‘Everything is hard — death is better than living’: Ten years on and still fighting for the right to die

For more than a decade, 76-year-old Dieter Harck has been fighting for the right to choose how he dies.

Diagnosed with motor neuron disease — a progressive and incurable condition that gradually strips the body of movement and function — Harck says he is living through a prolonged physical decline that he fears will ultimately rob him of his dignity.

This week, nonprofit organisation Dignity SA approached the North Gauteng High Court in a landmark legal bid to decriminalise and legalise medically assisted dying in South Africa. The application seeks to have the current common law prohibition declared unconstitutional and invalid.

Harck, from Somerset West, is among a growing number of South Africans advocating change, arguing that dignity, compassion and personal autonomy should extend to the end of life.

Speaking with difficulty, he told the Sunday Times that he has lost the use of his arms and legs.

“Everything is hard. Every person should have a choice when they are terminally ill and feel that death is better than living because they face unimaginable suffering. In life, we have many choices,” he said.

“We are happy that this is going to court. We understand it may not be for everyone. We don’t judge those who are against it, and we hope they don’t judge us.”
— Lynne Grubb, partner of Dieter Harck

His three adult children support his bid, he added.

Over the years, he watched friends with the same condition deteriorate and die — experiences he described as deeply traumatic and inhumane.

“I would love to die peacefully at home, surrounded by my family,” said Harck.

His partner, Lynne Grubb, said his condition has steadily worsened.

“Our friends have died, and their deaths were very inhumane and painful. He has been fortunate to have a slower progression, but his life is deteriorating every day. He has asked several doctors to assist him in ending his life, but they cannot help because it is against the law,” she said.

“With this condition, everything shuts down. The mind is still working, but the body is failing.”

Grubb said the idea of medically assisted dying had not been difficult for their family to confront. “We are happy that this is going to court. We understand it may not be for everyone. We don’t judge those who are against it, and we hope they don’t judge us.”

For the family of Craig Schonegevel from Gqeberha in the Eastern Cape, the issue is painfully personal. Schonegevel died by suicide in 2007 at the age of 27, after doctors refused to assist him in ending his life. He had been diagnosed at the age of one with neurofibromatosis type 1, a condition that can range from mild to life-threatening.

“At first, we hoped he wouldn’t be severely affected, but by the age of seven, those hopes were gone,” his mother, Patsy, told the Sunday Times.

He underwent brain tumour surgery, followed by three more operations in London. During one procedure, he lost a kidney, and his remaining kidney had to be supported by a vein taken from his leg.

Despite co-ordination challenges and learning difficulties, Craig persevered. He attended a special-needs school, endured bullying, and eventually qualified as a personal trainer — an achievement his mother says made him immensely proud.

But just as he was preparing to start his own business, his health deteriorated again. He developed severe abdominal complications linked to earlier surgery.

“One day, he asked us to sit down. He told us he wanted to go to Switzerland for an assisted death — a more gentle option than suicide,” she said, fighting back tears. “He wanted his father and me to hold him as he took his last breath, with his favourite classical music playing.”

Instead, the family endured repeated medical crises, late-night emergency hospital visits, and a cycle of hope followed by heartbreak.

“The disease was relentless. It slowly broke down his body, his strength and eventually his spirit,” Patsy said. “One day, he said, ‘If I were a dog, I could have been put to sleep long ago.’ No-one should have to beg for a dignified death.”

Vuya Kabanyane Ilengou, a director at Dignity SA, said medically assisted dying involved a terminally ill or severely suffering patient requesting assistance from a medical professional to end their life.

“The person must be terminally ill or experiencing unbearable suffering that cannot be relieved by palliative care. They must also be mentally competent and fully informed,” she said.

It can be done by self-administration, where a patient takes prescribed medication themselves, or by administration by a doctor.

There are established ways of assessing whether a patient’s decision is voluntary and informed. Assisted dying would not be different from other end-of-life decisions, such as withdrawing life-sustaining treatment or increasing pain medication that may hasten death
— Prof Willem Landman, Dignity SA co-founder and chairperson and

”Everything happens within a medical context; it is not about someone acting on impulse or during a temporary crisis,” she said.

Associate professor Joseph Raimondo, a neuroscientist and head of the division of cell biology at the University of Cape Town, said the debate must also consider the state of the health-care system.

“There are deep problems in our health system. We need significant investment in quality health care and palliative care,” he said. “But assisted dying can be part of building a compassionate society. It is not complex or expensive; it requires political and societal will.”

Prof Willem Landman, chairperson and co-founder of Dignity SA, said concerns about coercion and consent are valid, but not unique.

“These are questions medical professionals already navigate at the bedside every day,” he said. “There are established ways of assessing whether a patient’s decision is voluntary and informed. Assisted dying would not be different from other end-of-life decisions, such as withdrawing life-sustaining treatment or increasing pain medication that may hasten death.”

Landman added that the question of who qualifies — whether limited to terminally ill patients or extended to those with chronic, nonterminal suffering — would ultimately be decided by parliament.

“In our application, we do not limit it to terminal illness. There are forms of suffering that are not terminal but are still profound and deserving of consideration.”

Dignity SA has submitted 15 affidavits from foreign experts, alongside input from local medical professionals, legal experts and senior counsel. The organisation is asking the high court to: