His thick fingers crackle across a large packet containing empty purple sachets labeled alcohol swabs, used syringes and a plastic sheath that a few minutes ago contained lactate solution.
Rian Venter has just helped a doctor at West Gauteng Hospice to give the solution intravenously to a patient suffering from a life-threatening liver condition. “We usually don’t do such procedures here in this office but it was an emergency; the patient was in great distress,” says Venter.
He’s a nurse specializing in palliative care at the facility in Krugersdorp, west of Johannesburg.
Venter and other healthcare workers like him ease the emotional, spiritual and physical pain of people entering the final stages of cancer, heart disorders, brain tumors and other incurable illnesses.
When organs fail, says the nurse, pain can become unbearable.
“We often see people who are in such excruciating pain that they can’t even move or they move in a very abnormal manner,” says Venter. “They just want to die.”
He says some patients ask to die. They “beg” for euthanasia. But, as “mercy killing” is illegal in South Africa, Venter’s unable to offer it to them.
The difficulties men have
Venter’s “hands are tied” regarding euthanasia, but he can provide “life-changing” medication to pain-wracked patients.
“Morphine is nectar,” he whispers. “Within days of getting the right medicines, with their pain managed, they become completely different human beings. They become able to think again, they become able to partake of life again.”
At Wits Hospice in Houghton, one of Johannesburg’s smartest suburbs, the stern-faced Patience Machetu also uses medicine to manage her dying patients’ physical pain. But she finds their emotional pain harder to handle, “because it’s about what the patient is thinking, and the fear and the stress of dying. Then there are problems at home, family dynamics, and drugs can’t manage this kind of pain.”
The 34-year-old nurse believes it’s especially hard for her male patients because they lose their dignity. She can almost hear men telling her, “I was a man. I was going to work. I was driving myself. And now, a lady has to come in and change me…’
“His dignity’s gone,” Machetu says, “because we come in, we bathe him; he can’t bathe himself. He can’t dress himself; we dress him. So it’s all that; loss of independence…”
Fighting death, then singing
In Soweto, the Diepkloof Hospice is near a tangle of dusty alleyways home to a few hair salons, each advertising services including “dark and lovely” and “easy waves,” each blasting the owner’s favorite tunes. The chaos and cacophony of the township is in stark contrast to the silence in the hospice’s pristine wards, where floors shine, buffed to brilliance.
Many of the patients at Diepkloof have life-long abnormalities, says inpatient unit head Rachel Mabena. “These are congenital diseases such as chronic obstruction of the airways, so they can’t get oxygen… Then there are those with brain tumors, dementia, infectious diseases…”
Whatever the condition, it will eventually lead to the patient’s death. At Diepkloof, Mabena’s colleague, Duduzile Tlhapane, tries to inspire her patients to fight physically and spiritually “up until the last second, even if you are just a parcel sleeping there in that bed.” They should, she says, “kick against death” even if their muscles are “locked up tight.”
Tlhapane tells them, “Life is a war. Try to eat, even if there’s no appetite. Make sure that you swallow, even if you’ve got a lot of thrush. You must fight because nothing comes easy in life.”
But, with a long sigh, Tlhapane knows when the time has come, when the time for rousing words and drum-beating is over. Then, she simply sings to her dying patients.
To demonstrate, she bursts into song. The clicks and cadences of the Xhosa language echo through a hospice passageway, her voice tremulous with emotion. “The song means that whenever you are in a place you think you will not survive, with the lord near you, you cannot lose, no matter what happens.”
Tlhapane’s eyes fill with tears.
“Singing that song, sometimes I even become emotional. Then I quickly run to the toilet, because I need not to be emotional in front of the patient. Then I wipe my tears; then I carry on with my song.”
But even the time for singing ends. The nurse nods her head.
Dying in Munsieville
Snowy Nkoana walks down a stony pathway in impoverished Munsieville, near Krugersdorp, where she has been a nurse since 1971.
The sun glints off empty liquor bottles and sparkles on her metal nurse’s nametag, wide sunglasses and large golden earrings. Her heels crunch in the gravel beneath her feet. A mangy dog barks at her; tin shacks bake in the heat. Nkoana greets women washing clothes in massive metal baths, their naked babies at their sides, tiny faces encrusted in snot and salty tracks of tears.
The women greet her with whoops of, “Sister Snowy!”
Nkoana comments, “Life has always been cheap here; I’ve watched many people die, especially miners, of various diseases and injuries.
“But yo!” she exclaims, slapping her hand on her thigh. “Things were really bad here in the 1990s, the early 2000s. I don’t want to tell you how many people I saw die of AIDS, how many funerals I went to…”
But, despite the great South African antiretroviral (ARV) drug roll-out a decade ago, people are still dying of AIDS-related illnesses.
“It’s breaking my heart,” Nkoana says. “HIV is still very stigmatized here, so some people don’t go to the clinics for the ARVs because they don’t want to be identified as having HIV.
“I beg them to take their pills, but some don’t…”
Without the pills, Nkoana says her HIV-infected patients become “very small” and “turn into skeletons.” On their deathbeds they tell her: I’m so cold. Hold me. Please. Hold me.
“I embrace them,” she says. “I say something softly to them. Like, ‘It’s okay, it’s okay; it’s okay. Lie down, lie down…’ The patient must feel that you are there; he is not alone.”
Some go fast, says Sister Snowy. Others take long to die. But, sooner or later, all of them “melt” into their beds ... and are gone. First, they become quiet. There is a change in breathing.
“There might be some noises when they breathe; that is the death rattle.” Nkoana coughs hoarsely to mimic the sound.
The same sound rings constantly in Machetu’s ears. It’s a sound she tries to forget, but can’t. “It’s a sound unlike any other, a sound that comes from deep inside them. Some say it’s like a percolator, a coffee percolator,” she says.
Her throat contracts into a scratchy, raspy sound.
Tlhapane mumbles, “You know someone is going to die when they are completely dehydrated and helpless. Then, all their systems start to fail.
“You cannot do much then. You hold their hand. You apply Vaseline to the lips. You wipe the sweat. You wait…”
She watches the patient’s skin change color, the body turn cold.
Says Venter: “A man will tell me, ‘My wife’s feet have suddenly gone a dark color and they’re cold…’”
Some of his patients begin to look abnormal. “For example, if there’s a vital organ failure there can be swelling of certain parts of the body… The body can twitch…”
Finally, says Tlhapane, the patient stops breathing. Some close their eyes and die, and appear as if they’re sleeping. Some look like they’re smiling. Others look “frightening;” with teeth exposed, they die with their eyes wide open.
“We close the eyes,” says Tlhapane. “We clean the mouth, we close the mouth. Then we dress him properly; we check him if he’s wet or something else, then we put him or her in an appropriate way.”
‘Enormous privilege’
Some patients do not go quietly… Venter says some are loud and aggressive, because they don’t want to die. “That is usually a very bad situation for everybody because emotionally it’s very uncontained, it’s unmanaged and it is dreadful for people.”
Some patients in the final throes say things that disturb their loved ones.
A man in middle-age reverts to a child’s voice when his mother comes to visit.
“Some people believe that it’s almost a demonic manifestation,” says Venter. “Others believe it’s an angel.” Some people say their dying relative is delusional.
Venter says he tells them, “Well, he’s entitled to be delusional. He’s dying!’”
But it’s Venter’s child patients who remain alive, in his mind, in his dreams. He waits at the bedside for the suffering of the “tiny body” to end, witnessing the anguish of the parents.
Venter tries to be a pillar of strength as all those around him “drown” in a surging “sea of pain.”
“I can sit there for hours and I can silently cry if it’s necessary. I can be extremely strong for people. I’m very honest about my own emotions. I honor my own emotions, so I honor the child in me,” he says.
Like many palliative caregivers, Venter says being present at someone’s death is an experience he never takes for granted. “I see it as an enormous privilege. It’s an honorable estate, to be allowed to assist with something so profound.”
