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‘Drawn to Death’: Invisible Heroes in South African Health

A candle burns in a corner of Rian Venter’s office, beneath a rack of wooden walking sticks. Water bubbles from a small fountain across the room.

“I love water; it relaxes me; it symbolizes life,” says the burly silver-haired director of West Gauteng Hospice. “I’d like to die with the sound of running water in my ears.”

Venter is dressed in a kaftan striped with turquoise, tan and mauve fabric. Crystals are tied to his wrists. Against a wall, a pile of fluffy toys teeters. Teddy bears, a stuffed lion, a monkey. Some of them belonged to Venter’s children. Children who are now dead. He held some of them before they died. His was the last face they saw.

Venter is a palliative care specialist. His patients have cancer, pulmonary diseases; cardiac disorders… “You name it; we have it here. We deal in death,” he laughs.

“We try to ease the emotional, physical and spiritual suffering of people who are terminally ill, or have incurable diseases,” he says. “Everyone has a right to a better-quality life in their final days. We acknowledge that the person is fully alive until they actually physically die.”

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West Gauteng Hospice is in the mining town of Krugersdorp, at the end of a seemingly endless industrial wasteland west of Johannesburg. To reach it requires a journey past charismatic churches, sex shops, pawn shops, liquor stores and fish ‘n chip takeaways, the acidic aromas oozing from their doorways mixing with smells of oil and petrol from used-car dealerships and scrapyards.

Hospice among the mansions

Cameron Hogg also wears a kaftan, royal blue and lined with purple paisley. His wrists adorned with elaborate bangles, his fingers imprisoned by thick gold rings. He does the same kind of work as Venter while serving as the spiritual counselor at Wits Hospice … A world away from Krugersdorp, in the plush Johannesburg suburb of Houghton; its accoutrements include mansions, Lamborghinis, and captains of industry and their perfect-looking wives.

“I’ve been to many places but I find South Africans very tuned to death,” states Hogg. “We take death very much as part of our life because so many people in this country have experienced death, whether it’s a loved one or friend killed by criminals, or a relative dying of infectious diseases like AIDS.”

He’s bald, with a goatee and piercing blue eyes. He supervises the Wits Hospice nurses and on a flipchart behind his head, scrawled in red, are the words of Maya Angelou.

‘I have learned that people forget what you said, people will forget what you did, but people will never forget how you made them feel.’

Hogg deadpans, “We are the people drawn to dying and death. We are not here to fix things. We are not here to cure… We can’t change the course of the disease; we cannot stop it happening. What we can do is to support our patients to have a better (death) experience.”

Breaking the news

Every week at West Gauteng Hospice, Venter has to break “devastating” news to patients.

“I will have four, five, eight sessions of telling people, looking them in the eye for the first time and saying: ‘Yes; you are going to die.’”

He says their reaction is usually shock and fury.

“They’ve gone through many phases of treatment and they’ve been told, ‘You’re better now; you’re cured.’ A while later they’re told, ‘Well, actually, your cancer is back now’ and then, ‘Your medical aid is depleted, and we’re not going to be able to pay for this kind of treatment; it’s not going to be worth it.’ We find incredible anger then…”

Hogg says people think they have the “automatic right” to live long enough to die of old age, and when that ‘right’ is taken away from them, they feel “pained and violated.”

In the chapel at Wits Hospice, under a window stained with colorful glass flowers, Patience Machetu says some of her patients and their relatives never get over the “bitter stage.”

The 34-year-old nurse from Zimbabwe is a devout Catholic. She often hears dying patients arguing, “This is not right. Why would God do such a thing to me?”

She recalls a man whose wife was dying telling her: “‘My wife went to church. My wife paid tithes. My wife prayed. So, why would God give her such a burden of having this kind of disease?’”

Death is a taboo

In Soweto, a massive township where many people are unemployed and live in shacks, Rachel Mabena and Duduzile Tlhapane care for people infected with HIV and MDR (multidrug resistant) TB.

These chronic conditions can be successfully managed - if the infected have access to the necessary medicines, and if they take the drugs properly.

“The reality is some people here don’t, and so they reach the stage where they cannot be saved,” says Mabena. Her tiny office is next to the children’s ward, its walls decorated in pastel shades and images of African animals.

Tlhapane comments: “Black people are not like the whites; they don’t talk about death. That word is taboo in our cultures. You get patients here who die without ever having used that word.”

Mabena, the head of the Diepkloof Hospice’s inpatient unit, says terminal patients fear the unknown. ”They don’t communicate it, but you see the fear in their faces, in their eyes. Some patients are very restless. Some are withdrawn, some are even irritable. Some are even rude, sorry to say that.”

Tlhapane says when death is near, patients’ questions become simple and matter-of-fact.

“Am I going to be able to breathe normally?”

“Am I going to choke to death; am I going to starve to death; am I going to be dehydrated to death?”

“Am I going to be in pain?”

Younger patients

Machetu says the dying worry about loved ones they’re going to leave behind.

“If they’ve got young children the stress on them is overpowering. They wonder who will take care of the children when they are dead.”

Hogg and Venter have watched the demographics of death change: they see more people in their 30s and 40s dying of cancer. “They have young children, young families,” says Hogg. “So we also have quite a comprehensive program to support children experiencing their parents that are dying.”

He thinks modern-day fast-paced, unhealthy lifestyles are at least partly to blame for the younger patients coming into hospice.

Dealing with death

Hogg says people generally plan for everything in life – except death. “We know how we want to retire, we know how we want to live our lives, we know how much money we should have; we know what minerals and vitamins we should be taking. We know everything in the book.

“But when you ask people, ‘How do you want to die,’ they have no consciousness about it at all, as if it’s not going to happen to them.”

He adds that relatives are furious when they’re told that a loved one is about to die. “Most people I meet believe they should be protected from heartbreak and pain, because humans are conditioned to run away from pain,” says Hogg.

As hard as it is, he says, he tells the relatives: “Let your heart be broken. See what you get from that experience. You will be richer, not poorer. You will be better able to love because your heart has been broken, not unable to love!’”

Venter teaches that if the pain of a disease is managed, death isn’t a negative experience, that it’s normal. He tells patients it’s the same as being born, or having your 21st birthday.

“Today is your last day, and you can live it as fully as you lived your first day of being sweet sixteen. There’s no difference, whatsoever. You’re still alive, you’re still here, and you’re still now,” he maintains.

Both Venter and Hogg say some people laugh at their advice, and scoff in their faces.

The moment life ends

Palliative caregivers recognize a special moment for patients who accept that they’re going to die.

“Something comes over them; a kind of peace; they begin to shine,” says Venter.

Hogg adds, “There’s a new consciousness that comes over the patient; there’s a new physical look. And probably what we would call a surrender. The person let’s go of the roles they have held in life.”

Those patients are no longer traumatized, Hogg believes. They have accepted death as a “natural life process” and they let go of all expectations.

But the moment doesn’t come for all.

“I had a throat cancer patient who could have lived significantly longer if he had allowed himself to be fed,” Venter recalls. “He refused. He basically starved to death. That’s the way he chose to die, and you have to respect that. But it’s hard; it’s hard to witness things like this…”

Hogg remains philosophical.

“If that is the correct journey for that soul, while it may not be ours and we may not be able to manage it, we have to honor, what is in front of that patient,” he says.