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Cancer treatment and informed consent

By Barbara Wright When my husband was diagnosed with cancer in 1993, a horrific ordeal occurred. Inappropriate treatment was given without basic information being offered. The unnecessary suffering associated with this artificial prolongation of life caused extreme financial and psychological distress to the family and friends. This absolute waste of the scarce health dollar is very disturbing when other people are being denied basic health care due to cost constraints. There is a great need for empowerment for those diagnosed with cancer. At the moment, a paternalistic system exists whereby people are given very little information or assistance at diagnosis. This is at a time when they are usually devastated by the situation. They are left to research the disease themselves when they are often totally without the mental and physical strength to do so. By denying consumers the full story, treatments are instigated that often worsen the situation. The argument that these treatments are scientifically valid is flawed. Often they are being pushed because of the strong pressure exerted on the medical profession by multinational companies. Double blind studies have not always been done. Often those who refuse the standard suggested treatments and use alternative remedies can live longer, with a much better quality of life and less personal financial cost. The information available to ordinary people from our local Cancer Council is not as detailed or comprehensive as that available in the US. Up-to-date information is available on the Internet. The Cancer Council could download this information and make it freely available at very little cost. Professor Martin Tattersall, Sydney University Cancer Medicine Department, and Professor Alan Langlands, Radiation Oncology at Westmead, stated in the August 7, 1995, issue of the Medical Journal of Australia: "Our findings indicate the extent of variation in the practice of providing information to cancer patients commencing treatment ... The current double standard between formal clinical trials [where ethics committees require that patients be given a 'plain language statement', as well as giving their signed consent] and the 'usual' practice outside such trials is apparently narrowing. The reasons for this may relate to fear of litigation rather than recognition of the need to provide full information." Professor John Kearsley of St George Hospital wrote in 1986 an article titled "Cytotoxic chemotherapy for common adult malignancies: the emperor's new clothes revisited?". In his conclusion he wrote, "Treatment of the most common adult tumours by cytotoxic chemotherapy is still disappointing. As Mead and Whitehouse recently concluded, 'for most patients with advanced solid tumours, chemotherapy is not indicated as a routine practice' ... Despite the disappointing performance of conventional chemotherapy in the treatment of many common solid tumours, cytotoxic drugs are being used more and more in an uncontrolled fashion." Recently, Tattersall went further in stating, "It can be argued that cancer chemotherapy should not be made widely available in the community because of its limited efficacy and significant morbidity". Beatrice Faust in her book Benzo Junkie wrote: "The general public does not expect to be sold lethal drugs as medicines any more than it expects to buy lethal motorcars ... Health, in the form of drugs and services that are meant to enhance or restore, is seen as a profitable commodity ... So far, rogue drugs have called up public agitation and litigation on a case-by-case basis. Now it is time to accept that rogue drugs are not random misfortunes but endemic to the medical-industrial complex. "Governments, taxpayers, consumers and doctors of goodwill must effect a shift from private profit in health care to public savings. The savings, of course, include more than the tax dollar. They include human life, health and dignity." Though Faust was not referring specifically to chemotherapy drugs, there is not a great difference in the overall picture. I am lobbying for legislation for consumer-friendly, written informed consent for all chemotherapy, and I am also demanding plain English comprehensive fact sheets. It should be compulsory for these fact sheets to be issued before any chemotherapy is begun. Plenty of time should be allowed to peruse this information before an informed decision is made. The present situation cannot be allowed to continue. Ordinary people have the right to know not only how to help prevent cancer, but the full picture regarding treatment. I'm keen to document the experiences of anyone who is unhappy about cancer treatment. Absolute confidentiality is guaranteed. Contact me at MCA, PO Box 207, Miller 2168 or by email at bwright@peg.apc.org., telephone (02) 608-2410.
[This article has been abridged from the October-December, 1995 issue of the Medical Consumers Association of NSW newsletter. As well as being a retired registered nurse, Barbara Wright is a member of the Combined Pensioners and Superannuants Association Health Committee and NSW MCA president.]