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‘Amazing’ Experiences of Palliative Caregivers in South Africa

  • Darren Taylor

“Lots of amazing, happy things happen here, where families come together because they want to complete certain cycles of life,” says Cameron Hogg, psychologist at Wits Hospice.

The bald, bearded man draped in a royal blue kaftan is spiritual advisor to nurses and patients and their relatives at the facility in Johannesburg’s smart Houghton suburb.

He and the staff he supervises are palliative caregivers, trying to ease the physical, emotional and spiritual pain of people who have life-threatening and incurable diseases.

“We had a young woman here whose greatest wish was for her dad to give her away in marriage. He was here as a patient and he was getting worse and worse; he didn’t have long to live at all,” Hogg tells VOA.

Frantically, the counselor and his colleagues tracked the daughter’s fiancé down and summoned him to the hospice, where a priest was waiting.

They made a bouquet of flowers collected from other patients; a nurse lent the young woman a ring.

The wedding ceremony was conducted alongside the bed of the patient, who Hogg describes as “almost comatose.”

“When we asked: ‘Who giveth this woman to be married to this man?’ Her dad sat up, took his oxygen (mask) off and said, ‘I do!’ He put his oxygen back on, leaned back, we finished the service, and he died.

“And there was all this emotion, this joy of being married; the tears of the father – just an incredible, incredible emotional and spiritual experience of the things in life that are really important.

“And that is what it means to die in a state of grace.”

Secrets and ‘strange things’

Rian Venter, a nurse who specializes in palliative care at West Gauteng Hospice in Krugersdorp, near Johannesburg, says many patients, knowing they’re about to die, “unload their life’s secrets” on him.

“Sexual peccadilloes are a big one, a real favorite” to spill on a deathbed, he says, smiling wryly.

“A 92-year-old person starts talking about their wonderful sex life, or a wonderful affair that they had. Nobody in the family wants to hear about that! But they want to talk about it, so we can talk about it,” says Venter.

He maintains that his work with terminally ill people has taught him that everything that happens to human beings is normal… because it’s real.

“As people hide from the reality of death,” he says, “they hide from the reality of other perfectly normal human functions – because society or certain cultures have put a blanket over it. Now we don’t mind the blanket falling off and whatever we find there we cope with.”

Venter pauses and adds, “That said, very inexplicable, strange things happen here… Things that scientific people laugh at…”

He tells of elderly patients who emigrated as babies from Eastern Europe and other foreign climes to South Africa, who begin speaking in languages their children insist they could never previously speak.

“They go back to their emotional roots,” Venter says. “And you’ve got to be able to go there with them… You’re not there to quantify and qualify. You’re just there to be there for them, exactly where they find themselves.”

Bucket lists

Venter says impending death “frees” and “inspires” some patients to be “exactly who and what” they want to be, and to have experiences they previously never would have dreamed of.

“I have personally seen the most unbelievable things happen if people suddenly know that they actually are going to die.”

Venter says one of his patients was a commercial artist who painted “until he literally couldn’t pick up a paintbrush anymore.”

Patience Machetu, a nurse at Wits Hospice, has known people who complete their “bucket lists” shortly before they die. Some go bungee jumping, sky diving, motor racing…

Machetu talks about terminal patients who write books within weeks, and eat foods they’ve never eaten before: “Crayfish, calamari, you name it.”

The nurse continues, “There was a woman who told me she had been obsessed with being thin her whole life so she had never really enjoyed eating. But when she found out she would soon be dead, she went out and ate whatever food she wanted. Then she told me: ‘Wow, I missed out on so many wonderful things in life…’”

‘Better people’

Venter has known dying fathers who for the first time show an interest in their children. “For the first time in their lives, they experience how special it is to give love,” he says.

Venter says the awareness of approaching death often heals relationships. “You find weird things happening,” he smiles: Spouses divorced for many years return to care for the dying partner. An estranged son or daughter returns.

“I’ve had people who are dying tell me that they’ve never had a better relationship with their spouse than on their deathbed,” he says.

Venter says approaching death “forces” some people to respect one another and to finally acknowledge their failings. “It teaches them to love and appreciate each another. They become better people.”

Cruelty and abuse

But hospice staff also witness the “dark side” in some patients’ final days, says Venter, emotions and beliefs they’ve kept hidden all their lives.

“I’ve been shocked and saddened by the things that people do to one another, especially in families that have been well-known and respected as being very religious and intellectual,” says Venter.

“The disregard, the cruelty that you find in an environment where you really wouldn’t expect it, where, in fact, a lot of intense abuse has taken place over many years. But the person has always hidden it because it was improper to talk about it or even to admit that it was there.”

Patients are relieved when they share the burden, Venter says, when they talk about the crimes that have been committed against them.

“Then a kind of peace descends on them. Some of them laugh and say: ‘I know I’m dying, but for the first time in my life I’m truly happy.’”

Crimes against the dying

Hogg says “terrible events” sometimes occur in the lives of his patients.

“I’ve had patients lying in bed near end of life and their child is killed in a car accident. That’s indescribable trauma.”

He adds that some of his dying patients have been carjacked, and have been victims of other crimes.

“It’s mind-blowing to think that intruders would come into a house and tie up a patient with their own oxygen cable and lock them in a cold bathroom on the floor, and ransack the house.”

Hogg’s voice softens and his words come slowly, as if he’s very tired. “Certain challenges in this job are really testing; they make you question what it means to be human…”

He tells of a woman dying of cancer being violently assaulted on her deathbed; patients who are unable to move being raped in their homes.

Some of Venter’s patients have died because of violent crime.

“I can deal with someone dying because of an accident or cancer or whatever. (But) a person who dies as a direct result of very cruel actions by another human being intentionally – I still have to speak to myself silently about that, to cope with it,” he says.

He remembers a patient in her 20s, dying of a number of untreated infectious diseases she contracted while a sex slave at a miners’ hostel.

“She had been there since she was a small child,” says Venter. “We worked with her a long time. We tried to get her on track with treatment.”

But, says the nurse, as soon as the woman had the chance she returned to the hostel.

Hospice staff never heard from her again.

Venter sighs, “She’s surely not alive anymore.”

Such are the “mysteries,” he says, that palliative caregivers constantly have to deal with.

Suddenly, Venter laughs. It’s an outburst that’s a mixture of sarcasm, disbelief and deep knowledge and experience.

“Actually, we’re not in the business of solving problems,” he says. “We don’t have any answers. All we have is our belief that everyone, no matter how good or bad they are or might have been, deserves respect in the final days of their lives.”