The empowered patient, the patient who has a right to his or her medical records, to give permission for specific procedures or to decline such interventions is a late-20th-century phenomenon. In the past, medical professionals were viewed as “gods” and their decisions were often taken without consultation or concern for the patient or the “sanctity” of life. Today, at least in most democratic societies, we live in a much more complex and sophisticated milieu when it comes to medico/ethical issues and it is time for the last hurdle – that of euthanasia and assisted suicide – to take centre stage.
In an essay on the right to die published in the New York Times* in 2007, writer and lawyer Ronald Sokol imagined a constitutional amendment that guaranteed “every person the right to die with dignity; this right shall include the right to choose the time of one’s death and to receive medical and pharmaceutical assistance to die painlessly. No physician, nurse or pharmacist shall be held criminally or civilly liable for assisting a person in the free exercise of this right.”
Sokol suggests that within the next half-century, or perhaps sooner, the right to choose to die with dignity will be as widely recognised as the right to free speech or to exercise one’s religion. He also imagines it will no longer be called euthanasia or mercy killing and will be viewed as “a fundamental human right”, as expressed in the proposed amendment to the US Constitution.
Craig Schonegevel is not alone. While his is a story of prolonged ill health, suffering and courageous but traumatic self-deliverance, there are many more South Africans who suffer daily in silence and who long for succour.
Since its launch in 2011, Dignity SA has received numerous letters from desperate South Africans needlessly suffering with no way out. One example is a plea from 31-year-old Katharine Hannah posted, with her permission, on Dignity SA’s website. It is reproduced here verbatim.
My name is Katharine Hannah, I am 31 years old and terminally ill with three brain tumours from metastasised breast cancer diagnosed in 2009, which I fought bravely, as there was hope.
Unfortunately despite registration some months ago, Dignitas Switzerland were not able to help me before I became too ill to travel without a medical support system such as the one I have in Knysna where I am currently living with my mother. I have no partner, no children, no job since diagnosis and no reason to prolong my life. I do not wish to let nature take its course, as after some 3 months my life is already unbearable. I am going blind, suffer bad intermittent headaches controlled by massive doses of cortisone which has destroyed my health in other ways, I have terrible and constant nausea, and I have spent the last few months in my bedroom with the curtains drawn. I wish to die sooner rather than later. I am hoping that you can offer some advice as to how I can end my suffering. What options do I have in South Africa?
For now, there are no options aside from palliative or hospice care, and even in these circumstances patients who are terminally ill and in pain are often not able to access necessary and vital pain-relieving medication. According to the Global Access to Pain Relief Initiative (GAPRI),* a joint programme of the Union for International Cancer Control (UICC) and the American Cancer Society (ACS), in 2009, at least 200 000 South Africans died while suffering moderate to severe pain, 111 307 of them without receiving any treatment for it.
GAPRI calculated the figures using South Africa’s cancer and HIV/Aids death statistics and these do not include other causes of death such as traumatic injury, death in childbirth and other fatalities. The organisation has calculated that the number of cancer cases is expected to double over the next 20 to 40 years and that by 2030 there will be 26 million new cancer cases and 17 million cancer deaths per year.
Some of those who argue against euthanasia and assisted suicide often suggest there is no need for it as the palliative care options at the end of life provide adequate relief, but it is clear from GAPRI’s research that this is far from true.
For several years now, Dr Liz Gwyther, CEO of the Hospice and Palliative Care Association of South Africa, has been lobbying for proper assessment and management of pain in healthcare institutions throughout the country. She has also lobbied for better management of morphine stocks for clinics, hospitals and healthcare facilities, as the opiate does feature on the Department of Health Essential Drug List but is poorly managed and is unavailable in many institutions. The result is that thousands of South Africans die needlessly painful deaths because of ignorance of pain-relieving medication and an unwillingness by some doctors and health workers to expose themselves to possible legal action.
The need for clear end-of-life decision-making must of course not be confused with the challenges and problems facing those who require palliative care, but the issues are intertwined in some way. Legal clarity would set deliberate medical and ethical parameters for those individuals, like Craig, who choose, voluntarily and under no duress, to end their lives with dignity. Those individuals who are opposed to euthanasia and assisted suicide are free to not choose this as an end-of-life option.
As Professor Willem Landman has suggested: “Medical decisions about life and death are controversial, involving some of our most treasured personal and religious beliefs. Still, controversy does not justify unexamined acceptance of the status quo.” He correctly asserts, “Dying is a natural and inevitable part of life. Unless we die an unnatural death, we will go through a natural dying process. For some it will be peaceful and dignified; for others it will be filled with pain, distress and suffering. We do not know which it will be.”
Craig knew and could foresee his future, the pain, distress and
