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The Trauma of Caring for the Dying in South Africa

Rachel Mabena arrived at work at Diepkloof Hospice in Soweto a few months ago to find fellow nurses “flying past” her, fleeing the premises.

Some remained in the wards, but were silent.

“I tried to talk to them, to find out what was going on, but they just shook their heads and stared at me,” recalls the head of the facility’s inpatient unit.

Other nurses wept.

Eventually a colleague led Mabena to the bedside of a patient who’d been admitted shortly before the senior nurse’s arrival.

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Eventually a colleague led Mabena to the bedside of a patient who’d been admitted shortly before the senior nurse’s arrival.

“What I saw was one of the most terrible things I have ever seen in my long career,” she whispers, grimacing, her words still clouded with horror.

“Maggots coming out of the orifices of a person… They were like on the face, they were like flowers…”

Mabena says the 47-year-old woman was being “eaten alive” by the fly larvae.

Maggots, found in decaying matter, were “attacking this patient’s brain, doing the job of eating, eating, eating,” the nurse recalls.

“It was so easy for these worms to enter this woman’s head because she was riddled with cancer. There were holes in her head, in her ears, near her eyes. That’s how the worms got in… I don’t know how this woman was still alive. She was rotting away…”

Mabena prayed and called out to the patient, “‘Hello, hello, hello… Are you okay?’”

The woman replied, with a squeal, “‘Yes, I am okay…’”

“I had to be the strong one,” says Mabena. “I got warm water, with a lot of salt in it. I had to clean, clean, clean the patient. That day I did not sleep.”

Mabena is a nurse specializing in palliative care, easing the physical, emotional and spiritual pain of patients with incurable and life-threatening diseases, injuries and conditions.

Her colleague, Duduzile Tlhapane, says she still can’t forget the patient Mabena had to clean. “The picture of that woman in my mind, I can’t erase it. Even now, I hear her voice.”

‘Trembling, weakness…’

Mabena says, “This work empties you. Then we are down on our knees. And then we cannot do anything anymore. And then there’s just trauma…

“You see the shivering, the trembling. The weakness, you see all of it…”

Tlhapane interrupts. “I love my work,” she says, “but it is not the kind of job you can switch off. Even at home, even when I am off, when I’ve left the patient that is very sick, I always think about him or her.”

When Tlhapane returns to work after having left a patient, she always checks the hospice noticeboard for his or her name. “If the name is no longer there, I will know that the patient is deceased,” she explains.

Nurse Snowy Nkoana has been involved in palliative care in the townships surrounding Krugersdorp, west of Johannesburg, for 42 years.

“This kind of work, you don’t just do it,” she says. “It must come from the depth of who you are. You give it your soul, your spirit, your heart. You do it for the love of people. You do it because you want to give to somebody.”

Miners with respiratory illnesses, bodies broken in mining accidents. Children with brain tumors. Babies “barely born.” Victims of brutal crimes. People “poisoned into corpses” by AIDS. All have died in Nkoana’s arms.

But sometimes she gets tired of holding people; sometimes she says she wants to be held, too.

“We nurses here, we have to be there for each other because people out there, they don’t understand really what we do,” says Nkoana. “They’re afraid of us people of death. They can’t speak about death, they can’t relate to it, because it’s taboo. So we are taboo…”

‘Plugged into pain’

Nkoana’s supervisor at West Gauteng Hospice is palliative care specialist Rian Venter. He holds her small hand in his and acknowledges that people fear death and those who care for the dying. “They don’t really regard palliative care workers as ordinary human people,” he says.

Venter reflects that sometimes a lot of his patients die in a very short period of time.

He recalls 11 dying within a few days.

“Then we meet and Sister Snowy begins to list all the people who’ve died. When Sister keeps on: ‘And so and so died,’ I would say to her, ‘Now how many are going to die before the end of this day?’”

Venter and his colleagues debrief one another and talk to psychologists.

“But at times it’s still all too much,” he says. “I’m aware of a few palliative care workers who’ve completely lost it… One hospice nurse cannot let go of the file of a patient who died years ago. She still needs something tangible about that patient near her…”

Nkoana says she often tries to relax at home by watching something “light” on TV… But instead she usually tunes in to international news channels. “Al Jazeera is my favorite,” she says blandly.

The nurse’s eyes are then “fixed” on images of conflict, the usual litany of bombings and beheadings.

“It makes me cry a lot. Then I ask myself, ‘Why am I watching this?’ But I can’t stop, I keep on…”

Again, Venter strokes her hand with his. Nkoana giggles, trying to explain her behavior: “Then I tell myself: ‘Snowy, it’s something else to pray for, this stuff on Al Jazeera. Let me watch it…’”

Inside Wits Hospice in Houghton, one of Johannesburg’s poshest suburbs, Patience Machetu watches a new patient being admitted.

The woman is slumped in a wheelchair, its frame rattling and wheels squeaking across the floor of a sunny room filled with the sweet scent of flowers.

“When I see someone coming in, a 30-year-old lady, with cancer, dying… It’s not easy to see it; it’s not easy to deal with. I start examining myself: What am I going to do if I get into such a situation and my daughter is only five?” says the 34-year-old nurse.

Machetu says she tries her best not to become “emotionally attached” to her patients, but “never” succeeds.

“Each death breaks me a little more. Sometimes I feel I can’t go on; I don’t want to know what’s next,” she acknowledges.

Like Machetu, Venter says he’s spent “years” wrestling with his chosen vocation.

“In the past I did question the right I have to be with people who are dying. At one stage, I was almost fearful of it. I wondered if I’m actually supposed to be doing this, if I have the human ability to do it.

“But over the years I’ve realized that if I don’t help these people, they won’t have anybody else. And that one enters an amazing state of grace in this work that sets it apart from almost all other jobs.”

Cameron Hogg, psychologist and spiritual advisor to patients and staff at Wits Hospice, says the “great thing” about being in palliative care is the “enlightenment” it brings.

“You work all day with stuff that’s absolutely real. When you’re doing this work there’s no more bullshit,” he says. “This has got nothing to do with whether you’re fat or thin or clever or stupid or if you’ve got money or haven’t got money. And you can go upstairs to our 14 bed unit and there’s not one person that’s lying up there that says, ‘Listen, a Ferrari right now would really help the process…’”

Unforgettable patients

The nurses emphasize that it’s their patients, the very wellsprings of their trauma, who also keep them alive and inspire them to “a greater humanity,” as Tlhapane puts it, recalling her cancerous patient infested with maggots.

“That lady was a fighter. Even the bed where she was sleeping in, when every day I enter that room I always salute that bed. She was a fighter, even in her last moments. I won’t forget that woman. I always hear her voice, whenever I’m stressed.

“She was in so much pain, but she was so strong. Even when we were hurting her, cleaning her wounds, she cooperated. She would even help me to put her own bandages on.

“I learned so much from her. Whenever I feel weak in life, I think of her. She was a privilege. She made me believe in God.”

Machetu remembers one of her patients, a relatively young man.

“He had children aged 13 and 16. He had every right to be bitter and angry…”

Yet, she says, he was always smiling and laughing.

“He was a very sweet, nice person, and you just grew close to him. He liked talking. When his family was not there, we went in and we chatted, and we chatted. He gave my daughter a book, a storybook…

“I still read that book to my daughter. When I do, I think of that man, a real gentleman, until the last second. He taught me the value of kindness.

“It’s those patients you don’t forget. You give them something and they give you something back. Some give you wisdom; they end up counseling you, when you should be counseling them!”

At a bedside in Diepkloof Hospice, nurse Tlhapane listens to a patient’s heart rate monitor and says, “Some of my patients teach me that people on a deathbed can be the most alive.”

She recalls a 72-year-old woman with cancer.

“Hayi, she loved talking! One day she told me how happy she was that this slow death of hers had given her time to reconcile with certain people, that it had actually taught her to love for the first time in her life.”

But eventually, says Tlhapane, the woman fell silent.

“She was so ill she couldn’t talk anymore. I was deeply hurt. My friend was no more…”

Then, just before she died, the patient spoke.

Tlhapane remembers her final words: “‘God has given me strength. Father, forgive me. Father, thank you. Lord, thank you, for waking me up.’”

Hogg reflects the feelings of many in palliative care when he maintains he’ll never abandon his work, despite its extreme stresses and strains.

“Not ever in my life!” he seethes.

“It is the most enriching; it is the most energizing work that’s humanly possible. I feel sorry for all of you that do mundane jobs.”

Hogg continues, “Every day of my life I meet the most incredible people, phenomenally powerful souls. Must I give this up because it’s hard and not nice and ugly and painful? Not a chance.”