Live by Design is a weekly News24 column by Dr Helena Dolny and Mapi Mhlangu on mortality and the conversations around it.

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WARNING: This article includes themes of suicide and physician-assisted suicide which may be triggering to some readers.

Carol’s predicament

A few days ago, 63-year-old Carol de Swardt travelled to Pegasus clinic in Switzerland for an assisted death. She requested 31st January as her day to die. She will first have been given an antiemetic to prevent vomiting and later a sufficient dose of a fast-acting barbiturate such as pentobarbital, causing death within 15-30 minutes. The medical staff and any family or friends in attendance will not be treated as criminals. They are acting within the law.

Her cancer treatment resulted in a leg amputation after radiation treatment. After a lengthy legal battle, Carol was awarded R4 million in 2020, but the money is cold comfort to her in a situation of intractable physiological and psychological suffering.

She said: “I have lost my will to live,” that she has no quality of life, that she can no longer “do the things that I used to, that I love, but I am disabled. All these things were taken from me – fishing, swimming, working in my garden”.

In 2023, Carol decided she wanted agency and the autonomy to say “enough” to her treatments and suffering. However, assisted dying is currently a criminal offence in South Africa. She decided to apply to go to Switzerland using some of the funds awarded.

South Africa’s inhumanity towards the terminally ill

Carol, as a South African with a terminal illness, should not need to travel to a foreign country to be able to die sooner rather than later.

Earlier this year, we covered the story of Klaas de Jonge, Dutch anti-apartheid activist, residing in the Netherlands, which supports physician-assisted dying for those who qualify. Klaas set May 5th as his date to die.

In the weeks leading up to this date, friends travelled to his home to say goodbye, and he held several gatherings online. On May 5th, the physician arrived, and Klaas, surrounded by loving family, swallowed the barbiturate and died peacefully within a few minutes.

Carol has had to leave her home and get on an aeroplane to another country. She has not been at home for her last days; there have been no friends dropping in for a final farewell.

But Carol is one of the fortunate few – the financial compensation meant that she had the funds. It is estimated that the Switzerland exit option requires you to budget about a quarter of a million rand to cover travel, accommodation, medical expenses, cremation, and considerably more if you wish for your body to be repatriated to be buried at home.

And what about those terminally ill who cannot afford or do not want to travel?

People sometimes reach the point where suffering outweighs any joy in staying alive. They know the law and know they cannot be with loved ones – they do not want to implicate others.

Craig Schonegevel suffered from neurofibromatosis from the age of seven. It is a lifelong disease that can result in intractable suffering, as mapped out by Marianne Thamm in her biography, The Last Right – Craig Schoenegevel’s Struggle to Live and Die with Dignity. 

In 2009, by the time he reached 28 years old, he had had enough of drugs and operations. He ended his life alone without the comfort of being with loved ones. Taking care to act alone and not to implicate his parents – one night, Craig swallowed several sleeping pills, covered his head with two plastic bags kept in place two elastic bands around his neck. His parents found him dead the next morning.

IFP MP Mario Oriani-Ambrosini campaigned for the approval of alternative cancer therapies, including medical marijuana. Unfortunately, palliative care treatments for the alleviation of suffering have limited impact – especially if retaining consciousness and the ability to think and talk is important to you. In 2014, IFP MP Oriani-Ambrosinini, then in the last stages of terminal lung cancer, decided he needed to bring an end to his suffering. Alone in his study, he shot himself – family members heard the firearm discharged.

Their stories could have a different, more humane and dignified ending if we had a law that supported physician-assisted dying.

Our constitutional supports dignity and autonomy

The status of the law is out of alignment with the South African constitution.

SS10 of the Constitution on Human Dignity:

“Everyone has inherent dignity and the right to have their dignity respected and protected.”

SS12 in Freedom and Security of the person:

“12(b) Every person has the right to freedom of the person which includes the right to security and control over their own body.”

What discussion has there been in South Africa?

After the new democratic dispensation, Parliament passed the Termination of Pregnancy Act. It put in place a commission to study end-of-life. The commissions finding have gathered dust for 20+ years. After passing one controversial law – there was no appetite to engage on a second issue.

Why are some people not supportive of assisted dying?

• People say they are afraid that a policy on assisted dying could, in practice, be abused – and that the elderly might be “euthanised” or other vulnerable groups.
• Others cite their religious beliefs and say that dying is in the hands of God.

What do those in favour say?

• That assisted dying is a human right, and that people should have not only the right to refuse treatment, but to choose to bring forward the date of their death.
• That there is now 20 years’ experience from other countries and American states to draw on as to what safeguards can be instituted to ensure there is no abuse.
• That medical advances now supersede the hands of God, that it is now possible for people to be on life support, even in a Permanent Vegetative state.

Public opinion and constitutional alignment

The late Arthur Chaskalson – President of the Constitutional Court 1994-2001 – spoke about unpopular issues.

“Public opinion may have some relevance – but, in itself, it is no substitute for the duty vested in the courts to interpret the constitution and uphold its provisions without fear of favour. If public opinion were to be decisive there would be no need for constitutional adjudication.”

NOW is the time for Parliament to catch up with what is progressive in the rest of the world. Politicians need to put aside personal opinions and respect human rights as enshrined in our constitution. A new law is needed to decriminalise assisted dying.

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