LIVE BY DESIGN | Why SA’s Bill of Rights should also secure legal right to dignity in final days

Empty hospital bed.

Trigger warning: This article contains graphic depictions of the death of a colon cancer patient and is not suitable for sensitive readers. 

On this 2024 Human Rights Day, so close to our marking 30 years of democracy, I have been listening to the radio while picking up family who arrived to spend the school holidays with us.

This special occasion has generated both celebration and activism.

Arts Alive has organised a four-day programme at Constitution Hill. This morning began with one thousand drums drumming for Palestine. There is a compelling lineup: a film festival, poetry, theatre, music, exhibitions, a market, a book fair, and a programme of children’s activities.

There is such national pride in what we can celebrate: equality, freedom of belief, freedom of expression, freedom of association, freedom of assembly, among many others.

Speaking in Sharpeville, President Cyril Ramaphosa saluted those who lost their lives in the bitter fight to end centuries of inequality. He noted the need to protect hard-won gains, including the rights of those who identify as Lesbian, Gay, Bisexual, Transgender and Queer. He called out those he described as reactionary for lobbying to cancel LGBTQI+ rights as reactionary. Sadly, such a reactionary stance prevails in several African countries.

As I pack groceries for a weekend away, the radio host asks the listeners: “Which of your human rights feel secure to you and which do you feel are at risk?”

A caller, Karabo, says his right to feel safe and secure is not fulfilled. As a father, he cannot allow his son to play outside in the street unsupervised, so he takes out his camping chair and sits watching. He hopes that this will no longer be his family’s reality in five years.

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A woman, who chooses to remain anonymous, says once winter sets in and the days get shorter, she will have to give up on running. The route she runs, in the heart of affluent Sandton, has streetlights that seldom work. As a woman, exercising her right to exercise freely will become simply too dangerous.

Mapi and I are unapologetic advocates for “life-affirming conversations about mortality”. We would have added a layer to the question if we had called in.

For us, it is not about what human rights we consider at risk; instead, it is about a human right that has not yet been fulfilled. The right to dignity – not only in life, but also in death.

During the week, I interviewed the former chief operating officer (COO) of a chain of hospitals. He spoke of how fragile patients’ rights are in our country – that, in his experience, doctors act with an assumed authority that their instructions about treatment should prevail – and that any patient who has the temerity to voice dissent is regarded as being difficult and the family is bullied into submitting. There are those who – when given the patient’s Do Not Resuscitate order (DNR) – refuse to respect it.

In South Africa, your DNR does not have legal standing – although some doctors will honour patients’ rights and fulfil your wishes.

The COO advised Mapi and me that we should collaborate with progressive lawyers and set up a legal service to intercede on patients’ behalf. He noted that people who do our course, Live By Design – Finish Strong, have done a great deal of thinking about their end-of-life wishes, and they deserve support to ensure these wishes are honoured.

The COO also spoke to me about the hospital patients he has seen who have been sent home to die. One such patient was his mother-in-law, Mariella. She’d had colon cancer for two years.

If “nature had taken its course”, she would have been dead within months, but medical advances gave Mariella blessed extra time, and she was able to celebrate family milestones. The removal of the cancerous colon left her unable to process food. Doctors declared there was nothing more to be done. She must go home and die there.

It took Mariella 21 more days to die. The effects of dehydration and starvation were awful to witness, the COO told me.

He has seen suffering in hospitals – but said that, when it is your relative, it’s much harder. First, there were headaches, confusion, and a dry mouth. Her dry skin was inelastic, and her eyes sunk inwards. At a later stage, she was delirious. Then, her kidneys began to fail.

She was a mere 26 kilos when she died – around the weight of a six-year-old child.

It does not need to be this way. If Mariella had the good fortune to have been a citizen of the Netherlands, Belgium, Colombia, Luxembourg, Canada, Switzerland, Guernsey, Japan, Albania, or lived in the USA states of Washington, Oregon, New Mexico, Montana or California, she and her family could have requested and qualified for the dignity of Medical Assistance in Dying (MAID).

Quebec introduces bill allowing advanced consent for assisted dying

Our country is a strange mix of political courage and cowardice.

When it comes to LGBTQI+ rights, there is courage. When it comes to a progressive policy, such as MAID, to support the human right of dignity, politicians talk about what they say is the will of God. Others are pragmatic.

Passing a law to support dignity in dying may be unpopular, and they do not want to lose voters.

Medical advances have long ensured that we continue to live when, decades ago, that very same illness would have led to death. But medicine can also prolong suffering.

Canadian politicians in Quebec, which is majority Catholic, assumed the Quebecois would not support MAID. However, they held a provincial-wide series of town hall consultations where people shared their stories of witnessing end-of-life suffering. Many wept. There was unexpected popular support for MAID, and the Canadian government changed the laws.

As South Africans, we take justifiable pride in our progressive Bill of Rights. It’s time for our progressiveness to include medically assisted dying in certain circumstances.

Our Bill of Rights mentions dignity as a right. Surely, this cannot be limited to dignity in our everyday lives. The Bill of Rights must also secure the legal right to dignity in our final days.

We need the possibility that the indignity of prolonged suffering can be foreshortened.

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