Often it’s better to put your energy into dying than clinging on to life.
I feel for the Mandelas and their nearest and dearest. The days are unfolding one by one by one. I think this is one of the most awful times any family has to bear – watching the slow ebbing away of life from the person you love so much.
The pain verges on the unbearable and most of us are not at our best when we’re stressed. Tensions mount, conversations implode.
Family members hurt each other, often unconsciously, as they whirl around in an emotional headspin, and they are unaware of or less caring about how they affect others.
Joe Slovo, my late husband, died in his fourth year of battling with cancer. The last 20 days of Joe’s life were the longest days of my life. Joe had no night, no day, just hours rolling by, and we created shifts, snatching sleep when we could, so that he would always have company.
The lovely thing was that it was not a sudden death. We had all the time in the world for all of us to say our goodbyes, and again that’s what’s happening with Madiba this week.
Many of us have moved from “Will Madiba pull through just one more time?” to the acceptance of his death and wondering when the announcement will be made that our beloved leader is no more.
Two questions have come up for me this week. The one is about giving permission, creating private space for the person to die. The second question is about what level of end-of-life medical intervention is appropriate.
On Monday, Makaziwe Mandela, Madiba’s first daughter, was asked by CNN whether the family should let Madiba go. She replied: “In our culture, the Tembu culture… you never release the person unless the person has told you, ‘Please, my children, my family, release me’. My dad hasn’t said that to us.”
I understand that this is Madiba’s prerogative. It is the choice of the person dying who must express their readiness. But I imagine I will be torn apart between deciding my time is up, and it being so hard to say goodbye to those I love. I did my hospice caregivers’ course in 2010. They advise that you as the loved ones must help by giving permission. Luckily, this is what we did instinctively with Joe.
Wednesday night, the 4th, had been a terrible night for Joe. He was hunched, shivering slightly whilst feeling hot. I noticed he was not wearing his spectacles, not focusing but withdrawing inside himself, barely communicative.
“Joe, you’re not enjoying anything any more, are you?”
“It’s torture for you to be in so much discomfort and torturous for us to watch you in this way.”
“Joe, all that willpower that you put into staying alive, can’t you now put your remaining energy and willpower into dying more quickly?”
(Joe Slovo. The unfinished Biography. Ravan Press 1995.)
We might want to be with the person we love so much as they take their last breath. But the stats from end-of-life caregivers is that most people “slip away” when they are alone. “I just went for a coffee and he was gone,” a friend of mine told me of her father’s dying.
“When the nurse from hospice came that morning, she said she had seen before that people need space to die, that it is a most private experience. She suggested that I give dad this space… I sat in the room next to Dad, about three metres from the bed where I could watch him, but no longer in his line of sight. Immediately, Dad’s breath started to deepen and slow…”
The second question emerging concerns the extraordinary progress that we have made in medical science. Is Madiba indeed breathing, or is a machine breathing for him?
People have possibilities, now more than ever before, of receiving treatment that extends their life. I remember Joe, in those last heart-wrenching 15 days, being hooked up on IV hydration. He was restless and he had to pull along this pole on wheels on which hung the sachet with tubes and the needle inserted into a vein in his wrist.
He disconnected the tubes and was adamant that he wanted no further interventions. He had reached the point of wanting to die sooner rather than later.
Lisa Wade, PhD, tells us that ordinary people agree to interventions suggested by doctors, which doctors themselves rarely choose when it comes to their own end-of-life decisions. Her sample data indicates that eight out of 10 doctors would opt for pain medicine.
However, very few (less than 10%) said they would want CPR, dialysis, blood transfusions, feeding tubes and antibiotics as end-of-life interventions that might extend their lives.
So what is it that doctors are not telling us? In terms of their Hippocratic oath, they feel an obligation to extend life by all means.
And yet when it comes to their own lives, they make well-informed decisions not to accept the very interventions they offer to others. Are they in a better place of acceptance of death as part of life than we are?
And do we need to go back to a place in which our ancestors saw doctors as healers whose role was to help you towards life or death?
We… need a changed perception of doctors, armed as they now are with technological marvels that are always increasing… Perhaps the new generation is learning, that helping someone to die… is part of their compassionate role, their age-old role as the easers of suffering and, at the end, the easers of death.
(Easeful Death by Mary Warnock and Elizabeth Macdonald)
Madiba, I did not think it was possible for you to give us more. But you are giving us all a precious parting gift. You are making us think about the way you are dying, and how we need to get better at talking about death and dying in our society.