Gawande tells us of Susan Block, a palliative care doctor who specialises in having such conversations ahead of time, listening to fears and concerns. But she almost missed the conversation with her own dad.
He had appointed her as his healthcare proxy to make decisions should he ever not be conscious to make them for himself. The evening before major surgery, Susan realised: “Oh my God, I don’t know what he really wants.”
Then she talked to him.
“I need to understand how much you are willing to go through to have a shot at being alive and what level of being alive is tolerable to you?”
He replied: “Well, if I’m able to eat chocolate ice cream and watch football on TV, then I’m willing to stay alive. I’m willing to go through a lot of pain if I can have a shot at that.”
Surgery happened and complications occurred, then doctors consulted with Susan. To save his life they’d have to operate again.
If he survived, he’d be a quadriplegic and disabled for many months. She asked if her dad would be able to eat ice cream and watch TV. When they said “yes”, she gave the go-ahead.
The rehab was horrible – and if he hadn’t said what his criteria were, she would have doubted the decision. It took him two years to recover, but he lived another eight.
Not all stories have good endings. Professor Sean Davison of the University of the Western Cape’s forensics laboratory went to stay with his mother in New Zealand. Terminally ill with cancer, she became frustrated as her quality of life deteriorated.
She decided to hasten her death by starving herself. She called it “doing a Bobby Sands” (after the Irish nationalist who died on a hunger strike in prison).
Sean’s story, Before We Say Goodbye, is hard to read. Imagine staying with your mum and watching her drink only water for 33 days. She’s becoming thinner. She becomes too weak to swallow the tablets that she saved for if and when still being alive feels unbearable. She asks for her son’s help.
He crushes the morphine into water and spoon-feeds the lethal dose.
He is then charged with attempted murder. Later this is modified: “Mr Davison, you are charged with inciting, procuring, and counselling the assisted suicide of Patricia Elizabeth Davison on 25th October 2006. How do you plead?”
The laws in New Zealand are similar to those in South Africa. The countries across the world that offer you the right to choose to die in certain circumstances are but a handful. Gawande writes: “Spending one’s final days in an ICU . . . You lie on a ventilator, your every organ shutting down, your mind . . . beyond realising that you will never leave this borrowed fluorescent place.”
And what about the stress on carers? A 2008 Coping with Cancer study showed that caregivers of family members who die in ICU are three times more likely to suffer major depression in the following six months. Human rights mean living with dignity. Every day, media stories on the rights of the living command our attention.
We need to talk more about dying with dignity.