Gillian Schutte. Picture: Independent Newspapers
By Gillian Schutte
Recently, I have found myself reflecting deeply on the ethical and philosophical dilemmas surrounding the extension of life through pharmaceuticals. This reflection has been rooted in my personal journey with my mother, whose ageing process has been fraught with health challenges and given rise to profound ethical questions.
My mother, once a vibrant yoga teacher and fitness fanatic, is now a frail but determined octogenarian. Her slim body and youthful looks belie the fact that over the past four years she has faced three major heart attacks. On top of this, she suffered a stroke in 2020 shortly after her third vaccine during the COVID-19 period.
While the stroke was mild and she is still able to hold conversations and walk with a walker, it still caused vascular damage that has restricted her left arm and leg, as well as severely affected some of her cognitive faculties.
Witnessing our once fit, vibrant and witty mother’s mental decline, as she vacillates between clarity and confusion, has been a painful and sometimes trying process for me and my four siblings.
Most tragic is to observe her sporadic floundering in a twilight zone along with an awareness that her mind is slipping while knowing there is nothing she can do about it. Sometimes she weeps and professes that she would rather be dead than live with these unbearable restrictions.
Through her tears she often relates the story of her father, who had the same heart condition, prevalent in their Van der Walt bloodline, and died from it in his 50’s. She was thirteen years of age at the time and did not understand why he lay in his bed in urine soaked nappies.
She expresses guilt that as a child she was disgusted by his condition. Now that she has the same condition she wishes she could ask for his forgiveness.
Unlike her father’s early death, my mother is now nearly 85 years old—her life is sustained by a few small pills—a lifeline that prolongs her existence but raises complex questions about the quality and dignity of that life.
It is from this space that I have begun to grapple with existential contemplations about life, pharmaceuticals, and freedom with regards to my own aging process.
As a social critic who has spent a significant portion of my adult life deconstructing capitalism and neoliberal ideology, it is this terrain that first comes to mind as I grapple with the realisation that both our lives and our deaths have been permeated by neoliberal capitalist logic.
It is this logic that drives our healthcare system and prioritises the extension of life through pharmaceutical interventions, many times at the expense of the individual’s quality of life and dignity.
In this system, life becomes commodified, and the natural processes of aging and dying are medicalised in ways that can strip away the essence of what makes life meaningful. As I witness my mother’s struggles, I am compelled to question the ethics of this approach.
At the same time, as a student of Advaita Vedanta (Non-dualism), I question this extension of existence through the life support of pharmaceuticals within the framework of consciousness that transcends the illusion of being born or dying.
These ancient Vedic teachings hold that our true self, the Atman, transcends the physical experience. This perspective exists outside of worldly systems of knowledge and points out that life’s essence lies beyond the temporal constraints of the body, offering an entirely non-materialist outlook in the face of physical decline and mortality.
Embracing this viewpoint means acknowledging that our existence is more than the sum of our bodily functions and that death is not an endpoint but a transition—an integral part of life’s natural rhythm.
Despite my frequent engagement with the world of politics and my writing on the epistemology of the material condition, it is non-dualism that underpins my ontological foundation and thus my logic on death and dying stems from a sense of fearlessness in the face of immortality and the delusion of mortality as a state that many humans strive for at any cost. It is this belief in materialism that gives rise to life-support via medication as the only option.
Atul Gawande, an American surgeon and writer, in his book “Being Mortal,” explores the complexities of prolonging life for individuals with dementia and other debilitating conditions. He argues against the traditional medical approach that often focuses solely on extending life through aggressive treatments and pharmaceutical interventions.
Gawande emphasises the importance of understanding what constitutes a meaningful life for the individual and aligning medical care with these values. His perspective challenges the notion that prolonging life equates to better care, urging a re-evaluation of priorities in aging and end-of-life care to ensure that patients receive compassionate and dignified treatment.
My mother’s journey exemplifies Gawande’s viewpoint. Watching her suffer has taught me invaluable lessons about the importance of compassion, empathy, and the true meaning of care.
In her case, we made the decision to place her in a care facility where she receives the medical attention she needs as well as enjoys the company of other elders while she is still able to engage in conversation.
But it is both her resilience and her struggle in the face of physical decline and cognitive impairment that underscores this need for a paradigm shift in how we approach aging and end- of-life care.
She would rather be living with one of her children, but as all of us are approaching sixty or in the sixties, the matter of spending these precious years looking after our mother is difficult.
We are all still engaged in making a living and my siblings with more conventional lifestyles have worked hard to enjoy their retirement which will involve letting go of work stress and exploring post-career existence on multiple levels.
In my case, it became a moral dilemma when I realised that I was unable, emotionally and psychologically, to sustain the intense consistency of caring for my mother in my own home.
Her demands are frequent and sometimes impossible to fulfil. I also soon recognised that the process of declining mental cognition, or dementia, brings out the core personality of the aged and I was forced to acknowledge that these same personality traits essentially gave me ongoing anxiety as a child whose role became one of always trying to make my complicated mother happy.
The inner turmoil of reliving this childhood experience of trying to please the unpleasable sometimes transmuted into a deeply toxic inner repulsion that was disruptive to my own peace and economic agency. As a freelance writer and thinker I am constantly working and I found that I had no time to think, to write, to be.
My mother would fall into a dark abyss of depression that sometimes played out as seeming malice if she did not have my constant attention. She would phone my siblings and make outrageous claims about various monetary matters and neglect.
At these times she would also express the desire to be dead rather than live this impaired life. It is hard to know whether this was manipulation for sympathy or stemmed from a deep recognition that extending her life on meds was in direct contradiction to her own yogic logic in which her soul longed for the unbound freedom of the unmanifest realm.
At the same time, the fear of death, a trope vociferously pushed by capital and one that it profits from, also pervades her consciousness. She would prefer to be dead but is also terrified of dying.
This confluence of realisations revealed to me the urgent need for a model that works to empower people to transcend the fear of death and understand it as a continuum of spirit.
This approach allows people to resist the profit fundamentalism of capital and frees them up to make autonomous choices around their dying process.
A system like this prioritises holistic well-being, spiritual integrity, and individual choice over mere medical interventions—a model that should be accessible to all humans as a fundamental right.
Having witnessed my mother’s cognitive decline due to vascular dementia and her struggle with heart failure, I now reflect on the option of declining pharmaceutical interventions in my own later years if faced with similar health challenges.
I also consider the option of assisted suicide in the context of severe illness. This emerges from my deep-seated resistance to the commodification of life as well as a spiritual commitment to embracing life’s natural rhythms.
It aligns with the existentialist philosophy of Jean-Paul Sartre, who asserts the right to choose a dignified end when life’s quality diminishes beyond acceptable limits.
Sartre’s concept of existential freedom affirms that we are responsible for our choices, even in the face of death, offering a framework for embracing life’s natural course with courage and integrity.
But then, the consequences of refusing medication must also be considered. The answer is, in my framework, allowing a single pharmaceutical intervention, such as voluntary euthanasia or assisted suicide, to avoid burdening those around you with a prolonged dying process.
In South Africa, however, this ultimate expression of freedom remains legally elusive.
The notions of autonomy and the right to shape one’s destiny clash with the current legal framework, which evades the matter of voluntary suicide, euthanasia and medically-assisted dying.
Despite ongoing debates and advocacy efforts to bring about legislative change, the existential choice of voluntary euthanasia is not legally sanctioned.
Unlike many other countries that now embrace voluntary euthanasia, South African individuals seeking to exercise this profound act of freedom must grapple with a society that has yet to fully embrace the reformist ideal of allowing individuals to confront and conclude their existence on their own terms.
Despite our country purportedly having the most progressive constitution in the world, it is ironic that while the legal right to voluntary euthanasia is denied it simultaneously obliquely allows many elderly individuals to die from systemic neglect in a neoliberal framework that lacks adequate social safety nets.
How can a democratic system accept death by neglect—where the state fails to provide adequate essential care—but refuse the compassionate choice of voluntary euthanasia?
This contradiction brings into sharp focus the capitalist logic that underpins even the Constitution, prioritising control and profit over genuine care and compassion, and reveals an acute disconnect between human rights, legal principles and the humane treatment of individuals at the end of their lives.
Notwithstanding this legal and constitutional impasse, I have made up my mind, while my faculties are intact, to end my life on my own terms when the time comes.
For me, this is a proactive step towards shaping my future on my own terms and embracing the philosophical and ethical principles that resonate deeply with my understanding of life, death, and human dignity.
As an activist against neoliberalism and its commodification of all aspects of life, my stance is not only grounded in a spiritual understanding but also forms part of my resistance to capitalist logic.
This resistance is a fundamental aspect of my identity and my ongoing struggle against the pervasive influence of capitalism on every facet of our lives.
I have reached this conclusion through my mother’s journey, with its myriad challenges and poignant moments.
I have also reached this conclusion through the suicide of my 20-year-old son in December 2019 – a tragedy that has taken me four years to process and has radically shifted my perspective on death and dying.
This journey has made me open to the value of approaching aging and dying with philosophical depth and compassion.
My journey through the loss of my son, which catapulted me into exploring the illusion of body and death within the Advaita Vedanta tradition, teaches me that embracing life’s natural cycles, including the inevitability of death, opens up a deeper appreciation of the inherent dignity and transient beauty of human existence.
My choice in contemplating a future free from pharmaceutical interventions except through voluntary euthanasia, allows me to honour the natural progression of life and embrace the wisdom and grace that come with accepting its full cycle. It encompasses a deep respect for individual autonomy, dignity, and the profound mysteries of life and death.
* Gillian Schutte is a film-maker, and a well-known social justice and race-justice activist and public intellectual.
** The views expressed do not necessarily reflect the views of IOL or Independent Media.
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