Is it ethical for a psychiatrist to keep a diagnosis from a patient?
February 20, 2015 12:47 PM   Subscribe

My young adult cousin is mentally ill. The exact diagnosis is unclear, but it's some combination of schizophrenia/psychosis, likely with some OCD & depression mixed in. I'm wondering if it's ethical that his psychiatrist hasn't told him his diagnosis and whether this suggests that the treatment he is receiving is subpar.

He became ill ~3 years ago, when he was 20. His original doctors wanted to tell him his diagnosis, so my aunt switched him to another doctor who agreed not to tell him. She believes that he couldn't handle this knowledge and that it would worsen his depression. My aunt is the person who handles all of his medical stuff.

For the past ~2 years my cousin has been treated by a psychiatrist who is from the same immigrant culture as my family (my cousin was born and raised in the US though). It's not a culture that's at all progressive where psychiatry/therapy/mental illness are concerned, and I wonder if the current psychiatrist is going against standard practice by agreeing not to tell my cousin.

Note that my cousin is on medication, so it's not like he doesn't know something is wrong. I just don't think he knows what or how serious it is. I think he might think that it's just depression. They've had difficulty finding any drugs that work and he seems to be getting steadily worse, although I understand that this is common and doesn't necessarily indicate any sort of malpractice on the part of the psychiatrist.

Some additional background:
My cousin is dependent on my aunt and uncle. The entire situation is too long and complicated to go into here, but their lives are a shambles. Their business collapsed and they're unemployed and trying futilely to revive it. They're living in a one-room office space. They're fairly isolated from any friends and family, in part because they feel ashamed of their situation and in part because of the decisions that got them in this position in the first place. My point is that there are a lot of stressors in the situation and I think there's a bit of "us vs them" thinking that might have made my aunt unwilling to listen to medical advice.

I'm wondering if what the psychiatrist is doing is considered ethical? Are there circumstances where it would be ok not to tell an adult patient their diagnosis? Should I be worried that this means that he's receiving substandard care?

Regardless of the answers, I don't intend to tell him myself, but I'd like to know for my own peace of mind/knowledge.
posted by anonymous to Health & Fitness (14 answers total)
I could imagine there being situations where a psychiatrist saw a broad spectrum of symptoms that could theoretically place the patient into several different diagnoses, and withholding a specific diagnosis until more data was available. In that case, as long as valid recognized treatments for those diagnoses are being tried in various dosages and combinations to find the best balance for the patient, it probably wouldn't rise to the level of an ethical violation - although the doctor should still be clear about the types of diagnoses that are within the realm of possibility based on the presented symptoms.

HOWEVER - If your cousin has not been declared legally unable to care for himself, with his parents given legal guardianship or conservatorship, I don't see why they are calling the shots about what the doctor does or doesn't tell him. Even if he's signed a release for the doctor to share information about his treatment with his parents, that doesn't give them the right to step in and make decisions about what his doctor will and won't tell him.

If he hasn't asked for the diagnosis and just says "make me better" or "tell me what medicine to take" that would be one thing. But if he has asked for it and been denied, there is a real problem.
posted by trivia genius at 1:01 PM on February 20, 2015 [2 favorites]

Your cousin is American by birth and is therefore entitled to Social Security Disability financial and medical assistance if he's not capable of working. He's living in one room with his parents? That's enough to mess anyone up. If you're in the same town consider helping him to get Social Security and then a place of his own.

He's probably unknowingly signed something that allows the doctor to discuss him with the parents. He can withdraw that if he so chooses. And he can change doctors.

Yes, I think it would be helpful for him to understand what he's dealing with. I am not a psychiatrist. I have, however dealt with severe psychiatric illness in close family members.
posted by mareli at 1:06 PM on February 20, 2015 [1 favorite]

IANAD but speaking as a mental health client I would find it incredibly unethical to not inform a client of their diagnosis. Actually, any patient who is capable of conducting their own medical care shoudl be informed of any diagnosis.
posted by feckless fecal fear mongering at 1:08 PM on February 20, 2015 [2 favorites]

Informed consent is a core part of medical ethics. If your cousin is asking for information that the psychiatrist has & the psychiatrist isn't sharing it because a third party (the aunt) told him not to, that is a potential problem. If you google "informed consent psychiatry" (or psychology), you'll get a lot of interesting information.

(Also, SSDI is usually only for disabled individuals who have worked a certain amount. If your cousin is not eligible for SSDI, he may be eligible for SSI. The monthly amount is low and may not be sufficient for him to live on his own, but if he qualifies he may also get Medicaid, which would allow him to access mental health care for free or almost-free.)
posted by insectosaurus at 1:29 PM on February 20, 2015 [3 favorites]

I don’t think it necessarily means he is getting subpar treatment. I've noticed some psyc professionals just like to treat the individual, rather than the diagnosis, or feel that the particular client might be harmed by a diagnosis or “label”, or may feel that the diagnosis is not the best, or the most accurate portrayal of the person. Particularly in cases like (what you mentioned above), a lot of it could be situational or because of environment. So it might not be helpful to disclose a diagnosis involving psychosis, when maybe he has been driven to that due to circumstances, but would never meet that criteria if/when his environment and stressors change.
posted by aggielc at 1:38 PM on February 20, 2015

As others have said, communication between treating clinician and client is a core of the therapeutic relationship. Generally, clients are entitled to their diagnosis/diagnoses, but there are exceptions. In my field (counseling)*, the clinician may withhold the diagnoses from the client if he/she suspects or has reason to believe that doing so would negatively affect the client's well being. This guideline is from the Code of Ethics of the American Counseling Association and has enough wiggle room for the clinician to make a decision based on each client.

I, of course, do not know your cousin, his psychiatrist, or anything about his specific care. Just know that just because the shrink is keeping something from your cousin doesn't mean he's hiding something.

Best wishes to all of you.

*I am a master's level counseling intern.
posted by heathergirl at 2:30 PM on February 20, 2015 [2 favorites]

There have been some studies that show that optimal treatment in some cultures DOES involve keeping the true diagnosis from the patient as the family and medical team work together to maintain stability to allow the patient to recover/manage their symptoms. And I have seen how some patients "become" their diagnosis to their detriment due to the intense social stigma around mental health.

So, I can understand their intentions are probably good and focused on his bests interests...but it doesn't seem like the parents can be effective caregivers if they are living in an isolated, stressful and unstable long term situation. Can the extended family offer unconditional support, money, and resources for this struggling family? That is the only way I can see this situation improving for them all. If there is going to be any judgement from the extended family, throw out this idea, however. Judgemental people are toxic to recovery for anyone struggling with mental illness. Meanwhile, if you could offer to be a support, have your cousin visit, treat them kindly, and integrate them into your social life you may have a bigger impact than you thought. Good luck!
posted by saucysault at 3:36 PM on February 20, 2015 [1 favorite]

I am not a doctor, I am a patient. My psychiatrist rarely talks about my diagnosis with me. I know what it is - bipolar with psychosis - but the symptoms are more important than the label. I talk to her about what is making me uncomfortable, and we discuss possible treatments.

Mental illness labels aren't as clear-cut as other illnesses. The labels help point the doctor and patient toward a path of treatment. But as you can see with your family member, someone can have symptoms of more than one illness, and varying severity of each - they are finding these things are more on a spectrum than previously thought. Limiting the diagnosis to a single label might actually be detrimental, because then you might only pay attention to symptoms that fit that label - you might neglect to discuss everything with your doctor.

IMO, it's much more important to have a psychiatrist who works with the patient to make them the most comfortable/functioning based on symptoms, and not based on a potentially limiting label. If your cousin feels it's important to have a diagnosis, and if it is distressing to not be informed, then it would seem not ethical to withhold this information. But if your cousin has good treatment for the symptoms and is happy with the treatment, then I would say knowing the diagnosis is less important.
posted by veerat at 4:07 PM on February 20, 2015 [1 favorite]

When I most recently saw a therapist, she never specifically told me a diagnosis. I figured it out at one point because I had to get some records for switching insurance, etc. but we didn't specifically discuss it. I also didn't specifically ask...I'm 100% confident she would have told me and talked about it if I had, but it just wasn't super relevant to me recovering, to be honest.

I think this is a pretty major problem if your cousin has asked about a diagnosis and the therapist has told him "no." If it's more a case that your cousin is happy with the therapy situation and hasn't asked, I think it's less of a red flag.
posted by rainbowbrite at 5:12 PM on February 20, 2015 [1 favorite]

Another patient, not doctor. Like a lot of people have said, it depends on the relationship and treatment plan.

I've been through three different psychiatrists and six different therapists in the last ten years- originally through Student Services at the two universities I attended, and then through a private clinic. The first told me a diagnosis after one session. (They were wrong.) I dropped out of treatment for two years, then had to go back. The second gave me a diagnosis after two sessions. (Also wrong.) I stopped treatment again, for about a year. I was then diagnosed by my PCP (Wrong.). The third listened to the diagnoses I had been given, asked a ton of questions, set up a monthly appointment and asked a lot of the same questions each session and messed around with medications and whatnot. I'm still in treatment, but he didn't give me my diagnosis until after a year of meeting monthly.

It bothered me for months, to the point that I tried to track down my insurance billing codes to see what they were putting down. (Yeeeeah. I know now that I could have just asked him.) I also had a slight disadvantage in that two of my college roommates were psych majors and one is now a diagnostician after completing her graduate work. So I spent a lot of time around her flash cards and even took diagnostic tests and whatnot.

Eventually, I was told my diagnosis- because I asked. And I'm very, very grateful it wasn't shared with me when we started treatment because I wasn't ready to hear it at the time. He worked with my symptoms, asked all the right questions, and pushed me in the right directions in terms of medication and finding a therapist. I'm in a much, much better place than I would have been.

So, if your cousin is happy- or at least actively participating in their treatment- without a diagnosis, I would let that continue. It sounds like a tight-knit community, so if everyone else knows the diagnosis and are keeping it from him and may accidentally let it slip, it might be time to suggest cousin talk to their doctor themselves. But only if they feel ready.
posted by Torosaurus at 6:22 PM on February 20, 2015

From the OP:
Thanks for the answers so far. I think I may have overstated his level of competence and awareness of his condition. I suspect that he just barely qualifies as legally competent. He is not really functional or able to live independently because he is unable to navigate or understand reality; I don't think he could complete basic tasks with out low-level prompting and direction. He makes up past events and conversations that didn't actually happen. I don't think he understands that his perception of reality is not accurate. However, if someone told him that he had schizophrenia or psychosis or whatever, I think he would be capable of understanding that.

Part of the problem is also that he doesn't know that there might be a diagnosis to ask about. I don't think he suspects that there might be something to his situation beyond depression. I don't think he understands the extent to which he is nonfunctional or misperceives reality. NOT because he is incapable, but because he is completely shielded from anything that might suggest that his ill. Among many, many other things, his parents won't apply for SSI for him because then he would know that he is ill/he would know that he is considered incapable of working.

Minor points:
-He does have health insurance.
-He may have briefly gone to a therapist, but I don't think he still does. I don't think this is due to money/insurance issues.
posted by taz (staff) at 11:13 PM on February 20, 2015

Psychiatry is not an exact science. It can, conversely, be a sign a progressive psychiatrist/care team to not give a diagnosis. Often there isn't a clear one - many overlap/share features/perhaps there is a primary presenting problem and other 'co-morbidities' (additional issues).

Psychotic 'type' disorders used to be thought of as a life sentence. Often they are nothing like it, particularly if the person is young. Most people will recover from a first episode (to varying degrees). I don't know your relative/his exact presentation but if he is hearing voices etc (there are various symptoms and much debate about what should 'constitute' psychosis) he may be better served with CBT/help to conceptualise them/how to live with them (there are hearing voices network). I promise you you do not want to be in a rush to stamp a diagnosis of 'schizophrenia' on him. Nor the idea he may never be able to work. Look up the work of Daniel Mackler on psychosis youtube and chew all this over. Focus on how to help him improve his functioning as and when he is ready for that. Get support yourselves for being family members.
posted by tanktop at 1:04 AM on February 21, 2015 [1 favorite]

I'm not sure what you think would be different if your cousin was told his diagnosis, especially if he's having that much problem dealing with reality. In my experience, a great many people with newly-diagnosed thought disorders (like schizophrenia) have a very hard time accepting that they're mentally ill and therefore refuse to take medications or get treatment; the psychiatrist with whom I work often focuses on client's symptoms, rather than their diagnoses, for exactly that reason. ("It sounds like you're really stressed out about how you don't feel you have control of your thoughts. Would you be willing to try a medication that might help with that?" instead of "Here's a medication for your schizophrenia.") Especially since so many psychiatric medications treat a range of disorders and, again, are more about symptom-management -- atypical antipsychotics can help with depression as well as psychosis; SSRIs can help with anxiety and OCD as well as depression.
posted by jaguar at 3:55 PM on February 21, 2015 [1 favorite]

Couple of thoughts. As was said above, psychiatry is not an exact science and it is not uncommon for a psychiatrist to go 6 months or longer before forming a diagnostic opinion, longer in complex cases or when substance abuse is involved. Second, if asked directly, the treating professional is ethically obligated to tell the patient, however they are also obligated to use language that is understandable to the patient. Obviously, in mental illness this gets tricky -- to someone with an IQ of 60, "schizoaffective disorder with compulsive features" is meaningless, whereas "your brain has trouble organizing and concentrating on complicated tasks and this makes you so anxious that you are afraid to leave the house" satisfies the ethical requirement and may be more understandable to the patient.

I have never heard of the notion that "you shouldn't tell the patient their diagnosis because it could make them worse" outside of a cultural context, but this is well outside the norms of western medicine. There *are* situations where patients give consent to the doctors to deal directly with family members and bypass themselves, I'm thinking specifically about elderly people with terminal cancer, and if your cousin is legally competent and has indicated specifically that he does not want to know his diagnosis and that his parents should make decisions, then I suppose this is legal, and marginally ethical, but my big question would be, is he expected to outlive his parents and what does he do then if he has no idea what's wrong and what his treatment options are?

Finally, be aware that there is such a thing as depression that is so severe that it causes psychosis and misperception of reality. It may be technically true that his only diagnosis is Severe Persistent Major Depression.
posted by Slarty Bartfast at 9:25 AM on February 22, 2015

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