During the last few months we have been living in unprecedented times, experiencing a global health crisis. We are constantly bombarded by not only medical facts, but also by uncertainties, fake news and controversies on a daily basis. One of the controversies is how and when, and even whether to test for COVID-19. So it made me think whether there are reasons or conditions why a diagnosis should not be pursued.
Doctors spend most of their training learning about illnesses and how to diagnose them. Depending on the classification system, there are currently between 14 000 and 100 000 diseases. But it is not only doctors who diagnose; people often diagnose themselves (and others) with the help of “Dr Google”. We have all used Google to do this. If you decide to tell your doctor that you have Googled your symptoms, be tactful as some doctors find the misinformation spread on the internet irritating. Despite this, I feel that whatever information a patient brings to the table can and should be part of the diagnostic process.
The diagnosis of a mental disorder such as borderline personality disorder (BPD) remains controversial. Regardless of what psychiatrists and psychologists are being taught during their studies, it is my observation that most patients, even those with “obvious” BPD, have mostly not been informed of their diagnosis by their psychiatrists or psychologists. BPD is a stigmatised disorder, but making the correct diagnosis and psycho-educating the patient is instrumental in leading to improved patient care and usually brings relief to the patient.
All illnesses are combinations of signs and symptoms that have developed in a particular way, sometimes confirmed by special investigations using methods such as laboratory tests, scans or sonars. The most widely used diagnostic system is the ICD-10. The International Statistical Classification of Diseases and Related Health Problems (shortened as “ICD”) is a medical classification list developed by the World Health Organization (WHO), and the ICD-10 is its 10th revision. (1)
Some illnesses and conditions are difficult to diagnose for several reasons:
- There is no specific test, e.g. for irritable bowel syndrome (IBS), and neither for all psychiatric disorders
- The symptoms don’t seem to be medically explainable, e.g. fibromyalgia
- The initial symptoms can be indicative of many different illnesses, e.g. as for rheumatoid arthritis
- The symptoms come and go, e.g. as with epilepsy and multiple sclerosis
- Not everyone shows the typical signs, e.g. polycystic ovary syndrome (POS)
- The illness is very expensive or technically difficult to diagnose, e.g. some genetic tests for cancer
- The illness is extremely rare, e.g. some genetic illnesses
- There are ethical complications/implications when the diagnosis is confirmed, e.g. Huntington’s chorea
I want to defend the argument that it is necessary to try and make an accurate diagnosis as quickly as possible, for all illnesses and all patients, including those with mental health disorders. That said, we always need to keep common sense in mind and that the quest for a diagnosis should not cause more suffering than the actual symptoms.
If no specific diagnosis can be made it is also important to get to the “bottom of the problem” in order to “manage” the patient effectively in some situations:
- Somatoform disorders. These include hypochondriacs – patients with numerous, wide-spread symptoms which do not fit with any known illness. Such patients often have underlying psychological problems. It is important to manage these patients correctly so that they are not over medicated or undergo too many tests.
- Malingering. Patients sometimes fake illness to be medically boarded or to try and escape a criminal investigation.
- Factitious disorder. Munchausen syndrome is one example where patients fake illness to gain medical intervention. These patients pose many risks, including to the doctors who are unsuccessful in getting them better, and therefore they must be identified. Munchausen’s by proxy is a serious condition where someone, usually a child, is continuously brought for medical intervention by someone else (often their parent) fabricating the illness. This is a criminal offense.
- Prescription medication abuse. Often patients visits doctors frequently, complaining of pain, anxiety or insomnia but the actual problem is addiction to prescription medication.
- Patients with no clear medical or psychiatric disorder but who feel lonely or want attention. This may sound peculiar but most doctors (especially general practitioners) have many of these patients.
First let’s look at some cases why it might be argued that a diagnosis is not important or even advisable.
- Stigma. Stigma is described as “a mark of disgrace associated with a particular circumstance, quality or person”. (2) I usually explain stigma to my patients by stating that stigma causes people to give an opinion about something they don’t have knowledge about, e.g. antidepressants. Nobody wants a stigmatised illness such as AIDS because of contracting HIV, or depression since society’s opinions will surely make your life more difficult.
- Diagnosis might be difficult or expensive. I could not find a good example of an illness that is so expensive or difficult to diagnose that doctors will not attempt to try. Doctors are ethically obliged to diagnose their patients as accurately as possible, so these type of obstacles are not a valid excuse.
- The belief that the “shock” of the diagnosis will make the patient lose hope and they will “stop fighting” or that it may even cause their death. We want to protect our loved ones, but luckily the human spirit is quite resilient. (3) Very ill people often instinctively know they are dying, and not telling them could deny a terminally ill person from the opportunity of finishing their lives as they wanted.
- There is no cure anyway. This is one of the arguments against widespread testing for COVID-19, but this is not a good argument since there are other reasons why the right diagnosis is important.
Fear is often the actual reason why people defer getting an accurate diagnosis. Nobody wants a chronic illness, and to be diagnosed with cancer or Alzheimer’s can seem like a death sentence. But like all “bad” things, we should face and accept the medical and physical diagnoses that come our way. Bearing in mind that if you do not agree with a diagnosis, getting a second opinion is everybody’s right.
This brings us to why diagnosis is important.
- Diagnosis points to treatment options and planning the patient’s treatment. If the diagnosis is incorrect it dramatically decreases your chances of getting better.
- It hints at prognosis. Will this illness get better? If so, how long will it take? If it is an illness that is likely to progressively worsen we can make certain suggestions, e.g. that the patient should consider medical incapacity.
- It facilitates the standardisation of treatments. Guidelines exist to treat patients with the same diagnosis, e.g. first episode psychosis.
- It helps predict trends. The more detailed the diagnoses are, the better the quality of data collection, and the better “patterns” can be described, e.g. certain illnesses occur more in certain age groups, ethnic groups, or when people are exposed to certain chemicals. This in turn leads to better treatment options and preventative protocols.
- The treating team has all the information. This is very important, e.g. for breast cancer, where the oncologist and surgeon needs to be exactly on the same page.
- It fosters consumer protection. This basically means that patients are entitled to certain treatments when they have certain diagnoses.
- It protects and benefits others. An example is that your sexual partner has the right to know if you have a sexually transmitted disease.
- Diagnosis guides the writing of protocols. All hospitals, emergency rooms and clinics have protocols of what to do with certain cases, e.g. in the case of an acute stroke, how to transfer the patient immediately for the right treatment.
- It builds the doctor-patient relationship. Although most patients find it difficult to be evaluated thoroughly, it will build your relationship with your doctor if your doctor knows everything they need to know. Almost like confessing to a priest, it is liberating.
- It gets funding. Medical aids are bound by law to reimburse prescribed minimum benefit (PMB) conditions.
- Patients want to know, and have the right to know, what’s the matter with them and this knowledge lessens psychological suffering in the long run. We usually suspect when something is wrong, and being able to give it a name gives peace of mind.
We are, however, more than a label or a diagnosis. As Kierkegaard said: “If you name me, you negate me. By giving me a name, a label, you negate all the other things I could possibly be.” However, diagnosis is the first imperative step on the road to healing. Uncertainty largely leads to fear. When we know what we have to deal with, we can usually deal with anything. We can look for treatment and start a process of healing which often implies much more than just resorting to medical intervention.
In the end, we become whole, meaning we incorporate all aspects of our being. Even a diseased body or mind should be integrated. Nothing is left out or split off, and all our parts (body, mind, soul, previous experiences, people we interacted with, etc.) come together to help us move forward to healing.
So, don’t be scared of a diagnosis – it is the first step to becoming well again.
Dr Melane Van Zyl
Sources:
- ICD 10 https://en.wikipedia.org/wiki/ICD-10
- Oxford Dictionary https://www.lexico.com/definition/stigma
- Do I have to tell my loved one he is dying? https://www.verywellhealth.com/my-loved-one-is-dying-do-i-have-to-tell-him-1132508s