News of actor/comedian Pete Davidson expressing relief after finally receiving a diagnosis of borderline personality disorder (BPD) prompted a recent Twitter discussion among physicians regarding the ongoing debate on whether or not to tell a patient he or she has this diagnosis.
“I’ve heard from [many] trainees that they were told never to tell a patient they had BPD, but I can hardly think of anything more paternalistic and stigmatizing,” Amy Barnhorst, MD, vice chair of community psychiatry at University of California Davis, tweeted.
“Most patients, when I explain it to them, have this kind of reaction — they feel relieved and understood,” she added.
I've heard from amny trainees they were told never to tell a patient they had BPD, but I can hardly think of anything more paternalistic and stigmatizing.
Most patients, when I explain it to them, have this kind of reaction – they feel relieved and understood. https://t.co/23rkSHFIDK
— Amy Barnhorst, MD (@amybarnhorst) February 2, 2021
“I was told that as well (not to tell) in one of my practicum placements,” one respondent who identified herself as a clinical/forensic psychologist tweeted back. “I said it anyway and the person was relieved there was a name for what they were living with.”
However, others disagreed with Barnhorst, noting that BPD is a very serious, stigmatizing, and challenging disorder to treat and, because of this, may cause patients to lose hope.
Still, Barnhorst stands by her position. Although “there is a negative stigma against a diagnosis of BPD,” that idea more often comes from the clinician instead of the patient, she said.
“I’ve never had a patient say, ‘How dare you call me that!’ like it was an insult,” she told Medscape Medical News. Not disclosing a diagnosis “is like you’re not trusting a patient to be a reasonable adult human about this.”
Although BPD is a “hard diagnosis, we would never withhold a diagnosis of cancer or liver disease or something else we knew patients didn’t want but that we were going to try and treat them for,” said Barnhorst.
BPD is linked to significant morbidity because of its common association with comorbid conditions, such as major depressive disorder (MDD), substance use disorders, and dysthymia. A history of self-harm is present in 70% to 75% of these patients and some estimates suggest up to 9% of individuals with BPD die by suicide.
In an article published in 2013 in Innovations in Clinical Neuroscience, investigators discussed “ethical and clinical questions psychiatrists should consider” when treating BPD, including whether a diagnosis should be shared with a patient.
After such a diagnosis a patient may “react intensely in negative ways and these responses may be easily triggered,” the researchers write.
“A propensity that will likely cause psychiatrists anguish, however, is BPD patients’ increased likelihood of attempting suicide,” they add. Part of the problem has been that in the past, it was thought that a BPD prognosis was untreatable. However, the researchers note that is no longer the case.
Still, Kaz Nelson, MD, associate professor of psychiatry and behavioral sciences at the University of Minnesota Medical School, Minneapolis, has labeled BPD a so-called “asterisk” disorder.
As she wrote in a recent blog, “We tell patients when they meet criteria for a medical diagnosis.* We show compassion and non-judgmentalism to patients.* We do not discriminate against patients.*” However, the asterisk for each of these statements is: *Except for those with BPD.
Starting around the 1980s, the Diagnostic and Statistical Manual of Mental Disorders (DSM) listed personality disorders under the #2 Axis, which is for conditions with symptoms that are “not mitigatable,” said Nelson.
“It really started as well-meaning therapists who care about their patients who wanted to develop some precision in understanding people, and them starting to notice some patterns that can get in the way of optimal function,” she told Medscape Medical News.
The thought was not to disclose these diagnoses “because that was for you to understand, and for the patient to discover these patterns over time in the course of your work together,” Nelson added.
Although treatment for BPD used to be virtually nonexistent, there is now hope — especially with dialectic behavior therapy (DBT), which uses mindfulness to teach patients how to control emotions and improve relationships.
According to the National Education Alliance for BPD, other useful treatments include mentalization-based therapy, transference-focused therapy, and “good psychiatric management.” Although there are currently no approved medications for BPD, some drugs are used to treat comorbid conditions such as depression or anxiety.
“We now know that people recover, and the whole paradigm has been turned on its head,” Nelson said. For example, “we no longer categorize these things as treatable or untreatable, which was a very positive move.”
So why is the field still debating the issue of diagnosis disclosure?
“To this day there are different psychiatrists and some medical school curricula that continue to teach that personality disorders are long-term, fixed, and nontreatable — and that it’s kind of disparaging to give this kind of diagnosis to a patient,” Nelson said.
Nelson, also the vice chair for education at UMN med school, reported that there, “we acknowledge BPD’s painful history and that there are these misconceptions. They’re going to be on the front line of combating discrimination and the idea that if you see a patient with possible BPD coming you should run. That’s just unacceptable.”
Nelson noted that the idea of disclosing a BPD diagnosis is less controversial now than in the past, but “the whole thing is still under debate, and treatment guidelines [on BPD] are old and expired.”
Criteria for BPD were not updated when the DSM-5 was published in 2013, and that needs to be fixed, Nelson added. “In the meantime, we’re trying to get the word out that it’s okay to interact with people about the diagnosis, discuss treatment plans, and manage it as one would with any other psychiatric or medical illness.”
An Evolution, Not a Debate
Paul Appelbaum, MD, past president of the American Psychiatric Association (APA) and current chair of the organization’s DSM steering committee, told Medscape Medical News that he hasn’t been involved in any recent debate on this issue.
“I think practice has changed to the point where the general practice is to discuss patient diagnoses with [patients] openly. Patients appreciate that and psychiatrists have come to see the advantages of it,” said Appelbaum, a professor of psychiatry, medicine, and law at Columbia University Vagelos College of Physicians and Surgeons, New York City.
Appelbaum noted that patients also increasingly have access to their medical records, “so the reality is that it’s no longer possible in many cases to withhold a diagnosis.”
“I don’t think it’s a debate; I think it’s been an evolution,” he said. “Maybe not everyone is entirely on board yet but there has been a sea change in psychiatric practices.”
Asked whether there needs to be some type of guideline update or statement released by the APA regarding BPD, Appelbaum said he doesn’t think the overall issue is BPD-specific but applies to all psychiatric diagnoses.
“To the extent that there are still practitioners today that are telling students or residents [not to disclose], I would guess that they were trained a very long time ago and have not adapted to the new world,” he said.
“I don’t want to speak for the APA, but speaking for myself: I certainly encourage residents that I teach to be open about a diagnosis. It’s not just clinically helpful in some cases, it’s also ethically required from the perspective of allowing patients to make appropriate decisions about their treatment. And arguably it’s legally required as well, as part of the informed consent requirement,” Appelbaum said.
Regarding DSM updates, he noted that the committee “looks to the field to propose to us additions or changes to the DSM that are warranted by data that have been gathered since the DSM-5 came out.” There is a process set up on the DSM’s website to review such proposals.
In addition, Appelbaum said that there have been discussions about using a new model “that focuses on dimensions rather than on discreet categories” in order to classify personality disorders.
“There’s a group out there that is formulating a proposal that they will submit to us” on this, he added. “That’s the major discussion that is going on right now and it would clearly have implications for borderline as well as all the other personality disorders.”
In a statement sent to Medscape Medical News, the APA said practice guidelines for BPD are currently under review and that the organization does not have a “position statement” on BPD for clinicians. The last update to its guideline was in the early 2000s.