My Story – by Eugene Stephan Viljoen
My name is Eugene and this is my story. My story does not touch upon only one person, but encompasses the experiences of four terminally ill people and those who loved them. My story is about ill people who endured extreme prolonged pain and suffering and those who had to stand by helplessly. So not only is this my story, but the story of my family.
My grandfather was my hero. He was active, save for having undergone heart surgery before I was born reasonably healthy, he unconditionally loved my grandmother, his children and grandchildren. He LOVED food and cooking. In May 2000 he was diagnosed with terminal liver cancer, treatment was not viable, my grandfather had gotten a death sentence. In June 2000 we went to visit him and my grandmother to see my grandfather one last time as we lived far away and he had already begun to deteriorate. Cancer is a formidable foe, it quickly destroys people physically and emotionally. My grandfather became increasingly less active, he started becoming emaciated, he could no longer enjoy food as much as he used to as his body simply could not process it. His pain grew and grew, his organs started shutting down. Cancer destroyed him.
But Cancer is also a cruel friend, it afforded me the opportunity to wander alongside my grandfather through his beautiful garden a few more times as gardening was a shared passion, it afforded my mom and grandfather the opportunity to make amends for certain things that were said and done in the past which did not in actual fact matter anymore, it afforded my grandfather the opportunity to experience the birth of his fifth grandchild, it afforded him and his siblings the opportunity to gather for one last time and reminisce about when they were children.
Shortly before he passed my grandfather had to be carried a few paces to their car by a stranger after leaving their doctor’s office because he had no strength left, his muscles having atrophied. Although thankful for the assistance, he nonetheless felt humiliated because he could no longer do something as simple as walk himself a few meters to his car because the pain was too much and his energy too little. After that he went downhill extremely quickly. On July 26th, 2000 my grandmother had their doctor come to their house. My grandfather was bedridden and his one leg had become gangrenous and would have had to have been amputated. His pain levels at that point were such that he was constantly in a medically induced haze to kill the pain, thus he was unable to make his own decisions. The doctor took my grandmother aside and gave her two choices: book my grandfather into the hospital the next day to have his leg amputated or give my grandfather a large dose of morphine and have him go to sleep and slowly and softly slip away. If my grandmother chose to have my grandfather admitted to hospital for the operation, he most likely would not have survived and, if he survived and woke up to an amputated leg, he would not have survived the shock. This once proud man would not have been able to survive the indignity of being wheelchair bound, most likely having to have a colostomy bag and catheter while still wasting away due to illness. Because she loved her husband and wished his suffering to end, my grandmother chose the latter. At around 18:00 on July 26th after a prolonged torturous battle that he would not have won, my grandfather passed softly due to the goodwill of a progressive doctor and the love of his wife.
I can’t speak for my grandfather, but I will say that, if he was told how his life would eventually end and how much pain and suffering he would have had to endure and given the option of euthanasia, he would probably have opted to die peacefully during that holiday in June with his wife, children and grandchildren nearby. However, he did not have that choice, his only option was to endure the cancer and the uncertainty of when and how he would die. Even as I am writing this, 14 years later, the mere thought of what he endured breaks me. Having to stand by helplessly while someone you love dearly just wastes away leaves scars that are deep and that never truly heal.
Hannes was my mom’s older brother. He was a burly man, strong, active and always busy, proud of his person. Great fun to be around. He developed a lingering discomfort in a cavity is his chest and was subsequently diagnosed with a very aggressive form of cancer, Adenocarcinoma, which is, as far as my knowledge stretches, of glandular origin and forms part of a larger grouping of carcinomas. Because he was at an age where fighting the disease was still viable, he underwent extreme chemo- and radiation therapy. Alas, the treatment barely slowed the spread of the cancer, his illness had become terminal. After his treatment was “done”, it was found that during treatment the cancer had among others spread to his bones, lungs and most major organs. The disease and treatment had changed him from a big, strong man to a skeleton covered with skin. The cancer started taking its toll with a vengeance, causing him extreme pain and discomfort. Something as simple as having his toenails clipped (an action he could later not execute on his own) was sheer torture. Most food disagreed with him. As his organs started shutting down, a lingering bad smell enveloped him as he was basically starting to decay while still “alive”. His pain was later such that pain killers could no longer work properly, almost as if his body had started building immunity towards it. He could no longer work or take care of his house and garden, both of which was very important to him. With no other option available to him, he was left to wait to die.
At that time we were still living far away and my parents started making preparations to fly to them so that my mom could be with her brother during the last few days of his life. The evening after my parents started making arrangements, when they went to bed, both my parents switched off their cell phones to try and get some rest, which my mom desperately needed. I woke quite early the following morning, around 06:00 to the ringing of my cell phone. I was still in a fog when I woke and did not answer as I did not register at first that it was my phone ringing. Only when a notification text came through informing me that there was a voice message on my phone, did I register that it was indeed my phone that rang. The message was from my grandmother who went to help care for my uncle as his wife had a terribly full plate. I never in my life thought that I would have to break the news of her brother dying to my mom, so I woke my dad and quietly told him that Hannes had passed. The cancer had finally won. My uncle, a once healthy man, was eaten way. His wife was left a widow, his sons left without a father, my grandmother lost a son barely a year after she lost her husband and me and my sister lost a person we had a lot of respect for.
Again we were all helpless, there was nothing any of us could do to ease his pain and suffering or the suffering of my aunt and cousins. We could only stand by while my uncle deteriorated, wasted away and became barely a shadow of the man he once was. Had my uncle had the option to choose when and how to die and if he would have made that decision, he might have been spared prolonged pain and he might have had a dignified passing before he became dependant on people to help him with the most basic of personal tasks. My uncle fought a valiant battle, but towards the end he could not fight anymore, he was tired, he waited for a terrible death. He did die at home with my aunt, his sons and grandmother nearby, but it was slow and painful, undignified, him having become a prisoner in his house. My aunt had her energy sapped by constantly caring for my uncle, which she did beautifully, but in essence “lost” her husband prematurely. My cousins endured much trauma by having to witness their father waste away at young ages. We as his family endured prolonged heartache, emotional distress and grief. Had laws allowed assisted dying, an entire family would have been spared which should be unnecessary suffering.
Leatitia was my mom’s one cousin. I personally did not know her, but she always was and still is spoken of with love and near reverence. What I do know is that she was physically a very beautiful woman with a personality to match. She was also an accomplished athlete and up until she was diagnosed with liver cancer six years ago she gave aerobics classes. She was also at an age where treatment was “viable” and Leatitia being very spirited, decided to fight the disease with all she had. Unfortunately she never went into remission, constant ongoing treatment only slowing the spread of cancer. During the six years that she was first diagnosed with liver cancer, the disease had spread to among others her stomach, pelvis and lungs. She underwent countless operations to remove parts of her liver and stomach until no more pieces could be cut away. Eventually treatment was futile and all that was left was pain “management”. Yet she continued to fight valiantly. So much so that a week before she died, we as a family were making arrangements to have one big shindig of a dinner with her. Unfortunately the dinner was not to take place. Leatitia developed excrutiating pain and was admitted to hospital and never left. Hooked up to IV drips pumping pain medication into her destroyed body, this once lively and feisty woman finally uttered the words “I wish I could die”. But she still had to endure horrendous pain until her lungs finally gave in and she eventually died. During her illness she was almost constantly in pain, but due to her nature it did not get her down until the very end. Although her passing was not as “traumatic” for her closest family save for her daughters because she remained positive and fought bravely, they were still left to only watch on the sidelines and her only choice was to fight until she could fight no longer.
As I said before, I did not know her personally, I knew her vicariously through oration and attended her funeral service as a sign of respect which was attended by many people whom she had touched with her energy throughout her life and illness. I can’t speak for Leatitia. I do not know whether she would have chosen to die earlier if she had been given that choice. However, what I can presume is that having bits and pieces of you cut out and away can’t make you feel very dignified.
I felt a sense of loss when she died, even though I did not know her. Her spirit filled me with great respect for her, respect that will last many, many years. Her life and death had a profound effect on me.
The last person that I want to write about is another person that is very dear to me, my grandmother whom I spoke of earlier. Technically my grandmother is still alive. I say technically because my gran is currently in the terminal stages of Alzheimer’s Disease, which according to me is a terminal illness as there is no cure and leads to death. My grandmother was a very clever woman, a walking calculator. At times difficult and full of nonsense. Very stubborn. Proud of her appearance and cleanliness to the point of being vain. As a young woman she was very beautiful, dark brown, almost black hair and porcelain skin. Difficult as she was, she loved her children and grandchildren dearly and was elated at becoming a great-grandmother when my nephew was born. She started becoming forgetful and doing small strange things, but it did not worry us much as we accepted it as a normal part of growing old.
It was customary for me to stop by her house during lunch. One day I stopped by her house and her knee was swollen like a balloon. We had moved to the same town as her two years before so I called my mother because during one of her visits to us her knee had swollen like that also. My mom came and took my gran to the doctor and it so happened that she had to undergo an emergency knee transplant.
The next day my gran was booked into the hospital for the operation but never returned to her house. After the operation she went at first to a nursing home for a short while to recuperate and then stayed with my parents for a while. She would only have stayed until her knee had healed sufficiently for her to return to her own home. That was not to happen. After the operation her mood changed drastically, her behaviour became increasingly erratic and she started soiling herself.
Her GP opted to refer her to a neurologist so my mom made the appointment and took my gran for a barrage of scans and tests. It was found that my gran had among others suffered a series of small strokes and also had calcification in her brain and was diagnosed with Alzheimer’s Disease. She continued soiling and wetting herself and her bed, rapidly forgot who we were and eventually had to start wearing diapers. The illness caused her to lose all dignity. Currently she is bedridden and can’t feed herself. Soon she will not be able to swallow anymore and will have to be fed via IV drip. Eventually she will lose the ability to breathe on her own and will have to be put on a ventilator. This once smart, proud and clean woman will die with tubes in her throat and needles stuck in her hands and arms wearing a diaper. She did not have a choice to die a dignified death while she still knew who we were, while she still knew who she was, while she still had control over bodily functions. She had to and still has to endure a prolonged undignified end. And we, as a family, have no choice than to watch her continuously deteriorating and waiting for the day until we have to say “yes” to having the machines that will be keeping her alive to be switched off. To a certain extent my grandmother is “lucky”, she has got absolutely no idea as to what is going on anymore. But we as her family are suffering extreme prolonged trauma which is sapping our energy. And what often happens in families when a parent and grandparent has Alzheimer’s Disease, a lot of friction was caused in the family with my mom and her surviving younger brother having fought and my parents having experienced marital trouble. Luckily my mom and uncle made amends and my parents’ marriage survived, but my grandmother’s illness still puts us under tremendous emotional strain.
It might sound harsh, but that which made my grandmother human does not exist anymore, she is merely a husk that breathes, barely eats, is emaciated and defecates. My grandmother has lost all her dignity and, to a much smaller extent, so have we as a family. When my gran was still reasonably clear headed, should she not have had the option to die peacefully and with dignity in her own home with us as her family there, instead of alone in a nursing home?
The word “Dignity” comes from Latin “Dignitas” by way of French Dignité. In ordinary usage it donates “respect” and “status”. Human dignity can be violated in many ways, the main categories being Humiliation, Objectification, Degradation and Dehumanization.
Immanuel Kant, a philosopher of The Age Of Enlightenment, held that “free will is essential; human dignity is related to human agency, the ability of humans to choose their own actions”. Alan Gewirth, a philosopher of the late 20th century also wrote extensively on dignity and his views compared closely to those of Kant. However, where Kant focused more on the rights that arise from dignity, Gewirth focused more on the obligations that dignity imposes on humans, the requirement to not only avoid causing harm, but to assist one another in “achieving and maintaining a state of well being”.
Our constitution states that, among others, all humans have the right to dignity. So in my opinion, all humans have the right to be treated with respect and have the right to choose their own actions and all humans also are obliged to help his fellow man achieve and maintain well being. That pertains to healthy as well as terminally ill humans.
Healthy humans thus “have the right” to end their lives for many reasons. Should those who are terminally ill who face a torturous death then not have the right to choose to end their lives earlier with the assistance of a doctor or trusted family member or friend while they are still reasonably healthy and mobile surrounded by their loved ones without fear of their loved being prosecuted for helping them to die? Is forcing terminally ill people to die slowly, painfully not taking away their dignity? Is forcing those people to die by for example way of hunger strikes not causing them more harm, thus taking away their dignity? When achieving and maintaining a state of well being is no longer possible, do those people who are dying then not have the right to die while they are still experiencing some well being?
It is illegal to help a terminally ill loved one die, yet those who are terminally ill technically “have the right” to choose to end their lives just as healthy people do. Just so long as nobody else is involved. “You can die by your own hand, but do so while lonely and often by less than comfortable means”. There is a yawning gap between law and basic human rights. Law in essence, according to me, violates the right of the terminally ill to die at a time and by way of their choosing surrounded by those loved and trusted.
For many people euthanasia is a religious and moral issue. “Only God has the right to give and take life”. Yes, that might be true, but will a magnanimous creator punish a fragile and sick human when he or she came to the end of what they could endure and wishes to die? “It is not right, not moral to help a person die”. Is it then right and moral to force that human to endure increasing and unrelenting pain and the loss of dignity? Would it not be more moral to help end their suffering?
We are a family of Christians, albeit progressive Christians. We do not want people to die, we revere life. But we are also humanists and care deeply about the well being of humans. We believe that God does not “test” his children beyond their capabilities. When someone who suffers from a terminal illness comes to a point where they say “I can’t anymore, the pain is too great, I want to die”, then I believe that that person has the right to rest. And I believe that person has the right to pass comfortably with loved ones around. I do not see a terminally sick human ending their life as them killing themselves at all. They aren’t. They are dying anyway, they are merely hastening their death and doing it on their terms.
Ever since my grandfather died, my mom and I have entertained the idea of euthanasia as a humane way to end the suffering of someone who is terminally ill. The two us often discuss it. When the news of Sean Davison who helped his terminally ill mother die first broke, I followed the story and we also discussed it to a great extent and feel that what he did was noble. I am unashamedly a supporter of assisted dying. It is NOT murder, it is showing mercy and ensuring that the person dying does so with dignity.
This piece is a lot longer than I initially intended. I originally intended to just share the stories of certain individuals in my family. But as is often the case when I write, it morphed into something including my views and opinions. My views and opinions do not come from just a need to raise an opinion or to hear the sound of my own voice, it developed over a long time out of experience and my basic characteristic of caring for humans. I do hope that what I wrote, in however small a way, helps you to make sense about your own thoughts if they are conflicting or gives you some hope in the knowledge that there are many people thinking the same way as you do.