A loud laugh creases Jack Kieser’s tanned face, wrinkled, worn and weathered by age and a lifetime under the African sun as a construction worker and seaman.
“I used to be in the navy. I loved it. And the ladies, they used to run around me when I was in my uniform,” says the 74-year-old, grinning.
He was also a keen soccer player… before his knees gave in.
“I played on the wing because I was so fast. Actually, I’m still fast,” he chuckles, his crutches carrying him at a surprising pace across a floor in the West Gauteng Hospice in Krugersdorp, near Johannesburg.
Kieser has been diagnosed with terminal stomach cancer.
“Every month the experts say I have a few months left to live but I just carry on going,” he scoffs.
But he’s often in excruciating pain. He is, however, receiving palliative care from nurses and a doctor at the hospice.
Palliative caregivers ease patients’ physical pain with medicines, and they provide psychological, emotional and spiritual counselling to people who have life-threatening and terminal illnesses.
“If it wasn’t through hospice, there’s no way my pension could cover the costs of the medicines that they give me, let alone all the counseling and advice,” says Kieser.
In northern Johannesburg, in the suburb of Houghton, Peter Cunnington, who has colon cancer and has to wear a colostomy bag, is being cared for at Wits Hospice.
The 69-year-old says he can’t compare the treatment he received in various hospitals since his diagnosis with that which he’s currently getting from specialist palliative nurses.
“They see me as a human being. At hospital some of the nurses made me feel dirty and ashamed,” says Cunnington, weeping. “They make me want to live. There is empathy that they feel… that I will never ever forget this place for, ever.”
A basic human right
Kieser and Cunnington are two of the few terminally ill South Africans who have access to palliative care. Thousands don’t receive it, despite the country’s high death rates from infectious diseases, cancer and heart disorders.
“Most of these people, because they’re poor, die in pain and despair, without receiving the benefits of palliative care that would have prolonged their lives and allowed them to live with a measure of joy and peace and even productivity in their last days,” says Rian Venter, director of West Gauteng Hospice.
The government doesn’t fund palliative care; it’s almost exclusively available at privately funded institutions. What the state does fund, at a cost of many millions of dollars, are drug programs to combat tuberculosis and the more virulent multidrug resistant (MDR) TB, and the world’s largest antiretroviral therapy (ART) rollout, giving medicines to almost three million people living with HIV.
Venter comments: “I understand that governments should prioritize keeping people alive. What I don’t understand is why, given South Africa’s massive disease burden, there’s not one cent given by the state towards helping people to die in the best possible way.”
Johannesburg physician Wayne Korras describes palliative care as a “severely neglected” aspect of South Africa’s healthcare system.
“I hardly touched on (it) at university… This isn’t good enough. I think palliative care should be a subject at every medical faculty. It’s critical for every doctor… because there will come a point where all patients need palliation. And so it should be prioritized and you should write exams on it…”
However, palliative medicine and palliative nursing are not recognised healthcare specialties in South Africa.
Only one university offers a postgraduate program in palliative medicine; a few others offer only limited undergraduate courses.
Venter says this context fuels “astounding all-round ignorance” about palliative care.
“Most health professionals I’ve met don’t recognize the advantages of palliative care. How can they, when they don’t know what it is?
“You have medical professionals who phone and ask, ‘Now what is palliative care actually about?’ They have no concept.”
He says even top surgeons think that palliative care involves nothing more than keeping a “death watch” over a patient’s bed… But in reality it’s “the scientific application of knowledge and the creative use of that knowledge to make life better for a patient who is dying. But the medical community mostly doesn’t know this.”
Because of this ignorance, says Wits Hospice psychologist Cameron Hogg, patients often arrive at hospices at such a late stage that they receive only “minimal benefit” from palliative care.
“People in general, including health professionals, stay as far away from hospices for as long as possible, until it’s too late.
“There’s a kind of sense (of), ‘My God, if I engage hospice, I have given up – which is totally incorrect.
“By engaging hospice you are saying: ‘I am conscious of the challenge. If medicine is going to have any (positive) effect at all, I also have to have the right mental, emotional understanding of what I’m going through.’”
‘Mindset shift’ for better palliative care
Hogg believes the first step towards establishing palliative care in the country’s health system is to teach its fundamentals to all medical students.
“I’m not saying every person who graduates from medical school must be an expert in palliative care. I am saying that everyone who graduates from medical school must be aware that palliative care, especially the spiritual and emotional parts of it, is an essential component of healthcare for all people who have life-threatening conditions.”
Venter says a “complete mindset shift” among citizens and health professionals is needed to “do justice” to palliative care.
“This won’t be easy to achieve, but society has to start working together to get closer to this goal, otherwise our people are going to continue to suffer needlessly when they are in the final days of their lives.”
Hogg agrees, saying a “radical overhaul” of the way in which palliative care is seen is needed.
“It should be something everybody invests in; it should be something that’s part of our medical aids. We pay vast amounts of money to ensure that a medical aid company can keep us alive, and then come end of life we’ve got like a two week or three week allowance? That’s unrealistic.
“There’s got to be a heightened consciousness in all spheres of society around the inevitability of dying.
“So medical aids, insurance companies, all the people that take our money for life, should also be taking money and saying: ‘I will invest in a fantastic end of life for you as well!’ Banks should offer you a fantastic end of life investment package.”
Venter’s convinced that South Africa cannot call itself a “human rights culture” if it continues to turn a blind eye to the suffering of its dying.
“It’s going to take a concerted, complicated campaign but there are great minds in this country who I am certain can achieve the dream of all South Africans having the right to palliative care.
“Let hospices, the health department, private and public medical professionals, medical aids, the financial sector – come together to ensure that South Africans receive dignity in death.”