The Experience of Dying- Literature Review

CHAPTER TWO: LITERATURE REVIEW

There is no attempt in this thesis to reiterate the voluminous literature on death and dying, as this field has been reviewed intensively on many occasions, for various purposes (e.g., Bourgeois et al. 2004; Chan 2004; Enck 2003; Kübler-Ross 1969, 1981; Meyers 2004; Porter et al. 2005; Quill & Byock 2000; Samarel cited in Wass & Neimeyer 1995). The main focus of this thesis is my own experience of dying, so the literature in this chapter focuses on biomedicine, and complementary and alternative medicine, the health systems with which I came into contact.

Databases included CINAHL Plus and Medline and the search engine, Google Scholar. Key words for the biomedical section of this review used in the online searches included orthodox medicine, biomedicine, conventional Western medicine and allopathic medicine, paired in various combinations with the words death and dying. Key words for the complementary and alternative health section of this review used in the online searches included complementary medicine, and alternative medicine, paired in various combinations with the words death and dying. Many thousands of references and abstracts were derived from the search, of which the most appropriate sources were accessed and reviewed, in terms of the focus of this research.

Biomedicine

“Biomedicine” is the designation given to the professional medicine of the West; one which emphasises the fact that this is pre-eminently a biological medicine (Gaines & Davis-Floyd, 2004). As such, it can be distinguished from the professional medicines of other cultures, such as Indian Ayurveda, Japanese Kanpo and Traditional Chinese Medicine. The previously used label, “Medicine”, was problematic, in that it effectively devalued the health care systems of other cultures which were considered, by comparison, to be non-medical, ethnomedical, or merely folk – and thus thought to be inefficacious or dubious systems based on belief rather than on presumably certain medical knowledge (Good, 1994).

The term “allopathic” is often used synonymously with biomedicine, as it identifies the biomedical tradition of working “against pathology”; that is, the treatment is meant to oppose or attack the disease as directly as possible (Gaines & Davis-Floyd, 2004).

In Western culture, biomedicine inspires the hope that suffering will be alleviated and illness will be averted; that biomedical research will lead to more effective and safer drugs, provide cures for conditions, which are currently untreatable and medically incurable, and much more. At the same time, much is expected of biomedicine’s reported advances – new reproductive technologies that give hope to the infertile and allow parents to “design” their children, new stem cell treatments for spinal cord injuries and Alzheimer’s disease, new ways of screening our genomes for susceptibilities to illness, new pharmaceuticals that will not just alleviate depression but will make people happier and smarter, drugs that might further extend the life expectancy and the quality of life for those of us in the wealthy West (Rose, 2005).

Nikolas Rose, Professor of Sociology and Director of the BIOS Centre for the study of Bioscience, Biomedicine, Biotechnology and Society at the London School of Economics and Political Science, posed these questions:

How should we evaluate this complex mixture of hype and hope in relation to health? Beyond the hype, what will be the economic and political implications of these developments? Will they reshape our societies, family life, our own sense of who we are and what we can hope for? And what about geopolitics, as China, India, South Korea and many others outside the West invest heavily in genomic and biomedical research and development? Will high-tech Biomedicine exacerbate or alleviate the scandalous global inequalities in health? (Rose, 2005, p.1).

The high expectations placed in genetic and pharmaceutical solutions to disease have not been realised. The limitations of Genomic Medicine are becoming increasingly evident (Conrad & Gabe, 1999; Coulter, 2001). The so-called “O-GOD” (one gene, one disease) assumption (Conrad, 1999) has been proven erroneous. For example, the identified genes for breast cancer account for less than 10% of all breast cancer cases. This means that for more than 90% of breast cancer cases, there is no direct genetic linkage. Furthermore, the event of inheriting a defective gene does not ensure that cancer will develop. Further damage needs to occur to cause the development of cancer – from the toxic effects of unhealthy lifestyles (for example, tobacco and alcohol use, poor diet, physical inactivity); environmental carcinogens (such as exposure to chemicals, radiation), and infections (such as Hepatitis B and the human Papillomavirus) (WHO, 2006).

Except when a disease is the expression of a single gene, as in Huntington’s Disease (Conrad & Gabe, 1999), the genetic understanding of disease may prove to be extremely complex. The limitations of Pharmaceutical Biotechnology are also becoming evident. In general, the Biotech revolution has not happened within the Pharmaceutical sector. Pharmaceutical companies are currently giving the highest priority to cancer research (see Table 1). A survey of 12 new cancer drugs, published in the British Medical Journal (2002), found that none of the drugs offered a big improvement over existing therapy, and often the costs were significantly higher – in one case 350 times higher (Moynihan, 2003).

By the “scandalous global inequalities in health” mentioned in the above quote, Professor Rose is referring to the reality that less than 10% of the world’s biomedical research funds are dedicated to addressing the problems that are responsible for 90% of the world’s burden of disease (Resnik, 2004). The world’s biggest killer is extreme poverty, coded Z59.5 in the International Classification of Diseases, and the world’s predominant burden of disease consists of the major poverty-linked diseases which are devastating poor populations, and which involve maternal and child health care, and the control of HIV/AIDS, tuberculosis and malaria (WHO, 2006). The chronic diseases, consisting of cardiovascular and metabolic diseases, cancers, injuries, and neurological and psychological disorders, are major burdens affecting both rich and poor populations alike (WHO, 2006).

The Director-General of the World Health Organisation, Dr Lee Jong-wook, provides this overview:

Dr Jong-wook notes that the world community has sufficient financial resources and technologies to tackle most of these health challenges, and that what is needed is the political will.

Bioethical Considerations

In his book, “Beyond the Hippocratic Oath: A memoir on the rise of modern medical ethics” (2005), John Dossetor, Associate Professor of Medicine at the University of Colorado Health Sciences in Denver, gives a graphic account of the ethical issues involved in the practice of biomedicine. Included is his response to “ethical dilemmas” and to the highly controversial issues related to biomedicine, including biotechnology, end-of-life concerns such as euthanasia, and the “voluntary” and involuntary surgeries performed to provide an “organs for sale” market. During his discussion on research ethics, he includes the erudite and sensitive document, “Guidelines for New Therapy and Human Experimentation,” adopted by German physicians in 1931, which was subsequently ignored during the Nazi era. “It is a warning to us all,” Dr Dossetor cautions.

Dr Dossetor describes the tremendous pressures he felt to condone unethical professional behaviour during his career as a physician. Included in his book are frank admissions of both personal and systemic failures. For instance, he resigned from a paid consultancy with a medical device company when a potential ethical conflict surfaced, and he declined research training opportunities in Texas and North Carolina during a period when racism would have affected the care of people, who would be his patients or research subjects. He concludes, “The reader will find it hard to condone our passivity, and indeed, so do I.”

Pharmaceutical Biotechnology

According to the 2004-05 National Health Survey, the use of medications is a common health-related action taken by Australians (Australian Institute of Health and Welfare, 2006). Furthermore, prescription medication alone was the most common treatment given by General Practitioners nationwide (2006, p.349). In 2004-05, there were 170 million community Pharmaceutical Benefits Scheme prescriptions – 28 million for general patients and 142 million for concessional patients. This was an increase of 2.7% over the 166 million in 2003-04 and 7.4% over the 148 million in 2000-01. In addition, there were 16 million Repatriation Pharmaceutical Benefits Scheme prescriptions in 2004-05 and 0.4 million (400,000) Pharmaceutical Benefits Scheme doctors’ bag prescriptions (that is, emergency drugs that doctors can provide patients free of charge). In financial terms, the total expenditure on all pharmaceuticals in Australia alone (including in-hospital drug purchases) in 2003-2004 was estimated at $12,576 million (AIHW, 2006).

In global terms, Pharmaceutical Biotechnology is the dominant branch of Biotech (Rose, 2005). The pharmaceutical industry is a multi-billion dollar industry. The global dollar volume is currently $825 billion (Pharmaceuticals and Healthcare Insight, 2007). Pharmaceutical companies world-wide conducted over 23,000 investigational drug programs in 2005 (BioPharm Insight™ 2006). The areas of cancer (N=5,813 or 25%), infectious diseases (N=2,474 or 11%), diseases of the central nervous system (N=2,447 or 10.7%) and cardiovascular disease (N=1,804 or 7.8%) were given priority in drug development activities, that is, over half the attention given to the combined total of all other diseases (see Table 2.1).

Therapeutic Area	Investigational Drug Numbers
Cancer	5,813
Infectious Diseases	2,474
Central Nervous System	2,447
Cardiovascular	1,804
Miscellaneous	1,463
Hormonal Systems	1,237
Immune System	1,194
Musculoskeletal	889
Gastrointestinal	883
HIV Infections	822
Diagnostic / Imaging Agents / Delivery	773
Pain	771
Respiratory	737
Genitourinary	606
Dermatology	532
Haematology	450
Eye and Ear	328
Total	23,223

Table 2.1 Therapeutic Areas and Investigational Drugs (BioPharm Insight™ 2006).

Table 2.1 shows the therapeutic areas for which drugs were being developed by pharmaceutical companies world-wide in 2005, and the total number of investigational drug programs that were underway for each therapeutic area (BioPharm Insight™ 2006). The pharmaceutical industry is different from most other industries, in that its products are often not chosen or paid for by consumers. Private health insurance and public health bodies (e.g. Medicare in Australia, the NHS in the UK) often pay for most of the drugs; and physicians control the choice of many drugs through prescription writing. Thus, physicians play a central role in pharmaceutical sales. Pharmaceutical companies recognise the physician’s key role, and influencing physicians in their drug choices is a well-known marketing strategy (Myers, 2007; Robinson, 2003). Between 1995 and 2003, for example, the physician population in the US grew 15%. During the same period, the number of pharmaceutical sales reps grew 94% to more than 90,000 (Robinson, 2003).

Since 1980, pharmaceutical companies have employed new methods of marketing prescription drugs to consumers. Direct advertising is one such strategy. While direct advertising has been banned in most European countries, in 1999 the United States drug companies were allowed to advertise directly to consumers, through the US Food and Drug Administration (FDA) under the “Guidance for Industry on Consumer Directed Broadcast Advertisements”. As a result, people inquire about or even demand to receive medications they have seen advertised on television.

Another marketing strategy involves pharmaceutical companies constructing disease by pathologising normal responses and processes in healthy human beings. These practices include: the pathologising of menstruation, childbirth and menopause in women (Gaines & Davis-Floyd, 2004); the “biologised” and “culture-bound” disorders of schizophrenia and depression (Gaines & Davis-Floyd, 2004); prescribing oestrogen antagonist drugs as a so-called “preventative” strategy (or a “pre-emptive strike”) to healthy women who are cancer-free (Moynihan 2003); and the mass drugging of children for “mental health” reasons (Spillane, 2006). Such practices have been (correctly) described as crimes against humanity (Spillane, 2006, p.41).

Physicians have thus been conscripted into a systematic campaign by the pharmaceutical industry to broaden the boundaries of illness, so that drugs can be prescribed to normal and healthy people. As authors Ray Moynihan and Alan Cassels note in their book, “Selling sickness: How the world’s biggest pharmaceutical companies are turning us all into patients”, a health system that allows drug companies to play a role in defining who is sick is fundamentally unhealthy (Moynihan & Cassels, 2005).

Other controversies and ethical concerns surrounding the pharmaceutical industry include the impact on consumers of the pharmaceutical industry’s aggressive campaign to maximise their markets. Medical writer Ray Moynihan states:

The Australian market is equally vulnerable to exploitation by the marketing strategies of pharmaceutical companies, however, the US is the epicentre of the “selling of sickness” or “disease mongering”. Though Americans make up less than 5 percent of the world’s population, the US makes up 50 percent of the drug market, that is, half of the total spending on drugs (Moynihan, 2005).

The role of using prescription (and other licit) drugs as a panacea is reminiscent of the role of illicit drugs in drug addiction. Prison doctor, psychiatrist and author Theodore Dalrymple, states that the temptation to take opiates and to continue to take them, arises from two main sources: first, from humanity’s eternal existential anxieties, to which there is no wholly satisfactory solution, at least for those who are not unselfconsciously religious; and second, the particular predicament in which people find themselves (Dalrymple, 2007). Dr Dalrymple suggests that taking drugs to alleviate existential suffering is thus a displacement reaction. People who are addicted to drugs have a problem, but it is not a medical one; their problem is they do not know how to live. Dr Dalrymple concludes:

Biomedical practitioners have justified their frequent use of aggressive interventions in historical terms, citing the drastic reductions in mortality that have resulted from early 20th century understandings of the aetiology of infectious diseases and the discovery of antibiotic drugs. Their critics, however, can show that disease rates were already dropping in the industrial world because of cleaner water, improvements in sewage treatment and nutrition (cited in Gaines & Davis-Floyd, 2004).

The role of pharmaceutical companies in the developing world is a matter of some debate, ranging from those arguing in favour of billions of dollars in aid provided to the developing world, to criticisms of the use of the poorest amongst us in human clinical trials, often without adequate protection, particularly in states lacking a strong rule of law (Wikipedia, 2007). Recent books and movies have been written in the west criticising the role of western pharmaceutical companies, or lack thereof, in healthcare in Africa. The most prominent of these is probably “The Constant Gardener” by John le Carre (2004, 2005), a novel that was turned into a movie. Supporters of the plot argue that it is frighteningly realistic. However, detractors including staunch critics of the industry, point out its flaws.

One example of a tragedy occurring in a developing country is described in article published in the British Medical Journal (Kovac, 2001; Wise 2001), in which a clinical trial was conducted by a corrupt MD in Pfizer Pharmaceutical’s name in Nigeria, during a meningitis epidemic in 1996. That study allegedly used children to test the antibiotic drug ‘Trovan’, which had proven efficacious in adults, but not in children. Of 100 children tested (without informed consent) with the experimental drug “Trovan” and another 100 children tested with a gold standard drug, it was alleged that 11 children died, and others developed brain damage, partial paralysis or deafness as a result. The drug’s licence was withdrawn in Europe, because of liver toxicity and some deaths (Wise, 2001).

A related concern expressed in the last two decades by scientists, government officials, and science policy experts is the increasing role of financial interests in research. Many believe that these interests are undermining research by causing bias, error, suppression of results, and even outright fraud (Resnik, 2000). Drug companies fund an estimated 80% of medical research (Souter, 2005), and it has been found that when research is funded by drug companies, researchers are 2.6 times as likely to report positive findings (Hassed, 2006).

Former editor-in-chief of the “New England Journal of Medicine” and a member of Harvard Medical School’s Department of Social Medicine, Dr Marcia Angell (M.D.) is a recognised authority in the field of health policy and medical ethics, and an outspoken critic of the health care system. She states:

In her award-winning book, “The truth about drug companies: How they deceive us and what to do about it” (Angell, 2004), Dr Angell states that the increase in drug spending reflects, in almost equal parts, the fact that people are taking a lot more drugs than they used to, that those drugs are more likely to be expensive new ones instead of older, cheaper ones, and that the prices of the most heavily prescribed drugs are routinely increased, sometimes several times a year. Dr Angell proposes a program of vital reforms, which include restoring impartiality to clinical research, and severing the ties between drug companies and medical education.

Biomedicine, Cancer and Australia’s Health

The general life expectancy of Australians is currently 83 years for females, and 78 years for males, placing us among the top five nations in the world (AIHW, 2006, p.xii). Almost 80% of all deaths occur in those aged 65 or over, and almost 1 in 3 (31%) occur in those 85 or over. In terms of general health, Australia ranks among the top 10 of the world’s developed countries across numerous important health indicators.

While people today are generally living longer, cancer is now the main underlying cause of death and disability in Australia, and the proportion of deaths due to “malignant neoplasms” has in fact increased (ABS, 2006). Cancer is also becoming an increasingly important factor in the global burden of disease. Over seven million people die each year from cancer, and 24.6 million people are currently living with the disease (WHO, 2007). Based on current trends, the estimated number of new cases is expected to reach 16 million annually by the year 2020 (WHO, 2007).

Malignant neoplasms were the main underlying cause for 37,989 deaths, accounting for 28.7% of all deaths in Australia in 2004. Since 1994, the proportion of deaths due to Ischaemic heart diseases has consistently decreased from 24.1% to 18.5%, while the proportion of deaths due to malignant neoplasms has increased from 26.6% to 28.7% (The Australian Bureau of Statistics, 2006).

In 2004, the main forms of cancer causing death amongst Australian males were lung cancer (22%), prostate cancer (13%), colorectal cancer and cancer of the lymphoid and related tissues (10%) (ABS, 2006). In females, the cancers most commonly causing death in 2004 were breast cancer (16%), cancer of the trachea, bronchus and lung (15%), colorectal cancer (12%) and cancer of the lymphoid and related tissues (10%) (ABS, 2006).

In both sexes, cancer is the leading cause of death among 45 to 64 year olds, and causes more premature deaths and overall disease burden than cardiovascular disease (AIHW 2006, pp. xii & 52).

Even though prostate cancer is the most commonly registered cancer in males, the majority (65.2%) of prostate cancer deaths are among males aged 70 years and over; only 7.3% are under 60 years (ABS, 2006). For males, ischaemic heart disease, suicide, land transport accidents and lung cancer are the leading causes of potential years of life lost.

Years of potential life lost (YPLL) is a measure of premature mortality for deaths occurring between the ages of 1 year and 78 years inclusive. In 2004, the proportion of YPLL from Malignant Neoplasms was 30.4% for males, and 43.6% for females (The Australian Bureau of Statistics 2006).

For females, breast cancer is the most commonly registered cancer, and 47.3% (almost half) of all breast cancer deaths among females are under 60 years old (ABS, 2006). That is, females are dying younger from cancer compared to males (by percentage of potential years of life lost), and are four times as likely to die from cancer than from heart disease.

In global terms, breast cancer is also the most common type of cancer in women, and the most frequent cause of cancer-related deaths among women worldwide (Hortobagyi et al. 2005; WHO, 2007). In one large study, it was found that both men and women aged less than 50 years were at higher risk for advanced breast cancer (Hill et al., 2005). There is evidence to suggest that causal factors have a significant environmental component. In the Executive Summary of “State of the Evidence: What is the connection between the environment and breast cancer?” (Breast Cancer Fund & Breast Cancer Action, 2006), the authors state:

To reduce the burden of breast cancer in our society, public officials and the scientific and corporate communities must act on what is already known about agents that increase the risk of the disease. At the same time, major gaps exist in our current knowledge and we need more studies asking tough questions about the underlying causes of breast cancer. While we need further research on screening, diagnosis and treatment, decades of paying little attention to true prevention of breast cancer have resulted in needless sickness and death …

We ignore at our peril evidence that radiation and chemicals are contributing to the growing human and economic cost of breast cancer. Halting the scourge of this disease requires that we take action based on existing evidence to protect the health of people and the planet. Waiting for absolute proof brings more needless suffering and loss of lives. It is in our power to change the course we are on. It is time to act on the evidence. (2006, p.11)

These authors conclude that unless the factors that link breast cancer to environmental health hazards are clearly identified and addressed, it will not be possible to prevent the incidence and increase of breast cancer diagnoses (see also Potts 2001, 2004). The authors propose an ecological approach to public health protection. They consider breast cancer to be not just a personal tragedy for those affected, it is a public health crisis that requires political will to change the status quo. These authors argue that because many of the factors that contribute to the disease lie far beyond an individual’s personal control, they can only be addressed by government policy and private sector changes. They call on society, industry, the business sector and Government bodies to support a shift of the policy agenda towards more “primary prevention” strategies, and to adopt the “precautionary principle” to public policy. Under this principle, indication of harm, rather than definitive proof of harm, triggers policy action. The aim is to prevent sickness and death by eliminating the (probable and the proven) causes.

Although “primary prevention” strategies have the potential to generate the best results overall, Australian society continues to rely almost exclusively on an allopathic approach to cancer, on “cancer control” strategies to manage existing cancers, and on interventions which are applied after cancers have developed and are detectable.

Physicians and medical scientists are becoming increasingly critical of important aspects of the Biomedical response to cancer. Some express their concerns publicly, in spite of the fierce backlash of intolerance and ostracism they subsequently experience from the medical fraternity, pharmaceutical companies and government cancer bodies. Dr John Bailar, an American epidemiologist, who worked at the National Cancer Institute for 22 years, as well as the Harvard and McGill universities, and who is now emeritus professor at the University of Chicago, stated clearly in his paper titled ‘Cancer Undefeated’ (Bailar, 1997) that the ‘war against cancer’ was far from over, and that the effects of the new treatments for cancer on mortality have been largely disappointing. He was subsequently called a ‘murderer’ for ‘dissuading people from using the most effective cancer treatments’ (Souter, 2005, p.25). In his paper, Dr Bailar mirrored the conclusions reached by the World Health Organisation (2007), the Breast Cancer Fund and the Breast Cancer Action (2006) groups quoted above, that that the most promising approach to the control of cancer is a national commitment to prevention, with a concomitant rebalancing of the focus and funding of research (Bailar, 1997).

Leading London oncologist, Professor Michael Baum, infuriated the UK breast-screening establishment with his revised position on mammography (Souter, 2005). In the late 1980’s Professor Baum promoted its introduction. Now, in the light of further large studies and along with a number of other researchers, he raises serious questions about whether the potential benefits for a few women outweigh the downsides for the many others, particularly when it comes to screening women under the age of 50. Screening is presented as reducing a woman’s relative risk of dying form breast cancer by 30%. In real terms, 1000 women over the age of 50 have to be screened over a 10 year period in order to achieve two fewer deaths from breast cancer. Professor Baum believes the downsides of screening include: false diagnosis, over-diagnosis and over-treatment – from biopsies to unnecessary mastectomies. In a 2002 interview, Professor Baum said he resigned from Britain’s National Screening Committee:

When considering surgery, Professor Michael Baum, Harvard

German biostatistician Professor Ulrich Abel of the Heidelberg/Mannheim Tumour Centre, analysed hundreds of clinical trials and publications around the world that had looked at the value of chemotherapy for advanced, solid-tumour cancers (such as bowel, breast and lung cancers, as opposed to cancers of the bloodstream such as leukaemia). He found that there was no direct evidence that chemotherapy prolonged the survival of patients with advanced carcinoma (Souter, 2005). In the case of ovarian and lung cancer, Professor Abel found that there was some evidence of benefit, but it was small at best, and more aggressive treatments were not necessarily more effective. Nor was it clear, on the whole, that it helped with the quality of life of patients who were symptom-free. Yet, chemotherapy is a treatment routinely prescribed by oncologists (and perhaps demanded by patients) as a so-called “best practice” method.

On the benefits of chemotherapy in less advanced cancers, Professor Abel states, “In early breast cancer, the situation is rather clear. Chemotherapy can have an effect on survival” (Souter, 2005, p.27). Dr Michael Boyer, head of medical oncology at the Sydney Cancer Centre, agrees with Professor Abel’s conclusion, but cautions that to save the life of one woman with breast cancer, or to give her 5 to10 years survival, it would mean treating 20 to 25 women who would not receive that benefit, or who did not need the treatment (Souter, 2005). Chemotherapy would have only a harmful effect on these women, because of the toxic effects of chemotherapy in addition to the symptoms of their disease.

Professor Abel also looked at the evidence for the widely held conviction that a “response” to chemotherapy – a reduction in the size of a tumour – is a good indicator of prolonged survival. He states:

The second argument is that there may be some advantage to patients with a response, but that response might also help to single out cells which resist chemotherapy and remain in the body while the others are killed (Souter, 2005, p.27).

If that were the case, he continues, the life expectancy after a relapse (a recurrence of the cancer) might in fact be shortened because these cells are more aggressive.

Associate Professor Graeme Morgan, a radiotherapist at Sydney’s Royal North Shore Hospital, supports Professor Abel’s conclusions. He argues that if chemotherapy were to disappear altogether, the 5-year survival rate of all patients with cancer would drop by only 2 percent, from 62 percent to 60 percent (Souter, 2005). His critics point out that some cancers respond well to chemotherapy, for example, the lymphatic cancers, testicular cancer and Hodgkin’s disease (Souter, 2005).

Biomedicine’s claims to success are clearly justified for some forms of cancer. Biomedicine’s effectiveness appears to be limited mainly to cancers, which have not metastasised (spread), as Professor Abel indicates in his findings. Statistics show that the (5-year) survival rate of patients with small cancers detected early (before metastasis) is substantially higher, with 83% of patients alive at 5 years, compared to 61% of those with regional spread, and only 13% with secondary cancer, that is, those whose cancer has spread from the primary site or region, to other areas within the body (Cancer Institute NSW, 2006, p.48). These figures may appear inflated due to the “lead time bias” phenomenon, that is, because of screening and better diagnostics, some cancers are now diagnosed earlier, which means that survival time from the time of diagnosis is longer, but the point of death is the same (Black & Ling, 1990).

In summary, biomedicine’s largely allopathic approach to cancer has not resulted in a significant reduction in cancer rates. In fact, the incidence, morbidity and mortality rates of cancer continue to rise. That is, in spite of the enormous expenditure on biomedical research and practice, and the numerous Pharmaceuticals and Biomedical interventions and technologies employed in “the war against cancer”, the statistics clearly show that increasingly more people are being diagnosed with cancer, which is claiming more lives, at a younger age (see Tables 2 & 3). To reiterate, the most promising approach to the control of cancer is a national commitment to prevention, with a concomitant rebalancing of the focus and funding of research (Bailar, 1997; WHO, 2007). The government, industry and cancer bodies are called upon to act on existing knowledge and to further elucidate the causal factors of cancer, to shift to “primary prevention” strategies and to adopt the “precautionary principle” to public policy (BCF & BCA, 2006).

Complementary and Alternative Medicine

Complementary and Alternative Medicine (CAM) is defined as “a group of diverse medical and health care systems, practices, and products that are not presently considered to be part of conventional medicine” (National Center for Complementary and Alternative Medicine, 2007). CAM comprises “Whole Medical Systems” theories and practices, including: Naturopathy, Homeopathy, Traditional Chinese Medicine, and Ayurveda – some which evolved apart from, and much earlier than, Western conventional medicine (NCCAM, 2007). CAM modalities may be grouped into four main categories: mind-body medicine, biologically based practices, manipulative and body based practices, and energy medicine (see Table 2.2) (NCCAM, 2007).

Therapies within CAM are categorised as “complementary” if they are combined with conventional medicine (biomedicine) to provide a more holistic approach to health care. “Alternative” therapies are defined as those that replace conventional medicine. In different circumstances, the same CAM modality could be used either as “complementary” or as “alternative”.

CAM SYSTEMS:

Comprise ‘Whole Medical Systems’ theories and practices

such as: Naturopathy, Homeopathy (Western); Traditional Chinese Medicine, Ayurveda (non-Western);

Four modes of therapy:

1) mind-body medicine

e.g. patient support groups, cognitive-behavioural therapy, meditation, prayer, mental healing, creative therapies such as: art, music, dance;

2) biologically based practices

e.g. herbs, foods and vitamins, such as: dietary supplements, herbal products, also (unproven) cancer treatments such as shark cartilage;

3) manipulative & body based practices

e.g. chiropractic or osteopathic manipulation, massage;

4) energy medicine

e.g. biofield therapies such as qi gong, reiki, therapeutic touch; & bioelectromagnetic-based therapies involving pulsed fields, magnetic fields, or alternating and direct-current fields.

Table 2.2 Complementary and Alternative Medicine (CAM) Adapted from ‘What is CAM?’ by the National Center for Complementary and Alternative Medicine (NCCAM, 2007).

In Australia, “Complementary Medicines” are regulated as medicines under the Therapeutic Goods Act of 1989, and are defined as medicinal products, which contain herbs, vitamins, minerals, nutritional supplements, homeopathic medicines and certain aromatherapy products (Department of Health and Ageing, 2006). Under the Act, Complementary Medicines comprise traditional medicines including Traditional Chinese Medicine, Indian Ayurvedic, and Australian Indigenous Medicines.

Differences exist between the CAM “whole systems” worldview and the “reductionist and materialistic” worldview of much of mainstream conventional medicine as currently practised (Bell, & Koithan, 2006). In the “whole systems” approach used by CAM, diagnoses and treatments target the person as a whole indivisible organism in his or her environmental context. In the “reductionist and materialistic” approach used by conventional medicine, diagnoses and drug treatments target the local organ or cell in isolation from, or controlled for, other environmental factors.

The CAM and conventional medicine paradigms vary also in their research methods (Bell, & Koithan, 2006). Many CAM and biomedical researchers and practitioners insist on strict scientific rigour being applied to CAM practices in order to legitimise their claims (Berman, & Chesney, 2005; Ernst, 2004; Kotsirilos, & Hassed, 2004; NCCAM, 2007). Equally, many CAM and biomedical researchers and practitioners assert that attempts to apply reductionist scientific research to CAM’s “whole systems” practices are inappropriate, and often produce conflicting and controversial results (Bell, & Koithan, 2006; Borgenson, 2005; Flesch, 2007; Hunter, & Grant, 2005; Kerridge, & McPhee, 2004a, 2004b).

Biomedical advocates assert that although randomised clinical trials may not be appropriate in assessing certain CAM modalities and products, rigorous trials are still possible (Komesaroff, 1998; Sanderson, Koczwara, & Currow, 2006). Furthermore, rigorously generated evidence assist the integration of CAM into standard medical care (Baer, 2007a; Robotin, & Penman, 2006; Cohen, Penman, Pirotta, & Da Costa, 2005). Selected CAM therapies are currently practised in the context of integrative medicine, which is the combination of mainstream medical therapies and CAM therapies that have “high-quality scientific evidence of safety and effectiveness” (NCCAM, 2007). One important outcome is that there is a greater pluralism within health care than previously. The type of therapies available to patients within the medical healthcare system have increased, giving patients more choice and diversity in the types of treatments they receive.

The call for evidence generated by biomedicine’s ‘gold standard’ randomised clinical trials to legitimise the integration of alternative medicine into healthcare systems may be interpreted as deeply political (Barry, 2006; Broom, & Tovey, 2007). Sociological studies have illustrated clearly the strong political power of biomedicine in shaping the nature and delivery of primary healthcare (Barry, 2006; Broom, 2006; Coburn, 2006; Dew, 2000; Willis, 2006). These studies have shown that healthcare delivery was not, and is not, based solely on what is ‘safe’ and ‘effective’.

The practice of (any) medicine may not be driven by altruistic motivations alone, that is, purely by humanitarian concerns and the philanthropic care of fellow human beings. Rather, what constitutes the nature of healthcare and its delivery is a mix of physiological, contextual, ideological and political factors (Broom, 2006). The literature acknowledges that individual men and women could be altruistic and community-oriented, but also demonstrates that the medical profession as a corporate entity has often reflected more mundane interests (Friedson, 1970a &1970b). Indeed, a historical analysis of the development of biomedical dominance shows that the medical profession can and did, to various degrees and with various degrees of effectiveness, use its multiple forms of power, authority and influence to orient health care systems towards its own interests rather than necessarily the interests of its patients, the public, or the state (Coburn, 2006).

Feminist researchers assert that the ‘medicalisation and co-optation’ of CAM has serious implications for women’s health by constraining CAM’s potential to challenge, resist, and transform the hegemony and inequalities of biomedicine (Flesch, 2007). Therefore, research that speaks to the roles of women as practitioners and as students of CAM is clearly needed.

Advocates of complementary medicine also express the concern that integration within the context of biomedical dominance essentially means that the dominant status of biomedicine is not challenged. Physicians currently retain the power to exercise authority over fellow healthcare workers in matters within, and outside, their jurisdiction (Wailoo, 2004). A significant amount of research has been undertaken into professional boundary disputes and gate-keeping tactics, particularly on the part of the biomedical community (Shuval, & Mizrachi, 2004; Mizrachi, & Shuval, 2005). Focus has almost invariably been on the ways in which certain elements within the biomedical community continue to exclude, or support the sidelining of, the majority of CAMs from primary care, rather than on issues of ‘safety’ and ‘effectiveness’ (Dew, 2000; Kelner, Wellman, Boon, & Welsh, 2004).

There is, nevertheless, an increase in the demand for CAM products and treatments in the Western world (Shmueli, & Shuval, 2006; Xue, Zhang, Lin, Da Costa, & Story, 2007), an increase which occurs within the context of biomedical dominance, and which is not necessarily reflective of a significant body of scientific evidence in support of their effectiveness (Humphries, 2006). In Australia, this increase is apparent in spite of the PAN pharmaceuticals scandal concerning the manufacture of products used in CAM treatments, an event which might be expected to have undermined public confidence in them (MacLennan, Myers, & Taylor, 2006; Xue, et al., 2007).

One of the reasons cited for the significant and growing popularity of complementary medicine is people’s dissatisfaction with biomedicine and its values (Shmueli, & Shuval, 2006). A combination of factors have been discussed in the literature to determine the nature of this dissatisfaction, namely: a growing disillusionment with the technology and bureaucracy of Biomedicine and an increased questioning of its excessive invasiveness; heightened consumer awareness of the iatrogenic (detrimental physician-induced) effects of Biomedicine; and a growth in expectations for quality service (Shmueli, & Shuval, 2006).

There are complex societal factors influencing the use of complementary and alternative therapies (Broom, 2006; Willis, 2006). Other reasons given for CAM’s significant and growing popularity include: the pragmatic pursuit of better outcomes for chronic health problems (Shmueli, & Shuval, 2006), which may relate to an ‘effectiveness gap’ in medical care (Fisher, van Haselen, Hardy, Berkovitz, & McCarney, 2004); a preference for self-care (Humpel, & Jones, 2005), and ‘holistic’ or ‘natural’ approaches to health (Humphries, 2006); and beliefs about disease causation that differ from the medical paradigm (Broom, 2006).

As a form of ‘health consumerism’ CAM use has interlinked facets, which include: a market-based approach promoting individual choice (Weeks, Verhoef, & Scott, 2007); access to expert and lay knowledge through the Internet (Broom, 2006); advocacy for the inclusion of consumer perspectives within health care (Fonta, 2007), and formal mechanisms for protecting consumer rights (Department of Health and Ageing, 2006; NCCAM, 2007). The use of complementary and alternative products and therapies may thus be viewed as a social movement which advocates for greater protection of consumer interests.

In Australia, a national population-based survey was recently conducted to determine the use and expenditure on 17 of the most popular CAM modalities (Xue, et al., 2007). In May-June of 2005, a sample of 1,067 adults from all Australian states and territories were recruited by random-digit telephone dialing. The survey participants were asked about their CAM use in the previous 12 months.

This study found that there was a higher than expected prevalence of CAM use amongst this population. 68.9% of those interviewed had used at least one of the 17 forms of CAM, and 44.1% visited a CAM practitioner within the previous 12 months. The estimated number of visits to CAM practitioners by adult Australians (69.2 million) was almost identical to the estimated number of visits to medical practitioners (69.3 million). Almost one third (32.1%) of these visits were to massage therapists (Western and Chinese therapeutic massage), and more than one quarter (27.5%) were to chiropractors. The annual ‘out of pocket’ expenditure on CAM, nationally, was estimated at 4.13 billion Australian dollars (US $3.12 billion). Less than half of the users informed their medical practitioners about their CAM use, and their doctors did not ask them about their CAM use. This was considered a matter of concern because of the potential side-effects of CAM products (Webb, Hardikar, Cranswick, & Somers, 2005) and because of possible problems related to the contamination of CAM products (Cheung, Xue, & Leung, 2006). It has been argued elsewhere that the rising use of CAMs does not change the rules for informed consent (Mayes, 2004). If a physician or CAM therapist advocates or prescribes CAMs, then it is their legal duty to warn the patient of the material hazards, the possible complications that could occur, the reasonable alternatives, and the effects of non-treatment (MacLennan, Myers, & Taylor, 2006).

The most common characteristics of CAM users were: age 18-34, female, employed, well-educated, with private health insurance coverage, and higher than average incomes. This finding was consistent with the findings of a national survey conducted in the United States (Barnes, Powell-Griner, McFann, & Nahin, 2002). The higher prevalence of CAM use by the youngest group was largely because of their high participation rates in the practices of yoga, qigong, and t’aichi; also because of their high use of biologically based products for reasons of clinical nutrition. Nearly half (45.8%) of all the respondents also used CAM products for reasons of clinical nutrition. The highest provider-based CAM therapies used were chiropractic, acupuncture, osteopathy, and massage therapy.

The most important finding in this study was perhaps that the prevalence of CAM use nationally (at 68.9%) was considerably higher than previously estimated (at 52.2%) (MacLennan, Myers, & Taylor, 2006). As this was a quantitative study, the reasons participants chose to use particular forms of CAM was not investigated. This was a stated limitation of this study, as was the relatively low participation rate overall.

The Australian government is currently increasing its support for complementary medicine (Baer, 2007b). The government’s main support for complementary medicine has come in the form of training programs in chiropractic, osteopathy, traditional Chinese medicine, and naturopathy in public tertiary institutions and in partnerships between private complementary colleges and public universities (Baer, 2007b). Compared to biomedical education with its requirement for hospitals and sophisticated technology, complementary training programs are inexpensive. Furthermore, complementary services are generally not covered by Medicare, but are an out of pocket expense paid for by consumers or covered by private health insurance. The government’s increased support of CAM can be thus viewed in terms of economic rationalism – as a measure to address rising health costs (Baer, 2007b).

Research shows that a significant proportion of cancer patients use CAM treatments and products, either in addition to or in combination with biomedical cancer treatments (Cassileth, & Vickers, 2005). Throughout the world, people with cancer have a relatively high mortality rate, a relatively low cure rate, and often experience multiple symptoms from cancer and its treatments (Ffnnebf, Verhoef, & Paterson, 2007). Cancer sufferers, understandably, explore all potential treatment options, including CAM modalities.

CAM and cancer research has mainly concentrated on testing a limited number of available treatments using a well-established pharmaceutical randomised controlled trial research model with tumour size and/or survival as primary outcomes (Ffnnebf, et al., 2007). CAM trials have, in general, resulted in mostly negative results when seen from the perspective of these endpoints (Ffnnebf, et al., 2007). However, cancer patients’ reasons for seeking CAM or integrative medicine were seen as not primarily related to tumour reduction and/or prolonged survival. The reasons cancer patients gave for embracing CAM were summarised as their seeking to achieve improved wellbeing whilst living with cancer (Ffnnebf, et al., 2007). This conclusion was based on the findings in the following study.

A systematic review of the literature was undertaken to determine the socio-demographics, disease characteristics, and the reasons associated with adult cancer patients’ use of complementary and alternative medicine (Verhoef, Baineaves, Boon, & Vroegindewey, 2005). Of the 500 articles found, 52 met the inclusion criteria. Most of the studies were conducted in the United States (40.4%), then Western Europe (21.3%), Canada (17.3%), the Middle East (9.6%), Asia (5.8%) and Australia/New Zealand (3.8%). Excluded from the review were qualitative studies which did not report findings in a standardised and objective manner, epidemiological reports which only discussed the prevalence of CAM use, articles in which the authors only described oncology patients’ feelings or beliefs towards CAM, and those in which a cancer diagnosis was considered a predictor for CAM use.

The results showed that a wide range of CAM therapies was used by cancer patients, including diet and nutrition, mind-body interventions, traditional and folk remedies, pharmacological and biological treatments, manual healing methods, and herbal medicine. While many studies examined CAM use in cancer patients with all types of malignancies, those focusing on breast or prostate cancer patients were predominant. Survey designs were most common, with data being collected by self-administered questionnaires or by face-to-face interviews.

The reasons cancer patients gave for using CAM varied widely. A perceived beneficial response was stated most often (38.4%), followed by wanting control (17.3%), a strong belief in CAM (17.3%), CAM as a last resort (9.6%), and finding hope (9.6%). Some researchers have concluded from these findings that cancer patients’ reasons for seeking CAM or integrative medicine are not primarily related to tumour reduction and/or prolonged survival; and that CAM interventions are consequently often not primarily directed at affecting changes in biomedical outcomes (Ffnnebf, et al., 2007). However, it is possible to draw a different conclusion from these results. The low scores on CAM ‘as a last resort’ and of ‘finding hope’ may well be interpreted in terms of the respondents’ low expectation of the efficacy of CAM modalities. Alternatively, the low scores to these questions might indicate that CAM modalities were not seen as a last resort, but one worth pursuing; and that the respondents had not yet given up hope. This alternative explanation is supported by the fact that the respondents were predominantly people who were more educated, and were perceived as being consequently more likely to harbour cynicism towards conventional treatments (Moschen, Kemmler, & Schweigkofler, 2001; Lengacher, Benner, & Kip, 2002). The high scores given to reasons for CAM use which included ‘a beneficial response’, ‘wanting control’, and ‘a strong belief in CAM’ may be interpreted not just as the need to improve well-being while living with cancer, but also as the need to proactively seek healing, and subsequently a positive change in biomedical outcomes.

Disappointment with conventional treatment or disappointment with a conventional practitioner were mentioned in only two studies (3.8%). The authors suggested that cancer patients who were being asked about their use of CAM in a clinical setting in which attitudes towards CAM were believed to be unfavourable, may have caused a biased response to this question (Jordan, & Delunas, 2001). The type of cancer and study design (including sample size and geographic region) did not appear to be related to the reasons for CAM use.

Women and younger individuals with cancer were found to be more likely to use CAM than were men and older individuals. This was found to be consistent with epidemiological findings which show that women tend to be higher users of health care, and are more afflicted with chronic illnesses than men (Giordano, Boatwright, Stapleton, & Huff, 2002). Also, younger patients, compared to older patients, were found to be more likely to perceive their cancer diagnosis as a threat to their future plans, and were therefore more likely to pursue health care support from CAM therapies in addition to Biomedicine (Gozum, Tezel, & Koc, 2003). This may be further evidence that cancer patients who use CAM modalities were wanting to survive, and were therefore seeking a positive change in biomedical outcomes. Higher income and more education appeared to be predictive of CAM use. This finding was expected as CAM use can be expensive, especially since it is often an out-of-pocket expense.

As mentioned earlier, patients with more education were viewed as likely to harbour more cynicism toward the conventional system and to be more aware of CAM treatments (Moschen, et al., 2001; Lengacher, et al., 2002). A relationship between ethnicity and CAM use was not found. This finding was interpreted as a failure to detect a relationship, due to the general under-representation of ethnic minorities in the studies (Mackenzie, Taylor, Bloom, Hufford, & Johnson, 2003).

An expressed limitation of this study was that the findings could not be generalised to the wider cancer population. Language barriers excluded potentially relevant studies, and paediatric studies were excluded. Another (important) limitation was that, as the focus was on a clinic-based population, cancer sufferers who used CAM therapies and rejected or abandoned conventional medical treatment were also not included. The researchers found that the definitions and categories of CAM were not consistent but varied greatly in the literature. The authors suggested that if a standard protocol such as the NCCAM categories were used consistently in the studies, comparisons would be more valid.

Future studies were expected to focus on providing packages of care, rather than on investigating isolated CAM therapies. The authors recommended that future CAM studies of cancer patients should also focus on designing treatment decision-making frameworks. These would provide insight into the cancer patients’ decision-making process, and assist in developing appropriate educational support services such as decision aids.

As the research participants had responded to structured questionnaires containing pre-conceived categories, the authors further recommended that participants be allowed to tell their stories in an unrestrained manner, and that qualitative exploration precede quantitative studies. This recommendation for qualitative studies is well-founded. Ethnographic evidence of what is ‘effective’ in alternative medicine includes such concepts as: transcendent, transformational experiences; changed lived experience; and the gaining of meaning (Barry, 2006). Questionnaires containing a variety of pre-conceived notions of which CAM modalities work and how they might work for cancer sufferers, do not provide the best means for accurately investigating such phenomena.

International researchers are presently exploring research strategies that are more inductive in their approach (Ffnnebf, Grimsgaard, Walach, et al., 2007). Researchers involved in several international initiatives have collected and systematically reviewed patient histories where cancer patients experienced an unexpected course in their disease process after using CAM treatments (Ffnnebf, et al., 2007). The US National Cancer Institute has concentrated on a series of what they designate as ‘best cases’, whilst the National Research Center in Complementary and Alternative Medicine in Norway have included both ‘best’ and ‘worst’ cases in their reviews (Ffnnebf, et al., 2007). The research groups involved in these initiatives envision that their efforts can better guide researchers in planning future studies.

In summary, the principal error on the part of biomedicine may be viewed as not one of focus, but one of exclusion (Zammit, 1999). The literature reviewed indicates that the biomedical community’s response to the perceived ‘challenge’ by CAM therapies may be more about retaining their dominant status rather than about ensuring public access to therapeutic treatments, which are ‘safe’ and ‘effective’. Biomedical dominance has, thus far, assured the biomedical community of continued Government funding and community support, also of having a greater say in which of the health professions and treatments are endorsed, and which are subordinated, limited, and excluded from endorsement (Long, Forsyth, Iedema, & Carroll, 2006).

It is possible to move the debate between biomedicine and CAM forward. Rather than each being ‘challenged’ by the other, such binary conceptions as inter- or intra-professional and expert/lay relationships can evolve in relation to each other (Broom, 2006). Each may see the potential legitimacy of utilising some features of the ‘other’, and thereby reinforce or bolster their own position; for example, utilising the Internet on the part of radiation oncologists; science in the case of CAM practitioners; holism on the part of medical oncologists (Broom, 2006), and lay expert knowledge in the case of professionals (Wilson, Kendall, & Brooks, 2007).

A review of the relevant literature points to the need for a far more reflective, self-critical appraisal of the current dominant paradigm (Zammit, 1999). The increase in the use of CAM therapies might suggest that the community is proactively seeking therapeutic help of a different nature than is currently available through Biomedical practice. The community’s interest in CAM products may indicate a need for a far greater emphasis placed on self-responsibility and preventative approaches towards illness. The demand for CAM modalities might suggest the necessity to include treatment strategies in health care which are more holistic, compassionate, and humane, and which may alleviate both physical and emotional suffering. This is an expressed concern in the case of those who are diagnosed with cancer (Evans, Shaw, Sharp, Thompson, Falk, Turton, & Thompson, 2007).

CAM therapies may provide the community with safe and effective therapeutic options when (the safety and effectiveness of) Biomedical treatments are perceived to be limited; and CAM modalities may alleviate physical and emotional suffering in situations where there are no medical cures. To do this successfully, CAM professionals also need to develop skills in critical self-reflection about their own practice and about their wider profession, so as to facilitate confident and informed advocacy (Humphries, 2006). In so doing, CAM modalities have a crucial role to play in health care.

Summary

The medical health care system and the complementary and alternative health systems have much to offer, yet these approaches to health care are limited in their responses to people with the diagnosis of widely metastasised cancer, those for whom cure is no longer the expected outcome. This chapter critiqued the dominant model of health care, biomedicine, and the complementary and alternative health systems, outlining their strengths and limitations. Even though both systems have much to offer, they can still be informed by people, who are living, or who have lived, the experience of illness and cancer, and who are facing, or have faced, imminent death. The literature shows the dearth of scholarly literature on personal experiences of cancer and dying, thus this RTA is timely and important. The next chapter describes the methodology, methods and processes that guided this research project in reflecting on my experience of cancer and dying.