‘Allow us to die on our own terms’, two ask special commission

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

This was the question on Monday, when the 71-year-old retiree appeared before a special commission to testify in support of the bold legal challenge he and palliative care specialist Dr Suzanne Walter have launched to 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 (PAS) – in which a doctor gives a patient a lethal dose of medication to administer him or herself – and physician-assisted euthanasia (PAE) – 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 allowing for their assisted death. And they want such an order for themselves.

The case has yet to be set down for hearing but Diethelm Harck – who has motor neurone disease (MND) – and Walter – who has multiple myeloma – fear they might not live long enough to testify at trial. As a result, a special commission has been set up to hear their evidence in the meantime.

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Harck was the first to take the stand after proceedings commenced on Monday. The disease has already begun taking hold of 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 first 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.

And, he said, his condition would only get worse until eventually 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.

“Obviously I don’t know what I can expect but what I have seen and witnessed so far does not indicate that an MND death is peaceful,” he said.

He became emotional, recalling having visited a young girl with late stage MND.

“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.

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Harck believed that the choice to one’s life on one’s own terms, should be his or hers to make.

“Right through life, we make our own decisions and we 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,” he said.

The legal representatives of the Health Professions Council of South Africa (HPCSA) and the ministers of health and justice are all opposing the case and Harck is due to take the stand again on Tuesday for cross-examination.

Later in the week, Walter is also expected to take the stand.

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