ARGUMENTS IN FAVOUR OF MISTLETOE IN THE TREATMENT OF CANCER PATIENTS
Gerd A. Nagel
The following arguments are the result of a long scientific debate about mistletoe within our cancer center, mistletoe being the most widely accepted complementary medicinal product in Germany and Switzerland. In our opinion, the present state of knowledge on its efficacy does not of itself justify the use of mistletoe in the therapy of cancer. We are, however, in favour of mistletoe, a position which is not justified on strictly medical grounds, but on the patient’s perception of complementary medicine.
Let us first declare an ethical credo. Patients have the fundamental right to their personal view about their disease. In a cancer patient, such a view can lead him or her wish to make use of complementary medicine. The physician must take such a view and such a wish into account—while carefully avoiding any harm to the patient.
In 1985, about 15% of physicians in Germany and in Switzerland had a tolerant attitude towards the use of mistletoe. By 2002 this percentage had risen to 65%. There are two reasons for this increase. In the first place, more data has become available on mistletoe’s ability to improve the patient’s quality of life and tolerance of chemotherapy. Second, there are more and more patients who are able and willing (‘competent’) to participate in the physician’s decisions.
Such ‘competent’ patients want to take an active part in the management of their cancer. They have unlimited confidence in the body’s potential for self- healing. To them, mistletoe is a means of reinforcing their defenses, this last term being taken in both its immunological and psychological sense. They do not want to be the helpless victims of a merciless fate. In the hands of these patients, mistletoe is something like a personal weapon in the fight against the existential crisis created by cancer. The competent patient does not care whether or how mistletoe works, the only thing that matters is that it does work. And whether it helps him or her, only he or she can decide.
The increasing acceptance of mistletoe is also due to a changing paradigm of cancer therapy. The scientific paradigm of cancer therapy is that curing cancer implies removing the tumor up to the last diseased cell. The natural paradigm, on the other hand, is that the cure of cancer depends not only on an effective antitumoral treatment but also on the patient. Nowadays, this view is shared in Germany and in Switzerland by nearly 100% of patients, laypersons, and pharmacists, 92% of practising physicians, and 55% of conventionally schooled oncologists. These oncologists are more and more often beset by doubts on reading recent publications that postulate a relationship between the behavioral patterns of patients and the prognosis of their disease.
Even though some of these publications are of questionable reliability, they cannot be ignored in view of the change of paradigm mentioned above and the increasing ‘competence’ of patients. Besides, every patient has the fundamental right to be treated in accordance with his or her subjective views on disease and health, as already mentioned. It is very likely that these views and the complementary use of mistletoe on the patient’s own initiative make a positive contribution to the victory over cancer and the prognosis of the disease.
At any rate, it is decisive for our argument that patients firmly believe in the model of personal defenses and are remarkably able to integrate mistletoe in their defense strategy. In our opinion, remaining obstinately unreceptive to the wish of patients to receive complementary medicine has become obsolete. Such a position can harm the relationship between physician and patient and prompt the latter to consult a quack instead. Nowadays, the professionally and socially competent physician is required to respect the views and attitudes of his patients with respect to complementary medicine and to harmonize them with his own.
This is also possible in a university institution in the setting of precise rules, as we have shown. There follow some of these rules. The initiative for using complementary medicine is left to the patient, but the physician must show understanding. Whenever there is a choice between several preparations, we recommend that which has the best documentation relative to quality, efficacy, and safety—Iscador in the case of mistletoe. Patients participating in phase I and II trials should not be given any complementary medicine. In immunogenic and hematologic malignancies, we are cautious because of an inherent enhancement potential. Such rules are very readily accepted by competent patients and reinforce the mutual confidence between the patient and the physician.
Author: Prof Gerd Nagel, MD, e-mail: firstname.lastname@example.org
Scientific director (now retired), Klinik für Tumorbiologie, University of Freiburg
Founder of Stiftung Patientenkompetenz, www.stiftung-patientenkompetenz.org
FEAR IN CANCER PATIENTS
Excerpt from an article by the late Professor Dr. Christa Cerni, Cancer Research Institute, University of Vienna
A famous Viennese psychiatrist, Prof. Erwin Ringel, once described very accurately the fear of someone who has been operated on for cancer: ‘For the person who has had cancer, it is like being shut in a pitch dark room with a murderer. He or she doesn’t know which corner the murderer is sitting in, whether or when he will strike again, even if he’s actually still there, or has just slunk noiselessly away. A person who has had cancer is always on guard, and the slightest sound, the merest movement of air, the tiniest suspicion of movement in this pitch dark room brings on the fear.’
The scientific study that I want to tell you about appeared in the internationally renowned British Journal of Cancer and the article is called ‘Anxiety in cancer patients’, published in autumn 2000, Band 83, No. 10, pp 1261-1267. The authors are D. Stark and A. House, and they work at the University Hospital in Leeds, England. I found in this work a whole series of things that I thought worth commenting on. And I think it is a cause of great rejoicing that finally such elementary topics, which affect every cancer patient, are now finding their way into the medical literature.
The article sets out first to define a few basic terms. What is fear? How does it manifest itself? Fear is an intrusive interruption in life, which massively reduces the quality of that life. Amongst the British population, for example, an average of between 3% and 16% of people admit to having fears of some kind or another, depending on the definition. This percentage is considerably higher in cancer patients than in people suffering from other (e.g. chronic) illnesses.
Cancer is frightening: this is something that readers of this Bulletin know better than most. In psychological tests on healthy people, when a fear-inducing word is sought in order to test physical and psychological reactions, the word ‘cancer’ is top of the list.
Fear has many signs and symptoms. Among these are hyper-activity, tapping or drumming with fingers or feet, sweating, restlessness, nervousness, poor concentration, muscle cramps, tiredness, loss of appetite, dizziness and many more. Fear is a natural reaction to a threat – to any kind of threat, and above all when the threat is to one’s own person. For this reason, all patients experience fear in a hospital situation, whatever the illness.
In order to banish this fear, or at least to reduce it, the person in question needs one thing urgently: information. The patient needs to be informed about what is happening to him/her, and what the medical treatment will entail. Of course this information must be expressed in terms that the person in question can understand, but cancer patients want above all to know more about their illness. In some cases it may even be necessary to push forward a little uninvited ‘cancer research’, since patients who ask too few questions can be in danger of imagining something far worse than is actually the case. Information about the illness, the proposed therapy and the expected effects, including side-effects, is therefore likely to reduce fear.
All kinds of carefully worded questionnaires have established that, for example, the fear felt before an operation is completely separate from the fear of the diagnosis. Thus people with benign tumours have the same fears and the same degree of fear of the operation as people who go into an operation knowing they have cancer. These fears of the operation disappear, however, very shortly afterwards – they are not related to the illness, but to the surgery itself. The cancer patient, on the other hand, has a double burden before the operation: he/she is afraid of the surgery (a fear which soon disappears) AND of the cancer (a fear which will linger much longer).
But did you know that the kind of powerful, fundamental fear that one experiences after a serious diagnosis lasts for only 7-10 days? When a woman or a man hears the dread words from a doctor, ‘You have cancer’, it’s a stomach-clutching fear and for the next 7-10 days it totally takes over. During this time the person in question seems no longer to be made of flesh and blood, but only of fear. But even in the case of a cancer diagnosis, this fear lessens somewhat in the course of the next 2 weeks, and makes room for some defensive strategies. Following onto the first fundamental fears about survival comes a very personal mixture of feelings of bewilderment, helplessness, anger, rage, sadness, denial, the question: ‘why me?, doubts about whether the whole thing is a nightmare from which one will suddenly wake up.
At some stage a couple of tiny rays of hope start to shine in the gloom, and slowly the soul rouses itself to fight back. The fear of cancer should generally be significantly reduced about three weeks after diagnosis. If the fear is just as acute after three weeks, the chances are that it will remain so for at least 6 months, tyrannising the patient and his/her family. Although in general, fear diminishes steadily over the year following diagnosis, it never entirely goes away, and it will never again reach the same low levels present in the normal, average population. Life does not go on as before. Perhaps you are asking if there are different levels of fear between older and younger women. No, there is no difference. Fear does not distinguish between older and younger people and is just as painful whatever the age.
The different treatments following diagnosis also – understandably – provoke fear. Amazingly, the inevitable side effects of chemotherapy seem to be quite separate from the fear felt by the patient. On the other hand, many women are more fearful after radiation than before it, because now they feel less protected. And if no treatment is prescribed after the operation, the fear can become under some circumstances completely unbearable, because this non-treatment can be interpreted as absolute hopelessness in the particular case of the patient.
All of this constitutes ‘normal’ fear for people with cancer. Then there are some ‘abnormal’ fearful reactions, which are especially prevalent in cancer patients. Because of the overwhelming characteristics of this kind of pathological fear, the WHO has broken down the symptoms into several categories.
Principal among these are the different pathological fear-indicators that are deemed ‘inappropriate’. In these cases objective reality clashes with subjective perceptions. Of course it is difficult – as always in matters of the mind – to be rigid about definitions. Who can measure or make judgements about whether the fears of a patient in the face of his/her illness are ‘appropriate’ or ‘inappropriate’?
Equally difficult and elusive is the difference between ‘normal’ and ‘abnormal’ fear. But when repeated panic attacks occur months after a successful operation, compulsive thoughts, thoughts about sudden death, deep depression and/or serious physical symptoms, then there is no doubt about fear. All too often this is incorrectly interpreted by the doctor, who sees a fearful person before him, afraid of a recurrence of the illness. And so he reassures the patient in all honesty and conviction that all is well, thinking that in this way the patient’s mind will be set at rest.
What actually happens is that this kind of reassurance only serves to increase the fear. A few days later, back it comes in full flight, and the poor person goes in search of another doctor. What is needed in such situations is to ask what is the underlying cause of the fear, and possibly to prescribe a course of medical treatment. Often a long-standing fear like this involves the whole family, and is a huge burden on them all.
While everything that I have written about cancer and fear is hugely dependent on our individual character and make-up, and also depends on the coping strategies that we put in place, there is one considerable fear factor that lies outside our sphere of influence: this is the direct connection between fear and lack of communication between the patient and the medical staff. The authors of the study quoted above observe that this aspect has merited far too little attention, and they give the following suggestions for improving on the situation:
- It is helpful to clarify with the patient whatever is uppermost in his/her (not the doctor’s) mind
- Information helps banish fear, because fear is often due to incorrect information
- Consultation with a fearful patient is often difficult. A simple confirmation of his/her hopes that all will be well is not helpful, or only in the short term. On the contrary, it foments fear. Attention needs to be paid to the patients’ fears, not only to his/her external symptoms.
(translated by Sue Style from Leben wie zuvor bulletin, June 2003)