HIV Australia | Vol. 12 No. 1 | March 2014
By Paul Van Reyk
PAUL VAN REYK documents the vital role played by nursing staff during the early years of Australia’s HIV epidemic.
This paper was presented to the Australian Homosexual Histories Conference, Melbourne University, 15–16 November 2013.
Introduction
This ain’t no party, this ain’t no disco, this ain’t no fooling around I’d like to kiss you, I’d love to hold you I ain’t got no time for that now.
– Life During Wartime, David Byrne.
In October 1983, Ron Penny, Associate Professor in Immunology at St Vincent’s Hospital, Darlinghurst, diagnosed the first case of AIDS in Australia.1
The man was admitted under Penny to Ward 7 South of the Cahill Building, the Immunology ward. Over the next two decades the ward, later redesignated Ward 17 South, arguably was to bear the brunt of hospital care for people with HIV/AIDS.
This paper is part of a wider project to document the history of this and other dedicated AIDS units in the Australian hospitals. The paper focuses on the nursing staff and hopefully goes a small way to redressing the lack of their voice in Australia’s AIDS history. It covers the period 1983–1993 from the first AIDS case in Australia to the beginning of trialling antiretrovirals, the period during which the nursing practice was at its most challenging by all accounts.
The ward
At the time of the first intake of people with AIDS, the ward was shared between vascular patients at the Northern end and immunology patients at the Southern end.
There were 36 beds in all; five six-bedded bays and six single rooms for patients needing intensive nursing or infections requiring isolation.
The first people with AIDS treated on the ward were allocated the single rooms. This was because there was little knowledge about the routes of transmission outside of sexual bodily fluids at the time and there were concerns about the risk of infection to the other immune-compromised patients.2
As the numbers increased, a six bed bay was added. The single rooms continued to be used for those needing the most intensive nursing, often the dying, and also for women as there was never a sufficient number of women with AIDS at any one time on the ward to be able to allocate them a six-bed bay.
Over the next ten years all the beds were allocated to people with AIDS. Increasing the bed numbers was resisted for some time by the hospital administration for two reasons. The first was the pressure put on other units in the hospital by increasing the intake of people with AIDS, including Emergency and the existing hospital hospice capacity.3
The second was discomfort among hospital administrators and some surgeons with homosexuality, in part because St Vincent’s was a very prominent Catholic institution, and in part from homophobia per se.4
This failure to open more beds despite the availability of additional funding from the State Government as the focus of ongoing community anger.5
Some pressure on beds was relieved with the establishment of AIDS units at Prince Henry Hospital, Little Bay, in 1986 and at Royal Prince Alfred Hospital, Camperdown, in 1988 and the opening of the Sacred Heart Hospice with a dedicated AIDS floor in October 1998.6
More beds were finally opened in August 1989.7 From the early to mid-1990s the ward was at full capacity of 36 beds constantly. St Vincent’s also ran an AIDS outpatient clinic beginning one morning a week (Friday), increasing to five days a week in December 1988.8
The Maitraya Day Centre was established by St Vincent’s and Darlinghurst Community Health Centre in November 1987 beginning one day a week and also increasing to five days a week in December 1988.
The nurses
I think why the ward had such a good reputation was because the nursing was so good. The nurses we attracted did it because they wanted to. There was a strong empathy between the nurses and the patients. But they were very professional also. I don’t think any boundaries were crossed.
– Professor David Cooper
Who were these nurses of whom Cooper speaks so highly?
I had seen (Ward 7 staff) in the cafeteria and I thought, these people are full of love, they’re out there, they’re queer and if they are not they are queer friendly and I was queer and coming out. I want to work with these people.
– Anne Maree Sweeney, Registered Nurse and Clinical Nurse Specialist.
Many were gay men and lesbians who wanted to ‘take care of their own’; friends, their wider social network, their community, sometimes their partners. Some of them were themselves positive.
Others were heterosexual men and women who also had friends or relatives who were people with AIDS, or who saw AIDS as a health crisis to which they wanted to contribute their nursing skills and wanted to do this alongside ‘like-minded’ people.
Not unexpectedly, the ward had a higher proportion of male nurses than other wards in the hospital, at times as high as 50%.
Most of them were of the same generation as many of those they cared for. Some had been nursing for some years in oncology, paediatrics, critical care, respiratory illnesses or psychiatry. For others it was their first nursing experience.
Bill Paterson and Roger Nolan in the treatment room at St Vincent’s. Photograph courtesy Bill Paterson.
There was a lot to learn. Many of the presenting illnesses were rarely seen and certainly not in the young population they were dealing with.
Treatments for these, and the later antiretrovirals, were experimental and knowledge of their efficacy and side-effects were only learned from observing the results of treatment.
The nurses also learned new nursing skills when other specialist staff refused to deal with people with AIDS, like having to take blood for culturing or inserting canulas because pathology staff wouldn’t.
Much of this learning was done at the bedside working with what they all describe as a genuinely collaborative multidisciplinary team, one which was not ‘doctorcratic’ and which encouraged questioning, critical incident de-briefing. This was supplemented through ward meetings and regular in-services.
Some were supported to undertake the Sydney Hospital six month Post Graduate course in HIV/AIDS established in the early 1990s.
Later, Moys Gillespie recalls, new nurses would learn about the treatments, their doses and side effects from people with AIDS themselves.
The guys taught you. They knew their meds back to front. You’d take the drug trolley around and there’d be lots and lots. But the guys would say to you I need that and that. That was my first example of patients taking control of their own health in terms of questioning. It took a little bit of getting used to but I thought it was amazing.
– Moys Gillespie, Registered Nurse and Clinical Nurse Specialist.
In sum, in the words of ex-Nurse Unit Manager (NUM) David Crawford they were all ‘very skilled, very caring, and very driven.’
But then, you had to be to survive life in the war zone.
The war zone
It was like working in Emergency every day. ‘So and so’s just stopped breathing. Grab the CPAP. Hang the bags. Put a line in. Try and get a doctor down as soon as you can.’ While that’s happening three guys in the same bay are having diarrhoea that’s non-stop or intractable vomiting. Bleeding, bubbling lungs. Everybody was on oxygen … Top to toe nursing. There was a lot of screaming. Dementia. And everybody was dying.
– Anne Maree Sweeney
Nursing was constant and physically exhausting. Everyone remembers the cryptosporidium diarrhoea, not shit so much as brown water, sometimes 10 and 12 litres of it a day from a single patient.
How thin and frail people were; young men who should have weighed 75 kilos down to 35 kilos, for whom lying in bed was agony, who needed to be turned regularly to ease the discomfort, each turn in itself causing excruciating pain.
Changing clothing and bed linen sopping from night sweats five and six times a night. The dementia and screaming from those with cryptoccal meningitis or cerebral toxoplasmosis.
On other units you might take patient observations twice a day; here you might be taken them hourly. When the hospital introduced its Patient Assessment Intervention Score system to track nursing workload, the figures for the ward were off the chart, says ex-NUM Bill Paterson.
Once diagnosed, opportunistic illnesses were aggressively treated with what was available. Some of it was experimental. Some of it was toxic. Sometimes it paid off.
In the early days, 80% of the people presented with pneumocystis carinni pneumonia which had around a 60% fatality rate. In St Vincent’s we brought that down to 20% because we diagnosed really quickly and treated really quickly. We weren’t able to get our patients in to ICU [intensive care unit] so we had to give them ICU care on the ward and didn’t have access to highly specialised ICU lifesaving equipment like ventilators. The ICU team was very supportive of our work however and provided a consultation service.
– Bill Paterson, Registered Nurse and Nursing Unit Manager.
Often the time would come for a difficult conversation amongst the treating team, the person with AIDS and their significant others whether to continue with treatment and when to move to palliation, particularly where it was experimental or the side effects were severe.
We used to say to people: “We may not get you through this but the investigations we do on you will inform how we treat those who come after”. And to their endless honour they would say yes.
But always there was death: confronting, often painful, sometimes lonely. In the early days people would come in with pneumocystis carinni pneumonia and die within a matter of hours, some in Emergency while waiting for a bed.
Later treatments often had a honeymoon period where you could stabilise someone enough to discharge them, but the illness would return or some new illness would appear. People died within two years of diagnosis.
I think we were all exposed during nursing one way or another.
– Tina Kelleher, Registered Nurse.
They were always at risk of infection themselves. Barrier nursing, wearing gowns, gloves and masks when dealing with infectious patients, had given way to universal infection control procedures which worked most of the time. But they still got infections like scabies and cryptosporidiosis.
Social worker Colin Clews and wardsman Graham, St Vincent’s Hospital Ward 17 South. Photograph courtesy Colin Clews.Two contracted tuberculosis during an outbreak of it on the ward for lack of adequate facilities in which to do induced sputum. Needle stick accidents were common but led to HIV infection in only one case.
At the same time surgeons in Australia were pushing for $5,000 spaceman like protective suits, for testing all surgery patients, and for the right to refuse to operate on anyone who was HIV-positive, a push firmly rejected by all Ministers of Health at Federal, State and Territorial level.9
But nursing was about more than physical care. Much of it was accidental counselling of people with AIDS (PWA), their partners and friends, their families.
A lot of it was advocacy for their patients: getting a reluctant Registrar to attend after hours; doing whatever the staff in the vascular nursing end of the ward insisted on as protection from imagined transmission so people with AIDS could use the only bath on the floor; ordering family and partners to take their fights over the disposal of property or the right to make treatment decisions out of the ward; evading parents’ questions that would disclose their son’s sexuality or that he had AIDS; or battling with nursing administrators to get a someone into a streamer bedecked wheelchair, iv drip and all, down to Oxford Street to view their last Mardi Gras.
Many of their parents didn’t know their son was gay let alone had HIV. I can’t think of a single time we slipped up, because we weren’t lying. You know, “Your son’s dying of pneumonia. Yeah, it’s unusual but it’s happening”.
– Tina Kelleher
Whatever it took to make the person with AIDS comfortable was done; rules were broken. A watch was kept for the nursing administrator while someone smoked in the fire stair.
Couples would lie in bed together behind closed doors or curtains with no questions asked of how far intimacy went. At least once a dog was smuggled in to comfort its dying companion human. Clean needles were discreetly passed. Condoms were palmed.
Discrimination from colleagues and surgical staff was not uncommon though often veiled. Your sexuality and motivation were fair game for gossip.
A lot of us were gay men and there was a predominant feeling from other nurses that we were there because we were HIV as well. They felt we were over involved with our patients. There was a bit of our patients got what they deserved because of their lifestyles. They said we were blurring our boundaries.
– Bill Paterson
I got asked why on earth I would want to go and work on that ward. They made the assumption that I was gay.
– Moys Gillespie
David Crawford talks about feeling like NUMs of other wards resented what they saw as too much money and resources going to people with AIDS in the hospital:
But the ward was not unremittingly grim. You could count on drag queens turning up in a flurry of feathers and sparkles to do an impromptu show. The Friends of Seventeenth South would play Santa or the bunnies and angels from Hop Yourself Stupid would turn up with Easter eggs for all.
And always there were the people with AIDS and their partners and friends being defiantly outrageous and taking the piss out of you.
So I walk in to the 1st single room on 17 South to meet Aldo, early days so he’s as skinny as, “Bill, Bill” he says to me, “feel my back!” I feel his back, all skin and bone – shoulder blades sticking out a mile. Of course the weight loss gave him a smile the size of the Sydney harbour bridge. ” Yes Aldo” I said stroking his back “I can feel your bones”. “Oh no, Bill” he says, “those are my wings growing” and my heart opened a little wider.
– Bill Paterson
You would walk into a six bedded bay and it was like a party was going on. There was a lot of laughing. A lot of noise. A lot of flirting. You had to come and show them what you were wearing to the dance parties. They used to think it was hysterical when you would come in the morning and they knew you hadn’t been to sleep.
– Tina Kelleher
Coping
Still, the emotional toll was high.
Coming to work was always confronting. There were lots of people I knew by sight, by name, knew personally. It was uncommon that there wouldn’t be each month someone coming on to the ward that I knew getting ill and dying … You had to have a distance, an emotional cut off because if you became emotionally involved with everyone you wouldn’t last.
– Robert Fieland, Registered Nurse.
In the early years, estimates Bill Paterson, the average term on the ward was three months, some leaving after finding that this nursing was not for them, most through burnout.
They dealt with it through largely through looking out for and after each other and with drinking, drugging and partying together.
We’d live at the Albury Hotel and the Green Park Hotel. And at each others houses. We’d hang out together. Do anything that would make us happy. Watch Marilyn Monroe movies together. Go to the beach. We cried on each other’s shoulders and we sat on each other’s laps.
– Anne Maree Sweeney
For some, partners provided support. For others, family was often not supportive, either because of homophobia or because they saw the person as wilfully putting themselves in unnecessary danger.
There was a staff counsellor available and later also the unit’s dedicated social workers, but they rarely accessed them. A support group started by David Crawford didn’t succeed, in part, he says, because people thought they were managing okay even when they weren’t, but also because they just didn’t want to talk about it.
For gay men and lesbians living and socialising in the communities being known as working on the ward had its good and bad sides. On the good side, people would come up to them and thank them for the care they provided their partner, or friend; they could always count of being shouted a beer.
They could be cheered as they boogied on the 17 South Mardi Gras float even if they weren’t allowed to have St Vincent’s name on it. Or they could release their inner drag queen at DCMs and do a number choreographed by Kristy McNicol and raise funds for the ward.
On the downside it could be hard to leave work behind. It could take you a long time to walk a block on Oxford Street as people would come up and ask about friends on the ward or want to talk about AIDS and treatments and prognoses.
They developed strategies for avoiding this and for not breaking the confidentiality of those they were caring for. What was harder to take was bearing the brunt of community anger at people staying 48 hours in Emergency for lack of beds on the ward.
By the mid-nineties changes to the pattern of illness and nursing supports put in place by successive NUMs to deal with the emotional and physical impact had lengthened the average stay to two years and many continued longer. Staff to patient ratios had increased as a result of determined lobbying based on rigorous completion of the Pathology Analytical Imaging Standards (PAIS) data.
Finale
In November 2007 St Vincent’s announced the AIDS unit had closed. Advances in antiretroviral and other treatments had resulted in fewer in-hospital bed days for people with AIDS.
Since the late 1990s the beds had been increasingly re-allocated for other illnesses and people with AIDS were mainstreamed into the general or other specialist wards.
I think we excelled ourselves. We used to say to nurses on other wards who used to get snippy – ‘Don’t drag us down, pull yourself up’.
– Tina Kelleher
Thanks
I thank the nurses who over the years cared so excellently for my dear friends and who unsparingly shared their stories with me for this paper: Suzi Aboud, Registered Nurse 1989–1992; David Crawford, Registered Nurse 1989–1992, Clinical Nurse Specialist 1992–1993, Nursing Unit Manager 1993–1998; Robert Fielden, Registered Nurse 1989–1993; Moys Gillespie, Registered Nurse, Clinical Specialist 1993–1998; Bill Paterson, Registered Nurse 1986-1989, Nursing Unit Manager 1989–1993; Ann- Maree Sweeney, Registered Nurse 1989–1992, Clinical Nurse Specialist 1993–1996.
I also want to thank all the contributors to the Ward 17 South Connection Facebook page whose postings I have drawn on also; Professor David Cooper who continues to be a remarkable human being; and The Sydney Star Observer for giving me open access to their archive.
Ward 17 South’s 1993 Sydney Gay and Lesbian Mardi GrasParade float. Photograph courtesy Jeanette Atkinson
References
1 Albion Street Centre. (2005). A HIV/ AIDS Time Line, 8. Retrieved from: http://thealbioncentre.org.au
2 Professor David Cooper interviewed for this paper, 2013.
3 Professor David Cooper interviewed for this paper, 2013. In March 1985, and again in October 1986, there were calls to establish a dedicated AIDS hospice. See: Editorial feature. (1985, 20 March). AIDS Hospice Call By Liberals. The Star Observer, 6(19), 5; Editorial feature. (1986, 31 October). Anderson to Announce AIDS Program. New Beds for St Vincent’s. The Star Observer, 40(1), 3. The Sacred Heart Hospice was opened in October 1988.
4 Though never openly said at the time, that homophobia was part of the reason is attested to by staff interviewed for this paper.
5 Reportage on the progress or lack thereof can be found in: Turner, R. NSW Falling Down on Funding AIDS Care. The Star Observer, 6, 3; Hospital accused of ‘appalling’ conditions. (1989, 10 February). The Star Observer, No. 98, p. 5; Patients Need Patience and St Vincent’s. (1989, 10 March). The Star Observer, 100, 1; (1989, 16 June). Hospital discharges PWA much too soon. Sydney Star Observer, 107, 1. 6 Flinders Hotel raises $5000 for Hospice. Sydney Star Observer, 86, 5.
7 New AIDS beds, but not ‘without nurses’. (1989, 17 August). Sydney Star Observer, 111, 2.
8 Day Centre goes full-time. (1988, December 23). Sydney Star Observer, 95.
9 Blood On Their Hands. Doctors Demand AIDS Tests. (1989, April 29). Sydney Star Observer, 78, 1; Block Gay Operations. (1989, 24 March). Sydney Star Observer, 101, 1; Ministers Rebuff Surgeons. (1989, 7 April). Sydney Star Observer, 102, 1.
Paul van Reyk has been an HIV/AIDS activist since 1983. He was the first full-time Policy Officer for ACON, during which time he developed a carer handbook for Community Support Network (CSN), the booklet Choosing to Die, and wrote the ACON response to the Baume inquiry into the approval of treatments in Australia. Most recently, he was worked with PLWHA organisations in Papua New Guinea.