Removing diagnoses, removing stigma
- M. Lea and B. Hofmann
- Jun 1
- 9 min read
Updated: Jun 12
More people are diagnosed with ever more diagnoses. While often for the best, the diagnostic inflation has some severe drawbacks: diagnoses can come to harm people more than helping them, and they can be stigmatizing. When the burden of a diagnosis is larger than its benefits dediagnosing, that is the removal of diagnoses that do not contribute to reducing the personʼs suffering, should be considered. Dediagnosing comes together with other measures against overuse, such as deprescribing, deimplementation, and the Choosing Wisely Initiative.
Marianne Lea
Cand.pharm, PhD, works at the intersection of academic research and clinical practice. She is an Associate Professor of Clinical pharmacy at the Department of Pharmacy, University of Oslo. She also works as a clinical pharmacist and serves as a Coordinator for research at Oslo Hospital Pharmacy, Hospital Pharmacies Enterprise South-Eastern Norway. Her current research focuses on the interplay between diagnoses and medicines, and the optimization of healthcare services.
Bjørn Hofmann
Norwegian professor in philosophy of medicine and bioethics with special interest for the relationship between epistemology and ethics. He is affiliated with and the Centre for Medical Ethics at the University of Oslo in Norway where he is also head of research and with the Department of Health Science at the Norwegian University of Science and Technology (NTNU) at Gjøvik.
As Suzanne O’Sullivan points out in her book “The Age of Diagnosis. Sickness, health, and why medicine has gone too far”, we live in the age of diagnoses (1). The number of diagnostic codes have increased vastly (2) as has the demand for diagnoses in the general population. This is not (only) because the population has become more diseased, or due to demographic shifts. It is much more because of the role diagnoses play in (post)modern western societies. Diagnoses are value-active: they can give rights to medical attention, access to healthcare services, right to economic compensation, and exemption from duties, such as work (sick leave) as well as defining sanity and criminal liability. Moreover, diagnoses often give explanations to oneself and others of difficult situations and lack of performance or achievements (3).
However, diagnoses can also be stigmatizing. A range of diagnoses have been documented to be stigmatizing, such as chronic fatigue syndrome (4), addiction (5), depression (6), borderline personality disorder (7), ADHD (8), and schizophrenia (9). In general, stigma has extensively been studied in psychiatry (10-15) and it has been documented how clinical diagnosis can exacerbate stigma in mental illness (16).
Why is there an inflation in diagnoses when several of them are stigmatizing? This apparent paradox has several drivers. First, the need for diagnoses to get access to care trumps potential stigma. Second, health professionals are trained and expected to diagnose. To the man with a hammer, everything is a nail. Third, people are not aware of the stigma when seeking diagnoses. Children being diagnosed with ADHD due to parents’ requests are not aware of potential future consequences. Fourth, social status and stigma of diagnoses change over time.
Despite being well acknowledged and researched (17), it is challenging to remove the stigma of specific diagnoses. Since individual people experience the burden of stigma in their everyday life, healthcare professionals should be aware of this and take this into account when setting and removing diagnoses. Diagnosing should not be avoided in severely ill patients with clear schizophrenia because of stigma, but stigma should be considered when parents demand an ADHD diagnosis for their child while the child appears happy and well-functioning.
Correspondingly, when the benefits of a diagnosis are outweighed by its burden, it is imperative to consider removing diagnoses, so-called dediagnosing (18). Also, in situations where a person fulfils the diagnostic criteria, but does not need the diagnosis for access to treatment, care or other rights, dediagnosing could be considered. While stigma is a social phenomenon that should be addressed at a social level, dediagnosing is an individual measure to reduce stigma and stigma-related suffering. In this way, measures at both the societal and individual level can be useful together in working toward the shared goal of reducing diagnosis-related stigma.
Dediagnosing – a framework for making people less ill
Dediagnosing has been proposed as a framework for removing diagnoses that do not contribute to making people less ill (18). The framework comprises a two-step procedure. Step 1 constitutes a verification of the diagnosis. The patient’s healthcare record might contain relevant information, but it is not always possible to find out what formed the basis for the diagnosis, especially due to lacking or low-quality information transfer between healthcare levels. If the origin of the diagnosis can be verified, one should then re-evaluate whether the diagnosis is still relevant, since both the patient’s condition and diagnostic criteria may change over time. Here, the patient’s current clinical condition, relevant tests and examinations, and current guidelines should be reviewed. Diagnoses that are not (or no longer) relevant can be removed.
Step 2 of the dediagnosing procedure includes assessing the patient’s preferences, considering the consequences of each individual diagnosis. Consequences of a diagnosis could be access to treatment, care and social rights, but also worries, stigmatization, and discrimination. The purpose is to assess whether the diagnosis contributes to making the person less ill. Prognostic information (life expectancy) and the total burden of diagnoses/disease may also be included in these assessments. Since diagnoses can have major consequences for the individual and may be closely related to identity, it is crucial that dediagnosing is conducted in close collaboration with the patient, through shared decision making. Box 1 shows the entire dediagnosing procedure.
Box 1. The two-step dediagnosing procedure. Adapted from (18).
Step 1 Re-evaluate each diagnosis on the basis of current:
Dediagnose each diagnosis that is not valid or relevant (anymore). Step 2 For each diagnosis, taking other diagnoses into consideration, assess:
Conduct an overall assessment of whether the individual is better off without the diagnosis. If the diagnosis does not contribute to reducing the person's suffering, dediagnose, through shared decision making. |
The framework has been proposed to be used broadly, both in psychiatric and somatic contexts, by specialists as well as generalists, emphasizing the need for a heavy counterbalance to healthcare overuse in general.
Dediagnosing in psychiatric contexts
Examples of diagnoses where dediagnosing could be relevant within psychiatry are shown in Table 1. Perhaps especially in psychiatry, one challenge might be patients who lack insight into their own health situation. One can argue that patient involvement and shared decision making related to diagnostics therefore are not suitable in all situations and for all persons. For example, if a diagnosis implies that others must be protected against harm from the person, dediagnosing may be wrong even if it would reduce the suffering (and stigma) of the person. Nevertheless, we will encourage healthcare professionals to consider both harms and benefits of all diagnoses for persons, even in settings where a person fulfils the diagnostic criteria.
Table 1. Examples of psychiatric diagnoses where dediagnosing could be relevant. ADHD – Attention-Deficit/Hyperactivity Disorder.
Diagnosis | Examples |
ADHD | A person diagnosed with ADHD in her childhood and: scenario 1) As a young adult she does not fulfil the diagnostic criteria. scenario 2) As a young adult she does fulfil the diagnostic criteria, but the diagnosis stigmatizes, and she does not need the diagnosis for treatment or rights. |
Autism | A person diagnosed with autism that do not need the diagnosis for any benefits, the diagnosis only stigmatizes. |
Borderline personality disorder | A person previously diagnosed with borderline personality disorder who has gained lasting emotional stability after treatment (psychotherapy). |
Depression | A person diagnosed with depression and receiving an antidepressant for 6 months. After the antidepressant is deprescribed the person shows no symptoms of depression anymore. |
Schizophrenia | A person diagnosed with schizophrenia after an acute admission 20 years ago where medications have been deprescribed and the person shows no symptoms of schizophrenia. |
Time-constraints could obviously be an argument against dediagnosing. How could healthcare professionals spend their valuable time on people that potentially do not have a diagnosis? We acknowledge this concern. However, recently, “dediagnosing-clinics" for ADHD and autism in Sweden have been introduced as part of a research effort to identify for whom and how such services may be useful (19, 20). Through a traditional assessment of diagnostic criteria, a large proportion of the patients left the clinic with assurance that they no longer fulfilled the diagnostic criteria (19, 20). The preliminary results imply that dediagnosing could be an important measure for individuals, even if more research still is needed, including potential consequences for the healthcare services and society.
Diagnoses in healthcare records
In all Nordic countries, nationally shared medication-lists have been or are implemented these days (21). However, for diagnoses, national shared solutions have not come thus far, even if a shared diagnosis list recently was implemented in Denmark (22). Such national digital solutions could benefit from connecting information on medicines and diagnoses closer. In today’s healthcare records it may be difficult to find information on when and who set which diagnosis based on what diagnostic criteria. Uncertainty related to which diagnoses that are (still) relevant for a person can lead to no one daring to reassess or remove them, which in turn can lead to maintenance of illness, futile treatment, and stigma. Paradoxically, healthcare records can be an obstacle to dediagnosing in clinical practice.
An argument against dediagnosing could be that diagnoses that are no longer relevant, still could be informative in predicting future risk of disease. Furthermore, when a patient is acutely ill, it could be important for healthcare professionals to be able to access a list of earlier relevant diagnoses. We agree with these perspectives and believe that this could be handled and facilitated in healthcare records. Outdated diagnoses could be sorted as such, without being “in focus” for the patient or healthcare providers on an everyday basis. This could be relevant especially since a diagnoses could influence the healthcare providers judgement of a patient, meaning that the book is judged by its cover (23).
Removing diagnoses and stigma
We clearly acknowledge the many important functions of diagnoses. In particular, we believe that diagnostics could benefit from being inspired from The Five Rights for safety in medication administration (24): diagnosing the Right person with the Right diagnosis at the Right time, for the Right reason, and with Right documentation. Furthermore, we think that dediagnosing is warranted when the burden of a diagnosis is larger than its benefits. Removing diagnoses that are not helpful (in reducing suffering) may also reduce stigma, which is highly relevant in psychiatry. □
