These were mutually beneficial sessions – the hospital doctors gained from having someone trained in sexual health working with them, and I gained by keeping up to date on the diagnosis and management of opportunistic infections (OIs). Hospital doctors realised that a disease so complex in its modes of transmission, in its wide variety of symptoms and signs, and in the behavioural characteristics of those at risk, required a multi-skilled team to deal with it effectively. They were willing, even eager, therefore, to enlist community-based doctors as part of the hospital team.
The Worried Well
The famous ‘Grim Reaper’ campaign was a controversial public health television advertisement about AIDS, produced by NACAIDS, and funded by the Commonwealth government. The advertisement was dramatic, showing a ten-pin bowling alley with the shrouded figure of the Reaper indiscriminately knocking over figures of men, women and children, to the accompaniment of an unearthly, tolling soundtrack. The sixty-second advertisement was released on television in early April 1987 and ran for no more than three weeks at the cost of three million dollars. In the weeks that followed, the number of people throughout Australia attending HIV and STI clinics asking for HIV testing dramatically increased. The vast majority of them had little or no risk of being infected with HIV. Among these were a curious group of people we called the worried well. The term described those who had little risk of being infected, but who were irrationally sure that they had acquired HIV. Many of my colleagues resented having to ‘waste time’ counselling the worried well. There was some justification for their resentment, because time spent with the worried well was time that could be better spent with patients who really did have a risk, like men who had sex with men, intravenous drug users, men and women with multiple partners, people from high-risk countries for HIV, or people who had had sexual partners from such countries. Such high risk patients all required sensitive and detailed counselling about HIV testing.
I used to wonder why the people with no risks, but a fixed certainty that they did have HIV or AIDS, were putting themselves through such heart-searching. I particularly remember one man, who although he was an extreme case, exemplified such patients at the time.
Ben
Ben was married, and a long-distance lorry driver. He was a burly, manly sort of chap, but had a hang-dog expression as if life had cheated him somehow. Three months before, he had stopped at a rest spot one evening, where a young woman began talking with him, then offered him a cigarette.
‘She was obviously ‘on the game’, Doc,’ he said.
When he nodded that he would like one, she lit a cigarette, took a puff then passed it on. Ben placed it between his lips and took a deep draw. As he did so, he felt a peculiar ‘buzzing sensation’ on his lips. He hurriedly threw the cigarette away, stamped it out and refused to talk to her anymore. He claimed, ‘I knew straightaway, Doc. That was when I caught the AIDS virus.’
We sexual health physicians are a suspicious lot. When I heard Ben’s story for the first time in my clinic at Carlton, I thought, ‘Oh, come on Ben. This is a fairy story! You must have had unprotected sex with this woman. Why not just tell the truth?’
I didn’t voice my thoughts, but instead said, ‘Ben, if what you are telling me is true, then you haven’t run any risk of catching HIV. We know even deep kissing can’t transfer the virus from one person to another, so sharing a cigarette for a couple of seconds is not going to do so.’
Despite my explanation, Ben remained convinced he had acquired HIV. I took some blood from him and sent it off for the HIV antibody test. Two weeks later, the result was negative. I broke the news to Ben, but he remained resolutely unpersuaded. He was sure the laboratory had made a mistake and demanded I repeat the test. I refused and sent him on his way.
Over the next couple of months, Ben showed up successively at the outpatient clinic at Fairfield and the outpatient clinic at RMH with the same story. I was on duty on these occasions, so the poor fellow had the embarrassment of seeing me again each time. I agreed, with some reluctance, to repeat the blood test at both hospitals. The results remained negative and Ben remained stubbornly and unshakeably certain he had acquired HIV. He produced numerous vague symptoms to prove he was developing AIDS.
After the third negative test, I explained to him, as patiently as I could, that he was suffering, not from HIV, but from an obsessional disorder. He refused to accept my explanation and adamantly refused to see a psychologist or psychiatrist. I said, ‘In that case, Ben, I’m sorry there’s nothing more I can do for you.’
Very reluctantly, he departed. Imagine how my heart sank when I saw his name on the list for the evening clinic two weeks later!
This time he attended with his wife, a sensible, no-nonsense woman. Once I had ushered them both into the consulting room, his wife took the floor.
‘Doctor,’ she began, ‘I must apologise. My husband is a mad man! I just discovered that he has been to twelve different doctors around Melbourne in the past three months as well as you, and has had fifteen HIV tests. He tells me they are all negative, but he’s still convinced he has AIDS. I don’t know what to do for him. It’s ruining our marriage.’
‘There’s no need to apologise, Mrs O’Keefe. I don’t think Ben is a mad man, but he does need psychological help, as I tried to explain to him last time. Maybe, together, we can persuade him.’
‘That’s why I’ve come, doctor, to try and convince my husband with your help.’
It took another twenty minutes before Ben at last accepted a referral to the psychologist who was working sessions at Fairfield.
One of the little-known downsides of the Grim Reaper Campaign was to bring so many ‘worried well’ patients out of the woodwork. Ben’s good fortune was to have a sensible partner. Many of the obsessional ‘worried well’ patients had no support. Most would never accept that their symptoms and continuing desire for HIV testing were psychological in origin.
Some of the patients attending the hospital outpatient clinics had no GP, and when they discovered I was working in general practice, they gradually found their way to my surgery. I was glad to build up my patient base, but it proved a mixed blessing. An increasing number of my surgery patients were not local to Carlton and surrounding suburbs. In fact, they came from all over Melbourne, and as they became sicker and required home visits, I had to drive farther afield to provide them service. Some patients were referred to me because they were without a GP on discharge from hospital with a terminal AIDS condition, and my first meeting with them was at the bedside in their own homes.
My fears for the future, which I had felt after my consultation with my first AIDS patient, James, at the MCDC back in 1985, were all realised. That consultation was to be the first of many. I had to break the news of either an HIV positive test result, of an AIDS-related condition, or of a firm AIDS diagnosis to many people over the years that followed. It never got any easier.
Many men were already personal acquaintances when I first met them as patients, and many became my friends over the course of their illness; some were colleagues (I personally cared for four or five doctors), and a handful were already good friends when their illness declared itself. They were from all walks of life – a ballet dancer, a theatre director, a judge, a solicitor, some actors, a historian, a novelist – and some were famous. They were all ages, although in the early years most were young, my own age or younger. At first, they were all men who had sex with men, but in the late eighties I began increasingly to see women and heterosexual men. I looked after many patients from diagnosis to death. In the years between 1984 and 2013, caring for people living (and dying) with HIV wasn’t the only medical work I engaged in – I always kept up my interest in other STIs, especially syphilis – but HIV was the major part of my practice.
One of the earliest patients I diagnosed with AIDS at my new practice in Carlton turned out to be another good friend.
Graham
Graham was self-contained and a little withdrawn – unusua
l for one so young. He went through life with a mop of fair hair, curly and unmanageable, falling over his forehead. We met through an old friend of Michael’s soon after we settled in Melbourne in 1980. Michael’s friend was living in Berwick at the time and we were invited to visit, and Graham was another of the guests that weekend. He was only just twenty, from a well-to-do family in one of those towns on the Hume Highway north of Melbourne. His father was a doctor and an elder in the Presbyterian Church. Graham had been educated at Scotch College and he had that ‘posh’ accent that Melbourne’s elite private school boys often possess. His main pas-sions were classical music and cooking. He was working at Thomas Music in McKillop Street, a record shop which specialised in classical recordings. He loved his work, but complained that the pay wasn’t good. Over the course of the weekend, we mentioned that we were thinking of employing someone to do the housework once a week in the Victorian terrace house we had recently purchased in Muir Street, Richmond. Graham’s eyes lit up!
‘I’d love to do it,’ he said. ‘I need a bit of extra pocket money. I have Thursday afternoon off every week, so I’d make sure it was done properly.’
We took him on at once. Graham proved a conscientious house cleaner and kept the house spick and span. He had his eccentricities, though. Michael came home early one Thursday afternoon when Graham was cleaning. A classical record was playing at top volume on our record player and Graham emerged from the bathroom without a stitch of clothing. He was quite unabashed. ‘Oh don’t mind me,’ he said, ‘I always do house cleaning in the nude at my place, and I guess I’ve just got into the habit.’
In 1981 my first book was published: a slim little paperback with a purple cover called VD in Australia. We decided to hold a book launch at home for friends, the publishing editors from Melbourne University Press, the lady who had done the illustrations, and some medical colleagues. Graham was excited when he heard the news. He promised to help Michael with finger food for the evening and announced, ‘I’ll do my specialty. I’ll bring along my famous drop scones.’
Felicity, one of our friends, a middle aged woman, was totally fascinated by Graham’s drop scones. She could not believe how perfectly round and regular they were. When she asked Graham for the secret, he fixed her with a withering look and muttered, ‘Well, I drop the mixture all from the same spoon, don’t I.’
Graham remained our cleaner for a number of years until he no longer needed the extra pocket money. We still remained in fairly regular contact. While I worked at the MCDC, I often dropped in to the record shop at lunchtime to buy a new CD, or to purchase birthday and Christmas presents. Graham was always happy to pause for a talk and to play me the latest CD that had attracted his enthusiasm. But, after I left the MCDC at the end of 1986 and went to work in private practice in Carlton, I no longer had opportunity for our lunchtime meetings. Work became busy. Michael and I did not entertain as much as we had previously. We lost regular contact with Graham.
One afternoon, towards the end of 1987, Graham came to see me at the surgery in Carlton. I almost didn’t recognise him. He was always a well-covered boy, not exactly plump, but bordering on the chubby side. Now, he had lost a great deal of weight, and he looked forty, rather than twenty-seven. He had been unwell for several weeks with poor appetite and bouts of nausea, and then had developed a troublesome cough. Furthermore, he had been getting short of breath when he exerted himself and worried that he might be developing asthma.
At my request, he climbed onto the examination couch and lay back with his eyes closed. I examined him carefully. It was apparent Graham was seriously ill because his temperature was high, his pulse was rapid, his respiratory rate was increased, and he had an unhealthy pallor; he clearly had pneumonia. But then there were those tell-tale signs of immune-deficiency – a dry, itchy skin and oral thrush.
‘I’m afraid you have pneumonia, Graham, and it’s quite serious. I want you to stay right there. Don’t exert yourself. I’m going to call an ambulance and get you out to Fairfield Hospital. You need oxygen and treatment for the pneumonia as soon as possible.’
His eyes opened in alarm. He struggled to sit up. ‘You’re sending me to Fairfield, David? Why? What do you think I’ve really got?’
I was pretty sure from Graham’s attitude that he knew already what my answer would be, and feared the real diagnosis. ‘I’m afraid you might have PCP, Graham. That’s the pneumonia which is particularly associated with HIV infection. I wish you had come to see me before it got this bad. You must have been feeling very sick the last week or two.’
His eyes filled with tears, his usual self-containment deserting him momentarily. ‘I know I’ve been silly, but to tell the truth, I’ve been scared, and I suppose not thinking straight. I didn’t know what to do.’
I rang Fairfield and called an ambulance while Graham composed himself. He asked me, ‘Before the ambulance comes, will you ring my dad and let him know about me and what the diagnosis is likely to be? I haven’t had much contact with my parents since I’ve been in Melbourne. They don’t approve of my lifestyle, but I know they’re good people. Dad’s a doctor and will understand, but I just can’t face telling them myself. I would so appreciate it if you would do it for me.’
I promised I would do as he asked. As soon as my last patient for the evening left, I rang the country number Graham had given me and caught his father in the same situation I was in – just closing his surgery for the evening. I thought I ought to be up-front about my relationship with Graham, so I introduced myself as a gay doctor in Melbourne and that I had been a friend of Graham’s since 1980. I explained that for the first time that afternoon, Graham had consulted me as a patient and had come to see me in my surgery. Then I broke the bad news as gently as I could, but did nothing to hide the concern I felt about the severity of Graham’s pneumonia.
In a broad, no-nonsense Scottish accent, his father replied, ‘I’m obliged to you for ringing, Doctor. We’ve been half expecting, and fearing, this moment for a while. Graham’s cut himself off from us recently, as he may have told you, but he’s our son and we love him as much as all our other children. We’ll come down to see him in hospital right away.’
As I put the phone down I felt terribly sorry and sad; sorry for Graham that he had AIDS and had allowed himself to get so ill, sad for his parents and their suffering, and sorry that as friend and doctor, I had apparently not been there over recent months when he really needed me.
Graham recovered very slowly from his PCP pneumonia. The first day or so it was touch and go whether he would pull through. He had a T cell count below 50, so had almost no immune function left. Eventually, he rallied and, after four weeks in Fairfield, was well enough to be discharged. He wanted to maintain his independence, so refused to let his parents take him back to the family home, choosing instead to return to his own rented flat off Chapel Street in South Yarra.
Graham’s good health never returned. The new anti-HIV drug AZT had little effect on his very depressed T cell count. I did home visits regularly and for a few months he seemed happy enough listening to his favourite records and CDs in his bright sunny apartment. He remained thin and weak and his mother used to come and stay with him for a few days each week to ensure he ate nourishing meals. At first he resisted this, but soon I think he was glad for her company.
The next step in his decline in health was when he began to notice difficulties with vision. An ophthalmologist diagnosed cytomegalovirus (CMV) retinitis, a sight-threatening opportunistic infection occurring only in the most extremely immune-suppressed patients. Graham was admitted again to Fairfield Hospital for a three-week intensive course of intravenous DHPG (ganciclovir) therapy (an antiviral drug with activity against CMV). His visual acuity improved somewhat, but when he came home he told me he had lost the will to fight on much longer. He’d had a long discussion with his parents in the ward at Fairfield and he now wanted to cease all medical interventions; he said he had secured their support for this decision. I tried to
argue against it, but my heart was not really in it. He was now painfully thin, a shadow of the Graham we had met eight years before; he could only read with the aid of a powerful magnifying glass and he suffered increasingly debilitating bouts of diarrhoea. Together we decided, with his father’s input, to devise a regimen which would keep him as comfortable as possible, while controlling the diarrhoea. I continued my regular home visiting.
One evening during dinner I received a call from Graham’s mother. She said he had been sleeping deeply most of the afternoon and now seemed to have gone into a coma. Neither she nor Graham’s father could rouse him. She was sure the end was near. I asked if they would like me to come.
‘Yes, come when you can, but don’t rush. I am sure there is nothing you can do now and he’s really quite peaceful.’
When I got there an hour or so later, I found Graham’s parents in the tiny sitting-room with a bottle of rare single-malt Scotch, and three glasses in front of them. They told me Graham had passed away half an hour before, and they were awaiting my arrival to open the bottle. I said I would be glad to join them. Graham’s father poured the whisky for each of us, then his mother proposed a toast. ‘To Graham,’ she said, ‘in recognition of his brave soul!’
Fairfield Support for Doctors
The coming of HIV/AIDS was medically confronting. All concerned medicos were on a steep learning curve. In Melbourne, doctors at the forefront of the epidemic worked well together from the start of the epidemic. We learned about HIV/AIDS and its management as we went along, teaching each other the knowledge and skills we each were lacking. Dr Ron Lucas, Chief of Medicine at Fairfield Hospital, started a late afternoon meeting at the hospital every two or three months. Any interested doctors or nurses could attend. At first, we discussed cases in a clinical fashion; Ron, Anne Mijch and the hospital doctors gave tutorials, drawn from their experience with patients in the wards. They discussed the OIs, their symptoms and signs, laboratory and radio-diagnostic tests, and up-to-date treatments. In turn, we STI doctors and GPs gave tutorials on taking sexual histories and the management of behavioural problems in difficult patients.
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