While talking to patients it’s not uncommon for me to get the feeling that we’re each speaking in a different language. My colleagues also occasionally complain that they can’t seem to explain anything to their patients. They stubbornly stick to their own beliefs – not believing me, expressing doubts, asking uncomfortable questions and this interferes with the treatment process. Why does this happen and is there something that can be done?
Sickness and illnesses
Illness – these are indicators proven in a laboratory or by some other examination, specific complaints and symptoms that characterise a more or less precisely defined condition. Sickness – this is a feeling of not being healthy and anxiety about a potential health problem, as well as a fear of something even worse. Psychological, social and even economic factors can influence this feeling even more than the actual illness (one worries if they’ll be able to pay for it and if they’ll be able to afford what comes next). For example, a classic illness without this sickness is arterial hypertension (high blood pressure). It’s possible that a person has already had high blood pressure (which has been measured), but he doesn’t consider this a health problem. There are no specific complaints or symptoms. This is also quite common with the majority of oncological diseases, where the cancer has been growing somewhere inside, perhaps for years, but there is no palpable feeling of ill health. However, a prime example of sickness without illness is hypochondria, as well as carcinophobia, when a person truly feels ill and is concerned about it, but examinations fail to discover any specific disease.
It’s been observed that at least one third of patients who visit the doctor are anxious (what will the results show?) or upset (what if my illness has progressed?). When visiting an oncologist, the concern is even worse. Even when I have good news for my patients (the size of a tumour has shrunk, the test results have improved), I often notice doubt in their eyes, a kind of disbelief. However, by treating the illness and healing the sickness, we reduce anxiety and/or depression. In this way, a treatment that’s acceptable (satisfactory) to the patient isn’t possible without the added benefit of healing. We treat the illness – we operate, administer radiation, prescribe medication – yet verbal communication is the key to a patient’s satisfaction. After all, who are we trying to please with all of this effort? Are we doing this only to create detailed accounts of the process just to see how many people react positively to a specific therapy or how many months a patient has lived? Or is it to satisfy the desires and needs of our patients?
How illnesses are perceived by doctors
For doctors an illness is something that can be academically defined with specific initiators, nuances of development (pathogenesis), a foreseeable pace, reaction to therapy, prognosis and outcome. An illness is a process that can be assessed and controlled by observing symptoms and by taking samples and conducting examinations. When choosing a therapy plan and strategy, a doctor makes decisions based on the latest advances in medicine, the latest evidence-based findings and the recommendations of guidelines and not on the feelings or intuition of patients. Sometimes he doesn’t even follow his own experience! We often think of the patient as if he were a living machine – find the defect and fix it with the latest technologies! Even when talking to one another about a specific case we often unintentionally say – that young girl with the advanced stomach cancer, or that bartender with lung cancer, the oesophageal cancer in the fourth ward, etc. Once he’s entered the world of medicine, the first thing the patient loses is his identity. He automatically becomes a concrete case of an illness and is also immediately regarded, treated and analysed as such. Life has become very rushed, technologically nuanced and so obsessed with algorithms, that there’s no room for a melodramatic retreat. Although I was taught at university that a precisely documented anamnesis (a patient’s medical history) is already half of the diagnosis, today this eternal doctor’s tool – a conversation – is gradually being replaced by the latest technologies. This is especially true of oncology, where diagnostics have made such large strides, that it’s more or less possible to view or examine nearly everything. Who knows, perhaps in the future we’ll be able to clone people who never develop cancer and the oncology problem will be solved once and for all. However, we’re still a very long way away from that scenario.
Even though article 38 of the Latvian Medical law states that doctors are free to pursue their professional activities as they see fit and that every doctor has the right to give an opinion on the state of health and treatment of each of his patients, this theoretical freedom is often limited by a variety of local rules and a fear of legal action, which often dissuade doctors from, as they say, swimming against the current. Unfortunately, in oncology not every new technology (or new drug) that glitters is gold, but if communication is lacking between doctors and their patients and loved ones, then the outcome of the situation can often be very sad.
Doctors are often offended by a patient’s distrust of them, a search for second opinions or the concealing of significant information. For example, if a patient uses some other non-traditional method, which isn’t always compatible with conventional options. It’s sad when a patient has to become a mediator between doctors who don’t respect each other’s approaches to treatment. Then he suffers twice as much because he loses faith in both specialists. Latvia is a small nation and has only a finite number of oncologists. However, every person has not only the right, but the obligation to consult another doctor if his desire for information isn’t satisfied or if he hasn’t made a good connection with his doctor.
How illnesses are perceived by patients
For patients, on the other hand, the illness isn’t just a sign of chaos within their bodies, but also in their personal lives. Something has gone off the rails and that’ disturbing. A patient’s satisfaction with a prescribed therapy is rooted in his certainty that he is receiving the best and is being heard out and understood. Patients, for the most part, have faith in their doctors, but still wish to be included in the process, if only a minimally. Patients often feel undervalued as human beings if they are treated as just another medical problem to be solved.
I’ve noticed that there are some patients who show up to their appointments more or less prepared – they’ve understood the official written conclusions that have been presented to them. These can be a variety of official documents: a morphologist’s conclusion, a summary of a number of examinations, which may also include photographs and images, printouts of test results, etc. These patients, perhaps with the help of friends or relatives, have read articles about their illness in popular scientific magazines or even professional journals and have even organised them and other materials from a variety of sources in file folders. I enjoy talking to these people, because we have something to discuss – they have questions and I have answers. Even if they’re antennae, so to speak, are pointed in a direction where they more readily receive alternative information, there’s always a chance to talk, to explain and to convince. Less informed people require a completely different approach and level of discourse. But even they expect an explanation that they can understand: why, how, really and how long? Even these can become enjoyable conversations, because, over time, they better understand their illness and can, with more emotional detachment, accept the boundaries of modern medicine, while never giving up their right to inquire about all of the options still left to them.
While working in a number of summer patient support camps, I’ve noticed yet another phenomenon – there is no statute of limitations for an information vacuum. Patients can live for years and continue to worry about things that were never explained to them in the very beginning. Irrational (baseless) fears are the ones that hit people the hardest. I’ll talk about this in greater detail in the section – official conclusions about my illness or how not to lose everything in translation. In any event, I try to emphasize this at every appointment – ask your doctor questions and take advantage of these summer camps as a means of not only gaining information, but also for sharing your own personal experiences. There are usually many questions and much confusion…
It’s interesting that there is some kind of mutually accepted law that prevents either side from crossing a line. The patient thinks that surely the doctor has explained everything of importance. If he hasn’t understood everything, then it’s his own fault (the patient’s) and he feels uncomfortable asking the same question once again. On the other hand, the doctor thinks – if he’s not asking any questions then he must understand everything. Why should I bother him with any additional information? Sometimes this tension can play a terrible joke on the doctor, making him, in an attempt to show his erudition and expertise, share too much information. This can confuse the patient even more, as medical jargon can be unfamiliar and incomprehensible. However, patients more frequently complain that a doctor seems rushed, preoccupied, or even angry, if someone appears to ask too many questions. I often recommend that my patients take some time to consider everything at home and to write down any questions they might have on a piece of paper. At the next appointment an A4 sheet of paper is often completely covered, but once I’ve answered question number 4 then questions number 12, 18 and 26 are crossed out, because they’ve already received the answer. This game of question and answer can focus the content of the appointment and provide obvious peace of mind to the patient. Give it a try!