Communicating a Schizophrenia Diagnosis to Patients and Families: A Qualitative Study of Mental Health Clinicians

Transparent diagnostic communication is a widely accepted principle in medicine; however, evidence suggests that mental health clinicians are often reticent to communicate a diagnosis of schizophrenia to their patients (1). Factors such as diagnostic uncertainty, pessimism regarding outcomes, concern about stigma, and patient’s lack of insight all influence the confidence of psychiatrists in conveying a diagnosis of schizophrenia (2,3).

Provision of a diagnosis forms a critical part of treatment. Diagnostic information helps patients with schizophrenia adapt to their illness, but the absence of a diagnosis prevents patients from participating knowledgeably in their health care (4). A medical diagnosis validates illness for the sufferer, providing explanations for symptoms experienced. It enables patients to access the sick role and facilitates access to medical resources (5). As is the case in schizophrenia, a diagnosis can also result in stigmatizing attitudes toward the patient and hence can have negative consequences. Research with people with schizophrenia and their families and caregivers suggests that people affected by this severe illness prefer to have a named entity, no matter how negative, to the alternative of struggling with uncertainty (4,6).

Our group has published a model for discussing a diagnosis of schizophrenia that is based on an approach used to discuss a cancer diagnosis (7). Participants began with the premise that the term schizophrenia should be used when communicating with patients and family, but this is clearly not universally accepted practice.

This study was part of a larger one investigating the experiences and perspectives of clinicians, patients, and caregivers in regard to the communication of a schizophrenia diagnosis. Data obtained will be used to inform the development of a communications skills training framework for use in both the Australian and U.S. context for patients with schizophrenia, based on the Memorial Sloan-Kettering Cancer Center model (8).

This brief report presents information about why clinicians chose, or chose not to, provide a diagnosis of schizophrenia to their patients and the factors that affected their decisions.

Methods

We used a qualitative approach (9), based on semistructured interviews, to examine the experiences and perceptions of mental health clinicians in regard to communicating a diagnosis of schizophrenia. Participants were clinicians employed at public mental health services in an Australian regional city. The 16 mental health professionals (seven women and nine men) included five psychiatry registrars (psychiatrists in training), five consultant psychiatrists, four nurses, one psychologist, and one social worker. The participants had a range of experience in mental health (from two to 30 years) and worked in varied capacities and settings (inpatient, community, supported recovery, and rural). Ethics approval for the project was obtained from Human Research Ethics Committees. Written informed consent was obtained from all participants before entry into the study. [Details of sample, procedure, and data analysis are provided online in a data supplement to this report.]

Results

Most clinicians stated that they preferred to give a diagnosis of schizophrenia, once a diagnosis had been established. But even among these clinicians there were many exceptions, based on multiple types of uncertainty. Only four of 16 (25%) clinicians stated that it was unhelpful to the patient to receive the diagnosis; however, these clinicians also described conflicting practices. The results are organized within three categories of reasons for their decisions (yes [state the diagnosis], “yes but,” and no).

Of the 16 clinicians interviewed, nine (56%) advocated naming a diagnosis of schizophrenia. The stated reasons included that the patient had “a right to know” and “it’s best to be truthful,” knowing provides a sense of relief, there is power in knowing that the illness has a name and nobody is at fault, and it allows access to further information. [Additional supporting statements from clinicians are provided in the online data supplement.]

One of the concerns of clinicians was a lack of diagnostic certainty, including the length of time needed to make a confident diagnosis, variables that confound a clear diagnosis, the symptom overlap between different diagnoses, and the fact that there are no confirmatory laboratory tests to buttress clinical opinion. For example, one registrar stated it this way: “Sometimes I’m a bit hesitant to . . . say ‘Yes, you’ve got schizophrenia,’ because I’ll be thinking, ‘What if it’s drugs? What if it isn’t a schizophreniform [disorder], have we really had enough time?’ and things like that.”

Clearly, an accurate diagnosis is important as a means of conveying information about treatment and prognosis and clarifying the explanation for a patient’s symptoms. However, the negative connotations associated with schizophrenia appear to create a greater sense of apprehension about giving a diagnosis without having “certainty.” Clinicians spoke of the importance of following best practices and of not giving a diagnosis if there are potential confounding factors, such as drug use, and of being fearful of adding to the patient’s trauma by misdiagnosing the illness. For example, a nurse explained, “I mean, not [stating the diagnosis]is important, because, in fact, that first episode can be quite daunting for people, and you want to be careful about applying a label to somebody that is as serious as schizophrenia. There’s enough trauma in the experience of psychosis as it is, and you want to . . . not create crisis within a diagnosis itself.”

The timing of when a diagnosis of schizophrenia should be communicated, especially in relation to the acuteness of a patient’s symptoms and the patient’s insightfulness, was identified as a barrier to communication. The frustration, in some instances, lay not in the unwillingness of the clinician to convey the diagnosis but in the more pragmatic issue of how to do so in an effective way, as well as how to constructively move ahead with treatment and options for illness management.

Timing of a discussion in regard to acuteness of symptoms was less problematic for some clinicians, who were not deterred from discussing a diagnosis of schizophrenia with patients, even when psychotic. For example, one psychiatrist made the following statement: “In terms of . . . the acuteness of their psychosis . . . I don’t see any problem with telling people early exactly what you think is happening . . . , and with people [who] are paranoid, the best is to be upfront with them, early on, and you don’t beat around the bush.”

Uncertainty about patients’ and families’ reactions to receiving a schizophrenia diagnosis was another barrier. Concern about the stigma of schizophrenia had the potential to prevent discussion of the diagnosis. Clinicians worried about their patients and were concerned about loss of hope, especially among young people. Suicide in response to receiving a schizophrenia diagnosis was much feared by some. Several clinicians had experienced the loss of patients to suicide. This experience appears to have strongly affected clinicians and their views about labeling people with schizophrenia “because you know the stigma. . . . I guess suicide risk is probably, would be my worst [fear].”

Clinicians reported using euphemisms and avoiding use of the word schizophrenia in order to avoid angry and aggressive responses. One psychiatrist said, “You don’t want to antagonize people. . . . you don’t want staff getting assaulted because you do things like that.”

Uncertainty about the effectiveness and efficacy of treatment affected diagnostic conversations. Clinicians discussed the difficulty in predicting treatment and management outcomes, because of a number of variables outside their control, such as the age of onset, duration of untreated symptoms, adherence to treatment, drug and alcohol use, engagement in services, and family support. The inability to cure schizophrenia or even, in many cases, to ensure a good quality of life for their patients makes it a difficult condition to discuss frankly and contributed to the pessimism expressed: “The treatment is there, but it’s trial and error too. And sometimes it works, sometimes it doesn’t. Sometimes the prognosis is good, sometimes it’s not so good. . . . So knowing those things, and if you’ve got a young person who’s been diagnosed with schizophrenia, you know, that is a terrible disease. So there is this realisation that I’m telling these people something terrible. And I don’t have . . . something that’s 100% that I’m offering them; I’m offering them hope, which may or may not work for them. So that can be difficult. If it were possible to have these treatments, then you would say, ‘No problem, you’ve got this, we will do this, you’ll be fine.’ ”

Despite acknowledging that discussing a diagnosis of schizophrenia with patients was best practice, some clinicians did not, generally, advocate naming the diagnosis as schizophrenia. Clinicians who worked with younger people felt this most acutely.

Clinicians sometimes contradicted themselves about whether providing a diagnosis is better than not providing one. In contrast to the view expressed earlier that avoiding use of the term schizophrenia colluded with general avoidance and stigma, one clinician stated that the stigma surrounding the schizophrenia label was still so strong that it could cause a person to lose hope. This conflicted with this clinician’s “first instinct,” which was that “everyone should know everything about himself or herself.” The clinician distinguished between younger and older people when it came to providing a diagnosis and felt that it was important for older people to “understand what their illness is, and the name of it, and identify with that and take the correct steps in looking after themselves.” Other clinicians, despite a belief in naming the diagnosis, also stressed a greater reluctance to impart information to younger people.

Although the numbers were small, a trend was observed among nonmedical clinicians to be opposed to giving a diagnosis because of stigma-related harm to patients. In an ironic twist, they expressed a greater focus on patient choices, empowerment, and hope for recovery (finding a meaningful life while striving to achieve full potential) yet felt that they protected clients by not giving a diagnosis, in order not to destroy their hope. This was a barrier to the type of information imparted.

Although most of the clinicians stated that they favored giving a diagnosis, one junior clinician spoke of her experience in working in different teams with senior clinicians who preferred not to give a diagnosis: “More . . . bosses . . . than not actually prefer to say ‘look, you’ve got this cluster of symptoms, you know, this is how it impacts your life,’. . . not really wanting to use a label for that particular illness.”

The general view of these clinicians was that a diagnosis would not be given unless its importance to the individual had first been established or there was some knowledge that the individual would respond well to it. The clinicians felt that, generally, there was little benefit in labeling the illness and that sometimes there was a detrimental outcome. For example, one psychiatrist stated that he emphasized the need to continue treatment for a “psychotic illness,” as opposed to schizophrenia: “So that means to say ‘forget about diagnosis, you’ve got a psychotic illness, it’s serious, you need treatment, and the treatment will be for long, for years sometimes, and you need to keep that, and stick to it, follow it.’ So I emphasize more on those things than actually giving the label. So in my view, actually, I don’t know how a label of schizophrenia helps patients at all, so in that sense, I don’t usually hand it out, because there’s so much [in the way] of misconceptions in the community of schizophrenia, that giving a label—I don’t know what they’re meaning, or understanding.”

The emphasis of these clinicians is that informing someone that he or she has been diagnosed as having schizophrenia is not necessary for treatment to take place, or as one psychologist stated, “The treatment they receive isn’t being dictated by the diagnosis; it’s more the symptoms and their experience of it.” In these instances, the detrimental effects of the stigma attached to a diagnosis of schizophrenia are considered to outweigh the benefits of knowing one’s own illness.

One senior psychiatrist did not believe that a diagnosis should routinely be given but rather offered it only if requested by patients: “I tend not to focus my interview on talking about a diagnosis—more symptoms. But if people ask, . . . then I would tell them. But I don’t think a label provides any benefit to some people—some people want them, some people don’t. If they want it, then I’ll give them one, and if they don’t, then I won’t, we don’t discuss it.”

Discussion

The results of this study confirm previous findings highlighting the difficulties clinicians feel in providing the diagnosis of schizophrenia to patients and their families. Despite the growing body of literature documenting the importance of clear diagnostic information (4,10)—that access to a diagnosis can mean resources and support and liberation from uncertainty (5)—and the fact that over half the clinicians believed they should share the diagnosis, the reluctance in practice remains. The reasons for this related in this study to the difficulty of feeling confident in the diagnosis early in the illness, concern about the impact that such a serious and “terrible” diagnosis might have, and the possibility that patients would lose hope. Making matters worse, current treatments for schizophrenia do not offer to cure it or even to reliably manage morbidity.

There is also a desire not to label people with such a stigmatizing diagnosis, although this avoidance may paradoxically increase stigmatization. If a person's mental health clinician cannot bear to use the term schizophrenia, what message does this convey? There is cognitive dissonance when clinicians emphasize giving hope but feel such pessimism. Recovery-oriented training that incorporates consumer viewpoints of recovery may help to counter this pessimism.

The analogy for conveying bad diagnostic news has typically referenced the diagnosis of cancer. However, dementia may be a better point of reference; here, too, the issues are the inability to prove the diagnosis and the concern for causing patient distress and damaging the doctor-patient relationship (11).

There were several limitations in this study. The range of different professional backgrounds of the clinicians interviewed meant that there were only small numbers in each category. A larger sample of clinicians, working across metropolitan, regional, and rural centers, might provide different data. In addition, the number of services involved, from early intervention to acute inpatient services, and through community and rehabilitation services, meant that patients were seen at very different points on their illness trajectory. However, this broad sweep was also a strength of this study in that it elicited different viewpoints.

A more significant limitation is that what clinicians say they do, and what they actually do, may differ substantially. Discrepancies have been noted between beliefs and actual practice in psychiatry (12). There was some cross-validation of our findings in that some clinicians provided comments on the practices of other professionals with whom they had worked. Perspectives of the registrars and nurses who had current experience working with different senior clinicians were valuable. An observational or ethnographic study would be necessary to verify practice.

One may speculate that a further important but unacknowledged reason preventing the communication of a diagnosis may be the clinicians’ need to shield themselves from their own sense of the trauma experienced by the patient and family in receiving a schizophrenia diagnosis and their feelings of helplessness in the face of this illness. Giving bad news is an inherently stressful task (13), and in psychiatry there are extra complexities, especially concerning patients in the acute phase of psychotic illness. Psychiatrists have high rates of burnout (14), and although discussing a schizophrenia diagnosis with patients and their families is a complex issue, targeted communication skills training may give clinicians more confidence and mastery in navigating such communications, as has been reported in an oncology setting (15).

Conclusions

Having mental health clinicians reflect on their own feelings, examine possible identification with patients, and recognize the subtle interplay of hope and pessimism in communicating a schizophrenia diagnosis are key outcomes of this research that will influence future training programs for psychiatry trainees. However, training in the multiple tasks involved in best-practice communication will be successful only if clinicians have insight into the barriers that prevent them from naming a diagnosis of schizophrenia.