Craig hoped that this book would help others and their families who, in future, might find themselves in a similar situation.
Euthanasia and assisted suicide are issues that have periodically gripped national and international public interest as several countries revisit legislation, which currently makes it a crime in most of the world.
Recent cases involving high-profile individuals (University of the Western Cape Professor Sean Davison, Belgian author Hugo Claus, British author Terry Pratchett, to name a few) have highlighted the need for ongoing debate and new legal frameworks.
In South Africa there have been calls for renewed engagement by Professor Davison, sentenced by a New Zealand court to five months’ home detention for helping his terminally ill mother, Patricia, to die in 2006. He is one of several founding members of the recently established Dignity SA, an organisation petitioning for legal reform in relation to end-of-life decision-making in this country.
In 1998, the South African Law Commission (SALC) published a final report, originally commissioned by former president Nelson Mandela, and which included a draft bill entitled End of Life Decisions Act 1998.
The report has been “gathering dust” for more than a decade, says Professor Willem Landman, of the Ethics Institute of South Africa, who is also one of the founding members of Dignity SA.
“We are dealing here with people’s deep-seated beliefs about the value of life and the purpose of suffering. But disagreement cannot lead simply to an ethical stalemate – we need to find common ground in the spirit, values and rights embodied in the Constitution.”
He presented a position paper, End-of-life decisions, ethics and the law: A case for statutory legal clarity and reform in South Africa, at the 1st Annual Congress of the Faculty of Consulting Physicians of South Africa this year. (See Part 2 Chapter 2 for a comprehensive overview of the law pertaining to assisted suicide.)
The right to die is one of the last medical, legal and ethical frontiers. Advances in medical technology have resulted in prolonging life long after it may be “naturally viable” and this has raised a number of questions.
The global debate is often fraught, with those with opposing views finding little or no common ground. Euthanasia and assisted suicide remain a deeply controversial issue, particularly when framed or argued through a religious, cultural or “moral” lens.
The argument often pivots on the notion of the “sanctity” of life, a general belief that human life has an intrinsic value and that it is “god-given” and that no human being has the right to take either their own life or that of another.
In this argument, amending laws to allow euthanasia or assisted suicide would lead to a “slippery slope” where the vulnerable, the poor and those who might not be able to speak for themselves might be abused by those who wish to be “rid” of them. And it is precisely because of this danger that very strict protocols need to and do exist in those countries were euthanasia is not illegal.
The debate about the right to die must occur within a secular, legal and ethical philosophical framework.
Respect for human and individual rights is where the focus should rest and it is within the framework of international jurisprudence that we must try to seek answers and reopen the debate.
The United Nations Universal Declaration of Human Rights was adopted in 1948 and drafted in the wake of the Second World War and the gross violations of human rights that occurred during that period. The Declaration is a touchstone for the creation of a more humane and moral universe and the first global expression of rights to which human beings are entitled.
While the ideals enshrined in the Declaration are noble and worthy, as human beings we still struggle to realise fully these rights across the globe.
Suffering is a central tenet or motif of the Christian faith to which Craig subscribed. The crucifixion of Jesus Christ, His suffering before and during the event, is a symbol for many Christians that suffering is an integral part of life, a personal Via Dolorosa for each believer, a path to spiritual transcendence.
But religion, particularly the Christian faith, also asks believers to work actively towards alleviating the suffering of fellow human beings. Would allowing someone who makes a rational and informed decision to end his or her life with dignity not amount to a demonstration of that very compassion which is, to many, at the heart of Christian faith?
Craig wanted us to discuss these issues and move the debate forward. Apart from this, he also wanted to raise awareness about NF1 as a disease and highlight the difficulties and prejudice that people who are born with NF1, or any other disease or disability, have to face.
Craig needed to describe his own struggle to live with a debilitating and degenerative illness and, while there may be many people who are able to accept their limitations and suffering due to illness, this was not possible for him.
Like Rev. Irvine, Craig would have wanted you, the reader, to “park your judgment”, engage with his story and the stories of the people who surrounded him during the last months of his life and make up your own mind.
When you have completed the journey, ask yourself: Did Craig do the right thing? What would you have done if you were Craig or his parents? Could it have been done any differently? Should it not be easier? Where do we go to from here?
Patsy and Neville hope that this book, this story of Craig’s life and his death, will not only bring meaning to his suffering, strength and determination but also open the way for others with terminal illnesses or life-threatening diseases who believe that they too have a last right to die in peace.
Marianne Thamm
1The Beginning
PATRICIA MARILYN GILBERTSON and Neville Carstens Schonegevel were married in the Mater Dei Catholic Church in Port Elizabeth on Saturday, 6 July 1974. She was 23 and he was 26 and they had met three years earlier while
