Tell Me I'm Okay

by David Bradford

  Michael and I still think of Tom and Dick often and remember the happy carefree times we spent with them before HIV/AIDS came and blotted out those young lives so full of promise and potential.

  * * *

  15The lower level of the normal range of T cells is 500.

  16In immune suppressed patients with HIV, severe and extensive herpes zoster (shingles) is a common opportunistic infection (OI).

  17Didanosine, the second anti-HIV drug available in Australia.

  18TPN can be given intravenously for only a limited period of time because of damage to veins by the infused fluids. Direct infusion into the stomach via a naso-gastric tube, or more permanently by a PEG, is more practical in the long-term.

  19A PEG establishes a permanent tube through the abdominal wall directly into the stomach, bypassing the mouth and oesophagus. It allows high protein, energy-rich supplemental fluids to be fed directly into the stomach.

  Chapter Twelve

  The Demise of Fairfield Hospital

  Sadly, Fairfield Hospital could not last; a hospital dedicated to infectious diseases was exorbitantly expensive to run. Such hospitals had closed in other states, and Fairfield was becoming an anachronism. On several occasions the Victorian government tried to close it, even at the height of the AIDS epidemic, only to back down in the face of vehement protest from the HIV-affected community. I remember, in 1990, taking part in a Save Fairfield Hospital walk through the city, with white-haired Dr Ron Lucas, up front, leading the parade. He told me it was the first time in his life he had ever taken part in a street protest. I had to tell him that he was not alone in that; at the time, I too had never taken part in a street protest. However, the protests were only effective in postponing the inevitable, and in the end the government had its way.

  The hospital closed in 1996, after I had left Melbourne. It was a sad day, because the hospital had an excellent reputation throughout the city. It was especially hard for a generation of gay men to lose an institution they had come to respect and trust, a hospital which had cared for friends, lovers and non-biological ‘family’ members who had been nursed there in their final illness. The hospital is gone but the AIDS memorial garden persists in the grounds of the Melbourne Polytechnic on the old Fairfield site, and can still be visited for its memories and for the reminders it provides of a tragic era.

  Nurses

  Since the time of Florence Nightingale, nurses have played a vital role in medical crises – during wars, revolutions, social unrest and epidemics. The same was true of the early HIV/AIDS epidemic among gay men. Nurses showing unusual commitment appeared wherever they were needed – in hospitals, in outpatient clinics, and in private practices. I have already mentioned Tom Carter, Beth Hatch, and Peter Hayes at the MCDC. When I left the MCDC for private practice, one of the things I missed was working as part of a team and having the back-up of competent and caring nurses. One of the loneliest jobs in the world is being a single-handed general practitioner, which is probably why there are so few of them left.

  In Melbourne, we were fortunate in the nurses who worked with AIDS patients in the wards of the dedicated hospitals. We were no less fortunate in the outpatient clinics. At the HIV Outpatient clinic at Fairfield Hospital, there were exceptional nurses. I especially remember Tess Slater, a motherly soul who devoted her life to her HIV/AIDS patients. And, at the Royal Melbourne Hospital, the ‘AIDS Nurse’ was a wonderful woman called Cherie Fisher, who every weekend entertained patients for breakfast in her own home. Her husband put up with it gracefully. Such health professionals supported a generation of HIV positive patients and their carers.

  Around 1990, the Commonwealth Government introduced a scheme whereby GPs with a large HIV/AIDS case load could apply for funding to employ a practice nurse to assist with counselling patients, to provide support, and to enable busy doctors to participate in clinical trials for new anti-HIV drugs. Despite the excessive red tape involved in applying for funding and complying with reporting requirements, I jumped at the opportunity. Several nurses applied for the position at my practice, but Jeni Mitchell was the successful applicant. As I remember it, Jeni’s application struck me as genuine and enthusiastic, and at interview, her feistiness and down-to-earth approach strongly appealed to me. Her arrival in the practice was a great help, as she had a natural aptitude for clinical trial work. Compliance with the red tape was well worth the effort! At the time of writing, she still works in the area of clinical research. But, her great strength was helping patients cope with their inevitable disease progression and downhill course. In my last three years of GP practice in Carlton I could not have managed without her.

  Anti-retroviral Drugs

  In the second half of 1987, American researchers, working in the laboratory, found that the drug zidovudine (or ‘AZT’), which had been developed some years before as an anti-cancer therapy (but did not work effectively for that purpose), appeared effectively to interrupt the life-cycle of HIV. A preliminary trial of its use in AIDS patients showed that it seemed to stop, or at least significantly slow down, progression to further opportunistic infections and death. AZT first became available at Fairfield and RMH, on a ‘compassionate access’ basis, for people who had been diagnosed with AIDS. Soon after, a multinational, placebo-controlled trial (of which Australia was part) got under way using AZT versus placebo in HIV positive, asymptomatic patients. There was hope in the air at last, but unfortunately, the hope proved short-lived.

  AZT eventually became available throughout Australia for all patients who had HIV infection and a T cell count below 500. Then, one after another, successors to AZT became available. In order of their development and clinical use, these drugs were: didanosine (DDI), dideoxycytidine (ddC), stavudine (d4T), and then lamivu-dine (3TC). These drugs all came from the same family, and worked against HIV by attacking the same specific point in the virus’s life cycle. They were effective anti-HIV agents, but in practice, they only worked for six to twelve months. Until 1996, by using these drugs one after another, we could only delay HIV’s devastating effect upon the immune system.

  The drugs were not free from side-effects: AZT could cause anaemia, sometimes severe enough to require transfusions. DDI and ddC could cause disabling peripheral neuropathy, a condition where the nerves responsible for sensation in the limbs are progressively damaged, leading to pain, numbness, disagreeable ‘pins and needles’ sensations in the feet, and unsteadiness of gait. Use of these drugs, in many cases, brought patients back from the brink of death for a varying period of time. They would then succumb at a later date, because they had run out of further treatment options. The years 1987 to 1996 were characterised by an increasing number of patients requiring palliative care.

  After evening surgery finished at Carlton, I would often have house calls. My practice covered large segments of Melbourne, from Broadmeadows in the north to Elwood and Elsternwick in the south, from Doncaster in the north-west to Yarraville and Footscray in the west. Driving time was considerable. Often, I was not home until 9 or 10pm in the evening, but thankfully Michael always had a meal ready. Over our late dinner I would debrief with him. Without his love and support, I would not have had the strength to manage during those gloomy years. In our last two years in Melbourne, Michael himself volunteered with the VAC and joined a home support team.

  Loss upon Loss

  My patients varied in their abilities to understand the disease they were suffering from, but in the long run they all knew that decline and death were inevitable. Although some had managed to live in denial for months after a positive HIV antibody test, AIDS caught up with them in the end. The answer to one question became clear: a positive HIV antibody test meant that the patient would eventually develop AIDS and, without effective anti-HIV treatment, would die of the disease. The timeline varied from patient to patient; some seemed able to deal with the virus better than others. In fact, we became aware that there were a very small number of HIV patients who earned the title ‘long-term non-p
rogressors’ because their immune systems controlled the virus longer than the average patient.

  However, for the vast majority, the time from acquiring HIV infection until an AIDS diagnosis lay between five and seven years, and the time from a diagnosis of AIDS to death ranged from a few months to two years. A hospital admission for a serious OI, an unpleasant attack of shingles, or non-specific but distressing symptoms like continuous diarrhoea, weight loss and intermittent fever with night sweats, finally brought the reality of the condition home.

  People living with HIV infection faced a series of losses. First, there was the terrible loss of certainty about their future. As time went on, patients had to contend with loss of physical strength, loss of sexual attractiveness, loss of libido and gradually declining sexual function. As they became more unwell, people with HIV infection inevitably suffered loss of work, sometimes loss of friends or even biological family because of fears about contagion or disgust at their gay lifestyle. There was loss of the ability to take out insurance, sometimes loss of rental accommodation, and the loss of being able to travel to some countries (the USA for example). Finally, there was loss of freedom and independence, and loss of life itself. For those who accepted association with the gay community, the VAC provided support. First, they regularly sent a visiting ‘buddy’ to provide nursing support in the home, and eventually, a full-time volunteer support team to maintain a round-the-clock roster. But, some men who had acquired HIV through homosexual sex did not allow out-and-out gay support. They were too ‘closeted’, too embarrassed by possible loss of status, or too fearful that their friends and relatives would come to know about their sexual orientation. As the years passed, some positive women, and straight men too, might refuse any support from a gay organisation like the VAC. Every patient was different and required a tailor-made solution to their unique situation. For the treating doctor it was a headache to ensure that individual patients’ needs were met.

  End of life questions arose. Death from AIDS was painful and distressing: persistent diarrhoea, prolonged nausea, difficulty breathing, extreme wasting with the development of bed sores, swollen and ulcerated lower limbs, loss of vision, partial paralysis, and fitting (convulsions) were just some of the possibilities. As well, the dying process was drawn-out. These patients had been previously fit young men, their hearts were strong and would keep going when other parts of the body had succumbed. It was not surprising that many patients wanted to avoid the final agony. Some had seen partners, lovers or friends die horribly at home or in hospital. Some took matters into their own hands and committed suicide; more sought ‘help’ from their medical practitioners, close friends or other carers. On diagnosis of HIV or AIDS, I became used to patients making me promise that I would assist their death at a time of their choosing, when all hope of quality life was gone. I would agree and make that promise. When the time came, many patients who had been most vehement about their right to die when they wanted to held off any firm decision and battled on with grim determination. Others called me on my promise and I was faced with having to ease their passage out of this life. It was not an easy time, as the case of Philip will illustrate.

  Philip

  I first met Philip in 1988. He was a patient at the HIV outpatient clinic at the Royal Melbourne Hospital (RMH). As he became more ill he asked me to be his GP so that I could provide home care for him. Philip was then in his late thirties, and during the last two years of his life he was employed by the VAC. He was a handsome, intelligent man with a strong character. Like many gay men with HIV in those early years, he developed Kaposi’s sarcoma and his disease failed to respond to any of the known treatments. He was happy to try AZT and then subsequently each of the new anti-HIV drugs as they became available. He accessed them through the clinic at RMH, but their effect was only temporary.

  Sadly, his mouth was primarily affected by the disfiguring lesions of KS around the gums and across the soft and hard palate. As time went on, he also developed skin lesions. He continued education work with positive people, through VAC, for as long as he was able, until a tumour started to invade upwards through the palate and into the lower part of his nasal cavity. As this process proceeded, he suffered severe pain for which there was no option but to prescribe morphine. Once he retired from work on a disability pension, I used to visit him at home at regular intervals. Philip had a pleasant flat in an old building in St Kilda, which he shared with his partner and a couple of other gay men. The flat had a balcony overlooking a street not far from busy Acland Street, so there were people of all sorts passing below.

  It happened to be late summer when I visited, and I used to enjoy sitting on the balcony with Philip, watching the passing parade. Despite his pain and discomfort, Philip was always ready for a quiet conversation. He had sharp and incisive views on all manner of questions and often put me on the spot. Despite this, and his decis-ive character, there was a softness and underlying gentleness about Philip which was very appealing. He would insist I have a beer, then he would sit cross-legged, clad in a kaftan, as I drank it. He was content with his cigarettes and the bottle of morphine syrup, from which he would take a good swig at regular intervals. I felt I could be in the presence of a spiritual guru; those visits at the end of a morning or evening surgery were therapeutic for me. As the KS lesions extended further back into his throat over some weeks, Philip’s discomfort became worse – eating became painful and difficult, and he lost more and more weight. Even more uncomfortably, the lesions in his mouth had become so large that periodically chunks of decomposing tumour tissue would break off. There would be bleeding and he would have to keep spitting the bloody mess into a bowl. It was demeaning and disgusting, and it became obvious to me – and even more so to him – that this state of affairs could not go on much longer. Philip’s quality of life was deteriorating every day that passed and his dependence on morphine syrup became more marked. I used to have to obtain several bottles each time from the RMH pharmacy before I came on my home visits.

  One late evening in 1990, after my consultations in Carlton, I arrived to visit him at home. Philip had gone to bed exhausted after a particularly bad day. A delegation made up of his partner and his closest friends was waiting for me. They’d had a long discussion with Philip that afternoon: his birthday was coming up in a week and he, with the agreement of his friends, had decided that life had become so intolerable for him that he wanted to end it on his birthday. Would I agree to assist him? They were all visibly distressed by Philip’s decision but seemed resolute in their support. I was stunned; this was the first time someone had directly asked me that question. I said I would have to think about it, and take some advice, and promised I would get back to them with an answer in a day or two.

  As I drove home I tried to clarify my own thoughts. I had come to know Philip well. I was quite sure he was not suffering from a depressive illness; on the contrary, despite the constant pain and suffering he had been experiencing for months now, he had maintained an interest and engagement in life. I knew as well as anyone the extent of his disease, and could estimate how truly uncomfortable and unrelenting the pain must be. In fact, it was clear that morphine syrup was no longer keeping him comfortable and injectable opioids would have to be used. I knew that if I were placed in the same position I would have sought an ending long before. There was no prospect of a cure for HIV infection, or even a moderately effective new treatment on the horizon. And I knew that there was no possibility whatsoever of Philip’s health improving in the future. With extensive KS, almost no measurable immune function, and severe wasting, I thought his decision was sane, sensible and thor-oughly understandable. For him to improve and somehow regain immune function in the future would be about as likely as an ampu-tee regrowing a new limb.

  Next day I went to see Peter Greenberg, the consultant in charge of the HIV clinic at the Royal Melbourne Hospital. He was an experienced physician around my own age. He listened carefully to what I had to say and thought for several min
utes before replying. ‘David, thank you for wanting to talk this matter over with me. I remember Philip well and had many interesting discussions with him. He is one of the sanest, most logical-thinking patients I can recall in a long time. As you say, his disease has progressed to the extent it has, and if you are sure he is not clinically depressed, I would have to completely respect his decision. If you feel comfortable in assisting him, you have my support.’

  I thanked him, then said somewhat tentatively as I got up to go, ‘Peter, have you any practical advice for me? What dose of morphine do you think I need to use, given he’s been swigging morphine syrup down like lolly water for months now?’

  He shrugged. ‘I guess it’ll have to be the biggest dose you can manage to give him by injection, but other than that it’ll have to be trial and error.’

  Next, I rang my solicitor, an ‘out’ gay man with strong connections to the gay community. His response was very negative, ‘You’re mad if you get involved in this, David. By all means give his friends advice, but you mustn’t actually assist in a medical suicide. If just one of those friends were to talk and someone who heard him complained to the Police or the Medical Board, you wouldn’t have a leg to stand on. You could be accused of manslaughter, or even murder!’

  Michael and I discussed the difficult issue at length over the next twenty-four hours. Michael, with his legal training, was apprehensive, but felt it had to be my decision and he would be supportive of me whatever I decided. My religious background was implacably against my participating in any way. And, my natural inclination was to be conservative in medical matters. But, every time I thought of Philip as he had been in recent weeks, I felt the trust between us dictated that I had to respect his wishes.

  Although a doctor’s main task is to preserve life as far as humanly possible, an even more over-riding responsibility is to relieve suffering. In extreme cases, as I thought Philip’s case had become, if suffering could only be relieved by death, then so be it. I rang Philip’s partner and said I was prepared to go along with Philip’s wishes, but that obviously I must discuss it fully with Philip, one-on-one, before I made my final decision.