radically accepting finitude
motto : don’t have a stroke in israel…
By Claudia Hammond BBC Health Check
When Ariel Sharon died in January this year, eight years after a stroke, he’d survived for longer than would probably be expected had he lived elsewhere in the world.
Since 2005 it’s been illegal in Israel to turn off ventilators when a person is dying or has no hope of recovery. The result is that large numbers of patients spend years on life support, many of them unconscious.
After surviving Auschwitz as a small child only to find herself without a family home after the war, Hava, who’s now 80, made a promise to herself.
When she grew up she would have her children young, provide them with a warm home and then after they’d left she and her husband, Schmail, would have a second childhood and this time, it would be a happier one.
For a while it was, but then her husband developed heart disease and one day, at the age of 71, he collapsed.
For the past 12 years he has lain in a bed in a converted psychiatric hospital up in the hills on the outskirts of Jerusalem.
Like all the other patients here, he lies silently with a large tube connected to a hole in his throat that breathes air into his lungs.
Hava spends six hours a day at his bedside. “I try to talk to him,” she tells me. “I let him know he’s not alone.”
He’s unconscious, but she thinks the one voice he recognises is hers. “I try to keep him alive,” she says. “So long as he has a warm hand that’s something.”
A few patients are propped up on pillows. The odd one stares into the distance, but for the most part each bay contains people who look as though they’re sleeping, somehow suspended in limbo between life and death.
At the nurse’s station there’s a CCTV monitor where all 20 patients can be viewed on one screen and you see very little movement – just sleeping people.
In most countries a ward like this would not exist, and doctors and families in discussion together, might have made the decision to turn off Schmail’s ventilator to allow him to die.
But since 2005 this has been illegal in Israel and is considered to be killing the patient, even if they are already dying.
The law in Israel was informed by Jewish tradition, but talking to families of other faiths in the hospital here, it seems to have become a cultural viewpoint too.
Herzog Hospital Jerusalem cares for over 100 chronically ventilated patients, including babies, on special wards
When I visit the children’s ward there are the colourful mobiles, wall friezes and the tinny sounds of piped nursery rhymes. There are 22 children here and it feels like any other children’s ward – barring the absence of much noise.
Some of these children survived drowning, others had near-fatal accidents. It’s as though they’ve been put down for an afternoon nap, except that they don’t wake up. And over the years they grow of course.
I meet Eli Cohen whose daughter was only three years old when she choked on her own vomit during the night, starving her brain of oxygen.
He tells me she was a “very, very sweet girl”, but there’s there very little chance of recovery.
The law of the dying patient
Israel’s position on keeping ventilated patients alive is particularly unusual when patients are not stable on a ventilator but dying on one.
When a patient is dying decisions have to be made, both by the medical team and the family, about what treatment they receive.
The Jewish faith draws a clear distinction between withholding and withdrawing.
Any act that hastens death is prohibited; so it follows that it is illegal to turn a ventilator off when a patient is dying, even if this would ease his suffering.
She’s now 14 and looks like a teenager. Her sisters visit her every day to keep her up to date with the family events which she will never attend.
She lies in bed on a ventilator with limited movement. ‘She can’t even blink,’ said Eli. ‘But she does move a bit.’
“Exactly what she’s thinking we don’t know”, her father says to me. As an ultra-orthodox Jew he says that he believes that what has happened to her must have occurred for a good reason, “But even now I sit next to her and cry,” he says.
During this time Eli and his family have visited the ward regularly, updating her about their lives and bringing news from the outside world.
Despite any change in her condition, his daughter has progressed, growing from a young child into a teenager. In four years’ time she’ll be a young woman and moved to the adult ward.
The doctors seem to encourage a sense of hope. One tells me, “Hope for a miracle is a fundamental human trait”.
I’m looking around the ward and another doctor comes up to tell me that a mother has heard that we’re here and has requested that I come and speak to her adult son.
She thinks that having the BBC here might be enough to wake him up. She looked expectant. I knew I was going to disappoint her.
I’ve been here all day and all night for eleven years.”
She was from Georgia and spoke no Hebrew, but through a three-way translation she tells me, “I’ve been here all day and all night for eleven years.”
Her son looks as though he was asleep and there seems to be flickering behind his eyelids, but he too is unconscious after a cardiac arrest.
Beside the bed an old folded mattress leans against the wall, alongside several giant checked shopping bags, a small fridge and a coffee machine.
Although she doesn’t speak the same language as any of her the staff, his mother had made the ward her home.
She now lives at his bedside and her daughter who works in a shop nearby often visits too. His mother is determined not to leave his bedside in case he wakes up. My visit didn’t have that effect.
Like Hava she continues to sit at her loved one’s bedside. Hava says the whole experience has changed her.
She has learnt to live day by day and has some advice for me, “You can’t live your life in the future. Do what you have to do now and not later.”