What You Don’t Know Might Hurt You

Clients request, question, or reject information related to their diagnoses at various times, and in a myriad of ways (e.g., “My partner says I have Borderline Personality Disorder, do I?”, “My mood is all over the place! Do you think I’m bipolar?”, “Maybe it’s ADHD?”). At intake, clients seek clarification of the nature of their difficulties, as well as reassurance that their problems are understandable and treatable. Throughout treatment, they may wonder if therapy is working and if the therapist’s conceptualization of the problem is lacking or flawed. A proportion of clients will even contest their therapists’ opinion and/or propose alternative diagnoses. Such instances of doubt may occur following stressful life events, media exposure, and conversations with others—including other health professionals—and are apt to increase in this era of easy and rapid access to an ever-increasing wealth of information. Despite their normativity, such discussions are often challenging, uncomfortable, and anxiety-provoking encounters for clinicians—especially for those beginning their clinical careers, and in cases of so-called “difficult” diagnoses—i.e., conditions associated with significant morbidity, stigmatization, and/or poor prognoses (Holland, Holland, Geary, Marchini, & Tross, 1987; Mitchell, 2007). Consequently, many therapists circumvent or entirely avoid such conversations.

These reactions are not uncommon. Let us consider the process of therapist reflection and decision making in the context of a single diagnosis – for purposes of this article, borderline personality disorder (BPD). BPD is a complex mental illness characterized by pervasive instability across several affect-related domains, and is frequently accompanied by impulsive and self-damaging behaviors [e.g., suicidal and non-suicidal self-injury, substance abuse, disordered eating, risky sexual activity, aggression, reckless spending, etc. (American Psychiatric Association, 2013; Skodol et al., 2002)]. Despite its ubiquitous prevalence across clinical settings, as well as the severe degree of distress and functional impairment associated with the disorder, many clinicians struggle to disclose this diagnosis to their patients. Available evidence suggests that mental health professionals are more reluctant to recognize and disclose BPD diagnoses to clients than they are other psychiatric disorders – including schizophrenia (Clafferty, McCabe, & Brown, 2001; Gunderson, 2011; McDonald-Scott, Machizawa, & Satoh, 1992; Paris, 2007). Indeed, a recent study conducted on a sample of U.S. psychiatrists found that not only did over half (57%) fail to disclose BPD, but over one-third (37%) also refrained from documenting the diagnosis in patients’ charts (Sisti, Segal, Siegel, Johnson, & Gunderson, 2016).  This practice appears to be even more prominent among those treating adolescents (e.g., Griffiths, 2011; Koehne, Hamilton, Sands, & Humphreys, 2013; Laurenssen, Hutsebaut, Feenstra, Van Busschbach, & Luyten, 2013). Although several empirically-supported treatments (e.g., dialectical behavior, schema-focused, mentalization-based, and transference-focused therapies) have been found effective at relieving BPD symptoms and contributing to lasting improvements in functioning and quality of life (Gunderson, 2011), many clinicians continue to diagnose and treat 1) the co-occurring conditions that frequently manifest among those with BPD (e.g., post-traumatic stress disorder or complex PTSD), or 2) another unrelated psychiatric illness with a similar presentation (e.g., bipolar disorder) that has a better pharmacological prognosis.  

Why Can These Dialogues Be So Difficult?

Barriers to diagnostic disclosure are varied, and result from an interaction of several factors.  Although some of these concerns may be diagnosis-specific—such as fears of initiating or perpetuating self-harm behaviors among those with BPD (Howe, 2013; Lequesne & Hersh, 2004)—the majority apply to other forms of severe mental illness (e.g., schizophrenia, dementia). The MUM (“keeping Mum about Undesirable Messages”) effect, or propensity to remain silent when posed with the challenge of delivering unfavorable news (Rosen & Tesser, 1970), is one useful framework for understanding why it is so hard for therapists to initiate these conversations with clients. Studies have shown that decision-making regarding diagnostic disclosure among psychologists and social workers is influenced by the MUM effect (Merker, Hanson, & Postin, 2010; Rumpza, 2015), which attributes such reticence to a combination of concern for the recipient, societal norms, and the communicator (Tesser & Rosen, 1975). In terms of their clients, practitioners may be wary of potential iatrogenic effects, such as self-fulfilling prophecy, demoralization and decline in morale and mental/physical health, patient over-identification with the label, and self-stigmatization (Davidson & Roe, 2007; Garner, 1985). Public stigma about serious mental illness (e.g., Corrigan, 1998) can also be a major deterrent to diagnostic openness. Well-intentioned therapists may rightfully fear that a label will bias the way friends, family, medical professionals, and society view the affected individual (Corrigan, Green, Lundin, Kubiak, & Penn, 2001). Related considerations include how a diagnosis such as BPD may marginalize patients in terms of their access to future mental health care services (Kealy & Ogrodniczuk, 2010).

Finally, there are those who question the validity of the BPD diagnosis. Indeed, the DSM system allows for 256 combinations of symptomatic profiles leading to diagnosis (Biskin & Paris, 2012), meaning that two individuals with BPD may end up overlapping on only one of nine criteria (five are necessary for diagnosis). Although much research supports the existence and utility of diagnosing BPD among adolescents, many clinicians continue adhering to scientifically-antiquated practice guidelines advocating caution in youth personality disorder diagnoses (Chanen, Jovev, McCutcheon, Jackson, & McGorry, 2008; Kaess, Brunner, & Chanen, 2014; Sharp, Ha, Michonski, Venta, & Carbone, 2012; Sharp & Tackett, 2014). Some argue that BPD’s multidimensionality may obscure specific treatment targets (Paris, 2009); promisingly, empirical investigations exploring clinically-meaningful subtypes—a related concern—are now underway (Johnson, Temes, Scala, & Levy, 2017; Sleuwaegen et al., 2017). Nevertheless, it has been argued that conferring other (less controversial) diagnoses or withholding diagnosis entirely may be more harmful, as it precludes patients and their therapists from accurately prognosticating about expected treatment response (Paris, 2005b). Therapists understand that diagnostic classification systems are ever-evolving products of ongoing empirical research and yet must rely upon current information to help treat patients until more refined constructs are established (for more on the subject of diagnostic validity versus utility, see Kendell & Jablensky, 2003). For these and other reasons, skirting around the issue of BPD with clients, diagnostic hedging and/or partial diagnostic disclosure, and “backstage borderline talk”—in which members on coordinated care teams discuss a clients’ borderline diagnosis amongst themselves without sharing it with the affected individuals—are frequent and unfortunate clinical phenomena (McNab, McCutcheon, & Chanen, 2015).  

Benefits of Disclosure

Thus, we argue there can be enormous utility to the diagnostic process if handled properly by a trained and empathic provider. Obtaining the diagnosis provides many clients with a much-needed sense of relief often after years of suffering, and helps explain the multifarious set of symptoms with which they have struggled. Regardless of their condition, clients tend to report significant increases in positive mood associated with feelings of hope and validation following diagnostic feedback provision (Holm-Denoma et al., 2008). In terms of BPD, research has shown that patients benefit after receiving the diagnosis and “often feel as if the clinical picture ‘finally makes sense’” (Biskin & Paris, 2012). Brief psychoeducation immediately following BPD diagnosis has actually been shown to attenuate core symptoms of the disorder (Zanarini & Frankenburg, 2008), demonstrating its function as a clinical intervention in and of itself. The aspect of substantiating and validating may be particularly important for those with BPD, many of whom have experienced chronic emotional invalidation in central attachment relationships (Linehan, 1993). Probst (2015) has described naming as a form of validation that functioned to “[welcome one] into one’s tribe” (p. 246).

When imparted in a client-centered manner, the act of sharing a BPD diagnosis can strengthen the therapeutic relationship and lead to greater patient engagement and improved outcomes (Biskin & Paris, 2012). Clients are often empowered when they feel they are actively involved in clinical decisions regarding their health and wellbeing (Blackhall, Frank, Murphy, & Michel, 2001). There are benefits to clinicians as well. Knowledge that a client has BPD allows clinicians to account for a co-occurring and heterogeneous set of cognitive, affective, and behavioral symptoms in the same individual (Paris, 2007). Such information helps guide treatment formulation and clinical decision-making. Informed providers who employ/recommend appropriate strategies with their BPD clients are more effective providers, and vice-versa.  Diagnostic disclosure, when communicated effectively, can thus have significant bearing on treatment course and outcome.

Ethical Considerations: The Dialectic of Help Versus Harm

There are several accompanying ethical considerations that treatment providers must entertain when disclosing psychiatric diagnoses, many of which can be tied to the APA principle of beneficence/nonmaleficence, but that also encompass those of fidelity/responsibility, integrity, and respect for people’s rights/dignity (American Psychological Association, 2016). For example, some argue that disclosing diagnosis of serious mental illness has the potential to harm patients by instilling stigma, fear, or distress, disrupt treatment, or even prompt suicide (see Pinner, 2000).

Clinicians may rationalize aphorisms such as “what you don’t know doesn’t hurt you” and “ignorance is bliss” as reasons to censor diagnostic information and shield clients from potentially upsetting news about their mental health; however, there is thus far no evidence to support this view (Yeung & Kam, 2008). Indeed, in spite of occasional increases in short-term distress following diagnostic provision, long-term benefits have consistently been documented across serious mental health conditions (Erde, Nadal, & Scholl, 1988; Holm-Denoma et al., 2008; Paris, 2007).  In fact, Fallowfield, Jenkins, and Beveridge (2002) have described how deception—whether it manifests via outright avoidance or the use of ambiguous or deliberately misleading language when communicating about diagnoses—can engender misunderstandings and prevent clients from participating in key aspects of their care. Indeed, inadequate disclosure of a BPD diagnosis can lead to confusion about the treatment process, therapeutic targets, and expectations regarding improvement (Biskin & Paris, 2012). Without awareness of their illness and associated prognosis, patients are deprived of autonomy and the ability to consent to a course of treatment.

Such a lack of knowledge has implications regarding the manner in which patients make basic decisions related to their health, including planning for crises and making psychiatric advance directives (Clements, Cizman, Forchuk, Pallaveshi, & Rudnick, 2015). This “right to know” is a fundamental ethical standard that is covered under several sections of the American Psychological Association Code of Conduct [see Informed Consent (Section 3.10), Informed Consent in Assessments (Section 9.03), and Informed Consent to Therapy (Section 10.01) in Ethical Principles of Psychologists and Code of Conduct (American Psychological Association, 2016)]. Withholding pertinent information about a client’s mental health status can also be considered an affront to basic respect (Yeung & Kam, 2008). In consideration of the right to self-determination, we recommend that clinicians at the least inquire about and comply with their clients’ preferences regarding knowledge of their diagnosis.

Caveats to disclosure: The importance of context

While the literature indicates that a majority of mental health service users (62%–88%) desire truthfulness regarding diagnosis (Milton & Mullan, 2014), therapists should always weigh the costs and benefits on a case-by-case basis (Marzanski, Jainer, & Avery, 2002). Although limited, extant research indicates that certain groups may prefer varying degrees of disclosure. In particular, culture and age have emerged as potential moderating factors on the relationship between disclosure of medical diagnoses and outcome (Blackhall et al., 2001; Kagawa-Singer & Blackhall, 2001); however, few investigations have been conducted in the area of mental illness specifically. Generally speaking, certain patient populations (e.g., those from collectivistic cultures, with less formal education, of lower SES, at older ages) tend to view disclosure in more negative terms, and may want family members to be more integral parts of managing their care (Blackhall et al., 2001; Kwak & Salmon, 2007). Clinicians must ultimately integrate cultural competence into their practices, while simultaneously precluding stereotypes from overshadowing individual client preferences regarding disclosure and truth-telling (Berkman & Ko, 2009).

Timing is another factor to consider, both in terms of how providing a diagnosis will affect the patient and the therapeutic relationship (Fox, Lafortune, Boustani, & Brayne, 2013). Some settings, such as the Dialectical Behaviour Therapy (DBT) Centre of Vancouver, incorporate structured, comprehensive psychodiagnostic assessments and subsequent feedback into the intake process; however, such standards are not the case in all clinics. While early disclosure is generally advocated (Post & Whitehouse, 1995), there are cases in which strengthening the therapeutic relationship prior to such revelation may be beneficial.

Examples include cases wherein clients present for treatment of a different and unrelated, yet valid problem (e.g., grief), with issues of imminent risk, and/or with concurrent problems such as extreme paranoia or distrust of the mental health care system. However, waiting too long before sharing a diagnosis may have equally detrimental effects. It can seriously compromise trust if a client hears about a diagnosis from another source, and delayed disclosure may prevent critical early intervention (Chanen et al., 2008; Paris, 2005a; Sharp & Tackett, 2014) and may fail to add clinically significant predictive utility to treatment for concurrent disorders, such as depression (Newton-Howes, Mulder, Ellis, Boden, & Joyce, in press). Unfortunately, there remains a dearth of empirical investigations reporting on this topic, and more research is needed before conclusions regarding the effects of diagnostic disclosure timing can be reached.

Practical Considerations for Disclosing Mental Health Diagnoses

How might we broach this challenging topic with clients? Several protocols for mental health diagnostic disclosure have been developed (Milton & Mullan, 2014). These include the broader SPIKES technique, adapted from oncology (Cleary, Hunt, Escott, & Walter, 2010; Cleary, Hunt, & Horsfall, 2009; Cleary, Hunt, & Walter, 2010) as well as other, more targeted illness-specific (Levin et al., 2011; Outram et al., 2014) and culturally-sensitive (Hwang, 2008) models. What unites these approaches is their focus on adequate preparation, appropriate and accurate use of assessment tools, face-to-face communication, the incorporation of idiographic variables (especially client perception of the problem), addressing the issue of stigma, sensitive and empathic responding, and continued follow-up (Milton & Mullan, 2014; Milton, Mullan, MacCann, & Hunt, 2017; Pinner, 2000). The importance of devoting adequate time to such discussions is also essential, yet often overlooked in terms of its effects of attenuating negative effects associated with receiving a difficult diagnosis (Gallagher, Arber, Chaplin, & Quirk, 2010). We encourage psychology training programs to implement discussion of such communication points, which are summarized in Table 1.

Table 1

General recommendations pertaining to diagnostic disclosure

Empirically-informed guidelines for clinicians

·       Consider the use of a formal protocol that integrates assessment and diagnostic provision into treatment

·       Titrate delivery of diagnostic information at a pace that reflects client needs

·       Conduct regular, ongoing treatment monitoring and assessment to determine the impact of diagnosis on clients.  Remain open to reevaluating, revising, and discussing diagnoses with clients throughout treatment.

·       Provide client with ongoing psychoeducation and resources about the disorder in ways they can understand, including referrals to specialized services when appropriate

·       Weigh the pros and cons of disclosure on a case-by-case basis, including consideration of clients’ background, social support network, culture/ethnicity, and personal desires

·       Maintain primacy of the therapeutic relationship, both in terms of having established trust at the time of disclosure and using Rogerian conditions (empathy, genuineness, and positive regard) in the process delivering the news

·       Address the issue of stigma, and the impact this can have on the life of the patient in terms of self, relationships, and health care

Specific Tips When Imparting a BPD Diagnosis

Once a clinician has obtained client permission, conducted a valid assessment, and determined the appropriateness of a BPD diagnosis, there are particular steps that can be taken to facilitate effectual disclosure. Professor Alexander Chapman, a psychologist who has extensive research and clinical experience with BPD, suggests that clinicians begin with a statement akin to the following: “Given the collection of symptoms/difficulties you’ve been experiencing over x period of time, my perception is that you are dealing with something called BPD” (A. L. Chapman, personal communication, October 2015).

Those with BPD expertise also recommend showing the client a list of diagnostic criteria and asking about the degree to which they identify with any of them (Biskin & Paris, 2012). This step can be linked with psychoeducation about the disorder, including a discussion about the epidemiology and biosocial processes involved in illness generation and maintenance. Depending on client preference, clinicians may use this opportunity to offer book recommendations or links to BPD support resources [e.g., National Education Alliance for Borderline Personality Disorder (NEA-BPD); Treatment and Research Advancements for Borderline Personality Disorder (TARA)]. Clients should be given sufficient time to process this information; the combination of assessment and information delivery may require several sessions. Discussion about the various forms of stigma and their significance for the client will need to be addressed, and may continue throughout treatment. Finally, dialogue pertaining to recent improvements in psychotherapeutic treatment for BPD, psychopharmacological options, and prognosis will potentially help alleviate some of the anxiety that accompanies diagnosis, and may in fact provide a measure of hope. Indeed, if communicated in a competent and empathic manner, it is thought that diagnostic disclosure may actually strengthen the working alliance and improve treatment compliance (Paccaloni, Pozzan, & Zimmermann, 2004; Shergill, Barker, & Greenberg, 1997; Zanarini & Frankenburg, 2008).

Summary

Initiating disclosure of a mental health diagnosis can be challenging and feel like a test of one’s clinical skills. Nevertheless, we believe that these conversations are essential to the therapeutic process, and ultimately, in clients’ best interests. When conducted in a sensitive, client-centered manner that is linked to clients’ stated goals and values, such dialogues can offer much-needed validation, assist in organizing treatment planning, and lead to better outcomes.