The Courage to Come Out
Rayne Stroebel is an Extraordinary Professor at North West University's Opentia Research Unit for Ageing and Intergenerational Studies and the Founder and CEO of GERATEC, a care service company that is dedicated to improving the life and well-being of older adults in South Africa. In this moving piece, he reflects on medical assistance in dying (MAiD) and the power of being witnessed...
In his book Being Mortal, physician Atul Gawande recounts his father’s final battle with cancer. His father, a doctor himself, had three non-negotiable conditions for accepting further treatment: he wanted to watch soccer with his grandchildren, enjoy chocolate ice cream, and maintain control over his bodily functions. When those guarantees vanished, so did his desire for intervention.
How many of us have asked ourselves: What defines my quality of life? What do I value more than the mere act of breathing?
I will never forget a talk I gave last year to a gathering of 100 people on the right to a dignified death. Even in affluent, educated circles, the taboo surrounding mortality remains a "deadly silence". But that silence was shattered by a man in the front row.
He was a historian, a man whose life had been dedicated to deep thought and the written word. A severe stroke had stolen his mobility and his ability to communicate his brilliance; he now felt like a burden to those he loved. He had already attempted to end his life several times. With immense effort, he stood up and delivered a heartbreaking plea for the right to a dignified end. As tears streamed down his face and his wife sobbed beside him, the room held its breath.
The raw emotion was a testament to a desperate need: the need for legislation that allows a person to choose their exit when their lived reality becomes unbearable.
The tragedy of our current legal landscape is that it forces families into impossible corners. This man’s wife asked me if he should simply stop taking his life-sustaining medication (blood thinners and cholesterol pills, in his case) in the hope that the next heart attack or stroke would be fatal. My reply was a sobering reflection of our reality: that is a game of "South African Russian Roulette". Without medical assistance in dying (MAiD), a patient doesn’t know if their next "episode" will bring the peace they seek or leave them further incapacitated and even more trapped
The morning after our talk, I received an email from his wife. She noticed a sudden relief in her husband. By "coming out" with his desire to die, and by being seen and validated without judgment, his perspective had shifted. He felt lighter.
This is the "gift of witnessing". When we stop judging the desire for death and start listening to the reality of suffering, we offer a profound form of care.
We are privileged to live in a constitutional democracy that protects the marginalised. We have fought, for example, for the rights of those living with HIV/AIDS and for the LGBTQI community so they no longer have to lead lives shrouded in secrecy and fear. Yet, terminal patients and those in intractable pain are still forced into the shadows. The promise of our Constitution, the promise of human dignity, must be extended to the end of life.
It begins with the courage to start the conversation. It ends with a law that respects the lived reality of those who, like this historian, have nothing left but the desire for a peaceful goodbye.
- If you too would like to support DignitySA's campaign to decriminalise medical assistance in dying in South Africa, please sign our petition at https://awethu.amandla.mobi/petitions/urgently-decriminalise-medical-assistance-in-dying
