Mark O’Rourke’s hair was fashionably gelled. He stood up from his desk, moved past the magazine beach scenes adorning his pin board and extended a cheerful hand of greeting. He looked younger than his 32 years and his green eyes sparkled with an obvious zest for life.
But awkward movement and two steel crutches belied his demeanour.
Eight years ago, O’Rourke began to suffer from unexplained back pain. After four years of misdiagnosis by state doctors and “the most extreme pain you can imagine”, doctors told him he had cancer in his spinal cord. He was operated on three days later.
“After the op I thought my life would go back to normal,” he said. But the surgeons could remove only 60% of the cancer and deemed his condition “inoperable”.
His life descended into a jumble of waking and sleeping, governed by one discernible element: pain. “You don’t have a life. All you think about is pain.”
Fill the gap
O’Rourke turned to alcohol “to fill the gap”. His life spiralled into a well of despondency. One day he woke up in a hospital bed after trying to take his own life. “I almost chopped my whole hand off. I had hit rock bottom.”
At that time the Cancer Association of South Africa, acting on the request of a friend, gave O’Rourke’s details to Hospice.
Within a week, sister Francis Hozaks from the Hospice Witwatersrand, arrived at his home. There she made him a longed-for promise: “This is the last day you will live with pain.”
Two months ago, O’Rourke’s diagnosis went from inoperable to terminal. But still, “life [now] is fantastic”, he said. “When the pain is under control, then your mind can settle on what it wants to do.”
For O’Rourke, one of those things was skydiving — a life-long dream he realised the week before the interview.
“There are no words I can use to describe Hospice. I can only say that, as tough as I am, if they weren’t in my life I would be dead,” he said.
His story is mirrored by thousands of others. At a time when the debate about the legalisation of assisted dying and euthanasia is growing, there is a cogent alternative — increase the country’s levels of palliative care and there will be less of a demand for euthanasia.
“Proper palliative care will mitigate most people’s desire to die,” said Dr Natalya Dinat, former head of the centre for palliative care at the University of the Witwatersrand.
Dr Liz Gwyther, chief executive of Hospice Palliative Care of South Africa, said: “The societal debate around euthanasia is fuelled by fear that dying will be a drawn-out, painful process. However, pain is one of the symptoms palliative care doctors and nurses can treat effectively. If all doctors and nurses were trained in palliative care, including pain management, this would be recognised as an unrealistic fear.”
Sister Sheilagh Lace, who has been a palliative care worker at Hospice Witwatersrand for the past 24 years, said: “Many patients will say: ‘Can’t you give me a pill and finish it off?’ And that usually means ‘I’m very scared that I won’t cope with the pain’. But when they [understand that we can control their pain], they don’t want the pill any more.”
Gwyther said palliative care was largely ignored by South African mainstream medicine, which gave support to the euthanasia debate.
Dr Brent Tipping, specialist geriatrician and physician at the University of the Witwatersrand Donald Gordon Medical Centre, agreed. “Both the state and private sectors [of palliative care] are vastly underresourced and neglected. Few medical aids actually provide access to this form of care.”
Gwyther said the trend was to focus on acute care or chronic illness and “abandon” deteriorating patients to the care of their families.
“Medical practitioners put more focus on the disease than on the person,” she said.
Lace believed some doctors saw patients as a “business transaction” that lost economic viability once the patient became terminal. “It sounds rather harsh, [but] it happens every day,” she said. Lace also recounted her own repeated experience of seeing hospital doctors “glaze over” and fail to “hear or see the dying patient’s need”.
Tipping said doctors were often reluctant to refer patients for palliative care because they were “frequently in denial about patients dying”. In the medical world, “death is often viewed as a failure outcome”, he said. Thus, doctors try to keep the patient alive, often an unrealistic undertaking. Gwyther added that when it became clear the patient was dying, some doctors switched off psychologically to avoid a sense of personal failure.
The lack of emphasis on palliative care is reflected at an institutional level as well. Gwyther, who is also the head of the palliative care unit at the University of Cape Town, said there was “very little” palliative care training in South African medical schools. She said the university spent only 47 hours on it during six years of medical training and other South African universities even less.
According to Tipping, although most undergraduate medical school programmes have a palliative care section, medical trainees frequently “do not have the insight to appreciate the importance of this”.
Care as relief
The hospice association lists some of the functions of palliative care as relief from pain and other distressing symptoms, affirming life and regarding dying as a normal process integrating the psychological and spiritual aspects of patient care, offering a support system to help patients’ to live as actively as possible until death, and to help families to cope with the patients’ illness and with bereavement.
“My technique involves a lot of reassurance and direct talking,” said Lace. “You’ve just got to be open, honest and reassure them: ‘No, you’re not going to be screaming your way to death.’
“We link up with the oncologist, the family doctor, the social worker, the spiritual counsellor,” Gwyther said. The result is that “people are better informed and [their] clinical condition is better controlled.
“A lot of times fear is behind a patient’s desire to die,” she said. Palliative care addresses the fears of the dying in a way that “helps them to find meaning in [their] life and death”.
A crucial part of this process is having a conversation with the dying patients and their families about the possibility of death. “We fool ourselves that we are in control of our lives, but when we get sick we realise we are not. People want to take back the control by deciding to die. [But often] when we have explored all of this, they are at peace with [a natural death],” she said.
Distorted idea of dying
Palliative care should become a “recognised discipline” in South Africa as in other countries, Gwyther said.
“Palliative care is the responsibility of all health professionals involved in the care of patients,” said Tipping. “It should continue to be an important postgraduate training plan and should really be focused on for all specialists and subspecialists as well.”
For Lace, the “distorted idea of dying” needs to change as well. “Our job is that part of living that involves dying.”Said Tipping: “The reality is that everyone will die at some time. Humans need to accept the reality of death.”
And this had to be embraced by the medical world, Gwyther said.
“If [doctors] don’t see death as a failure but as a part of the cycle of life, palliative care is one of the most rewarding parts of the profession to be in,” she said.
After his first-ever skydive, O’Rourke, for one, would agree.