HIV - how do we cope?
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The following text can be found online elsewhere and was originally published in the AIDS bulletin by Chris Bateman. If you scroll through to the final third and read about Hlabisa, you know where I am.
Thank you for your attention......
AIDS BULLETIN - JULY 2001 VOL. 10, NO. 2
Can KwaZulu-Natal hospitals cope with the HIV/AIDS human tide?
South African Medical Journal
Published in the South African Medical Journal May 2001; 91 (5): 364 - 368.
Reprinted with permission and thanks.
The AIDS pandemic in KwaZulu/Natal is overwhelming public hospital capacities with medical patients spilling into surgical, gynaecological and orthopaedic wards, often forcing doctors to choose who lives and who dies.
A young patient at King Edward VIII Hospital
(Photo: Chris Bateman, SAMJ)
Doctors in at least two major hospitals, Edendale in Pietermaritzburg and King Edward in Durban, say that 55%-65 % of medical in-patients are HIV positive, the vast majority severely immunocompromised.
Public sector doctors are carrying harsh workloads, most have suffered the trauma of needlestick injuries, complain of a lack of case variety and several express hopelessness, saying they are "being reduced to terminal care workers".
Medical beds at Northdale and Edendale Hospitals in Pietermaritzburg and in several rural hospitals are running at 120% over capacity because of AIDS.
This emerged last month during an SAMJ tour of the province to assess the impact of the AIDS epidemic on health care delivery.
Greys and Edendale Hospital HIV/AIDS clinic chief, Dr Paul Kocheleff, says the tide of sick people now presenting at KwaZulu-Natal hospitals represents the 1994/5 HIV-positive prevalence figure of just 15%-20%. (Based on the estimated six-year silent incubation period of HIV).
Ms Ntombinkulu Mkhize and her 18-year-old daughter, Vukepi of KwaMgayi township in KwaZulu-Natal. (Photo: Chris Bateman, SAMJ)
Last year an estimated 36% of KwaZulu-Natalians were HIV positive, according to Professor Alan Smith, Head of the Nelson Mandela School of Medicine's Virology Department.
Smith adds, "You don't need much imagination to picture the hospitals in another six or seven years time, the exponential increase will be huge'.
A decade ago the HIV prevalence figure stood a 1,6%.
Kocheleff estimates that AIDS will kill 400 000 KwaZulu-Natalians before 2006. The latest urban HIV-prevalence studies indicate that the upward trend continues unabated.
King Edward VIII Hospital
Smith's study of King Edward Hospital admissions shows that from 1995 to 1997 the HIV-positive percentage jumped from 19% to 34%. From 1997 to 1998, HIV-positive patients admitted to medical wards alone at King Edward jumped from 39% to 53%. Last year 86,2% of all HIV-positive patients admitted were women in their 20s.
From King Edward's Medical Superintendent, Dr Sibusiso Mhlambi, to registrars and interns, all agree; the figure of HIV-positive patients in medical wards now stands at a conservative 55% to 65%.
King Edward medical registrar, Dr Bhavanesh Makanjee claims, based on clinical observation, on at least six days of any given month 100% of all patients coming into his medical emergency ward are HIV positive.
Over 90% of his patients have TB, which has become virtually AIDS-defining, be it in the chest, brain or abdomen and they often present with chronic diarrhoea, fungal meningitis, toxoplasmosis or Kaposi sarcoma.
Caring for the sick and dying in KwaZulu-Natal.
(Photo: Chris Bateman, SAMJ)
Although it is a tertiary hospital, King Edward has traditionally opened its doors to all and doctors see few referred patients. They cannot afford to keep patients in hospital long or the system clogs up further, so the level of care for in-patients remains on a downward spiral.
The SAMJ probe came across some dramatic illustrations of withdrawn intervention and hard choices faced by health care workers.
In the case of Dr Jim Muller, the Acting Head of Medicine for Edendale, Grey's and Northdale Hospitals, 120% bed occupancies and constant frustration at the lack of capacity elicits a blunt frankness.
He says outright, "People are dying prematurely because we are so stretched. Medical patients who don't have HIV/AIDS are being severely compromised because we have to discharge them prematurely - everybody is being compromised - the system just can't cope".
His latest available figures for Edendale (first week in February) show 220 full medical beds plus 48 medical patients farmed out to other wards, including 15 in the male surgical ward, 18 in the Gynaecological ward and three in Female Orthopaedic.
One medical doctor has now been assigned to care for these 'outlying' patients, previously seen every other day, with no appropriate drugs in the ward and facing overworked and resentful nursing staff.
"My colleagues are becoming increasingly upset and I don't blame them. Northdale Hospital (in Pietermaritzburg) has exactly the same patient profile and problem," Muller adds.
His surgical colleagues like to keep at least 15% of their beds free to deal with the all-too-common bus or taxi crashes.
Edendale Medical Superintendent Dr Donald Mabaso and Internal Medicine colleagues Dr Maw Oo and Jim Muller are setting up an ad-hoc committee to see if they reach a better working arrangement with their colleagues.
Says Oo, "It waxes and wanes, it's out of our control and hectic to manage. Most of our HIV patients are female and then we have the abortion season in February and March and the delivery season in September and October". Adds Muller, "Basically we're running to keep up and falling behind".
In June last year, an Edendale Hospital survey, based on clinical observation, came up with 50% of patients HIV positive. Muller believes it now matches the King Edward figures.
How does his 'pirating' of ward beds affect the other disciplines?
Elective surgical procedures fall by the wayside, let alone elective investigations, patients get inappropriately skilled nursing staff, coughing TB patients end up in surgical wards - the list is alarming.
The patient pressure in outpatients and admitting is so severe that doctors staff the adjoining emergency unit only and leave it to the nursing staff to deal with the human tide.
Asked what he does when circumstances dictate that he choose who lives and who dies, Muller responds, "We assess each individual case on its merits. If we're going to pull the plug on a particular patient we try and make it a consensus decision".
He adds, "that's the theory, a lot of patients slip through the cracks and they're dead when you do the ward round the next morning".
Makanjee of King Edward calls it "an ethical nightmare - you're at the front line making decisions based on what you find. If something goes wrong they ask you why you didn't do this or that".
Intern curator and consultant paediatrician at Grey's Hospital, Dr Kimesh Naidoo, says that at regional hospitals community service doctors are making life or death decisions simply because of the lack of consultants.
"They have to decide how far they must go, when to drop IV or antibiotics, should they ventilate this child? If the kids are HIV positive we don't ventilate and the kids die - that's become general practice".
Naidoo said that not ventilating was based on objective studies which showed that these children died anyway.
"Generally it can be the difference between dying by the next morning or within three or more days - or even surviving an episode of pneumonia and dying a few months later," he adds.
Figures for 1999 from Paediatric chief for Greys, Edendale and Northdale, Dr Neil McKerrow, show that 60% of all paediatric respiratory admissions were HIV positive.
Most HIV-positive children were either getting very sick or dying before turning two years old.
Nearly all doctors spoken to complained of a lack of clear provincial and national protocols to guide them through the new ethical minefield.
Dr Sibusiso Mhlambi; King Edward Superintendent, says that as a manager he's asked the clinicians what the protocols are.
"Right now there don't appear to be any, even for registrars in training".
He gives the example of ordering costly CT scans for cryptococcal meningitis, adding; "Policy is that we treat all the patients the same - perhaps registrars are telling me what's politically correct and doing something else".
He concedes that "It's morally and ethically very difficult, especially with the cost-benefit ratio".
Whereas in the past King Edward would run out of beds like Edendale does, it has recently divested a large chunk of beds to Mahatma Ghandi Hospital in Phoenix and diverted referrals from KwaMashu and Inanda to Phoenix.
HIV clinician Kocheleff, who has worked with the AIDS epidemic in Africa since 1984, believes the two HIV clinics at Greys and Edendale are the only ones of their kind in the province.
He is passionate about changing attitudes among patients and doctors from hopelessness and fatalism to a benefit-driven approach prolonging life and its quality.
"If we can draw a distinction between those near death and those for whom quality of life and life expectancy can be improved we can make headway with a more holistic approach," he says.
"Treating opportunistic infections with no follow up wastes money and effort - you may as well not do it," he says.
Discharging someone after top-line treatment for toxoplasmosis without relapse-related propholaxis was a classic example of how to waste money and effort on someone who would inevitably die sooner than later.
He says that internationally the mortality relapse rate for such patients (who undergo costly CT scans, X-rays and blood investigations) was around 15%.
At Greys and Edendale last year it was 43%.
"It's not because people are very immunocompromised - it's because the caregivers are too focused on toxoplasmosis when patients can have two to four co-infections".
His two clinics aim to provide rapid diagnosis, proper treatment, prevention of opportunistic infections and psychological support. However, they are sabotaged by the social stigma of the disease and grinding poverty which hampers drug compliance (transport costs).
"If we worked 24 hours we'd still make no impact because it's nothing compared to the need," he said.
Crucial to creating hope was expanding rural clinics and home-based care properly linked to his type of specialist HIV clinics. At present, his clinics fulfil tertiary, provincial, district and primary health care functions, forcing his tiny staff into spending too much time on patients who do not necessarily require their skills. More rural HIV/AIDS clinics would help "catch people before they become too immunocompromised and crucially persuade them to come for voluntary counselling and testing," he says.
"The government needs to allocate money to home-based care and provide many more nurses and doctors in the rural areas to take pressure off inpatients at hospitals and create longer, more economically active lives. Unless this happens we're staring at a catastrophe," he says.
Hlabisa District Hospital
Dr Sean Drysdale, principal medical officer at Hlabisa District Hospital near Mtubatuba estimates that, on clinical observation alone, 75%-80% of his 165 medical patients are HIV positive with half of these with full-blown AIDS. For three years now his medical wards have run at 140% occupancy. The shortage of beds (there are just 95 medical beds) means that during inclement weather and overnight, each bed has one or two patients in it and sometimes another on the floor underneath. Fine weather sees ambulatory patients shuffling out to sit on verandas or under trees.
Drysdale says most of his HIV/AIDS patients are women aged 24 to 35 years old.
Smith put this down to teenage girls choosing the older, more experienced and financially secure men who were more likely to be infected, adding, "that's the Machiavellian nature of this disease".
The smaller Hlabisa male ward gets particularly overcrowded.
Says Drysdale, "I had three gasping male patients on their last legs brought in by relatives one recent weekend. The MO examined and took histories. The relatives took one look at the male ward and decided to go home. The one that was admitted died within the hour and I suspect the others died on the way home".
Hlabisa runs 14 outlying clinics and three mobile clinic teams, serving a 5000 km square area around St Lucia, inconveniently divided in two by the Hluhluwe/Umfolozi Game Reserve.
Unemployment runs at 50%.
Bacillary dysentery, TB, malaria and cholera are endemic, the last two pushing overall bed occupancies up to 200% during outbreaks over the last two years.
Drysdale says his biggest concern is that "Nobody seems to be planning for the AIDS epidemic which hasn't hit us yet. In five years time this place will collapse - it's crumbling as we speak. It's a catastrophe waiting to happen".
He believes at least 20 000 people in the hospital district are HIV positive while Outpatients attendance stands at 30 000 people annually. Over the last three years 13 Hlabisa staff members have died, half of them HIV-related, and they're not being replaced.
Drysdale says TB resources haven't improved for 10 years, let alone HIV/AIDS assistance.
Shortage of staff means the hospital is constantly overwhelmed.
"One of the nursing sisters came to us in tears the other day, saying she couldn't go on like this. A patient had knocked on her door saying the guy under his bed had stopped moving. He was dead," Drysdale relates.
Like urban hospitals, Hlabisa's non-HIV patients suffer the knock-on effect. Blood pressure readings and medications are missed (or are wrongly dispensed by inexperienced nurse-aides).
Drysdale says many diabetics and hypertensives, disenchanted with the levels of care, no longer bother to come in. However, like Kocheleff, he is passionate about awareness-raising and early intervention in the community. When the SAMJ visited, he was excited about having just persuaded the four local Amakhosi (tribal chiefs) to back an AIDS awareness and community health programme.
"You don't move without their permission here. Now we can begin building AIDS-competent communities, make counselling and testing more easily available, and tackle mother-to-child transmission."
With government help slow or absent, Drysdale's focus has turned to setting up a 'community NGO' and exploring empowerment ideas such as 'patient' vouchers held by outpatients who surrender them only when visited by a community health care volunteer.
As for non-existent ART, Drysdale has this satirical response; "If they gave us ART free of charge tomorrow all we could hope to do is put it in a bucket with instructions on the outside and say help yourselves, but don't come back to us if you get sick!".
More soberly he explains that even with a non-ideal, three-monthly review of ART outpatients, OPD attendance would increase to an impossible 120 000 patients per year.
In an urban setting, Muller believes that with ART he could reduce pressure on bed occupancy at Edendale Hospital by 20% within a year. He's aware of the practical constraints of ART.
"When we get them it will be a very steep learning curve and a lot of people will make mistakes and a lot of people will suffer as a consequence - but it will be better than what we have now," he concludes.
MEC for Health in KwaZulu-Natal, Dr Zweli Mkhize has thrown a temporary lifeline by unfreezing 1200 nursing posts.
Mkhize told the SAMJ he intended increasing his department's health care staff from 49 000 to 55 000 within three years while starting an ambitious programme for community caregivers in a bid to reduce the debilitating pressure on hospitals and clinics.
"There are negotiations at national level between the departments of health and welfare about providing care givers to look after orphans, prevention, promotion and the co-ordination of funds," he said.
He conceded that the staffing and training situation in regional hospitals was dismal and promised to "put more consultants out into the field".
KwaZulu-Natal's Director General of Health, Professor Ronnie Green-Thompson told the SAMJ that purveying "an attitude of doom and gloom and scare tactics won't help the guys on the ground - although if I was dealing with patients every day I'd be seeing it the same way".
He appealed to senior doctors to conduct clinical audits of patients and identify what caused 'inappropriate attendances' at their hospitals so the referral system could be adjusted where necessary.
Inpatients needed "monitoring to obviate inappropriate prolonged hospital care".
His AIDS/HIV budget was increased by R5 million to R40 million this year.
Green Thompson says a shift to home-based and community care is 'essential'.
"That's where the onslaught needs to be," he adds.
He believes human behavioural change is "not the exquisite and exclusive responsibility of the Department of Health- it belongs to all levels of government and the private sector".
As things stand the current outlook is anything but exquisite.
"People are dying prematurely because we are so stretched. Medical patients who don't have HIV/AIDS are being severely compromised because we have to discharge them prematurely - everybody is being compromised - the system just can't cope".
"Basically we're running to keep up and falling behind".
"If we worked 24 hours we'd still make no impact because it's nothing compared to the need."
"One of the nursing sisters came to us in tears the other day, saying she couldn't go on like this. A patient had knocked on her door saying the guy under his bed had stopped moving. He was dead."
"If they gave us ART free of charge tomorrow all we could hope to do is put it in a bucket with instructions on the outside and say help yourselves, but don't come back to us if you get sick!"
© Medical Research Council of South Africa, 2001 -
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