"Also if you don't get AIDS, you die."—Zen Master.
"Most people want salvation in six easy lessons. This is not possible." —Darryl Reanney
When the first attempt at gene therapy was approved after years of debating its ethics, the medical team's PR section released a human-interest story about the team and the patient. The story was meant to disarm widespread suspicion of "gene doctors" by replacing stereotypes with living persons. The project was described, and the team chief commended its therapeutic promise by saying:
"My ambition is to take the word incurable out of the English language."
This is yet another expression of the bizarre mingling of science with fantasy that René Dubos called "the mirage of health". Although the mortality of mortals is plain to see, doctors and the public act out elaborate "conquering disease" fantasies that mute and forestall fate. The charade is bizarre because it looks so much like perjury. On one level, doctors know that the therapeutic benefits of gene therapy lie well in the future, and that at best they will be enjoyed by a few, at great cost. As for eliminating genetic diseases, that could happen only in a world that we do not inhabit. But on another level, doctors and patients somehow believe the hopeful fantasy.
In a wise book, The Death of Forever, Darryl Reanney pondered the human predicament before death. Animals are exempt from it, he explains. Although they know fear, they do not experience death anxiety because they lack self-consciousness and foresight of the future. When the brain of Homo sapiens evolved to the point where individual finitude could be grasped, our kind struck a crisis of consciousness. Self-consciousness functions as the handle on the self-control necessary for tool-making and the wide latitude of action that we call "choice". In that sense the evolution of self-consciousness was the watershed for the species that would soon dominate the earth. But the individual's awareness of death undercut motivation by placing the futility of action on display. "Shit happens, then you die", as our depressed youth say. The solution to the crisis, Reanney thinks, was a manipulation of consciousness through mythopoetic psychotherapy. Early Man denied the finality of death by placing individuals in a cosmic setting that linked ancestors, the living, and coming generations in one great chain of eternal life.
The mythopoetic masking of death served civilisation until scientific enlightenment precipitated a new crisis of consciousness. The mythopoetic vision was attacked as illusory. It was replaced by the mechanical world in which the finitude not only of individual consciousness, but of the Earth and the solar system, was affirmed in all its brute factuality. On this vision, the human species is a nervous mote disporting for an evolutionary millisecond prior to its certain extinction. In the meantime, we are diverted by the many recreations of the consumer society.
Reanney's book is meant to show how the sense of immortality can be recovered by rethinking science and consciousness. While this is an important initiative, his meditations are of concern here for the light they shed on human suffering. He shows that its root is independent of sickness. The fundamental human suffering is knowledge of mortality. What to do? The culturally sanctioned solution, Reanney believes, is "the pursuit of happiness", or "pleasuring". That's the attractive road to salvation, but its effect is to deepen the malaise. The authentic road to salvation passes through the anguish of acceptance of death; one must die many times. Reanney writes:
"Is this then the meaning of life? To struggle, to bleed in silence, to grow through suffering? Is comfort the necessary adversary of growth? . . . My answer has to be yes."
This is the wisdom of traditional religion and morality. Reanney reaffirms it even though he is a secularist with no brief for organised religion. When his book appeared in 1991, it occasioned disquiet among our intelligentsia because an important voice seemed to have turned reactionary. Reanney himself thought that he was facilitating the evolution of consciousness to a higher stage, but for that it was needful to identify the "missing centre" of the secular culture. What is the application of Reanney's wisdom to medicine?
The mission of medicine has traditionally been to heal where possible, to comfort always, and above all to avoid harm. Until a few decades ago, the mission was adjunct to faith healing of many kinds. However, as the technical prowess of medicine increased, physicians promised more and their public insensibly cast them into the role of healing wounded souls. Psychiatry and counselling were testimony that the whole healing function could be "medicalised". Medicine assumes that human suffering is rooted in pathology. Reanney says that it is rooted in consciousness of self, whether well or sick. If that is so, medicine relieves pain but leaves human suffering untouched. Medicine is indeed so secondary to essential human suffering, as Reanney understands it, that its relevance to his theme did not even occur to him. Many doctors know from constant experience that sickness, pain, and suffering run on separate tracks that only occasionally converge. The infertile woman who suffers from child absence is healthy and experiences no pain, but the anguish may be acute. Despite this, our culture assigns to medicine the mission of relieving suffering. The role assignment springs from our belief in a technological fix for all "problems". The upshot is that the more we apply medicine to the relief of suffering, the more we increase it. That is why "health consumers" pose so great a challenge to "health delivery systems". They are in uproar because they believed the promise that medicine would relieve their suffering and then found that it didn't.
Representative of this pandemonium are the words of Kimberly Bergalis. Days before she died, as she believed, of AIDS acquired from her dentist, she spoke her mind to Florida health authorities:
"I blame Dr Acer [the dentist] and every single one of you bastards. Anyone who knew that Dr Acer was infected and had full blown AIDS and stood by not doing a damned thing about it."
This is a curse. It is directed at a practice that the Florida Board of Health adopted in good faith as a best practice standard. The internationally accepted norm is that since AIDS cannot be communicated by casual contact, there was no rational ground for compelling health workers with AIDS to withdraw from attending patients. In addition, there are strong human rights reasons for allowing them to continue. Kimberly also cursed the doctor who urged her to take AZT therapy although she had no AIDS symptoms. She fell ill with oral thrush and the symptoms of chemotherapy toxicity. Kimberly's curse expresses the dilemma of medicine. Her death was not due to lapses from best practice, but to adherence to best practice. Kimberly cursed because she had not resolved herself to mortality. Like most "health consumers", she trusted assurances that medicine relieves suffering. The shock of being killed first by her dentist and then by her doctor was not an outcome that trust had prepared her to accept. So she cursed.
The institutional response to medical injuries is health rights commissions that receive and evaluate complaints. The remedy assumes that valid complaints stem mainly from unskilful or negligent service, and that they can be remedied by better training and increased institutional vigilance. Health ministers extol this remedy and no doubt it is an important safety valve. However, it does not meet the problem of suffering. Many complaints fall into the Bergalis category of an undesired outcome from standard practice-of unavoidable "side-effects" of the system. As for mispractice and malpractice, they too must have a statistical incidence regardless of improvement. But no one wants to be a statistic.
Our present commitments to health care clients were greatly increased by the High Court in Rogers v Whitaker (1993). The patient, Mrs Whitaker, sued her physician because the outcome of an elective operation on her blind eye to restore its sight went wrong. Vision was not restored to the blind eye; in addition she lost vision in her sighted eye. The blinded Mrs Whitaker felt herself victimised. She had questioned the physician closely on possible adverse side-effects, but he advised that there was none. The facts as presented to the court were that Dr Rogers was aware of the possible outcome, but since it occurs in only 1 in 14,000 operations, the risk was too low to warrant mentioning. Accepted practice was cited as supporting this decision. The court took another view. It ruled that best practice by professional standards does not necessarily express the best interest of the patient. Best practice may only "serve the interests or convenience of the members of the profession". As a result, physicians are now under an exacting "duty to inform" patients of all facts that a reasonable person may regard materially relevant to their decision to accept or refuse a treatment offered by the physician. Is this duty to inform honoured in AIDS medical practice?
While state and commonwealth AIDS publications acknowledge the requirement of informed consent and the right to refuse treatment, the approach to AIDS is largely paternalistic. The National HIV/AIDS Strategy booklet (1993), for example, discusses AIDS education, research, and counselling services without mentioning the toxic effects of the only therapy in use and without mentioning that scientific opinion is divided about whether AIDS is caused by a viral agent. The harmful effects of recreational drugs are not mentioned. There is no documentation of the informing process used in offering HIV+ patients AZT therapy. Hearsay suggests that considerable pressure is sometimes brought to bear. Patients are apparently made to feel that if they do not accept the therapy, they are letting the doctor down and may jeopardise their future care. This indeed is typical clinical experience regardless of illness, and it is the reason why gay health advocates have insisted on the right to refuse treatment.
Public pronouncements of leading AIDS doctors are a guide to physician attitudes that patients are likely to encounter in the clinic. Some months ago press coverage of the challenge to the orthodoxy brought a flurry of public statements. Professor Ron Penny, Director of the Centre for Immunology at St Vincent's Hospital in Sydney, said flatly:
"That issue is a load of rubbish. There is absolutely incontrovertible evidence that HIV is prerequisite for the development of AIDS. The question about HIV is not under debate except by the loony fringe."
Professor John Dwyer agreed. The challengers, he stated, are a "no longer credible minority" who are "mischievous and egocentric". Professor John Mills, Director of the National Centre for HIV Virology Research, chided The Australian for "the worst form of irresponsible journalism" in publishing dissident views "without consulting" world experts like himself. Such comments confirm the allegations of "AIDS dissidents" that the orthodoxy they criticise is kept in countenance by aggressive intolerance. By branding critics "loony", critics are pathologised and placed beyond the pale of rational debate. This is an indirect way of saying that the tenets of AIDS science are sacrosanct. "Loony" also conveys the impression that the critics lack credentials, whereas many are scientists of high achievement while others are knowledgeable gay health activists. To acknowledge this fact, however, would be equivalent to acknowledging that AIDS science is in a state of flux and uncertainty.
If this is the response to fellow scientists, what would be the chances of a patient who accepted at face value commonwealth and state pledges to "empower" patient participation in medical decision making? Would they be abused? If not, would there be any willingness to discuss with patients concerns they might have about particular aspects of AIDS science, such as the validity of their test result? It seems unlikely. The dogmatism of AIDS doctors effectively nullifies the pledge of patient participation in decisions affecting their own health. It also scuttles informed consent despite Rogers v Whitaker. AZT is strongly promoted as a therapy. But if patients were informed of the findings of the very medical scientists who give this endorsement, they would learn that in a trial of 308 Australian patients, 30% died within 1-1.5 years of AZT treatment; one or more new AIDS diseases appeared in 56% of patients within a year; that side effects include leucopenia (80%), anaemia (20%), and nausea (30%). Let the reader put the informed consent test laid down in Rogers v Whitaker: if I were HIV+ but had no symptoms, would I consider such information material to my decision to accept or decline the therapy? If the answer is "yes", another question follows:
Why aren't HIV+ patients given information about the toxic effects of AZT, the insecure clinical basis of its prescription, and the unreliability of the AIDS test?
The experience of AIDS medicine tends to confirm that the origin of human suffering is anxiety of death. Its vision of calamity was not confected from the morbid anxieties of those sick to death, nor from the depths of extreme pain, but sprang from the minds of well medical scientists. The vision of mass death expresses, I have argued, the trauma of a profession that has assumed responsibilities beyond its capacity to deliver. The inflation of a small number of sick persons into an imaginary gigantic pool of suffering, and the urgency of "saving lives" from an unknown virus, started an odyssey that courses through fraud in Dr Gallo's laboratory, the helplessness of accountability systems to detect and penalise the fraud, and the haunting curse of Kimberly Bergalis.
Our health system is fortunately not in the advanced state of crisis afflicting America. But we seem to be doing our best to catch up. AIDS science and AIDS culture are American imports. Our philosophy of health services does not differ greatly from American philosophy. We believe that health care administers essentially to human suffering whereas the alternative view is that suffering springs from the nature of self-consciousness. Suffering, like death, must according to Reanney and the Zen master be lived through. There is no salvation in six easy lessons. The choice lies in how suffering is lived through. Presently we travel down the fork in the road that leads to Kimberly's curse. There are many Kimberlys among us. But we can retrace our steps, scale down our expectations of medicine, and travel the alternative path on which suffering is transfigured by its meaning. In the case of AIDS, retracing the steps places the burden of suffering on the medical profession's recognition that a phantom epidemic symbolises its misconception of the aims of medicine.