How can we help our patients make sensible decisions?
In this increasingly internet-connected world, vulnerable and desperate patients with life-threatening illnesses such as cancer are often advised or motivated to negotiate their way through a seemingly expanding maze of “dietary cures”.1 As an example, a woman claimed to have cured herself of thyroid cancer by eating pineapples.2
Many negotiate their way through and make sensible choices, but my oncology colleagues and I continue to see patients who choose extreme dietary and alternative treatments for potentially curable cancers and don’t turn to us until they are quite ill and their cancer has spread and become incurable. To see patients with early disease, who would have an excellent prognosis if standard treatment protocols were followed, return with advanced disease after eschewing this standard treatment for dietary cures is extremely distressing for the patients, their loved ones and their treating doctors.
Why is this occurring and how can we as physicians and health professionals help our patients navigate this maze and make sensible decisions?
Problem: Patients with cancer are often terrified and feel out of control
Strategy: Form a trusting, empathic and therapeutic relationship with the patient
We must acknowledge and validate the patient’s values and feelings.3 We must guide and advise, but we must also empower patients in their treatment choices. This will encourage open dialogue with the patient about any alternative treatments that they may be considering using as ancillaries or replacements for standard treatments. This will also acknowledge that patients base their treatment refusals mainly on personal values and/or experience. In contrast, physicians mainly emphasise the medical perspective when evaluating patients’ treatment refusals. Our ability to accept and understand the patients’ values-orientated perspective and form a consensus with them will help them to feel understood and respected, and thus help form a better physician–patient relationship.4
Problem: Distrust of hard science combined with sophisticated online marketing and celebrity testimonials
Strategy: Education and careful explanation of the goals, benefits and adverse effects of treatments
When I started practising oncology in the early 1980s, it was a new speciality and there were far fewer effective treatments than there are now. Surgery, radiotherapy and chemotherapy were less sophisticated and far more debilitating, and many patients suffered toxicities without deriving benefits. Some patients at that time became naturally curious about individuals claiming to have had advanced cancer and to have cured themselves with diet and meditation.5,6 The dissemination of these natural cures relied on books in the self-help sections of bookshops. As more and more patients use online search engines to research their disease, their treatment options and their health generally, they find themselves being constantly beckoned, assailed and seduced by a rapidly rising number of sites, celebrities and personalities providing glowing testimonials about extraordinary new dietary “breakthroughs” that will cure their cancer (and their arthritis or multiple sclerosis), and make them more youthful, virile and joyful. More of these claims appear to be coming from individuals with implausible claims of advanced cancer and “self cure”. Some of these claims are wrapped in a cloak of pseudoscientific tests and research to give them greater credibility.7
In our current era, in which a distrust of hard scientific data appears to be finding greater voice on the many available online platforms and discussion sites, some of the practitioners and spruikers of these claims also invoke conspiracy theories that doctors don’t want patients to know about these simple, non-toxic (but often expensive) treatments because it will either reduce our role or the incomes of doctors and the pharmaceutical companies that we are “in collusion with”. We should endeavour to base our treatment recommendations on robust evidence-based medicine, to collaborate in multidisciplinary teams and to emphasise that there have been dramatic recent advances in cancer treatments, including organ-preserving treatments for many cancers such as cancers of the breast, rectum, oesophagus, larynx and bladder. Surgery can now cure many patients with colon or lung metastases from bowel cancer, and targeted radiation is now dramatically more effective for many cancers and far less toxic. The benefits and adverse effects of chemotherapy have become far better understood, and treatment choices and doses are far better tailored to the goals of therapy. Well tolerated and effective targeted therapies are replacing many chemotherapy treatments for advanced cancers. We now understand better that many cancers, such as low-grade non-Hodgkin’s lymphoma, chronic lymphocytic lymphoma and early-stage prostate cancer, often behave very indolently and require no treatment.
Problem: Alternative treatments are regarded as simple, natural and non-toxic
Strategy: Carefully warn the patient that there is no credible evidence that any patient with cancer has been cured by diet or a combination of alternative treatments
The reverse of this is true — recent studies have shown that high-dose vitamin therapy can worsen the prognosis of some cancers. This is not surprising as vitamins are growth factors and are required for the integrity of cell growth and division.7,8 They may also partly repair otherwise lethal DNA damage, allowing some aberrant cells to survive and proliferate. Also, these treatments can be time-consuming and can reduce quality of life.9
I also suggest that interested patients review their local Cancer Council website and read the article about cancer myths on the Cancer Research UK website.10
Problem: The claims of cures by diet are either of patients whose clinical course is within the expected natural history of the disease or are deliberately false
Strategy: Carefully explain that you and your colleagues have never observed cures by diet
I emphasise that my colleagues and I have carefully observed many patients pursue various purely dietary treatments over the past 30 years and are yet to see one whose progress has been outside the expected natural history of their particular cancer.
Problem: Some patients are reluctant to return to us after unsuccessfully pursuing alternative treatment, as they already feel ill enough without us adding any encouragement of feelings of guilt
Strategy: Try to avoid all guilt and blame
I regard guilt and blame in cancer patients as negative emotions, and try always to look ahead and to treat the patient with the compassion, care and skill that they require.
Problem: Some patients are given incorrect and overly pessimistic prognoses and feel they are being drained of all hope and/or denied the possibility of setting realistic life goals
Strategy: Emphasise the frequent difficulty of providing a very accurate prognosis
I try to answer the patient’s and family’s questions as honestly, sensitively and fully as possible, but advise them that making a prognosis, even for oncologists with 30 years of experience, is very difficult. I tell them that I am giving them a realistic range of possible prognoses based on my experience and all the available evidence about their particular circumstance and type of cancer. I try to provide the necessary time and detailed information that the patient seeks to enable them and their family to set realistic goals and plan their lives appropriately. This goal setting often entails making the necessary arrangements for their work, travel, family and financial affairs. Very often, a calm and trusting acceptance can be created by carefully and regularly assessing, reassessing and communicating any genuine possibility of cure, of a period of remission or of improvement of a symptom based on the patient’s current and sometimes constantly changing situation. This reassurance and calm that can develop from such an ongoing and open conversation between the patient, the family, the oncologist and the treating team is a vital part of maintaining the patient’s quality of life, as well as the psychological health of both the patient and their family members.
Problem: Some patients benefit from an opportunity to debrief and unpackage their thoughts and beliefs with a skilled third person
Strategy: Encourage a consultation with a skilled psycho-oncologist, psychologist or other skilled counsellor
I have been fortunate throughout my career to have worked with highly skilled psycho-oncologists, psychologists, social workers and other counsellors. They are integral to the creation of a trusting, therapeutic relationship between the patient and the health care team. Their assistance should be offered and encouraged for all patients who are searching or struggling emotionally, as should the early assistance of a specialist palliative care team for patients with advanced, incurable disease.
Provenance: Commissioned; externally peer reviewed.
- Ian E Haines
- Cabrini Health, Melbourne, VIC
No relevant disclosures.
- 1. Bowden T. Cancer specialist warns of potentially fatal dangers of ‘miracle cure’ fad diets. http://www.abc.net.au/news/2015-03-30/cancer-expert-warns-of-danger-behind-online-fad-diets/6360232 (accessed May 2015).
- 2. Robin J. A young woman claims to have found a “cure” for cancer. It’s pineapples, apparently. http://www.mamamia.com.au/wellbeing/woman-cures-cancer-eating-pineapples (accessed May 2015).
- 3. Hall T. More than the sum of our parts. Med J Aust 2012; 197: 522-523. <MJA full text>
- 4. van Kleffens T, van Leeuwen E. Physicians’ evaluations of patients’ decisions to refuse oncological treatment. J Med Ethics 2005; 31: 131-136.
- 5. Haines IE, Lowenthal RM. Hypothesis. The importance of a histological diagnosis when diagnosing and treating advanced cancer. Famous patient recovery may not have been from metastatic disease. Intern Med J 2012; 42: 212-216.
- 6. Haines IE, Lowenthal RM. Reply (to Dr Ian Gawler) [letter]. Intern Med J 2012; 42: 474-475.
- 7. Friends of Science in Medicine. Controversies about CAMs. http://www.scienceinmedicine.org.au/index.php?option=com_content&view=article&id=153&Itemid=145 (accessed May 2015).
- 8. Lowenthal R. A helping hand? Vitamins may be dangerous for cancer patients. The Conversation 2011; 9 Jun. http://theconversation.com/a-helping-hand-vitamins-may-be-dangerous-for-cancer-patients-907 (accessed May 2015).
- 9. Hall T. Healed, or hungry? A personal perspective on the Gawler program. Med J Aust 2012; 197: 598-599. <MJA full text>
- 10. Childs O. Don’t believe the hype — 10 persistent cancer myths debunked. http://scienceblog.cancerresearchuk.org/2014/03/24/dont-believe-the-hype-10-persistent-cancer-myths-debunked (accessed May 2015).
Sue Ieraci
Competing Interests: Executive member of Friends of Science in Medicine
Dr Sue Ieraci
NSW Public Hospitals
Pip Cornall
Clearly, delaying or refusing medical treatments, while experimenting with the ‘cancer diets’ you mention, will change their prognosis to poor.
Our personal experience is mirrored by our oncology colleagues across Australia. We also collectively noted that patients from certain geographical locations, where belief in alternative treatments is strong, will predictably delay or refuse medical treatments for their cancer.
We believe the deaths from these causes is in the thousands, far in excess of our national road toll.If just 10% of the annual cancer deaths in Australia (43,000 in 2012) (1) were related to the above causes, this is 4,300 deaths. The 12 month road toll in the period ending July 2014 was 1,176 deaths. (2)
Many of our colleagues agree with us that 10% may be a conservative figure. If we are correct, the annual (2102) cancer deaths figure of 43,000 may fall under 40,000 which would also favourably impact the survival percentage of 66% making our survival figures improve somewhat.
One problem in addressing this unnecessary loss of life is the lack of real data. However, even if the evidence is anecdotal, acting on the precautionary principle, we should be taking action.While modern conventional treatments are saving more lives than ever, the public perception is otherwise. Our medical system is losing the media battle and therefore the hearts and minds of the general public. We need to work together to reverse this unhealthy trend.
1. http://www.cancer.org.au/about-cancer/what-is-cancer/facts-and-figures.html
2. 1153 people died on Australian roads in 2014; https://bitre.gov.au/statistics/safety/fatal_road_crash_database.aspx
Competing Interests: No relevant disclosures
Mr Pip Cornall
The Grace Gawler Institute