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Confab #2:

Is it ever ethical to withhold from your patient their mental health diagnosis?

What is the value of a psychiatric diagnosis? Is there ever a time when disclosing a diagnosis to a patient would cause stress, stigma, and more harm than good? These questions are not uncommon among behavioral health care provders.  Empirical evidence indicates that providers will, at times, withhold diagnostic information from their patients. They feel they are helping patients avoid perceived harms that may accompany the label of a psychiatric diagnosis.

The participants of our second ScattergoodEthics Confab debated this question.  Their views are diverse and point to a need for continued conversation.  After all, for many patients, diagnosis marks the beginning of acceptance and recovery, but also may come with risks.

 

  • dr baum baicker 1

The therapeutic relationship is based in trust that the therapist will "do no harm," have the best interests of the patient in mind in all interventions, and be one in which beneficence is always chosen over maleficence. If disclosing a diagnosis would most likely be metabolized by the patient in a way that puts the patient in danger or increases acting out, then tact and timing must rule the day. The definition of Clinical Wisdom begins with the phrase, "Rooted in pragmatism." Given that, then Yes, it is sometimes ethical to not disclose a diagnosis when that choice is the respectful, beneficent, pragmatic choice.

-Cindy Baum-Baicker, PhD; Board Chair, The Thomas Scattergood Behavioral Health Foundation

  • Bleier

Then and now the highest compliment a patient (or family) pays the physician is to say, "s/he took good care of me!"

This encomium betrays acknowledgement and tacit acceptance by the patient and the society of which s/he is a part, of a residual (or foundational?) expectation of paternalism in the contemporary practice of medicine-one that on rare occasions may require the physician to engage in 'beneficent disingenuousness' in order to protect the patient from the harm of receiving too much information, too soon, or at all.

-Henry R. Bleier, MD, MBA, Chief, Consultation Liaison Psychiatry, Corporal Michael J. Crescenz Department of Veterans Affairs Medical Center (CMCVAMC), Philadelphia

  • Michael Brody

Generally speaking, it would be unethical to NOT tell an individual their diagnosis. If this were a physical health condition we would not hesitate to talk with the person about their diagnosis. That being said, how the diagnosis is shared, as well as the supports needed to move toward recovery will vary and be individualized. No matter the diagnosis, identifying the end result of treatment and hope for a life beyond the "diagnosis" is critical to uttering the words of the diagnosis.

In all instances, I would hope that these discussions lead to mutually created recovery planning and a mutually understood prognosis that is hopeful. The key to any of these conversations is that we view the people we are serving and they view themselves first as a person, then as a person with a diagnosis but never as the diagnosis itself!

-Michael Brody, President & Chief Executive Officer, Mental Health Association of Southeastern Pennsylvania

  • ilang guiroy headshot

Yes, it is ethical to not tell a patient their diagnosis if giving the diagnosis is counter-therapeutic and treatment coordination can effectively be achieved without it. A diagnosis can have incredible power. It can provide a name to the disease entity and help distinguish it from the rest of oneself. It can provide a common vocabulary to unify treatment. But while it can be very empowering to the patient, repeatedly receiving different diagnoses can damage the physician-patient relationship and the patient’s relationship with herself.

I believe that a diagnosis serves the primary purpose of guiding treatment and once stability or control has been achieved, it no longer serves its principal function. But when used as a coping mechanism, the diagnosis can become a part of an individual’s identity and a filter through which others perceive them, even after it stops being valid or useful. Some diagnoses stick harder to the collective consciousness than others. But a diagnosis, like an illness, is not a fixed entity. It is the name of a path, not a destination. If the patient can still be informed of the route of the path, still get to the destination of their choosing, and knowing the name of the path is damaging, then I think it is ethical to not tell them.

-Ilang Guiroy, MS/MD candidate, Albany Medical College

  • Reenie King

If someone has any type of physical ailment, details of their specific diagnosis would absolutely be disclosed to a patient. Their prognosis and care would be explained. If there is to be true parity between mental health and physical health then mental health diagnoses must always be disclosed to patients. So too should a clear explanation and action plan be explained, including therapeutic support plans and opportunities. The spectrum of mental health disorders is wide and any psychiatric caregiver should use both his or her knowledge of the patient, the diagnosis and an assessment of how the patient might be able to process a diagnosis and the accompanying information as a basis for how and when to best to present information to the patient. But, I believe a mental health diagnosis should always be given and never withheld.

-Reenie King, ScattergoodEthics Program, Mental Health Advocate

  • Michelle Joy

A prerequisite to answer this question is a survey of the ontological status of “the diagnosis” – or any diagnosis. “The diagnosis” assumes a natural kind that corresponds to the real world. The nosology of psychiatry, however, is composed of syndromes, some of which may refer to natural kinds and some of which may not, and some of which may do so some of the time and at other times not.

Communication with the patient should be framed in helping him or her achieve his/her goals, which often includes the reduction of suffering. The conversation should be framed in terms of acknowledging likely future course, connecting with best possible treatments, and allowing investment in other resources and understanding. At times, the conversation may include the application of a label such as “borderline personality disorder,” where at other times this may involve speaking about “difficulty modulating emotions” and “distress intolerance” instead.

The decision should be made with some consideration of the narrative impact of a diagnostic label on the individual, though this may not fully be known (particularly beforehand). Sometimes diagnoses can hinder responsibility for recovery, exacerbate stigma, or fracture ongoing or future care; sometimes diagnoses can help enhance understanding, communicate more realistic expectations, or connect to additional resources.

Therefore, while we continue to consider the objective versus subjective, the scientific versus normative, and the various criteria and values implicated in psychiatric diagnostic categories, the decision is more about how to communicate best with patients rather than about withholding any certain truths.

-Michelle Joy, MD, Chief Resident, Department of Psychiatry, University of Pennsylvania

  • Andrea Segal

The decision whether or not to disclose a diagnosis to a patient should be primarily based on whether that individual is able to appropriately process that information. Generally, it is best to disclose the diagnosis to a patient in order to collaboratively work towards getting the patient the best line of treatment for his or her illness. In certain circumstances where patient insight into the symptoms or illness is poor, the patient may be unable to effectively handle diagnostic information, particularly if that diagnosis may be pejorative and stigmatizing. In the cases of psychosis spectrum diagnoses and borderline personality disorder for example, it may be best to take the patient’s insight into their symptoms and baseline coping abilities and social support system into account before a clinician decides whether to disclose their diagnosis to them.

-Andrea Segal, MA, ScattergoodEthics Program

  • Andrew Siegel 3

In the short term, and only under the most limited circumstances such as when a patient refuses full disclosure, diagnostic reservation may be justified. In the long term, lack of transparency risks harming patients in several ways. Lacking a shared language with their physicians to explain illness, uninformed patients are unable to provide informed consent to take advantage of evidence-based therapies. Furthermore, stigma continues to impede access to care, and is perpetuated, in large part, by public ignorance of the medical model of mental illness.

-Andrew Siegel, MD, Fellow in Consult-Liaison Psychiatry, University of Pennsylvania

  • Sisti 2

Imagine you are an oncologist. Your patient has just been diagnosed with lung cancer. Would it be acceptable to withhold this information because you think it would be too stressful for your patient to hear? This practice—so called therapeutic privilege—was not uncommon a few decades ago. Today, it should strike us as utterly unethical.

In the case of mental health conditions, withholding diagnostic information is often justified on similar grounds. These justifications are similarly wrong.

Individuals with mental illnesses deserve to know their diagnosis so that they can fully engage in the recovery process. Accurate diagnoses provide patients an opportunity for a breakthrough and give purchase to heightened insight.

From a policy perspective, if we are ever to reach integrated care and true mental health parity—what I call ‘conceptual parity’, where the lines between medical and mental illness disappear—diagnostic transparency is a nonnegotiable.

-Dominic Sisti, PhD, Director, The ScattergoodEthics Program

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