Poor patients ‘prefer to die at home’

THE CALL for the Northern Cape Department of Health to integrate community health workers (CHWs) has grown louder following numerous complaints about the state of local health facilities.

Many critically ill patients have expressed a preference for dying at home rather than seeking hospital care, which they perceive as a place of humiliating and painful death.

Gravely ill patients often refuse hospital admission, fearing the experience. Communities have shown strong support for home-based care, praising the volunteers for their compassion and humanity, in contrast to the nurses at clinics and hospitals who they often describe as “lazy” and “rude”.

Nurses and state staff face continuous accusations of laziness and taking out their frustrations on patients. However, they also highlight issues of under-staffing and poor working conditions. The state health sector is evidently struggling with a lack of or poorly resourced ambulances, under-resourced clinics and hospitals, staff shortages, mismanagement of funds, and overworked and frustrated staff.

Staff and unions have repeatedly blamed the Health Department for overburdening health workers with the responsibility of managing overcrowded institutions with limited or no resources.

HOME-BASED CARE

In the 1990s, the initiative to incorporate home-based care workers was formally launched in response to the nationwide increase in HIV and Aids cases. By providing care to patients at home, these volunteers helped alleviate the strain on the health-care system and reduce overcrowding in health institutions.

Their responsibilities included offering comprehensive support to patients to lower the death rate and curb the spread of HIV, Aids, and other diseases such as tuberculosis (TB), sexually transmitted infections (STIs) and cancer.

While professional nurses and doctors handled critical cases in clinics and hospitals, the volunteers went door-to-door within communities, delivering medication, bathing bedridden patients, and tending to their wounds until they healed. Additionally, they were expected to provide peer education on health promotion and wellness, keeping the community informed about health issues.

SURVIVING ON A STIPEND

Despite their dedication, volunteers have been surviving on a stipend without benefits such as medical aid, housing allowance, pension funds, bonuses, UIF payments, or injury-on-duty benefits. Most volunteers have a matric certificate as their highest qualification and receive training through short courses and workshops to equip them for the hazardous conditions they face.

Typically, these volunteers are absorbed by NGOs, which act as intermediaries. The NGOs receive the stipend in bulk and then distribute it among the volunteers. Additionally, NGOs compile monthly reports prepared by the volunteers and submit them to the department as proof of services rendered.

Volunteers have expressed concerns that, despite their passion for their work, they are often overlooked by the Health Department and must fight to receive their stipends.

Many volunteer due to unemployment, a situation that seems to be ignored by the overburdened state health sector. As a result, they often retire without any benefits at age 65, despite risking their lives and being counted among front-line workers.

Many CHWs have also highlighted that they get infected in the line of duty and still die without any benefits.

"We work without essential materials and protective gear and we have to strike to be heard,” a group of concerned CHWs explained.

“In 2018, the Department of Health recognised the need to secure our jobs by placing us on the Persal system as part of an internship programme, but without any benefits. Our services remain crucial as new infections are reported every year and CHWs are integral to the national health strategic plan. However, only the CHWs in the Gauteng province have been made permanent.

“We plead with the Department of Health to understand that the stipend we receive is insufficient to support our families. Many of us are between the ages of 30 and 64, and we struggle to provide proper education for our children. Our rights are being violated, especially since most community health-care workers are women. Despite our lack of qualifications, our skills and experience should be valued.

“In May, we visited the national Department of Health, as our MEC, Lebogang Lekwene, always tells us that the decision to employ us permanently is a national one. We learned that funds were allocated to each province, and they must manage these according to their budgets, as Gauteng did with their CHWs.

“Many of our CHWs are experiencing depression as their hopes for change remain unmet, while the cost of living continues to rise."

‘HOSPITAL IS A HORRIBLE PLACE TO DIE’

Annie Lewis (not her real name), a 68-year-old Kimberley resident, voluntarily discharged herself from a public hospital after what she described as the most horrific experience of her life. She felt as though she was staring death in the face from the moment she entered the hospital.

During her nearly two-week stay, Lewis, who was admitted with a lung infection and heart-related complications, described the hospital as “a place to die a horrible death”. She couldn’t tolerate the alleged ill-treatment she and other patients received from the nurses.

“I experienced overcrowding and neglect from the first day. Patients died before my eyes due to the neglect and emotional torture inflicted by the staff. I feel like the nurses have no compassion for the patients; they often shout at them and treat them inhumanely. They seem to be there just for their salaries and claim they can’t do anything if the hospital is already a mess,” Lewis stated.

After being admitted to the casualty ward, Lewis was later moved to a different ward, where she felt more tortured than cared for.

“I had a catheter inserted but constantly had to beg the staff to change or empty it, otherwise I would end up lying in a wet bed. The nurses always said they were understaffed and couldn’t reach me in time. Whenever the catheter leaked and wet my linen, I was told there was no linen available because it hadn’t been delivered from the laundry in Upington. I felt humiliated daily and had to hold the catheter up to prevent it from dripping onto the floor while waiting for the nurses to come and change it,” said Lewis.

She added that it was impossible “to get through to the staff”, who seemed uninterested and often wore earphones as they walked past the patients. “The only time they removed their earphones was when they were chatting happily with each other.”

To her, the only people who seemed to show any humanity were the kitchen staff and some of the cleaners.

She said that whenever she felt better, she would help her fellow patients eat and assist them with whatever they needed until she returned to her bed.

Lewis said she found it strange and traumatic that patients with minor conditions were placed in the same ward as those who were dying.

"A woman in our ward cried in pain from the day I was moved in, but she was shouted at to shut up and sleep. She cried for days without anyone attending to her, until she died.

“I remember a woman who was wheeled into the ward with respiratory problems. She was left on oxygen for days without being checked on. I had to tell her children to bring her food or blankets because she was being neglected. None of the nurses seemed to care about her existence.

“After three more patients’ bodies were wheeled out of the ward in one week, I felt I had experienced too much trauma. I feared I might be next because the hospital was ignoring my diabetes treatment. Luckily, I had brought my medication and told them I would take it if they couldn’t provide it. The staff was too arrogant to explain why my diabetes treatment was not on my daily prescription list."

She said that bodies were left in the ward for hours after passing. Once removed, the bed would be allocated to another patient without being properly cleaned.

“The floors were dirty and stained, there was no toilet paper in the cold and filthy toilets, and patients were expected to bathe with cold water during the winter.”

On the day she decided to discharge herself, the staff advised against it, but she insisted on going home.

“After informing them that I was leaving, I went to sit on the benches to wait for my transport. They tried to scare me with worst-case scenarios to change my mind, but I refused. I told them to bring me the voluntary discharge forms to sign, or I would leave without signing out.”

She emphasised that she would rather die a peaceful and dignified death at home than return to the hospital.

“I have been taking good care of myself since I was diagnosed with diabetes and won’t allow anyone to take me back to a state hospital again.”

‘DOING US A FAVOUR’

Another complaint involves a clinic in Galeshewe, where patients report that the institution remains under-resourced and staffed with rude personnel.

A disgruntled mother vowed never to return to the clinic after a nurse told her that they were “doing the patients a favour” by attending to them. On that day, she had taken her baby for immunisation but ended up leaving and taking the child to a private doctor due to the “inhumane treatment” she received.

“I arrived at the clinic at 7am, but none of the nurses showed up to assist us. By 8am, the clinic was already full. Knowing the procedures, we decided to gather our clinic cards and neatly pack them so that it would be easier for the nurse to select the files,” she explained.

She said a “rude” nurse then came out and told her to fetch the files since she had already started the job by gathering the clinic cards.

“I explained that we were only trying to assist by gathering the cards and that it wasn’t my job to fetch the files.”

“That’s when she told me, with an attitude, that she was doing us a favour by helping us. When I pointed out that she was getting paid to do that job, she went to fetch her superior. The head nurse explained that the nurse in question was frustrated because they hadn’t been paid.”

“I took my bag and left.”

FAMILY CRIES NEGLECT

Another family in Kimberley was left shocked after the Robert Mangaliso Sobukwe Hospital (RMSH) apparently informed them that their case was closed, denying them a fair chance to seek justice for their loved one’s death two months ago.

The patient was rushed to RMSH after a sudden illness and remained in the ICU for two weeks. His sister mentioned that he was sedated most of the time and was well cared for by the nurses and doctors, who eventually switched off the machines.

Miraculously, he woke up but was confused, leading to continuous engagements with the doctors about his recovery.

He was then moved to M1, where he initially seemed to adjust but later deteriorated again and eventually died. The family accuses the hospital of negligence, stating that the patient was left hungry and thirsty for three days without any explanation from the staff. They said the patient repeatedly asked for food and drinks during their visits.

She claimed that they had to beg the nurses to give him oxygen on several occasions, often encountering “arrogance” from the staff.

"After he woke up in ICU, the nurse told us that he needed to be seen by a dietician and a speech therapist to determine if he could eat on his own, so he remained on tube feeding until then. But after he was moved to the ward, his cup of milk sat next to his bed for three days, turning sour, while his feeding tube was removed. We kept begging the impatient nurses to feed him as he told us he was starving, but they made empty promises. He complained that he had never seen a dietician or a speech therapist.

“It was heartbreaking to watch him suffer and lose weight while also struggling for oxygen," said his sister. "We only had time to wipe his face because we didn’t want to interfere with the nurses’ jobs and provoke them into neglecting him further. They already seemed irritated by our requests and enquiries. We couldn’t even feed him for that reason.

That night when we returned, I asked if he had eaten anything, and he said no, he was hungry," she continued. She added that the nurse in charge arrogantly asked the patient if he didn’t want to eat the hospital food and threatened to add the information to his file.

She said they wanted to speak to the unit manager to raise concerns about the patient’s feeding routine but were told no one was available. The patient eventually asked them to stop raising concerns as it wasn’t helping.

“He said, ‘I’m so, so hungry,’ and my eyes filled with tears because I didn’t know what to do anymore. He also told me not to complain anymore as they do nothing. For the next two days, I didn’t say anything; I just massaged him and wiped him as he was never bathed.”

“On June 30, 2024, at around 11pm, I received a call that my brother’s condition had worsened. When we went to check on him, we met the nicest nurse. That was the first time we saw an effort being made to save my brother’s life or treat him. The nurse said they were trying to keep him stable with full nebulisations and suctioning his phlegm, and that he didn’t know the family was there as his condition deteriorated.”

“The last time we saw him alive, he was dehydrated and had lost a lot of weight. Struggling to breathe, with no oxygen on, he asked me to give him some of the Ventimax inhaler, but it didn’t help and was almost empty. The nurse told us she couldn’t put him on oxygen as they had to follow the doctor’s orders.”

“I didn’t want to leave as he was calling me back the whole time, but I left because I started crying. The next day, the nurse called to tell us that my brother had passed away.”

The complainant stated that she followed all the procedures to file a formal complaint about the alleged neglect.

“I truly believe my brother could still be alive, but he was suffering and neglected. The nurses are only doing their jobs for the salary, without any commitment or passion.”

She mentioned that it became a struggle to find the relevant person to speak to regarding their complaint, as they were constantly told the official was unavailable.

She was shocked to receive a notification that the case was closed due to them not honouring an appointment, even though they had never been called to present their case.

* Despite multiple attempts to obtain comment, the Northern Cape Department of Health did not respond to media enquiries.