Life during wartime – nursing on the AIDS ward, part 2

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Today’s post is the second of two [read part one here] marking the 2014 Sydney Mardi Gras.

Paul van Reyk tells the story of nurses on the frontline of the ‘AIDS crisis’ during the 1980s in Ward 17 South at St Vincent’s Hospital, Darlinghurst. It tells of the intensity, camaraderie and rollercoaster of nursing young people with the new and unknown  – and lethal – condition that was AIDS in the 1980s.

The story continues…

The 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 taking 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.

Panels from the Australian AIDS Quilt.

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 percent of the people presented with pneumocystis carinni pneumonia, which had around a 60 percent fatality rate. In Saint Vincent’s we brought that down to 20 percent because we diagnosed really quickly and treated really quickly. We weren’t able to get our patients into ICU 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

Bill Paterson RN and NUM (right) with nurse Roger Nolan in the treatment room of Ward 17S.

Often the time would come for a difficult conversation amongst the treating team, the person with AIDS and their significant others about 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. Bill Paterson

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 RN

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. Two contracted tuberculosis during an outbreak of it on the ward for lack of adequate facilities in which to do induced sputum. Needlestick accidents were common but led to HIV infection in only one case. At the same time, surgeons in Australia were pushing for $5000 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.

But nursing was about more than physical care. Much of it was accidental counselling of the 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; battling with nursing administrators to get 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.

Social worker Colin Clews with wardsman Graham on Ward 17S, late 1980s. Thanks to Colin Clews for this photo.

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 an 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 Seventeen South would play Santa or the bunnies and angels from Hop Yourself Stupid would turn up with Easter eggs for all.

Hop Yourself Stupid poster; from the HYStory site

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 first 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 RN and NUM

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 that I knew coming on to the ward, 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 staff 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 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 other’s 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 who lived and socialised 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 on 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-’90s, 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 staff 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 PAIS data.

ACON in the 2013 Mardi Gras.

Finale

In November 2007 St Vincent’s announced the AIDS unit had closed. Advances in anti-retroviral 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; Professor David Cooper, who continues to be a remarkable human being; and The Sydney Star Observerfor giving me open access to their archive.

This paper was presented to the Australian Homosexual Histories Conference at Melbourne University in November 2013.

Paul van Reyk.

Paul van Reyk has been an HIV/AIDS activist since 1983. He was the first fulltime Policy Officer for ACON, during which time he developed a carer handbook  for Community Support Network, 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.

Thanks to Paul for sharing his article with Nurse Uncut. Thanks also to Bill Paterson and Colin Clews for sharing their photos and to the Lost Gay Sydney group on Facebook for information and support.

6 COMMENTS

  1. I’m enjoying reading this series. When this was all happening, I was in WA and I recall a number of my colleagues refusing to care for anyone that was either HIV positive or had AIDS. I looked after one chap who must have been one of the first diagnosed in the state, as he was about 6 years post-diagnosis when I met him. Tremendously nice and motivated fellow who had borne the brunt of some shocking and often relentless prejudice from the community and, disappointingly, staff at the hospital. He died not long after I met him and I recall the doctors arranging for him to be sealed in a heavy plastic, military-style body bag whilst his body was still in his hospital bed and writing on the plastic “Not to be opened”. His family, friends and partner never got to see him again. The public health department recommended cremation.

  2. Fond memories. I worked in community health during this time and met some amazing people. Every death I witnessed, a bit of me seemed to die as well. Blurred boundaries – sure, you became incredibly close to everyone you nursed and talked to. It was very difficult and I would do it all again. I feel privileged to have been a part of it. And I often miss that kind of commitment, care and passion in other areas of nursing.

  3. Hi all, I was a burnt-out nurse by the time I left 17south. I remember going to the vigil in Hyde Park, walking in silence down Oxford Street, guided by the sad but steady little brown paper bags of light along the side of the road, leading us together to our shared gathering. I remember different people coming on stage to read 10 names of the beloved dead and I remember knowing at least 7 out of every ten names. I remember going to a psychologist and being told I had “existential depression” and feeling like I had done this to myself, by not being vigilant enough to avoid it. I remember feeling overwhelmed because in my perception at that time, I could never do enough. The vast amount of drugs I breathed in while crushing them with a mortar and pestle to push down someone’s nasogastric tube, knowing the life I was preserving was marred by side effects of those drugs, and not only the deaths that were distressing, often the quality of the lives of the great people that had few alternatives and nowhere else to go for treatment. I had an art career going at the same time, exhibiting and selling my paintings, and I thought that would keep me safe, but the scale of what we were involved in on that ward at that time was bigger indeed than Ben Hur. More intense than Picasso!
    It was nearly 3 years before I left. I had 6 months off work and moved to Queensland, which turned out well for me. I now understand the party-hard attitude of some of my fellow nurses; as I was physically unwell for my time on 17south, it wasn’t much of an option for me.
    So in writing this down, I don’t want anyone to think it was all sadness and sorrow there. We had some of the best times it’s possible to have and I value my time there so much. Just a bit weird to have all these memories come up so long after the event. I wish you well and honour you, ALL those involved with 17south, big love, Maggi

  4. Thank you for sharing. Your article resonates with me – I was an RN at Royal North Shore Hospital on the AIDS ward during the early ’90s. I have many fond memories of those we lost and those I worked with. AIDS was and is a highly specialised therapeutic area and I feel privileged to have worked in it, particularly at that time.

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