‘Let us die with dignity’

“How can someone who doesn’t experience what you experience, dictate to you how you must die?”

This was Dieter Harck’s question yesterday when the 71 year old appeared before a special commission to testify in support of the bold legal challenge he and palliative care specialist Dr Suzanne Walter have launched against the country’s laws around assisted dying.

They want the law changed to give effect to their rights to self-determination and allow for both physician-assisted suicide – in which a doctor gives a patient a lethal dose of medication to administer by him or herself – and physician-assisted euthanasia – in which the doctor administers the medication for his or her patient.

In the interim, they also want the courts to declare that any sound-minded, terminally ill person can approach them for an order for assisted death. And they want such an order for themselves.

The case has yet to be set down for hearing but Harck, who has motor neurone disease, and Walter, who has multiple myeloma, fear they might not live long enough for the trial. So a special commission has been set up to hear their evidence.

Harck took the stand yesterday. The disease is affecting his speech and his testimony was slow and laboured. He loved life, he said, but he was afraid of what lay ahead. “That my love of life becomes a fear of life.”

He told the court how his life had changed since he was diagnosed in 2013. Once an avid sportsman who ran marathons and enjoyed hiking, it now took him three hours to get ready in the morning. He said his condition would get worse until his diaphragm failed and he stopped breathing – and this was not how he wanted to leave this world.

“What is your response to the suggestion palliative care will be enough?” Harck’s advocate Claire De Witt asked him. “What I have witnessed so far does not indicate an motor neurone disease death is peaceful,” he said.

He became emotional, recalling visiting a young girl with late stage motor neurone disease. “She was totally paralysed. She could only speak with the help of an eye gazer machine and when Lynne [Harck’s partner] asked her what she feared the most, it was not being able to die,” he said.

Harck believed the choice to end one’s life on one’s own terms should be his or hers to make. “Right through life, we make our own decisions and are accountable for those decisions. But when it comes to end-of-life, we are supposed to let this personal decision be made by someone else.”

The Health Professions Council of SA and the ministers of health and justice are opposing the case.