Tell Me I'm Okay
Page 17
I visited Philip again in a day or so. For the last time, we sat on the balcony together. Philip was extremely weak and frail now, but there was no sign of his mind going or his determination weakening.
‘Thank you for agreeing to my request, David,’ he said. ‘I have thought of little else in recent weeks, and I’m absolutely sure this is the right thing for me to do. We plan to have a party on my birthday, and then, when it’s over I’ll say goodbye to everybody. Just my partner and those few friends who’ve talked to you will stay on. They’ll call you when everything’s ready and you can then come and switch me over to an injectable drug.’
‘I have to tell you, Philip, and I’m sure you can appreciate, that it goes against the grain for a doctor to administer a dose of drug which might be lethal. I’ve talked to Dr Peter at the Royal Melbourne and he respects your decision, but I must warn you that neither of us knows for sure how much morphine we will need to give you to keep you comfortable. With your long-term use of morphine syrup, a dose that would be sufficient for an average male may not even touch the sides for you.’
‘I understand. I simply have to put myself in your hands knowing that you’ll do your best for me.’
The day of Philip’s birthday party arrived, and late in the evening I received the expected summons. Full of trepidation, I drove to St Kilda and there met a subdued little group at the door of the flat. As I was conducted in, the heavy scent of marijuana perfumed the air, and the flat showed the aftermath of a party, with a table in the main room bearing the remains of a large birthday cake. There were bowls and vases of flowers in abundance, while a powerful version of Richard Strauss’s ‘Four Last Songs’ blasted out from speakers in each corner of the room. Philip was lying sleepily in his bed looking very contented.
‘Don’t you just love this music, Doc?’ he murmured.
‘Yes, but I’ve never heard this recording before. It’s amazing!’
‘It should be,’ said Philip. ‘It’s a collector’s item – the 1973 recording of Gundula Janowitz with Herbert von Karajan and the Berlin Philharmonic.’
‘Quite sure you still want to go ahead with this change of therapy?’
He propped himself up on his pillow with a painfully thin arm and looked me steadily in the eye:
‘Absolutely. I’ve never been surer of anything. Do your stuff, Doc.’
I gave him an injection of an anti-nausea drug, combined with a large dose of Valium.
‘You’ll be off to sleep now, Philip. Good night.’
‘Night, David, and thanks for everything.’
On cue, Philip sank back on the pillows and his eyes closed. I waited until he was clearly asleep and breathing regularly, then I slowly injected, over several minutes, a hefty dose of morphine, many times the maximum dose for an adult male.20 Philip’s breathing became shallower; he was clearly deeply unconscious. I stayed there for another half an hour and then left him in the care of his friends. When I departed, Philip was hardly breathing at all although his pulse was still faintly palpable.
At 4.30am I had a call from the flat. ‘Doc, he seems to be coming around, although he’s not making any sense. He’s quite restless. You’d better come.’
I then made the first of half a dozen home visits which extended over five or more days. Although Philip never fully gained consciousness, and I am sure he was not aware of any further suffering, his mortal body showed no signs of wanting to give up the struggle. I managed to organise a hastily put-together support team to assist Philip’s home carers, using nurses like Tom and Beth from the MCDC, Maureen O’Brien, a competent and unflappable nurse from the VAC, and other volunteers. I put in a continuous morphine drip via a syringe drive, and over those days we went through an unprecedented amount of morphine in order to keep Philip comfortable. I exhausted all my doctor’s bag supplies, my own private prescriptions for Philip from the local pharmacy in Carlton, and Dr Greenberg’s prescriptions of huge amounts of morphine from the Royal Melbourne Hospital pharmacy.
Eventually, the end came. Because his friends and carers could never be sure if Philip was aware of anything going on around him, they deemed it essential that the ‘Four Last Songs’ keep playing until he really did expire. Consequently I can no longer bear to hear that work. The ‘Four Last Songs’ brings back harrowing memories of that St Kilda flat with the decaying flowers and the haunting melodies. It was a terrible time for me, because I thought I had let Philip and his friends down badly. It must have been a far worse time for his nearest and dearest, but they never said a bad word about me, and just accepted that my medical assistance had not resulted in Philip’s speedy exit from this life.
I attended Philip’s funeral in an arty venue in St Kilda: an experimental theatre that had once been a church building. ‘Four Last Songs’ got another run for their money, but it was perhaps the brav-est and the most defiant funeral I have ever attended. It was a true celebration of Philip’s life. His partner, his friends, VAC colleagues, fellow gay activists, Dr Greenberg and other doctors and nurses, plus several past lovers all testified to the power of Philip’s life and their determination to see AIDS beaten. Although I felt mentally and physically drained by the events of the past week, and my own failed part in them, I went home curiously uplifted. Today I still remember Philip vividly in his guru robe on the balcony of his little flat in St Kilda. He inspired great respect and affection.
Trevor
It is rare nowadays for specialists in other disciplines like surgery, orthopaedics, emergency medicine, dermatology, or gastro-enterology to discriminate against, or alter standard treatment for people living with HIV. Back in the eighties and nineties it was common. When HIV patients had to be referred to other specialists, their primary care or sexual-health doctors had to do their best to protect them from discrimination. I found this out the hard way, as Trevor’s case will illustrate.
I came home from the surgery one Saturday lunch-time in 1989 to find Michael entertaining a strikingly handsome, well-built young man. Michael introduced him as Trevor, a would-be concert singer studying at the Melbourne University Conservatorium of Music. I remembered Michael telling me a few weeks before that he had met an interesting musician at the Richmond Swimming Pool, where both had been doing their daily laps. They had got chatting and Michael had given him our phone number and suggested he come around for a meal sometime. Trevor hailed from Horsham, some distance west of Melbourne, and had not been in the city long. He still had the wide-eyed wonder and touching naivety of a country boy let loose in a big city. He was rapidly taking in all the Melbourne gay scene had to offer. He stayed for lunch and over the course of it asked if I could take him on as a patient, as he had no GP in Melbourne. I was more than happy to do so.
We met up with Trevor, here and there, over the next few months and he came back for a meal on a couple of occasions. Then one day he turned up in the surgery. He had no symptoms but he had met someone special and thought it was the start of a good relationship. He wanted to have a full check-up including an HIV antibody test. From his description of recent sexual behaviour, he had not always been very careful about safe sex, so I had to ask him how he would cope if the test came back positive. Trevor said he had talked it over with his new partner and they had both decided that having the test was the right thing to do. His partner was going to his own GP and if either of their tests came back positive, they had promised each other they would be mutually supportive. I felt genuinely shocked and sad when Trevor’s test returned unequivocally positive. We had quite a tearful session together when he returned for the result. He agreed to have more blood taken for a T cell count, but said before leaving, ‘Don’t worry, David. I have great faith in alternative medicine and naturopathy. I am sure, with the right dietary advice and some natural medicines, I can beat this thing.’
Trevor duly broke the news to his new partner, Derek, and Derek had strongly reiterated that he was prepared to stick by Trevor and support him every way he could. I felt glad that
Trevor would not have to face the challenge of HIV alone.
Trevor’s T cell count was only minimally below normal, which was reassuring. It implied that he had not been infected with the virus for long, so might have a good seven years of reasonable health. If treatments improved, he might live to benefit from them.
Two months later he arrived at the surgery without an appointment, in the middle of a busy Monday evening clinic. He had acute lower abdominal pain and had to be seen. He had already been to the Emergency Department at Prince Henry’s Hospital over the weekend, and had been honest about his HIV status. After assessment, the doctors told Trevor he had ‘acute gastroenteritis’ and sent him home with some anti-diarrhoeal medication, even though he had not experienced any diarrhoea. I found an extra time slot for Trevor and examined him carefully. There were no clinical signs of immune deficiency, but his abdominal findings indicated acute appendicitis. A fourth-year medical student, in his first clinical year, could have made the diagnosis, so typical was the clinical picture.
‘Trevor, you’ve got appendicitis and your appendix needs to come out. I’ll have to get an ambulance to take you to the nearest emergency department, which happens to be the Royal Melbourne.’
He nodded. ‘Fine, let’s do it. As long as you don’t send me back to Prince Henry’s! This pain is killing me.’
‘Is it okay if I tell them in my referral letter that you have HIV?’
‘Do they need to know? It didn’t help me much at Prince Henry’s, I don’t think.’
‘I think so. It’s not for their sake, as they use universal precautions in surgery for everyone nowadays, but it may be better for you if they’re aware. And RMH is already a hospital designated for HIV patients.’
‘You’re the Doctor. I’ll be guided by you.’
I rang RMH to let them know he was on his way. Then I arranged an ambulance to pick him up at the surgery, handed him his referral letter and promised I’d ring his partner, Derek, to let him know the situation.
When evening surgery was finally over, I rang the Emergency Department (ED) at RMH to find out what had happened. One of the surgical registrars came on the phone, a supercilious young man. ‘You’re asking about that AIDS patient with the abdominal pain? We sent him back to Prince Henry’s about an hour ago, where he ought to have gone in the first place, as he was their patient.’
I was furious!
‘Number one, he does NOT have AIDS. He does have HIV infection but his immune function is still excellent. Number two, it is obvious he has acute appendicitis, not a gastro-enteritis as they alleged at Prince Henry’s when he went there over the weekend.’
‘I don’t agree. I examined him and I think the clinical signs were by no means definite for appendicitis. Given his HIV status he’s more likely to have some opportunistic bowel infection; that’s why I sent him back to Prince Henry’s. I’m sure they’ll sort him out.’
‘Listen, mate,’ I said angrily, ‘I work in the HIV clinic at your hospital every Thursday morning and I have two postgraduate surgical degrees. I know opportunistic infections when I see them, and I know how to diagnose acute appendicitis.’
But the arrogant bastard had put the phone down on me.
After a decent interval I rang Prince Henry’s and asked to speak to the surgical registrar on duty. It was not possible, I was told, as he was in theatre. So, I got put through to the nurse-in-charge of the Emergency Department.
‘Oh yes Doctor, that AIDS patient with the possible appendicitis has been admitted to the surgical ward. He’s been sedated and he’s being treated with ‘suck and drip’.21 The consultant surgeon will see him in the morning.’
I couldn’t believe it! Of course it was possible that there were several cases needing emergency surgery that evening, but it sounded as though Trevor was being put at the bottom of the list of priorities. I rang the hospital switch board and tried to sound as authoritative as possible. ‘Please tell the surgical registrar to ring me as soon as he’s finished with the current case in the operating theatre. I don’t care how late it is. And tell him if I don’t hear from him in an hour, I intend to ring hourly throughout the night until I get to speak with him!’
At 9.45pm I had a call from a pleasant-sounding, but obviously over-taxed surgical registrar. He adopted a conciliatory approach. ‘Yes, look, I too think your patient has acute appendicitis. But it’s frantic here tonight and besides we don’t know at the moment if surgery is entirely safe for HIV patients who are immune-suppressed. I thought it better to treat him conservatively until morning when my boss can see him and make a decision.’
I decided to adopt an equally conciliatory line. ‘Doctor, this guy is HIV positive but he is NOT immune-suppressed. His last T cell count was 480, practically within normal limits. I think his clinical signs are consistent with acute appendicitis, which he’s had for the last two or three days. In my view, his appendix is in danger of rup-turing and causing a generalised peritonitis. ‘Suck and drip’ is not going to stop that happening. You know as well as I do that appen-dectomy is the only valid treatment option.’
‘Yeah, well, I have a perforated peptic ulcer to deal with first, before I could even think of getting to him. My judgement is that it’s best he waits till morning when the boss does a ward round.’
‘I’ll be in to see him tomorrow morning and I expect his appendix will have been removed by then; otherwise I mean to make trouble.’
‘Your call, Doc,’ he said. And with that, he put the phone down.
I had a sleepless night. I knew my diagnosis wasn’t wrong. I strongly suspected that the delaying tactics were due to the fact that Trevor was HIV positive and that the surgical registrars were reluctant to operate on him. Next morning, Tuesday, was a public holiday – Melbourne Cup Day. Michael and I went together to Prince Henry’s Hospital to see for ourselves what had happened to Trevor. He was still languishing in the surgical ward having nothing by mouth and the ‘suck and drip’ regimen still being enforced. He looked pale and wan. His partner Derek sat beside his bed, and it was apparent that Trevor was still in a good deal of pain. Trevor introduced a very prickly Derek who glowered at me. ‘What the fuck did you think you were doing letting those bastards know Trevor was positive?’
‘Derek, I had to. The surgeon should know his patient is HIV positive before he operates. We know that HIV positive people recover from surgery no less well than uninfected people if their T cell count isn’t considerably decreased, but sometimes HIV patients need more antibiotic cover after surgery than other people. I was only thinking of Trevor’s best interests.’
‘Fat lot of good it’s done! He’s still got his inflamed appendix because none of these fuckers have the guts to remove it.’
‘Before I answer, has the consultant surgeon been around? If so, what did he say?’
‘Oh sure, he came around about 8.30am. He stood at the end of the bed and looked at Trevor as if he was some sort of alien, but didn’t lay even so much as a finger on his stomach. He said to the registrar, “Just carry on with the suck and drip, he’ll probably settle okay.” Then he just swished off. We were so pissed with him.’
I thought for a few minutes before replying. ‘If I can arrange for another surgeon to see Trevor today, would you be willing for Trev to sign himself out of here?’
‘Fucking oath, Doc,’ said Derek.
Trevor nodded in agreement. I told Derek to ring me in half an hour, and Michael and I went home. Once there, I immediately rang Bill Johnson, a consultant surgeon at the Alfred Hospital to whom I referred patients with surgical problems. I was lucky to find him at home. I told him the whole story.
‘Of course I’ll see him, David. I can be in my consulting rooms in thirty minutes. Tell him to ring me there. I’m happy to wait around if they can get there reasonably quickly.’
I’d no sooner got off the phone than Derek rang. I explained that Bill Johnson would see Trevor that morning.
‘Thanks, Doc, we’re out of here!’ D
erek said.
Trevor and Derek drove across to Bill Johnson’s rooms. Bill saw them immediately and bulk-billed the visit. Four hours later, he rang me from the operating theatre in the Alfred Hospital. ‘You were entirely correct, David,’ he said. ‘Trevor had a very nasty appendicular abscess which was on the point of bursting. It was quite a difficult procedure, but it was completely successful and his appendix has been removed. He’s a public patient under my care in the Alfred now.’
I thanked the surgeon effusively.
Trevor made a complete recovery from his emergency surgery, but his health was never the same. The prolonged appendicitis had apparently weakened his immune system and his T cell count proceeded to plummet over the next six to twelve months. A year later he had lost weight, had chronic diarrhoea, and was unable to continue his musical studies and singing training at the Conservatorium. He resorted to naturopathy, as he had forewarned me he would. He would have nothing to do with anti-HIV medications nor would he take prophylactic treatment with Bactrim against PCP. His brush with the health system when suffering from acute appendicitis had done nothing to engender any trust in orthodox medicine.
On one of his now rare visits to the surgery at Carlton, he admitted that the cost of consultations with his naturopath was proving prohibitive. One of the measures his naturopath was advising was that he swallow large amounts of chopped, raw liver every day. Trevor was finding this extremely difficult to sustain. I was very angry that the naturopath was making money out of Trevor’s ill health, but there was little I could do. There were plenty of unscrupulous alternative medical practitioners around at the time, preying on sus-ceptible and vulnerable HIV patients. Trevor and Derek came to Michael’s fortieth birthday dinner at Onion’s, a gay restaurant in Prahran, but not long after that Trevor rang us to say he was going home to Horsham to be nearer his folks.