OPINION |to be human is to choose: why sa needs the courage to legalise assisted dying

By Dawid van der Merwe - Living with Parkinson’s since 2010

I was diagnosed with Parkinson’s disease fifteen years ago. Every morning since then has begun with a decision: how to face painful, rigid muscles, shuffling gait, and the daily struggle with tasks that most people do on autopilot while planning their next Nia class or padel match. Every day brings the fear that my own mind will betray me, and the exhausting effort to hide it all from friends and family because I dread being a burden.

Is today the day I wet my pants in the adult diaper aisle at Dischem, choke on a piece of undigested ribeye at Hussar Grill, because of a catastrophic failure of the epiglottis, or break my hip during an unscheduled fall on the mall escalator? Stage 4 PD is a horror show, where your autonomy over all bodily functions except those on self-drive, like the heart and lungs, is slowly but relentlessly stripped from you. It’s like being buried alive. I don’t see any dignity or redemption in breathing through that. It can’t be called “living.”

Like thousands of South Africans in Parkinson’s support groups on Facebook, where we swap dark jokes and tiny triumphs, I know what it’s like to watch your future shrink while your family’s burden grows.

In one group, a woman writes, “I wish he could just slip away in his sleep. He’s begged me to stop feeding him. He’s tired. We’re tired.” Another carer posts, “I can’t afford another hospital bill. He can’t swallow. We’re just waiting.” These aren’t abstract debates. These are real families, stuck between love, guilt, hope, and dread.

So, when opponents say, “No, we cannot allow it. We have palliative care, we have morphine and four hours of professional counselling to help you cope with your private hell with dignity,” I want to say, “I am grateful for good palliative care. But it cannot fix everything for everyone.”

𝐁𝐢𝐨𝐥𝐨𝐠𝐲 𝐢𝐬 𝐧𝐨𝐭 𝐭𝐡𝐞 𝐨𝐧𝐥𝐲 𝐰𝐨𝐮𝐧𝐝
For many of us with degenerative illnesses like Parkinson’s, MND, ALS, or advanced cancer, the worst suffering isn’t always physical pain. Medicine can dull pain. It cannot dull the terror of watching yourself disappear piece by piece.

People would say, “But the body wants to live.” True, the body does what it does. But we are not just bodies. We are minds, relationships, and meaning. Some people can bear decline with grace. Others cannot. They don’t want to starve slowly when swallowing fails. They don’t want to be sedated into twilight that drags on for weeks or months, with tubes keeping them alive for others’ moral comfort.

If that is your choice, I respect you. But please respect mine too.

𝐖𝐢𝐭𝐡𝐡𝐨𝐥𝐝𝐢𝐧𝐠 𝐭𝐫𝐞𝐚𝐭𝐦𝐞𝐧𝐭, 𝐛𝐞𝐭𝐭𝐞𝐫 𝐟𝐨𝐫 𝐰𝐡𝐨𝐦?
Some medical practitioners say, “If it’s unbearable, we can withdraw treatment. We can sedate.” So, the law lets me starve. It allows my organs to shut down in slow motion, and happily places me in a “vegetative” state weeks before my last breath. But it won’t let me say, “Enough. I’m ready. Help me go gently.”

How is forcing someone to slowly dehydrate to death more ethical than a calm, conscious farewell, surrounded by family, with a vase of cheerful daffodils on the bedside table, and Monteverdi’s “Lasciatemi morire” from your Spotify “Last Hurrah” playlist, gently nudging you across?

𝐓𝐡𝐞 𝐡𝐢𝐝𝐝𝐞𝐧 𝐜𝐨𝐬𝐭: 𝐟𝐚𝐦𝐢𝐥𝐢𝐞𝐬 𝐚𝐧𝐝 𝐟𝐫𝐚𝐠𝐢𝐥𝐞 𝐡𝐞𝐚𝐥𝐭𝐡𝐜𝐚𝐫𝐞
Let’s talk about the dung beetle in the room, money. End-of-life care is expensive. Prolonged hospital stays, sedatives, feeding tubes, carers, transport, these can drain life savings in weeks. Families are traumatised long after. Where is the justice and dignity in that?

I have always tried to be a nett producer, to add value to my world. I promised myself and my family that the day I become a nett consumer, when others have to take custody of my faculties and body to allow for a so-called natural (moral) death, it’s no longer my life, and I would want out. That is my choice, but I also choose to respect your choices, I want for you what you want for you.

𝐇𝐮𝐦𝐚𝐧 𝐝𝐢𝐠𝐧𝐢𝐭𝐲, 𝐚𝐬 𝐝𝐞𝐟𝐢𝐧𝐞𝐝 𝐛𝐲 𝐭𝐡𝐞 𝐡𝐮𝐦𝐚𝐧
Some believe “dignity” means never shortening life. Others believe it means we should have a say when medicine has run out of miracles. Both views deserve respect. However, only one currently has the force of law.

I’m asking for the right, when truly terminal, to choose which burden I carry and which I lay down. No coercion. No pressure. Just a final act of self-authorship.

𝐀 𝐰𝐢𝐬𝐞 𝐧𝐚𝐭𝐢𝐨𝐧 𝐝𝐨𝐞𝐬 𝐛𝐨𝐭𝐡
Countries like Canada, the Netherlands, Belgium, and parts of the US show that strong palliative care and carefully regulated assisted dying can coexist. Safeguards and compassion can work together.
South Africans wrote one of the world’s greatest constitutions to protect dignity, equality, and freedom. Let’s not abandon that promise at the threshold of death!

𝐓𝐨 𝐝𝐢𝐞 𝐚𝐬 𝐬𝐚𝐩𝐢𝐞𝐧𝐬
Some of what makes us human is our capacity to imagine our end, and choose, when the time comes, what it means for us and those we love. Palliative care or self-death are currently the available choices. But when even the best fails, the law must trust us enough to choose the least traumatic path for our unique personal humanity.

Not everyone wants that choice. But many of us do. That’s what makes us “sapiens, the wise ones.” May we live wisely, and die wisely too—peace out.

Dawid van der Merwe
Somerset West

---