Siyabonga Sibiya, 41, is alone and stricken by an awful, unrelenting pain. His groin feels permanently on fire.
He lies in bed all day, dejected and alone. When he gets up it is to mop the sweat that seems to pour endlessly from his brow. Ten years ago, he had a girlfriend and a job as a security guard. Now he lives in abject poverty, without family or friends.
The only support he gets is from a friendly neighbour who braves the ridicule of the community to visit and occasionally bring him food, or to lure him out of his home in Inanda, north of Durban. Sibiya’s only other visitor is Sizakele Mlambo, a palliative care worker from the Highway Hospice, a Durban charity whose staff visit more than 600 terminally and chronically ill people around the city every week.
“This thing,” Sibiya says, looking down at his crotch, “just got worse and worse.”
A rank odour permeates his room. He lives on painkillers and food gifted by his neighbour or the hospice. “I feel really bad, especially when people say I smell.”
The neighbourhood children, unfiltered in their response to the sickly man, say it like it is: he stinks.
He knows they don’t understand, but their words crush him all the same. “I stay in my room, nobody interferes with me here. It is better to be alone than hearing people say this. It makes me feel so bad. Sometimes the aunty invites me to watch TV. She tells me not to lock myself in my room because it will make me think of bad things. I have tried to commit suicide three times. The last time I drank alcohol and then paraffin and took all my ARVs [antiretrovirals]. I wanted to die. I just wanted to get rid of this. The doctors say it is impossible to fix. It is painful and it smells disgusting. Hospice is keeping me alive.”
Highway Hospice nurse Mvuselelo Mgqadi says the misery that impoverished, terminally ill patients face is overwhelming. “They need our help and medicine, but mostly they need love and support. They need friends and family to ease the pain.”
Mgqadi, fellow nurse Charmaine Mhlanzi, Mlambo and social worker Nokobunga Ndlovu are among the team members who visit patients in far-flung areas around Durban. Their work is heartbreaking.
“There are two facets to it,” says Mhlanzi. “It is a privilege to be with families whose loved ones are dying. They need someone to talk to, to verbalise their worst fears. Doctors don’t usually have time for that. Families need to be reassured about the journey they are on. It is a privilege to be part of that.
“The other aspect is helping patients find acceptance and understanding. Empathy is everything. It is a struggle when the person dying has small children or is the same age as me. It affects us.”
Ndlovu says loving and supportive environments sometimes prolong life. “It means you will live longer and your pain might be eased by care, by people who are gentle with you and who can help you smile and sometimes laugh. But that isn’t a cure.”
She says palliative care involves dealing with pain, misery and the indignity of patients being unable to look after themselves. “I wish the government could train more caregivers and I wish health services were speedier and more responsive. Patients wait a year for cancer biopsy results or treatment. In that time their lives could have been saved, but instead they are often faced with bombastic doctors.”
Mhlanzi says government health facilities aren’t geared towards palliative care. Big institutions are under strain, and bureaucracy and schedules don’t accommodate people who are too sick to make an appointment on time. Patients are forgotten because they can’t access clinics and hospitals regularly. Their families are overwhelmed, mostly impoverished and ill-equipped to care for and medicate them. They often go hungry so that the dying family member doesn’t have to take medicine on an empty stomach.
“We deliver food parcels. They are so small, but they do make a difference,” Ndlovu says.
Reliant on donations
Linda Webb is a former banker who joined the Highway Hospice after her husband died there. Nurse Greta Schoeman started the organisation from the granny flat of her home in Westville, Durban, 38 years ago. Schoeman was married to an orthopaedic surgeon, and the couple eventually bought a property in Sherwood to house the organisation when they couldn’t cater for patients at their home any longer.
The Highway Hospice has a staff of 41, including full-time caregivers, nurses and fundraisers. The organisation leverages phenomenal support from a range of doctors and specialists who volunteer their time and expertise. It also benefits from a range of other professions, including a retired banker who fixes electrical appliances at the hospice charity shop and an energetic elderly woman who does home visits, washing hair and trimming toenails.
“Our staff go to far-flung places where you can’t drive a car and where the wound dressing is horrendous,” says chief executive Webb. “It is devastatingly sad. Some patients are so uncomfortable they can’t lie down. We rely on donations and our services and the medication we dispense is free.”
Webb says the Highway Hospice barely scrapes by on its annual budget and wouldn’t survive if it weren’t for donations.
This is a reality to which Julia Ambler readily relates. Ambler is the co-founder of Umduduzi, a non-governmental organisation (NGO) in Durban that offers palliative care to children in KwaZulu-Natal. She says the organisation is perilously close to shutting down in spite of having 400 patients at any given time.
A 2017 government paper on palliative care created great national policy, Ambler says, but has had little effect on the ground as there are few trained healthcare professionals and almost no state funding for such care. Leigh Meinert, advocacy manager of the Hospice Palliative Care Association of South Africa, says the policy is “excellent” but has yet to be implemented owing to a lack of prioritisation and no allocation of funding.
“Currently only 12% of the people who need palliative care in South Africa are able to access this,” says Meinert. “Much of this is currently provided by our 99 member hospices across the country, but they are all self-funded. Covid has hit them hard and we’ve seen many close their doors already. The pandemic has shone a light on the numerous gaps that exist and the very real financial, emotional and social toll of not having integrated palliative care in our health system. We’ve lost four years already and failed the most vulnerable among us in the most dismal way. We call on the government to accelerate the implementation of our national policy and to dedicate funding to this as a matter of urgency.”
‘Angel of mercy’
Ambler and her fellow children’s palliative care doctors (there are four in KwaZulu-Natal) approached the Human Rights Commission for help. Palliative care is recognised as a universal basic right and paediatric palliative care falls under the United Nations convention on the rights of the child.
The World Health Organisation ratified a resolution in 2014 saying that member states must provide palliative care, which resulted in South Africa’s 2017 policy. But, Ambler says, “there has been very little in the form of implementation and the Department of Health has its hands full with other issues”.
She says in an impoverished healthcare system, palliative care takes a back seat. For patients with serious illnesses or significantly reduced mobility, accessing care and medication can be impossible.
Without the NGO sector providing hospice and palliative care services, there would be no recourse for these patients.
She describes herself as an “authorised angel of mercy”, helping terminally sick children die comfortably and with dignity, while supporting their families. “We should be government-funded. We’re getting desperate, we’ve been doing this for 11 years and there’s still a gaping hole. The funding is private. We are completely reliant on the goodwill of the general public.
“People in palliative care are a tiny pool stretched to service the most desperate across the private and public health sectors.”
Ambler says a lot of money in healthcare, particularly in the private sector, is wasted because doctors feel they must try to do something even when there is no cure. Doctors often avoid difficult conversations and patients often do not understand the benefit of palliative care and therefore do not demand it.
Ambler’s patients have a 96% mortality rate and she oversees the pain management and death of about 10 children a month. Beyond medication, she says there is not enough bereavement care. Families are shell-shocked by losing a loved one, especially a child, and little support is available.
“The biggest fear that most of my little patients have is that their families will be okay when they go. Children are remarkably unafraid of dying. Some endure an utterly horrible quality of life before they die. One little boy had to take three taxis from rural Zululand to access specialist care and chemotherapy in Durban. All he wanted to do was to be normal and play with the other kids.”
Listening is the magic
Ndlovu says the psychological impact of terminal illness on families is ruinous. There are societal aspects, existential crises and issues relating to the recovery of families. “So many people still treat illness as a curse. They wonder how such a good person can get sick. They talk about God and religion and superstition. People get angry and upset over the suffering. It is such a trauma. You are dealing with physical pain and the emotional pain of loss, of shattered dreams. Medical professionals often don’t help with that. They use language that patients and their family don’t understand and that just aggravates things.
“The biggest service we can render is to listen. That’s the magic. When the patients see the hospice car arriving they say they are still hopeful. They might be dying of an incurable disease, but we remind them then and there that they are still part of this world. They often ask us to take them to a hospice or somewhere where they aren’t a burden to their poor families, who are already struggling. Some want to take their own lives to spare their family the trauma. But euthanasia isn’t legal. The work is heartbreaking.”
Ndlovu relates the story of a middle-aged mother from Durban North who recently died of cancer. She was a single parent to a 14-year-old daughter and a son of three years old. She was able to get her affairs in order and write a will and arrange for relatives to take care of her children. But she was exceptionally close to her daughter and the impact on the teen was brutal. The child was so stressed she lost control of her bladder and couldn’t go to school.
Mhlanzi says before the outbreak of the coronavirus, the Highway Hospice was able to admit patients to their in-patient unit to see out their last days comfortably, relieving the family of this burden. “We had a father working the night shift and then coming home to tend to his sick wife. When he was not there, it was up to the children, putting a big strain on the family. His wife passed away at the hospice prior to the temporary closure of the unit and the husband was so grateful the children didn’t have to watch their mother die.”
Ambler served her internship at the McCords hospital in Berea, Durban, at the height of the Aids pandemic, exposing her to many patients at death’s door, desperate for relief from their suffering. It taught her how to deal with death.
“It is sad, but death is a normal part of life and it shouldn’t be avoided,” she says. “When there is nothing more we can do to save a patient’s life, they deserve to hear the truth compassionately to allow them to make good decisions for a better death. Palliative care brings humanity back into healthcare.”