LIVE BY DESIGN | Why I wish I could forget the last memory of my mom

The last time I heard my mother’s voice was on 30 July 2004.

Her harrowing howling sound pierced through the corridors of the hospital. Cancer had spread to other parts of her body resulting in multiple organ failure.

On this day, I had made a special arrangement with the hospital to see her before I returned to Johannesburg. When I eventually reached her hospital bed, she was unresponsive but was silently clenching her teeth as she grappled with intense abdominal pains.

Doctors told my family and I that there was nothing more they could do for her except try to manage her suffering with various medical interventions such as artificial feeding, hydration and intravenous antibiotics. To me it seemed they were prolonging her suffering instead. Yes, the doctors meant well, that is what they were trained to do – to save lives irrespective of the quality of life that their patients will have.

I couldn’t bear to witness her agony any further. As bad as it sounds, I wanted her to die. I lacked the emotional strength to endure her suffering. I felt a strong desire to end her suffering by disconnecting all life-sustaining devices that were only prolonging her agony.

The moment I stepped away from the bed, the harrowing sounds started again. This is the last memory I have of my mother. It’s traumatic and it’s a memory I don’t wish for anyone.

She died five days later.

A photo of Mapi Mhlangu’s mother. (Courtesy of Mapi)

How I wish my mother would have died 

I wish my mother had an advanced health directive. It is a form that you complete to indicate your medical choices in a situation when death is a real possibility. You can fill it in as soon as you are 18 years old. Death, after all, may come at any time due to an accident, an acute infection, or a terminal illness.

The United States of America calls this Advance Directive (AD) a Physician’s Orders on Life Sustaining Treatment (P.O.L.S.T) or a M.O.S.T (Medical Orders of Sustaining Treatment) whereas the United Kingdom refers to it as a Living Will.

This document could have spoken for my mother when she could no longer speak for herself during those last tormented days. Her health care proxy, (sometimes called a “health sponsor” or a person nominated to have your “power of medical attorney”) could have articulated her wishes around artificial feeding, use of antibiotics, hydration, preferred place of dying etc.

Although the advanced directive document is not currently recognised by law in South Africa, there are doctors who will respect your healthcare wishes. Some GPs encourage their patients to deposit a signed version of the document with your medical file as well as ensuring that you have a designated health care proxy who can speak on your behalf if need be. After all, the right to dignity as enshrined in the constitution surely includes the right to refuse medical intervention.

My mother and I had many complex conversations in the months leading up to her passing, but we never touched on the subject of assisted dying as means of ending her suffering. How could we have? This is not only a crime in South Africa but it’s a taboo subject in a highly religious country like ours. But I’ve always wondered if she would have wanted access to euthanasia as means of ending her suffering.

Debate around the right to die

The right to die is a complex and contentious issue that has sparked much debate among lawmakers, medical professionals, theologians and the general public.

At its core, this issue centres on the right of individuals to make their own decisions about ending their lives in circumstances of terminal illness, severe pain or suffering, or other end-of-life conditions.

One of the main arguments in favour of the right to die is the concept of personal autonomy.

Supporters argue that individuals should have the right to choose how and when they die, and that denying this right is a violation of their freedom and dignity. They argue that the Hippocratic Oath proposes that doctors should be “healers of life and easers of death.”

Supporters argue that medical technology has advanced to the point that individuals can now control their own deaths in a humane and compassionate way.

Opponents of the right to die argue that it is morally wrong to intentionally end a human life. They also raise concerns about the potential for abuse, particularly in cases where vulnerable individuals may be coerced into choosing death. Additionally, opponents argue that the focus should instead be on improving end-of-life care and palliative care options.

Several countries have already legalised assisted dying, including the Netherlands (2002), Belgium (2202), and Luxembourg (2009) as well as several US states. Switzerland allows assisted suicide for both Swiss residents and foreigners. Canada legalised assisted dying in 2016, after an extensive public “town hall” consultation process where many people shared stories, such as mine, about their being witness to loved ones dying inhumanely. Canada’s Supreme Court ruled into law that individuals with a “grievous and irremediable” medical condition can end their life with the help of a doctor.

In 2018 IFP Mario Oriani-Ambrosini, parliamentarian and advocate for assisted dying, brutally shot himself in his own home to bring attention to the issue. He suffered from terminal lung cancer and believed that individuals should have a right to choose to die with the help of medical professionals. He had proposed a private members bill, called the ‘End of Life Choices” bill. The bill faced opposition and was never passed into law.

However, the issue remains very controversial. Our country in 1996 acted courageously and passed into law the right to terminate a pregnancy. The right to die with dignity can be seen as fitting the same category – the right to choice over what happens to our own bodies.

What I know is that given a chance, if I were suffering from a terminal illness, I would choose assisted dying, and spare my loved ones from the experience I had with my mother.