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LIVE BY DESIGN | Navigating rights of patients and ethical boundaries: It’s complicated, or is it?

In the aftermath of the thought-provoking column by Helena Dolny, “What do you think is good death?” the discourse surrounding patients’ right to choose how they die has ignited fervent debate. While some argue vehemently against this right, citing health professionals’ perspectives, the nuance and complexity of this issue come sharply into focus.

Drawing parallels from the intricate debates faced by health professionals in matters like abortion, one is compelled to ponder the delicate balance between the demands of the profession and the expectations of those they serve.

Abortion is legal in South Africa, and many healthcare professionals administer this assistance every day. However, it is widely known that many women in South Africa choose to undergo illegal abortions due to encountering resistance from certain health professionals. This barrier often forces women to seek unsafe abortion services, risking their health and wellbeing. A wealth of research in the South African Medical Journal highlights the challenges young girls and women encounter when seeking abortion services. The debate on health professionals’ rights preceded the legalisation of abortion in South Africa, and remains central to discussions about end-of-life decisions.

Respecting the rights of patients is fundamental to providing quality healthcare. Patients have the right to receive accurate, understandable information about their medical condition, treatment options, and potential risks. Patients also have the right to make decisions about their healthcare, including or withholding consent for treatment. Patients’ instructions such as “Do Not Resuscitate” should be respected.

On the other hand, professional healthcare workers also have rights that must be respected. These rights include the autonomy to make clinical decisions based on their training and expertise, free from undue influence or coercion. Respect for their professional judgement, ethical values, and commitment to patient care is essential in fostering a positive work environment that supports delivering high-quality healthcare services. Balancing the rights of patients and healthcare workers is critical to maintaining a harmonious and effective healthcare system that prioritises both patient wellbeing and professional integrity.

Professionals are expected to serve without fear and prejudice. Can you envisage a scenario where journalists decline to cover stories or judges recuse themselves from cases due to personal or religious beliefs?

Consider a journalist who holds starkly contrasting beliefs with a public figure like former US president Donald Trump; their professional duty necessitates covering the story objectively despite personal reservations. Likewise, a judge, though deeply rooted in their faith, is entrusted to dispense fair judgments regardless of their convictions when faced with cases linked to divergent religions. I can hear “it’s not that simple”, but is it? The crux of the matter lies in how various professions grapple with aligning personal beliefs with their responsibilities. Upholding professionalism often requires setting aside personal biases to deliver unbiased and fair service.

Journalists navigate a complex interplay between personal beliefs and professional responsibility as they strive to report objectively on various issues. Balancing subjectivity with providing accurate information can be challenging, particularly when personal convictions clash with journalistic integrity. Ethical dilemmas often arise when journalists must set aside personal biases to uphold the principles of fair and unbiased reporting. In such instances, maintaining transparency about their perspectives while upholding journalistic standards is crucial to preserving public trust in the media.

Similarly, judges face the weighty task of upholding justice while managing their personal beliefs and values. In cases where moral or religious convictions conflict with their judicial responsibilities, judges may be confronted with tough decisions regarding recusal to ensure impartiality. Upholding the rule of law and guaranteeing fair legal proceedings require judges to set aside personal biases and render decisions based on the law and evidence presented in court. Striking a balance between personal beliefs and professional obligations is essential to safeguarding the judicial system’s integrity and upholding the principles of justice.

I believe patients are not asking too much of health professionals when they refuse medication or choose the right to die with dignity.

I request that we reflect on the interplay between professional obligations and personal beliefs and answer this question: How can people ensure that their deeply held beliefs do not infringe upon the quality and impartiality of the service they provide, irrespective of their field?

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LIVE BY DESIGN | What do you think is a good death?

The Greek word, euthanasia is made up from eu, meaning good, and thanatos, meaning death. What would that look like for you?
Conversely, what do you consider a “bad” death?

I ask because I got a call from Cape Talk asking me to comment on the situation of a 28-year-old Dutch woman, Zoraya Ter Beek, who submitted her application for assisted dying. She expects her plans will come to fruition this May. Zoraya is relatively young. From a physical assessment, medical point of view she is healthy and does not have any disease. So why is she applying for assisted dying? When asked she will tell you she has debilitating depression, autism, and a borderline personality disorder. She says her psychiatrist told her: “There’s nothing more we can do for you. It is never going to get any better.”
“But she is so young!” “But there is nothing physically wrong with her!” You can hear the voices of surprise and some of outrage.
It is true Zoraya’s body is young. Indeed, she doesn’t have a dread disease with a limited life expectancy. But for most of us living a good life isn’t about having all our body parts in working order – especially for the elderly, it is more about our mental state of well-being that is the source of our joy and zest for living?

That’s what is so thought-provoking about Zoraya’s situation. Just as physical well-being can be compromised and death can come at any age – so our mental well-being can also be compromised at any age. Yes, it is easier to identify unbearable suffering due to diagnosed physical illnesses and it is so much more difficult to accept that mental unwellness, less tangible, less visible, also produces unbearable suffering – which unfortunately may have no end in sight.
The question arising is why have lawmakers worldwide created a hierarchy of suffering? Why should physical suffering be treated as meriting relief through access to assisted dying whereas the same rights mostly do not apply to the person who is suffering mentally? The Netherlands and Belgium have become the forerunners in considering mental well-being as equal to physical well-being.

I’ve received calls recently from people who are at their wits’ end.

The one person is in the initial stages of Alzheimer’s. He’s in a state of suffering and anxiety because he does not want to live a life in which his body is alive but he can no longer consciously engage with loved ones in the manner to which he’s accustomed. He is vexed, agitated, and wants to advocate for assisted dying for people who have Alzheimer’s. His fear of not dying whilst he is still a decision maker is destroying his pleasure of enjoying what conscious life remains for him. Those around him who love him support his wish for an exit.

The other person lives with her middle-aged sister who is depressed. Every day she drinks, and numbs her mental anguish, and she regularly threatens that she will hang herself. She has tried two unsuccessful overdoses to date.

I understand that lawmakers like tidily defined boundaries, such as the dread disease physical illness (such as cancer) and the length of life expectancy (six months). But life is not tidy. Life is messy. Boundaries blur. Anorexia is not a dread disease, nor is arthritis, but some countries are considering these diseases to be included in the qualifying categories as they are seriously limiting in terms of quality of life.

Cape Talk interviewer Abs (Absalom Kushi) asks, “What are the concerns of those who oppose the legalisation of assisted dying?” It is a relevant question with several answers. Three are top of mind for me: institutional capacity, the psychology of the caring professionals, the vulnerable, as well as religion

If society accepts the right for a person who is suffering to die a good death and wants the medical profession to assist the implementation of such legislation, as with termination of pregnancy legislation, then what capacity building is required? I personally think that one of the biggest challenges to the way we engage with death is the psychological challenge for so many in the medical profession. The training received by medics and nurses working in hospitals is focused on saving and prolonging lives whereas the holistic interpretation of the Hippocratic Oath advocates that the caring profession should be “savers of life and easers of death.”

And what needs to be in place to safeguard the vulnerable: the mentally vulnerable, the physically challenged and the elderly? In the UK, during the Covid-19 pandemic, there were accusations that the elderly in old age homes did not receive exacting standards of preventative care as, possibly, some staff viewed them as “dispensable” members of society. There is a fear that the vulnerable might become pressured to request assisted dying by relatives who don’t want to incur the ongoing expenses.

There’s also the objection to accelerating the advent of death – that death is in the hands of God to decide. Nancy Duff, professor of Christian Ethics at Princeton Theological Seminary offered this question as her response when she addressed a congregation in Johannesburg’s St Columba’s presbyterian church in 2015: “My question regarding assisted death as a Christian is: when death as the enemy brings intolerable suffering that dying, left to its own timetable, will not soon resolve and medical intervention cannot alleviate, why is choosing to hasten one’s death thought to fall outside the will of God?”

The statistics from countries that have passed assisted dying legislation show that as few as 0.02 percent of the population might apply for the right to die. It’s a minuscule number. But I’m reminded that the hallmark of the quality of a democracy is how well it safeguards the rights and dignity of a minority.

Your opinion? Please share. Mapi and I are glad to facilitate this discussion further.

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LIVE BY DESIGN | Let’s embrace intentional citizenship as South Africa marks 30 years of freedom

As South Africa commemorates the 30th anniversary of its inaugural democratic elections held on April 27th, 1994, I have been reflecting on our national journey. The milestone signifies three decades of democracy, encapsulating both achievements and challenges that have shaped the nation. With the upcoming national and provincial elections scheduled for May 29th, the focus […]

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LIVE BY DESIGN | Triumph and legacy in the wake of loss

It’s done! Yes, my work on this earth is complete.

My late big brother’s daughter, Zama Mncube, has fulfilled a prophecy, a dream, and a joint plan we had with my late best friend. She wrote this week to the MaMlambo family WhatsApp group: “It’s official; I am graduating with my master’s degree (management sciences) this year.”

My heart leapt with joy. Yet, I remained seated, contemplating how something discussed by two dreamers in the early ’90s could be achieved by a second generation.

This week marks 23 years since my brother, Bhekuyise Wilfred Mncube (1969 – 2001), perished on 10 April.

I didn’t cry when he died. I wanted to, but there was no time; I had to organise a funeral, yet I was broke, and my father, now deceased, perpetually never had money for his children, dead or alive. By a stroke of luck, my brother’s then lecturer in history, Dr Catherine Burns, was aware of a student’s life policy linked to the former University of Natal.

My brother was pursuing his master’s degree there when he died. The policy swiftly paid out R10 000. My brother’s coffin and transport from Durban to Ulundi, 250 kilometres away, cost a mere R2 000. The rest of the money was used for funeral expenses at home, and I got some change, perhaps R2 000.

I have been flipping that R2 000 to educate my brother’s kids.

Some money was ostensibly used to buy a cow for the upkeep of my brother’s children. I do not remember what happened to that plan; it was my father’s scheme. The true tale centres on my brother’s final wishes.

Days before he died from 47 knife wounds inflicted by thugs for a mere R800 Nokia phone, he sought my help. He said, “If I die, find Zama and reunite her with the family. Bring Nsiko home. Leave Professor with his mother; I trust her.”
Furthermore, he said I must help Nelisiwe (our younger sister) acquire a university education.

Sadly, Zama, set to graduate with her master’s degree in May, was effectively abandoned as a child. The intention may not have been deliberate, but the outcome was the same. She grew up without a father or access to the paternal side of the family. Raised by her single mother, who is also now deceased, Zama’s maternal grandparents died when she was young. Adding to the trauma, by the time she sought her roots after completing matric, my brother had long died.

Thus, she struggled emotionally, and her first foray into university was a disaster. She disappeared from my life for a few years. One day, my late mother phoned, always cool as a cucumber. She said: “Zama is here (Ulundi); she wants to return to varsity.” I tried to explain that I couldn’t, but Mama said, “xola” (forget the past), and I did.

Zama returned to university, coinciding with the period when I was unemployed. We both struggled, but hers was worse; she stayed in an informal settlement in iNanda, north of Durban, with relatives who turned out to be the worst form of human beings due to nothing else but jealousy.

She persevered and passed her first year. We struggled through undergraduate levels together, including her dealing with a sex pest who wanted sex in exchange for a room on campus. I hounded the sex pest out of Durban University of Technology (DUT), and out of Durban.

Perhaps during her second year, she asked permission to join the leadership of the student movement. Before I knew it, she was the student representative council president. Both her late father and I had done the same things at varsity. Since then, she has been a servant to the people and has enjoyed her life, which she “lives in service of humanity.

She is now the president of the DUT University Convocation. For me, it is comforting that she (Zama) can call “bullshit” by its first name because that’s what a university education allows one to do.

We managed to bring Nsiko home earlier. Despite the odds against her, including having to repeat matric, she successfully completed a TVET course in farming management. She now works in the retail sector as a deputy supervisor for fruit and vegetables at Boxer supermarket stores.

The third child, Professor (largely supported by his mother), is currently in his third year at Rhodes University studying economics and is a top student there, despite having dropped out of medical school a few years before.

My younger sister, whom I supported through undergraduate studies, Nelisiwe, holds a Bachelor of Commerce in business management and information systems, as well as an honours degree in supply chain management. She works at the University of KwaZulu-Natal’s National Institute for Theoretical and Computational Sciences as the acting PR and marketing manager.

I am not anxious about my so-called biological children; my eldest son, Wandile, needs no support as he is a candidate attorney. My youngest daughter, Nonku, is in her second year at the University of Cape Town, studying for a BA degree in English literature and computer sciences and thoroughly enjoying her life there.

My anxiety was always about my brother’s children and his last wishes to assist them and our younger sister. I am glad it all came to fruition in 23 years.

Anyway, I cried for my brother every year for 10 years. I didn’t leave the house on this day (10 April) for many years until I sought professional counselling. I never thought the day would come when I say it is done.

I cried while writing this column because I still miss my brother. There is no death in the family that cuts deeper than the loss of my best friend. We dreamt of obtaining degrees, raising our children, and getting married, but most importantly, we wanted to provide a soft life for our dear mother, uMaMlambo (now late), who lived under her husband’s thumb.

Anyway, before this becomes a sermon, I say, “If I perish, I perish. I have run my race. I have kept the faith.”

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LIVE BY DESIGN | My father taught me how to live and then he taught me how to die

I visited my good friend who is in post-op recovery. She told me of her pre-op preparation, of her instructions to her daughter, her clarity about her Do Not Resuscitate order in the event of things going badly.

Then she asked me, “Do you remember that sentence from Abraham Verghese’s novel, Cutting for Stone?” it goes something like: “My father taught me how to live and then he taught me how to die.”

We then talked about her father, “Pa”, and how indeed in practice, on three occasions, he guided his family to accepting that death is part of life – that there is a time for acceptance and letting go. This is part of the legacy that was his gift to his family.

The first occasion was during my friend’s childhood. Her family took care of an elderly aunt. At a certain point of poor health and declining quality of life, her father asked the doctor for no more medical interventions.

Later when his wife was diagnosed with dementia he was a loving caregiver, assisted ably by daughters, two of whom are medical professionals. He watched his wife’s physical health decline over the years.

When kidney dialysis was proposed he sat with his family and drew the line. Let nature take its course.

Then it was his time. He had only one lung. One Cape Town winter, in his early eighties, he struggled to breathe. He accepted to go to the hospital and spent time in ICU. When he rallied, he asked to be transferred to a normal ward which would allow him visitors.

He spent a couple of days there during which, in retrospect, he said his goodbyes to all he loved, either as visitors or telephonically. He also instructed his daughters not to interfere in the event of his breathing failing, telling them: “I am ready to meet my maker”.

And that is what happened. When his breathing failed again, the two of his four daughters – the two medical professionals who were sitting with at his bedside, courageously restrained their impulse to intervene. They respected his wishes.

I think of Pa as (a) wise, (b) courageous, (c) spiritual, (d) philosophical, and e) fortunate. It was a privilege to know him and appreciate his influence.

The first four of those attributes are the outcome of personal agency, how he chose to shape his life over decades. What is the why of the fifth descriptor, “fortunate”?

I think he was fortunate in that his end-of-life trajectory was relatively short – that he did not spend weeks declining. For those who die more slowly it can be such a harrowing experience both for the person dying and for those who witness. I remember Mapi sharing with me that her last image of her mother is one of her mother’s face wracked with pain.

My late husband was restless in his last days. Now I have become familiar with the term “terminal agitation” and have learnt so much more about how hard it can be for everyone concerned when death comes slowly.

I want to die at home surrounded by my loved ones. But when I seriously consider what that might mean for them, I have doubts about my request. 

We cannot predict our dying days, but these are some of the things that may happen:

  • I may need people to turn me so that I do not get bed sores.
  • If it is cancer that is bringing me to my end, then I might have mouth ulcers as one of the possible consequences of chemotherapy.
  • My muscles may relax, and it is possible that I will lose control over my bladder and bowels, and someone will have to change my soiled bedlinen or my adult nappy.
  • If I have been given pain medications these can increase the possibility I will become delirious especially if they are opioid based.
  • I am informed that as my organs begin to fail, such as my kidneys and liver, the organ failure can also impair brain function and result in delirium, restlessness, and agitation.
  • Additionally, as my heart and lungs begin to fail and my brain receives less oxygen, this can make restlessness more pronounced.

This is scary. This is hard for all concerned. I feel sobered by my learning. But the hospice and other care-giver training insist that you must arm yourself with practical knowledge as the first step forward to engaging with the fear.

It is emotionally devastating to watch someone you love being in distress and pain, agitated and delirious. I will be forever grateful to the Johannesburg hospice nurse, who came to my mother’s home, supported us psychologically and made sure that we had some calming tablets, on hand, to give to my mum as needed.

Causes of terminal restlessness https://cdn.24.co.za/files/Cms/General/d/11024/b6728543345a432284a3e22adca7c0da.png

Eighty percent of people say they would like to die at home. I am in that cohort. I even have a drawing of the exact spot where I would like my dying bed to be, what I can see from the window, which paintings are on the walls, the digital photo frame within eyesight, the music system etc.

BUT, when I consider the details of the dying slowly possible indignities, I have to ask myself if I’m not assuming too much? Are my nearest and dearest truly ready to say yes to my request. And if so, do they fully understand what that may entail? It is a big ask, the biggest I will ever have made in my life. I must be ready to understand if indeed those that I love to tell me that this request is not possible for them to say yes to.

I need to have these more explicit conversations.

Pa’s death was blessed by his family all being on the same page. That’s a legacy I aspire to achieve.

Here’s wishing you well with your hypothetical conversations about your last days.

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LIVE BY DESIGN | Navigating the harrowing journey of cancer diagnosis

As someone who has always been captivated by the intricacies of the royal family, I have witnessed how the tabloid media often spins tales around them — particularly the speculation and sometimes malicious reporting surrounding the late Princess Diana.

Seeing the relentless pursuit to monetise the vulnerabilities, pain and challenges of primary members of the royal family has been disheartening to see for this dedicated royal follower.

Indeed, the strength and existence of the royal family are intricately linked to the media attention and coverage they receive. As public figures whose expenses are partially covered by taxpayers, there is a natural curiosity and interest in their lives. However, there comes the point when this interest can become disruptive and even dangerous for the people who are idolised by the nation.

The constant scrutiny and invasion of privacy can have detrimental effects on their mental health and well-being, blurring the line between public duty and personal life. Society must acknowledge the boundaries and respect people’s private spheres, including those in the royal family, to ensure their safety and emotional stability.

In today’s digital age, social media, especially platform X, has become a treacherous landscape for public figures like Kate, the Duchess of Cambridge, who face a barrage of conspiracy theories and unwarranted scrutiny.

I was taken aback when I stumbled upon Kate’s heartfelt revelation about her cancer battle. Her words provided a glimpse into the rollercoaster of emotions she endured, from the nerve-wracking wait for test results to the life-altering moment of receiving a diagnosis, as well as the difficult choices surrounding how and when to disclose this information to those closest to her.

One particular phrase from Kate’s disclosure struck a chord within me: “The uncertainty is terrifying, but the courage to confront it head-on is liberating.”

Receiving news of a life-threatening from a loved one is a profoundly emotional and significant moment that requires a delicate touch and a compassionate heart. I was transported back to the time when my own mother bravely disclosed her battle with cancer to me when I was just 26 years old.

It was a time filled with conflicting emotions as she revealed this challenging news amid the chaos of my responsibilities as an executive producer for SAFM during the provincial elections. She chose to wait until the hustle and bustle of the elections had subsided before beckoning me home for a crucial meeting.

I vividly remember the mix of vulnerability and resilience in her eyes, igniting a profound contemplation on how young children like Princess Kate’s could possibly comprehend the weight of it all.

Her decision to postpone the conversation reflected her profound care for both the gravity of my work and the need to grapple with her own array of emotions, thoughts, and needs. In that poignant meeting, we found a safe haven to openly share our fears, concerns, and uncertainties, enveloped in a cocoon of mutual understanding and unwavering support.

This shared moment of vulnerability and strength etched a lasting imprint on my soul, showcasing the beauty of empathy and resilience in the face of adversity.

Navigating a life-threatening illness amid the relentless scrutiny of the media must be an unimaginable ordeal for a mother of three. The juxtaposition of personal struggles against the spotlight of public perception underscores the resilience required to endure such challenges with grace and dignity.

As we embrace empathy and understanding in society, it’s essential to remember that behind every headline lies a human story of strength and hope.

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

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.

ALSO READ | Changing the ‘what ifs’ of sudden death to ‘even ifs’

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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LIVE BY DESIGN | Milestone of Healing: Forgetting my mother’s birthday… and remembering her last gift.

For the past 21 years, 24 February has been a day etched in my heart — a day dedicated to celebrating my mother’s birthday, honouring her memory, and connecting with her friends.

It was a ritual of remembrance, a tradition of love that I held onto dearly. However, this year, something unexpected happened. For the first time since her passing, I forgot her birthday.

The realisation crept up on me slowly, like a gentle whisper amid life’s usual hustle and bustle. There were no alarm bells, no pangs of guilt — just a subtle shift in the rhythm of my existence. At first, I was taken aback by my forgetfulness. How could I, who had always been so diligent in commemorating this day, let it slip by unnoticed?

But as the days passed, a sense of calm descended upon me. It was a feeling of liberation, of release from the weight of expectations and obligations that had accompanied this day for so long. Forgetting my mother’s birthday was not an act of disrespect or neglect; instead, it was a sign of healing, a symbol of the passage of time and the evolution of grief.

Amid this emotional journey, I impulsively booked a ticket to Durban, eager to be surrounded by family and retrace the footsteps of my mother’s life. I wanted to share this milestone with her friends, to confide in them that I had finally let go of the need to mark this day in a certain way. I wanted them to know that it was OK, that I was OK.

As I sat among her friends, sharing stories and laughter, I felt a sense of peace wash over me. The act of forgetting had not diminished my love for my mother or the memories we shared; instead, it had allowed me to embrace a new chapter in my journey of healing. It was a reminder that grief is not static; it ebbs and flows like the tides of the ocean, shaping and reshaping our relationships with those we have lost.

So here I am, 21 years later, learning to navigate the waters of grief with a lighter heart and a clearer mind. I am also eternally grateful for my mother’s last gift she bestowed on us as a family – her conversation for clarity about her wishes – which she then wrote down.

My mother’s friends are in their 80s, and I am curious about their clarity and whether they have their affairs in order. One of my mother’s friends has been in and out of the hospital over the past few months, dealing with one ailment after another. Her daughter’s unfortunate situation with job searching has meant she is the 24/7 caregiver.

I asked if the crucial conversations had taken place. With tears in her eyes, she said that only the finances around her burial are settled, and everything else is unresolved, which means she and her brother expect to be at loggerheads, potentially requiring a law enforcement intervention.

ALSO READ | LIVE BY DESIGN: Changing the ‘what ifs’ of sudden death to ‘even ifs’

I visited my mother’s 88-year-old friend. It is always a bittersweet experience. She holds a special place in my heart. I arrive bearing gifts that may not be advisable for someone of her age and health status, but knowing that these indulgences were shared favourites of my mother and her, I cannot refrain from bringing them along.

Our gatherings wouldn’t feel complete without their cherished foods. She greeted me with a solemn declaration that these are her final days, and she is prepared to reunite with her maker. Our conversations drifted towards her unwavering belief that my mother awaits her in the afterlife, eager to catch up on the past 21 years.

Wanting to steer our dialogue towards practical matters, I inquired about her arrangements and whether her children and grandchildren were mentally prepared for her imminent departure. Will her passing strengthen their familial bonds? Her response was stoic yet profound – she expressed confidence in the values she has instilled in them. She believes they are equipped to navigate life without her guidance.

The conversation omitted the unspoken fears and concerns, and I couldn’t shake the worry about her legacy and the impact of her absence on their lives. How will they simply “adult up and leave their best lives” if certain conversations have not happened? What about a will to guide them on how to divide her assets? But she insists that her time is up, and she is only left with the energy to die rather than to think about the fate of her children, whose youngest is 48.

I hear her words, and the weight of the unresolved now lingers in the air, leaving me to ponder the intricate layers of love, loss, and the enduring legacies we leave behind.

“It’s always too soon – and then it’s too late,” I recall these words of Ellen Goodman, American feminist Pulitzer prize-winning journalist, who was left to manage the consequences of conversations that hadn’t happened. Ellen’s suffering prompted her to co-found Boston-based The Conversation Project – a not-for-profit dedicated to supporting ordinary people to have end-of-life conversations EARLY ENOUGH.

See www.theconversationproject.com for a series of conversation guides about dementia, your doctor, a dying child, or how to choose someone to speak for you if you can’t speak for yourself.

For my mother’s friend, it’s too late – she’s clearly telling me her life force is in decline. Talking with her makes me sad that while I run LoveLegacyDignity programmes, undertake public speaking engagements and write this column, I’ve somehow missed the opportunity, closer to home, to sit earlier with my mother’s old-old friend to support her to have these critical conversations.

This is the time of year with many family gatherings and time for conversation. The 30 days of Ramadan have started, Easter is a few days away, and Pesach follows just a couple of weeks later. I urge you to have no regrets. Create opportunities to have life-affirming conversations about mortality.

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LIVE BY DESIGN | Rites of passage as celebratory cornerstones of life

What rites of passage have you chosen to observe in your life? How might you do things differently if you could turn back the clock and make other decisions?

At the end of last month, I turned 70. Questions arose – whether to celebrate or not to celebrate? Party? Dinner? Or to quietly enter the next decade without a fuss? Maybe it is the echoes of the biblical phrase, “three score years and ten.”

I decided that, indeed, the culmination of seven decades felt significant.

I follow the work of a US organisation called School of Lost Borders, whose focus is strengthening the practice of rites of passage in a modernising world where communities disperse, and traditions are not pursued – casually so – without genuinely considering the value of what is being lost.

There are different rites of passage in our lives: our arrival, our passage of puberty into adulthood, from adulthood to elderhood, and finally, from elderhood to death.

Yes, there are other ceremonies, such as betrothal weddings and religious ceremonies, but the five above are linked to the linear physicality of our ageing.

Our arrival: Naming ceremonies are common throughout the world.

People speak of them as providing a celebration of life, a family occasion, carrying the weight of a formal ritual, and an opportunity to pass down cultural values and beliefs to the next generation.

The Catholic baptism ceremony also allows for naming the “godparents,” trusted faithful adults who formally make the promise to help the child’s parent in their duty as Christian parents.

Jewish tradition for boys also requires them to be circumcised on the eighth day of life (or when they reach five pounds in certain medical circumstances), perhaps drawing on the ancient practices of the Egyptians and Ethiopians.

Maasai elders name a baby very soon after birth, whereas the Wodaabe of Niger will not name a child until it reaches twelve years of age so that the death spirit may not identify the child.

There is such diversity, but the consistency is that it is not ignored.

Puberty as entry to adulthood: There seems to be more awareness of ceremonies for boys rather than girls. Circumcision is so often considered the rite of passage for boys becoming men irrespective of religious orientation – excepting the Jewish faith, requiring circumcision a few days after birth.

When I listen to the ceremonies associated with girls’ menstruation, that is when I am most saddened by what we have lost culturally for many urban young girls around the world.

The Ghanian tradition, “Dipo”, creates a weeklong retreat with bathing rituals, a special drink and older women sharing their life lessons about sex, womanhood, and well-being. The week ends with a community ceremony, which includes skin decoration and a dance called the “klama.” Certain North American Indigenous people have a similar four-day retreat.

In Sri Lanka, the Yamil puberty celebration involves a retreat and then a celebratory gathering with gifts of new clothes and jewellery.

Jewish tradition has a Bat Mitzvah for girls once they have turned twelve. Boys have their Bar Mitzvah after their thirteenth birthday per the Talmud, Numbers 6:2, which indicates age 13 as the age of manhood.

Adulthood to Elderhood: I could not find societal celebratory ceremonies for elderhood. I learnt that the USA sub-divides its older adult population into three life-stage subgroups: The young-old (approximately 65-74 years old), the middle-old (ages 75 to 84 years old) and the old-old (over the age of eighty-five). I learned that there are pockets of people and groups creating opportunities for rites of passage.

For example, I could fly to Los Cabos in México for two nights during the spring solstice and spend R30 000 to participate in “Celebrating the Crone and the Senex”.

The hosts offer “rites of passage for women and men ready to embrace their embodiments of Age, Wisdom and Power.” I discovered a magazine publication called “Third Act.”

I found an organisation called the Centre for Conscious Aging. I guess I am relatively new to elderhood, and now that I’m curious, I’ll find my peops.

What is missing for me so far is any formal societal embrace – say, for example, I always notice Chinese elderly doing Tai Chi and their presence in kindergarten photos as assistants.

Elderhood to Ancestry: Including an honourable death.

This is where Mapi and I are trying to consciously write on topics to support all of us, irrespective of our spiritual orientation, to design our lives to secure a dignified departure.

Again, I don’t find community examples that lay out a pathway.

Returning to the question, “What rites of passage have you chosen to observe in your life? How might you do things differently if you were able to turn back the clock and make other decisions?”

My early motherhood years were spent in an exile community that did not recognise the importance of and/or make time for ritual. I am sorry that my girls did not have celebratory naming ceremonies.

Menstruation was a “practical” happening, and while I hope they felt enough concern, care, and empathy, I feel my girls missed out on a much richer deeper emotional and spiritual experience of coming of age. I now know of women in my age cohort – more conscious than I of the importance of rites of passage who designed puberty ceremonies for their daughters. Lucky girls!

I cannot turn back the clock. I cannot undo what’s done. But, Mapi and I, in our Live By Design – Finish Strong advocacy, hope that through our reflections, we can provoke your reflections and make a difference as to how you choose to live in this world.

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LIVE BY DESIGN | Changing the ‘what ifs’ of sudden death to ‘even ifs’

Somewhere out there, a family is grieving the sudden and tragic loss of a loved one.

From unexpected deaths like car accidents or violence to medical emergencies like heart attacks, every loss is unique and deeply painful.

One family I know is mourning the passing of their 30-year-old daughter after she suffered from an epileptic attack while sleeping alone in her room.

This is how her mother described her death:

“She had lived and managed the disease since she was 10 years old. This week, [she] had an unexpected attack while visiting her grandmother who lives nearby. The attack was different; it happened at night, and nobody heard anything.

They discovered her in the morning. Doctors who declared her death said she had multiple attacks in her sleep, which caused her to die. It is hard, sad, painful. However, there is an element of relief. The family and her brothers loved her but wished she had a healthier life. In the past two years, her memory was getting worse. She forgot people’s names and anything that she was told.”

Her mother is shattered by the loss, grappling with feelings of guilt and sorrow as she wonders about what could have been done differently and if her daughter’s suffering could have been prevented.

There are many ‘what ifs’.

Her struggle with severe epilepsy impacted her entire life, from childhood to adulthood. As a mother, she prioritised her well-being and showered her with unconditional love.

There is a temptation from her friends to change her ‘what ifs’ to ‘even ifs’. But how do you tell someone who is overwhelmed by complex emotions that there is a better way to feel and process their pain?

Their daughter’s death has shaken them to their core. But, by acknowledging and processing their emotions, seeking support from others, and actively working to find meaning in the loss, they are beginning to move through the grief and find a way to honour her memory.

Sudden death is a traumatic event that can leave loved ones reeling with shock and disbelief. The common reactions to sudden death include feelings of disbelief, anger, sadness, and confusion. The sudden loss of a loved one can shatter our sense of security and stability, leaving us struggling to make sense of what has happened.

However, finding a different meaning in the tragedy can be a powerful way to help those grieving cope with the loss. By shifting our perspective and looking for lessons or silver linings amid the pain, we can begin to heal and find some semblance of peace in the wake of a sudden death. One example of someone who found solace in helping others after experiencing a sudden loss is David Kessler.

After the untimely death of his son, Kessler channelled his grief into a mission to support and comfort others who were going through similar experiences.

By using his own pain as a catalyst for helping others, Kessler was able to find purpose and meaning amid his profound loss. The reaction to sudden deaths can vary depending on the circumstances surrounding the loss.

Tragic deaths, such as those resulting from shootings or car accidents, may elicit intense feelings of shock and horror. The sudden and violent nature of these deaths can leave survivors grappling with overwhelming emotions and struggling to come to terms with the senselessness of the loss.

In contrast, deaths due to natural causes, like heart attacks or unexpected events, such as someone not waking up from sleep, can also prompt a range of emotional responses. While these types of deaths may lack the traumatic and violent elements of other sudden losses, they can still be profoundly shocking and disorienting for those left behind.

Finding meaning in the face of sudden death can be a challenging and deeply personal process. It requires us to confront our grief head-on and search for ways to honour the memory of our loved ones while also finding a path forward in our own lives.

Like David Kessler, we have the power to transform our pain into purpose and use our experiences to bring comfort and understanding to others who are walking a similar path.

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