Euthanasia: it's not fair to keep someone alive because you can't let go

To leave the world as an intentional act is a curious thing. It sits comfortably on both sides of the table of ethics and agency. At one end, the seating is occupied by awe and respect for the final coming of relief. Courage sits between those. Admiration even. For the willingness to leave a world behind and reach a possible new plane of existence, without pain.

But at the other end there is fear, loathing, outright repulsion and sin. On the other side of the table is where cowardice takes its place, the belief that to leave this life behind is an act of weakness and in many cases, just plain selfish.

I've been thinking about euthanasia and assisted suicide a lot recently.

I have always been a firm believer in a human being's right to die. I stand firmly by 19th-century philosopher Arthur Schopenhauer when he said: "It is quite obvious that there is nothing in this world to which every man has a more assailable title than to end his own life and person."

I believe that human beings have a right to die, just like the right to their life is theirs alone. No-one should choose when or whether or not to end it. The privilege of living or dying lies with the individual. Not with society, not with religion and not with family.

Suffering is terrifying. The sight of suffering is terrifying.

Often more painful than an illness is the feeling the patient has that they do not want to be a burden to others. They do not want to be an invalid. They do not want to lie in a bed and become a lifeless, dependent affliction. They do not want to watch themselves become the person they never wanted to be and suffer in what must seem like perpetual misery and the deep unhappiness of a life not worth living until, eventually, their breath gives in and they need not be punished by their own thoughts anymore.

Winter in Joburg seemed particularly bitter last year. I travelled light, having just had shoulder surgery, and when I landed at OR Tambo winter caressed me in the dark recesses of my bones. My mom had to lend me her black puffer jacket to keep warm on our nightly trips to my aunt's house, where my grandmother (Ma) lay lightly clothed under a blanket. A death bed they call it, but the mattress seemed to spin with the frantic scurrying of family members willing that death bed back to life.

Ma was always fair in complexion, but she seemed paler from the pain of old age. Her veins were bluer and her eyes seemed cloudy, as though she was able to look only back at herself, disappointed by time's treatment of who she once was, and what she had become. No more hungry bellies to feed, no more conversations to eagerly listen to, no wind of advice to carry over the crisis. Just a body, burdened by its own existence and the presence of mind to witness the eyes of pity and words of desperation around her. "Does tea have caffeine? Maybe she should have some, for energy?", "Have you checked her blood pressure again?", "Don't let her sleep, talk to her."

The words heated me up faster than the jacket I'd borrowed. When did it become fair to keep a woman alive because of our own inability to let go? The ones who suffer most when someone dances with death are those who get left behind.

Death is a graceless thing. It summons up the best and worst in people and most times we don't know the difference between the two. The act of "doing everything we can" extends itself beyond the boundaries of extensive care and can very easily slip into the territory of torture. The line between the two becomes blurry with both the devotion to death and the disapproval of it.

In my case, in that room, where we sat in a circle and took turns lying next to her on the bed, I felt my heart shut down and my mind wake up. Or maybe it was the other way round? Who knows what it's called when you want those around you to stop helping and to start leaving her alone?

What is it called when you want the sweet breath of the angel of death to rest at the feet of the grandmother you love and carry her to the fertile ground of relief? What is it called when you want family members to stop calling for the house doctor, who you're convinced will do anything they say to keep her alive because he has money to make? What is it called when all this means that you want her to die?

My grandmother's skin started to wear thin from the drips she was put on. Her breathing bubbled with every gasp into the oxygen tank she had to have strapped to her body every couple of hours, and her belly was bruised from some home-administered inoculation that the doctor prescribed for who knows what.

I stayed in Pretoria for four days. On the first day, she looked at me and said "Haji, you came," and she smiled. "Yes Ma, I came," I said, and smiled back and took her hand.

'PERMISSION TO DIE'

Socrates said some lives are simply not worth living. Like ones filled with pain, prolonged unhappiness, suffering and misery. He said that when you take this view, you're more likely to put yourself in the shoes of the ones who have reached that point. The point where screaming to a foreign god to whom you plead for death is better than begging a common god for the strength to survive - the point where you cannot return to joy and happiness and tolerability. And this point is not reserved for the trauma of the body but exists for the mind as well, when there is seemingly nothing wrong with you physically.

In January last year, 29-year-old Aurelia Brouwers clutched her pink dinosaur, listened to her favourite music and drank prescribed medication in the company of close family members and friends. According to observers, Aurelia's last words were the silence of a serene smile as she drifted into the softness of eternal sleep.

She died in the comfort of her own home in the Netherlands, a country known for having one of the most permissive laws on euthanasia, its 2002 Termination of Life on Request and Assisted Suicide Act.

The Netherlands has strict regulations for granting assisted suicides or euthanasia. The vast majority of those who apply suffer from illnesses such as cancer, heart and arterial disease, and diseases of the nervous system such as Parkinson's and multiple sclerosis.

The country has come under fire for granting Aurelia what can be described as "permission to die", particularly because Aurelia had no terminal illness. Hers was the pain of a deep, dark, black hole. A friend described Aurelia's life as a hundred knives being stabbed into her head. She never had a moment of doubt that she wanted it to end.

If the end is inevitable because depression can and will drive you to suicide then why - as in the case of Aurelia, and as in the case of the Netherlands - not have the choice to die with dignity? If dying is the right thing to do, why not have the right to die?

During the last cold evening in Pretoria - still clad in my mother's puffer jacket - after a substantial amount of additional "treatment" and medication and resuscitation, I held my grandmother's hand again. Only this time, she said nothing.

I found myself saying goodbye to someone who had life, but who had no way to live.

I didn't return for the funeral. I did not want to be an active participant in the circus of life. "She knew I was there when she was able to know it and that is all that matters," I said.

And what else does matter?

Why do we hang on to those we love only to see them suffer more? Instead of letting them go with dignity? It's hard. I know. But life is hard, and sometimes for those who suffer, in whichever way they suffer, living is harder and death is the kindest thing on offer.