Wednesday, February 06, 2013

On Publishing the Psychiatric Records of Those Who Can't Say No


This past Sunday (Super Bowl Sunday, in fact), the lead article in the New York Times, front and center of the first page, above the fold and 4 pages long, was on the tragic story of a young man who died of suicide after the abruptly stopping prescription stimulants which he was reportedly addicted to.  Please read the article HERE.

The article goes into some detail about the young man's life, his talents, his charm, his zest for life and his hopes to become a doctor.  The reporter (and presumably his parents) state that his life took a sharp turn after he began using and abusing stimulants, and that it was all-too-easy for him to obtain high doses of medication with relatively little medical oversight and limited (or discouraged) input from his parents.  The story talks about his addiction, his violence, his stay in a psychiatric unit for a psychotic episode, his turn from success to failure, and finally his untimely and tragic death.  The parents obtained his psychiatric records after his death as per their legal rights, and excerpts from those records were published in the article.

I don't know what motivated the family to give psychiatric records to a New York Times reporter.  I am going to assume that in their grief, they wanted some good to come from the loss of their loved one, and one way to make this happen is to tell the tragic story, to warn others of the risks of prescription stimulants, to let people know that while amphetamines are sometimes safe, they aren't always, and awful things can happen.  I don't know if that was the motive, but it's the only one I come up with.  The article says the family does not plan to sue the doctors.

So I don't want to talk about Attention Deficit Disorder, and I don't want to talk about the details of the care this patient received.  Abuse of prescription medications and over-prescribing are clearly problems and prescription medications cause many deaths each year.  

What I want to know is what do you think about the idea of publishing someone's psychiatric records after they are dead?  It's clearly legal (I think) as they become the property of the next of kin who gave them to the newspaper.  But is that okay?  And I imagine the physician and the other prescribers did not give permission for their notes to be published in the paper, and I imagine that must be legal, too, to print the notes of a doctor (in context or out) as long as the patient or their proxy consents, but is that okay? 

 I've asked my family not to give my medical records to The New York Times after I die. And as a physician, I hope to never read my clinical notes in the newspaper.  What do you think?

43 comments:

Sunny CA said...

I completely agree with you on this. The parents might have been well meaning, but they were misguided. Publication of the physician's notes was wrong, and it did not honor their son's memory to expose his personal life in this way, even if he was already dead.

Anonymous said...

Dinah, it seems you want to avoid all the relevant issues and focus on the least important one. In my opinion, the family shared all the records with the NY Times because when they tried to do things the right way when their son was alive, they couldn't get the attention of their son's doctor.

Sometimes, drastic action is the only way to get the attention of your colleagues who still seem to be handing out psych meds like they are candy. When you engage in what I feel is malpractice, your notes deserve to end up in the NY Times.

As far as the parents sharing the son's records, he is dead so who cares? In my opinion by doing so, they are potentially saving other families from a similar heartbreaking situation.

AA

roblindeman said...

I agree with AA, Dinah. It's a shame that you don't want to talk about ADHD or the facts of the case as they are known, because without doing so you miss the point of the story.

The young man apparently lied about his symptoms, received a diagnosis and was "treated" with a mono-amine stimulant. When he flipped out on speed, as has been known to happen, he was "treated" with anti-psychotics.

The point of the story is the same point I have been making in this comment space ad nauseam for years: namely, that there is no objectively measurable brain correlate of ADHD or any so-called mental illness. This catastrophe unfolded because the young man lied about what was going in his head and he was believed, because we have no way to validate what he says

This young man lied about his symptoms and his so-called physicians lied to him and to themselves about what these drugs do.

CNS stimulants do not correct chemical imbalances. They stimulate your central nervous system. Period. That's why they are also called "performance-enhancing agents". And if you take them irresponsibly, bad things happen to you, as we learned to our great sadness, thanks to the New York Times

Chewing Taffy said...

While I find the parent's decision to publish medical records in poor taste, I also understand their frustration.

While their son was alive, they had no rights and no ability to help them. They tried to talk to his doctors, and weren't able to.

I have been riding this same roller coaster with my mother for years. I think this discussion of mental illness has to include practical steps that families can take when their loved ones begin to act--excuse the term--crazy.

Not "i'm going to kill myself" crazy...just crazy.

Obviously, if someone's life is in danger, you can call the police. But if your mother is covering all the vents with tin foil because the aliens are going to invade...nada. Nobody wants to talk to you. :-/

Dinah said...

Rob & AA:
I thought the article stated all those things, I don't think they are surprising, I don't think that amphetamines should be so easily doled out, and I didn't want to write a post saying "Read this article, it's tragic and I agree with it."

It's also a lesson on not abruptly stopping high doses of an addictive medication. Many many people go through detox/rehab each year, and getting off these medications in a controlled, supportive environment might have changed things this for this particular young man.

Do people really think "They're dead, who cares what they would have wanted or what happens to their reputation?" I hope not.

I wondered if more change might come of a lawsuit...fears of lawsuits change physician behavior.

I don't know what change will come of this. Many people will read it and say "I take stimulants and they help me." Maybe some people will recognize their addicted family members (as in this article) and encourage them to stop, but I don't know that it goes so easily with addictions.I don't think docs will read it and say "Oh, I prescribe like that, I guess I should stop."

I do hope it helps someone. I still wouldm't want my story in the paper.

roblindeman said...

Dinah,

Now this is going to turn into a discussion about paternalism. A "controlled, supportive environment"? It is paternalism of the most crass sort to suggest that one needs help from credentialed professionals to wean off a substance that is harming you. Sigmund Freud had no trouble getting off opium on his own. Thousands (millions?) quit smoking without checking into rehab.

Did the "controlled, supportive environment" put Richard on Seroquel?

The boy took a performance-enhancing drug in an irresponsible manner, and you see this as a failure of paternalism? I see it as a failure of responsibility on the part of a mis-guided young man, who by the way was lied to by his psychiatrists.

HarrietMD said...

To Dinah,
When I attended Seth Stein, Esq.'s tutorial on CPT coding he repeated a statement I found to be grotesque, which has troubled and perplexed me since I heard it:
It was this: "There should be nothing in a psychiatrist's notes that could not be published in the NY Times."
Literally.
This was said in the context, presumably, of trying to convince psychiatrists to write more objective, factual, notes, more like "real doctors."
Well..so you have it.
The wisdom of the APA right in our faces, once again.

Dinah said...

So we can't talk about whether it's ethical to give your dead relative's psychiatric notes to The New York Times?

HarrietMD said...

No, I am not saying that. What I am saying is that You, as an individual can obviously take whatever position you like about this. However, as a profession--as psychiatrists-- we lose the right to speak from any particular high ground about issues of "privacy" and
"ethics" if we have lawyers representing our major professional organization making profoundly ignorant statements and foolish statements like that.

kiz said...

let's see-I know a mom who thinks it's acceptable that her kids pop an Adderral to study for a test. No, it's not their prescription, they get it from friends. I know of another woman who likes to take her daughter's before housecleaning. I know of another mom who is so addicted that she steals from her own child's prescription. This woman is known to be found gardening at 2am in the morning. She has also found a way to receive large prescriptions at a time. And most disturbing, I know of two young girls who lie and use it for weight loss. They are known to occasionally snort it. It amazes me that their doctors can not see this! ! I posted this article on Facebook hoping someone will get something out of it. I realize all you shrinks already know of these stories-but the general public doesn't!! Obviously, his parents wanted the WHOLE story told, notes and all.

smith said...

Dinah, don't take this the wrong way but I do not imagine the NYT would have any interest in publishing your own psych notes or those you write about patients. I have years of a psych history stored in notes of various shrinks and institutions. I do not believe the NYT would be interested in publishing mine either. I would like to know why it disturbs you so. There has been publication of medical and psych histories of football payers who died suicide after multiple serious concussions. Is it okay to publish their stories to raise awareness because we can trace their psych issues to physical injuries? Is it different to publish a young man's story to raise awareness? If he survived, he might have gone on to write a book about the ordeal. Trouble is that no one would publish it if he had lived. It is his death that makes the story compelling. I am pretty sure he wasn't buried in the clothes they found him in. Without his consent, he was stripped and then decked out in his burial suit or shroud. I don't think that Sexton's shrink should have released her taped sessions. I do see the point behind the parents' actions here. Psych meds are doled out like candy. It has to stop. People who die in fires have pictures of their burnt houses published. Hello, hello, suicide and drug addiction, come out of the closet.

sue said...

I always wondered if Anne Frank would have been comfortable with her diary being published.

Eliza said...

I don't understand, Dinah, what you think was unethical?

I suppose I don't worry too much about what happens to my medical records after I'm dead, because, well, I'll be dead. I'm not going to know.

As a clinician, I wouldn't want to read my notes in the paper or have them read out loud in a courtroom, but it is the risk I have to accept because I am writing about someone else in my professional capacity. They are my patient's notes, not mine - the ethical obligation lies with me and with the journalist as to what we write.

Eliza said...

Harriet, I realise I misread your first post - what is wrong with the advice that "There should be nothing in a psychiatrist's notes that could not be published in the NY Times"?

I understood that as about being three-dimensional in our formulation of our patient's difficulties. "Objective" and "factual" can also be completely disrespectful to the complexity of the patient's life. Reflecting on that complexity is our ethical duty.

Plain Anon said...

As a patient, I do not want my family to have access to my psychiatrist's or therapist's notes about my treatment. If I wanted them to know about my crazy, I would tell them. I told my therapist this morning to burn my file if I die and I'm telling my psychiatrist the same thing.

Anonymous said...

I would care about my therapy records going to my parents. In therapy you talk about family struggles, and sometimes patients let off steam and get angry, and it doesn't mean you don't love your family. My only concern would be that the records might convey the irritation but not the love, and I wouldn't want my parents to be hurt. But, med checks? Who cares about that.

jesse said...

To address Dinah's initial question, whether it is ethical or unethical (as contrasted with simply legal) to publish psychiatrists' notes of which one has legal possession depends primarily on factors such as motive and necessity. Those are major criteria of ethics. This is distinct with whether it is wise to do so. So if the motive in turning notes over to a newspaper is that you hated your son, that is clearly unethical and wrong. But if you believed he had been mistreated and died unnecessarily, wanted to protect others and shed light on what you believe to be pervasive and wrong medical practice, then it might be noble in addition to ethical.

But as to the notes, I agree that there should be limited information in notes. Do you remember Daniel Ellsberg? When his analyst's notes were obtained they contained nothing. I take psychotherapy very seriously, and part of taking it seriously is not recording any detail of a patient's life that would hurt him if it fell into the wrong hands. I would bet if you saw hundreds of therapists' notes you would think no one has had an affair or had done anything illegal, immoral, improper, etc.

If a patient is worried about homosexual thoughts would I need to record that to remember it? Coveting his neighbor's wife? Cheating on his taxes? There is no requirement to record these things for good reason.

Perhaps details of a dream would be recorded. But for the most part we remember, and reach into our memories to make associations. If you are listening carefully to someone in an emotional way you don't record the conversation.

Medications and other medical details are another matter. Substance use needs to be recorded if it is part of a diagnosis. This is medical treatment and medical details need to be recorded. Similarly, if a patient appears to be suicidal, or if he is bringing up ideation or showing symptoms that lead me to fear he is dangerous to himself or others of course I need not only to record this but consider what course I would take.

As to publishing in the New York Times, I would suggest that nothing be posted on FaceBook or written in a blog that you would not be willing to see circulated by someone and quoted publicly. I have heard of doctors confronted by an attorney who reads something they have posted online. "Doctor, do you recognize this...?" It can be devastating.

Tigermom said...

I thought that doctor patient confidentiality does not die with the patient...

jesse said...

@Tigermom, it does not die as far as the psychiatrist is concerned. We still maintain confidentiality. But if the patient dies the right to the record and to the patient's confidentiality passes to his heirs. They can do as they wish, which can include suing the psychiatrist or otherwise making the record public.

Dinah said...

I like Jesse's answer.

Whether Anne Frank would have wanted her diary published really did make me pause, great analogy.

I imagine the parents had complicated feelings, it comes with the turf of having a child with an addiction. It is a heart-breaking story.

smith said...

Anne Frank would probably have been just fine with having her diary published.
http://www.nytimes.com/1995/03/05/books/the-whole-anne-frank.html?pagewanted=all&src=pm

She was getting it ready for publication. Her father removed the very personal passages prior to initial publication. By the time the definitive version including those passages was published, had she left the Annex alive,, she would have been in her late 50s. Would she really have had an issue publishing her adolescent thoughts about sexuality by the time she was in her 50s?

drlynn said...

I'm a psychiatrist, and I believe the most salient point of this case is how carving our profession out to only do "med checks" leads to poor, and occasionally tragic, treatment. Until we take on treatment of the whole person, we will have short med visits that allow us to make the most superficial medical assessments. This is a travesty.

roblindeman said...

Dr. Lynn,

For the love of God, if the 15 minute med check is such a travesty, don't do med checks!!! Spend time with your clients and learn their stories.

And please (on my knees)do not lie to your clients about what these meds do. Amine CNS stimulants are performance-enhancing agents. They do not correct any chemical imbalance.

Anonymous said...

Stigma. Stigma. Stigma. If someone disclosed,ad, or published ,ad,that you had gout or diabetes or a heart condition would the idea of that bother you now?

Anonymous said...

Dr. Lynn,

Someone told me a story about a psychiatrist suggesting an SSRI because the person was depressed about a medical condition that anyone would be who was in a similar situation.

When is this madness going to end? This isn't an isolated situation as this happens constantly.

Please do what Robb suggests and take the power back instead of acting like you can't do anything about the situation. People's lives depend on it.

AA

jesse said...

One other comment regarding the confidentiality of records: there are a number of ways that records leave a psychiatrist's office and can put a patient at risk. They could be caught up in a lawsuit about another medical issue, they could be caught in a custody battle, a patient could be pressured to release them for insurance reasons. I think, therefore, that a psychiatrist needs to be very cautious about recording non-medical information that might embarrass or seriously hurt his patient if it became known.

Effd said...

My doc puts very little in the record for the reasons cited by Jesse. It isn't for my benefit only. Said doc does not want to ever be called to testify based on what was written. Don't write it and you won't be called. I had my record transferred to a new doc and was shocked to learn that med records were not accuratetly documented. My insurance can tell me when I filled a prescription. The doc did not always document the prescription. Not surprised. Started to see the doc for ^^^^anxiety. Got prescribed a drug that made me crazy. Then got placed on short acting benzodiazepines and then on short plus long acting to deal with rebound anxiety. Then got put on AP to deal with insomnia and anxiety that benzodiazepines could not cover. Had no idea I was benzo tolerant by that time. Gained 40 lbs in no time. Benzo was not discontinued. Trouble with mood then attributed by doc to the benzodiazepines but no dic wanted to help me get off the high doses I am on. So I take multiple drugs and not one of them was worth the price I pay. The docs worry only about whether the patient offs themselves today or tommorow. They dont care about long term chrOnoc side effects and dependency. Ya Rob, I could get off the stuff but not like Freud did. I risk seizures and more. Doc does not want to admit me to program to detox because doc would have to put the genesis of my physical dependence out there. It's not as easy as rob makes it sound and it's more serious than Dinah might want to think. Sure, as an adult I should be responsible. But I never asked for a prescription. I had no idea where it would end up. I wasn't given the info I needed. Meds were offered up as the natural and only logical solution. Did I want relief. Oh yes. Do I have relief? Not at all. If I die as a result of this and I don't doubt it, I want people to know what can happen when you seek psych care.

Anonymous said...

Apologies for this off topic post but I wanted to respond to Effd whose story is heartbreaking.

You might want to take a look at this list of doctors on the Surviving Antidepressants website who help patients get off of ADs. Perhaps if one is in your area, they could help with getting you off the Benzos.

There is a link to doctors that allegedly help with benzo withdrawal but the concern is the list hasn't been updated for some time. Still, it is worth a shot.

http://tinyurl.com/7cp8l8v

The website is not beholden to any commercial interest and is dependent on donations such as an FYI.

And I assume you have tried the Benzo withdrawal sites?

Thanks Shrink Rappers for letting me post this. I hate to see someone suffering and wanted to provide information that might be helpful.

Effd said...

Last Anon, Thank you. I am aware of the sites but I can't get a doc to prescribe according to those recommendations. I am on massive amounts of the stuff and it will a very long time to get off. My big concern is about not having any medical monitoring during the process. In a sick kind of way I almost wish I had an oxy addiction because there are lots of treaters here for that and I could go to a methadone clinic and get off the oxy. The benzos truly do nothing to help me with my anxiety after so many years. It is like i am immune to the anxiety relieving qualities they once held but am not immune to the effects of getting off them. I think the answer is to go into hospital to get off them but that would cost more money than I have. Insurance doesn't cover me for that. I will figure it out one day. What I wanted to get across is that the docs did not record the evolution of this. I wish they had. I am very cynical about what docs record or do not record. I am very cynical about a profession that prescribes a quick fix when it doesn't exist in real life. I think the Fees did the right thing in going public. They did not want their son to die in vain. It is not about whether his memory was honored or not honored by exposing his personal life and physicians have some explaining to do about their role in the creation of drug dependence and drug promotion and ignoring the part about first do no harm.

Anonymous said...

Thought it was an excellent comparison to another illness - if the topic was about diabetes or heart disease or cancer people like Dinah would be heralding the author. Only in psychiatry is there this sick and twisted lack of treater responsibility. Claiming it in the name of "confidentiality" and "ethics" is one of the more bizarre methods I've seen....but doesn't shock me that Dinah holds sway with it.

Dinah said...

Please don't speak for Dinah. Patient confidentiality extends to all medical treatment, as a legality, and not just psychiatric records. The question of whether it's okay to publish your dead relative's psychiatric records has nothing to do with whether I think the care given was appropriate or whether someone who prescribes medication has some responsibility for the outcome.

I still like Jesse's answer. I think the motive of the person releasing the records to the press is important.

There are many factors here, most of which we really don't know. The press sensationalizes. I was quoted in the NY Times once, I talked for 20 minutes to a reporter, she quoted one sentence fragment taken completely out of context to say the exact opposite of what I meant, and I called the subject of the article to explain/apologize.

In general, parents of children with drug addictions have a very hard time, they feel guilty, they feel angry at the child, and in this case, they may well feel angry at the doctor maintaining the addiction (I would). They often feel helpless and their pain is tangible. They also grieve the loss of their child's potential and live through the awful consequences of the behaviors that addictions induce.

If that's not enough, the parents of a child who has died of suicide bear a horrible load. They, too, feel angry, guilty, helpless, sad, and sometimes a bit relieved --either that their ordeal is over, or that their child is no longer suffering.

I imagine the decision to tell a relative's story to a reporter is a complex one, and not one that boils down to a single bullet point.

I don't know that this was the wrong decision, or even one that the story is one the son wouldn't want told. I just wanted to think about it and hear other peoples' thoughts on the issue. Thank you to all who contributed.

I do hope the story helps people and makes doctors aware that they medicines need more monitoring and family input (and lower doses!), that they shouldn't be used to enhance performance, and that patients who request them become more aware that there is risk.

swimmaker said...

It's been 6 years. I'm sure Keith forgave you for the quote.

Alison Cummins said...

The guy's dead. He does not exist. What could be unethical about publishing the medical records of a nonexistent person?

Dinah, you're ignoring AA's initial point that the parents had been ignored when they'd done things the "right" way, the way you'd have been comfortable with. They couldn't get attention until they did something that made you uncomfortable.

You're making this about you. It's not about you, it's about the difficulty of being heard. If I'm trying to save someone's life and you, an MD, are ignoring me, I don't want to get into a discussion of whether shouting at you to get your attention is not nice. I want you to save the person's life.

*** *** ***
When linking to my beloved's obituary of his mother, I led with this statement:

"In the british tradition one must not speak ill of the dead. One line of thinking is fear that the dead may come back to defend their honour. Another is respect for those not present to defend themselves.

"In other traditions one must take care to speak the truth of the dead, to satisfy them that they have been well-understood and that they have left their own mark.

"Mark has been conscientious in his account."

http://www.alisoncummins.com/2007/12/12/necrology/

roblindeman said...

effd:

I did not say that kicking a substance is easy. Here is what I said:

"It is paternalism of the most crass sort to suggest that one needs help from credentialed professionals to wean off a substance that is harming you. Sigmund Freud had no trouble getting off opium on his own. Thousands (millions?) quit smoking without checking into rehab."

It isn't easy, but it's possible, and you don't need a credentialed professional holding your hand (and collecting fees) to do it.

Your situation is abysmal, even catastrophic. I would not wish your predicament on anyone. I only wish you owned a bit more of this, rather than shoveling all the blame on to prescribers.

Effd said...

Rob,
I don't need someone to hold my hand, true. I would need my withdrawal to be monitored and I do not view that as hand holding. I don't feel the need to explain myself on that score other than to say I have medical conditions that probably mean I should not continue on what I take much longer and also that I am at risk of serious complications if I do not do it right.
Since no doc is gung ho on getting me off these drugs, it is in my hands and I should get off. That is my job and no one can do it for me. That said, I have been to doctors for infections that required antibiotics. I have never told a doctor which one to prescribe. I assume they know.If I were to have a serious reaction to an antibiotic,I would not blame the doc. I would not be happy but doctors cannot foresee every bad outcome. I do have a problem with the prescibers who started me on my current drugs. You could say I started myself since I swallowed the pills. I wasn't in much of a position at the time to doubt the wisdom of the doc with a wall full of diplomas while I was in the shape I was at the time. I didn't lie to the doctors to get drugs. I didn't ask for any drugs. Somewhere in the mess of it all, I was hospitalized for several months (might have been a good time to have been taken safely off the drugs) and I my doses were increased significantly. The nurses aides watched us swallow our meds. That is what happens when you are involuntary. Not swallowing your med is also a quick way to go from voluntary to involuntary status.I was there long enough that my body became used to the higher doses that I believe were prescribed to keep me docile and not because they would help me long term. At first, the dose increase kept me halfway comatose. By the time I got out, I could take it and not feel as though I had taken anything. So if I shovel blame, as you state, I think it is well deserved. We do not have a system set up to provide alternatives to people who are not well. I seem pretty well now since no one has a clue I am so dependent on drugs except my doc. I have read the Ashton manual. I have investigated treatment programs. If I ever go nuts again, I will be provided with a room in a hospital somewhere. If I want help getting off the drugs, I am on my own and, like I said, it isn't as easy as you make it seem. It is not about quitting smoking . That is damned hard and I have done it without anyone holding my hand but I was not at risk of anything in quitting smoking. Go judge someone you actually know. I did not come here looking for help. I came because I wanted to say that I know how easy it is to get drugs whether you are looking for them or not.

Sarebear said...

Effd, I wish I was as good sticking up for myself, as you are, here.

You own what you feel is yours and you hold those responsible who are responsible for doing to you what they've done.

I wish there were doctors who would support you in what you need. Mine did not support me either, gp deferred to psychiatrist and she would not get back to me, so I was left w/choice of continuing to harm kidneys/bladder, or get off mood stabilizer myself (which had BAD psych results the year before when I did that, but things were so bad physically that I had to do something). I don't recommend playing doctor, but for myself, I felt I had no other choice. We'll see if there's perm damage later this year at the urologist. My nladder/kidneys are now overreacting to other meds, including an anti-hypertensive my shrink prescribed that worked brilliantly for me combined w/vyvanse. Now she won't see me until after i've seen a urologist, and I can't get a physical to get a referral to one for two months, so it's gonne be 1/4 year or more before I get any more psych medical treatment.

I hope you find the doctors to help you, again I reiterate I don't recommend playing doc one's self.

Alison Cummins said...

Whether publishing the records of someone unable to consent (because they don't exist) is an ethical act has nothing to do with the intentions of the person who published them. It has to do with the [foreseeable] consequences of the act.

Intentions speak to whether it's a sin.

Sleeves said...

Alison,
Depends on your religion. Crime generally requires a men's rea. In my religion, no one cares what I intended; actions speak louder than words.

Sleebes said...

Lol. Mens,not men's . Sin, I'm always sinning and always relenting. I'm on the hamster's wheel. I'll take your god over my god, Alison

Sleeves said...

Repenting. I hate auto correct.

Alison Cummins said...

Thanks, Sleeves.

Substituting morality for sin:
“The difference between ethics and morals can seem somewhat arbitrary to many, but there is a basic, albeit subtle, difference. Morals define personal character, while ethics stress a social system in which those morals are applied. In other words, ethics point to standards or codes of behavior expected by the group to which the individual belongs. This could be national ethics, social ethics, company ethics, professional ethics, or even family ethics. So while a person’s moral code is usually unchanging, the ethics he or she practices can be other-dependent.”

http://www.wisegeek.com/what-is-the-difference-between-ethics-and-morals.htm

So according to this definition, sharing the psychiatric records of their nonexistent son might or might not make the parents immoral people depending on their state of mind.

However, the act is ethical or not depending on how it affects the larger society.

According to this definition, I am really not particularly interested in the morals of the parents. I am much more interested in whether they behaved ethically. Dinah seems not to care whether their behaviour was ethical or not: she’s much more interested in whether the parents are nice people.

Alison Cummins said...
This comment has been removed by the author.
Alison Cummins said...

Ok, an example RE the morality of the actor vs the ethicalness of the act.

I've just gotten back from Kolkata. There are lots of child beggars. A moral visitor is shocked and is moved to do something. An impulsive moral visitor might give money to a child beggar. That's usually going to be an unethical act because it causes harm, but since the intention was good we don't consider the visitor to be immoral or otherwise not-nice.

A thoughtful moral visitor will do some thinking to determine the most ethical way to proceed. They will realize that giving directly to child beggars encourages them to continue to beg; perhaps most crucially, encourages an adult guardian to keep them out of school so they can beg. If children were unable to bring home enough money by begging then they and their families would be forced to seek other options. The question then turns to the other options. What if there aren't any? Well then, that's where your money should be going. There are orphanages, schools for hard-to-reach children and workshops that train and hire single mothers. Give to those. Be a moral/nice person and commit an ethical act.

Dinah asked whether publishing the psychiatric records of nonexistent people was an ethical act, not whether someone who committed that act might be a moral/nice person. Maybe it's an act like giving money directly to begging children rather than providing the children and their families with options: understandable but likely to be harmful (and therefore unethical). To know whether it's ethical or not requires thought and discussion of the harms and benefits.

Is publishing the records likely to have the desired effect of drawing attention to a neglected problem? (Is the problem actually neglected? Is there more to the story? Have dedicated, thoughtful, caring people been working for decades on a better solution and been unable to find one? Just because the problem is new to those parents doesn't mean it isn't well-understood by others.)

Is increased attention likely to result in better care for patients? (Maybe it will lead to ineffective interventions that make onlookers feel like something is being done but which are at best a waste of money, at worst harmful.)

Is publishing the records likely to have any undesired effects? (Does it break an implied contract? is it a violation of the principle of autonomy? Will living people refuse to seek medical care because they fear their privacy may be violated after they are dead? Will care providers change their documentation practices to reduce the likelihood of their patients' privacy being violated after their deaths? Will reducing documentation result in poorer care or lower reimbursement? Will lower reimbursement lead to less-accessible care, either because patients can no longer pay for it or because medical students decide against psychiatry and the undersupply problem becomes worse?)

These are complex questions and "Hey, the parents meant well" doesn't answer them.