Wednesday, September 07, 2011

What would you do?

This is a story from many years ago, a couple of decades back:

An OB/GYN doctor performed a hysterectomy on a patient in her 40's for irregular bleeding and other problems. She had a long history of infertility and had finally given up. Given this history and the bleeding, the doctor did not do a pregnancy test prior to the surgery.

The pathologist found a tiny fetus in the uterus. The OB/GYN was devastated to learn of this.

It was eventually decided that it would do more harm to her and her family to disclose the fact than not to, since it was an irretrievable situation.
Your call.  Was this the right decision, for that era?  Would we handle this kind of case differently today? Please comment.


@ftvelasco said...

From Twitter:

I can't comment on how this should have been handled "decades ago" but the current era compels full transparency.

@kordmiller said...

From Twitter:

Yikes, that's a tough one. With today's issues it doesn't serve either party to tell and puts the hospital/doc at too much risk.

Paul Levy said...

From Facebook:

Gretchen: I'm usually on the side of full disclosure to the patient but what good could come of it in this case. It would be like rubbing salt in a wound.

Vicky: My immediate response, which may be tempered as I see other responses is this: the woman would most likely be dealing with grief, which is tough enough, but if you add to that the admition of this terrible error, then it's likely that some form of hate would also ensue. Grief is difficult but hate is the absolute worst poison. There are many things we don't know about our own lives, including conception that takes place and is spontaneously aborted but appears just like a common menstruation. I think it's better that we don't know every little thing about our existence. It might be just too much to bear (bare?). Your turn to correct my vocab Paul :)

Ann:Right decision. If it were me, it would put me over the edge, and given her history of infertility I cannot imagine her response to the possibility of having lost a viable(?) fetus.

Peter: Also seems like a case of malpractice. The motives guiding the decision from the doctor's side are conflicted; who is really being protected here? This should be referred to hospital ethicist at a minimum, but I would lean toward disclosure.

Maryanne: Hmm! Having gone through infertility myself, I'm having difficulty here. Back then, much less was known about the variety of infertility complications, too. It's possible that this woman often suffered miscarriages before she even knew she had conceived, and perhaps that is what would have happened even with this. I strongly believe in honesty and in accountability, and having gone through infertility and other gynecologic issues, I know how important safety steps are to make sure that there is not a pregnancy before certain procedures.

Today, I think there would definitely need to be an admission of wrong on the part of this physician for failing to administer a pregnancy test. Even though it is a hard call and would be horrible, I have to go with transparency and truth. However, I might temper it with further information on the quality of the fetus and any knowledge that could be obtained about the likelihood of a viable outcome had this tragedy not occurred. The answer about it in terms of that era would be even more of a challenge for me given that, as stated, I just think we are so much more knowledgeable about so many things today. It would just be more horrible and look worse if the truth were not revealed and then somehow, it was later found out anyway.

Laurie: Medicine is not miracles and mistakes happen. What would be the benefit of telling the patient? I think we have come to a place in the medical world where decisions have to be made as to whether or not to treat/investigate or not. Many times we undergo medical care that may prolong life but what is the quality and what is the cost? I am grateful for all the advances we have today but am not sure they are always the right way to go. I do believe there should have been some additional diagnostics done prior to the surgery but there is no benefit in looking back now; at least not for that patient.

Anonymous said...

As a former infertility patient myself, I think I would have not wanted to know.
But it raises a question pertinent for today - when is disclosure harmful? Is there ever a time when you want your doctor, perhaps supported by an ethics committee, to 'play God'?


Nick Dawson said...

Tricky indeed, thanks for sharing Paul.
While the case deserves some serious introspection and consideration, my initial take is that an omission does not redact the error. In other words, failing to disclose the error does not make it go away.

I deeply appreciate the interest in the patient's emotional wellbeing. Frankly, the thought of having to tell her churns my stomach. But don't we learn in kindergarten that doing the right thing isn't always easy?

Finally, isn't there something to be said for documentation? For instance, won't the findings be in the pathology report and - if ePatient Dave has opened our eyes to anything - doesnt that data actually belong to the patient? (even if I'm taking liberties with Dave's stance, I would make that argument on my own). If I were the patient, I'd rather hear it directly rather than read it in a path report later.

Bill said...

From Facebook:

One can argue both ways on this. The woman clearly had no idea that she was pregnant and informing her will not change the fact that she lost her child. How she will respond emotionally is not known but I would favor disclosure. The great issue in my mind is what the doctor tells his colleagues. This is a clear mistake on the doctor's part, though one that many of his colleagues might also have made. It is important that his colleagues recognize the mistake and learn form it so that they never make the same mistake in their practices. Without disclosure to the patient, I fear that disclosure to others in the hospital would be minimal and the teaching moment would have been lost.

wrinkledman said...

The people with the courage to recognize and acknowledge failures are those we need most. The ethical landscape has changed because what is wrong today was wrong then. Would the patient's knowledge make her life more difficult? We can't answer that question. We do know that some people turn the most horrific events into opportunities for growth and enlightenment.

EricM said...

Could the "irregular bleeding and other problems" be caused by the pregnancy? Seems to me that the doctor, in a very unusual situation, made a mistake. Let's assume most doctors would have made the same mistake. So isn't disclosure and transparency the key to keying a process improvement and making sure this doesn't happen again. I'm assuming that this is possible. My own view is that the patient in this instance is worse off knowing, but that avoiding future mistakes justifies the trade off.

76 Degrees in San Diego said...


Nick Dawson said...

Question for others - I'm not knowledgeable about clinical protocols. Would a pregnancy test be considered a normal and expected text before a hysterectomy?

Depending on the answer, is an error by omission vs an deviation of protocol different? For instance, I don't fault my knee doctor for not checking for brain cancer. But I might fault them for not doing an MR scan of the knee before a surgical repair. (not the best example...but...)

Christine said...

I vote for transparency. As others noted, the woman's response to this knowledge should not be assumed nor be the major factor in whether to reveal this information.
It's not just an old story -- a colleague of mine went to her OBGYN to unblock her fallopian tubes to help her conceive. She told the doctor she might be pregnant, but the doctor was in a hurry to get the procedure done, and even though my colleague and her husband are PhD scientists, were intimidated by the physicians' claims that the procedure needed to be done now. It also was later revealed that my colleague, was in fact, pregnant. OBGYN as a discipline has a long history of ethical violations, and demonstrated harms to women's health (as well as some benefits, of course). Cesareans and hysterectomies are the 1st and 2nd most common operations in the US. Most are unnecessary. If OBGYNs learn from these stories, and listen to women in their care, maybe things will change for the better.

Anonymous said...

It may have *seemed* like the right decision for the era, but lying by omission was wrong back then and it's still wrong now.

I would guess the doctor just assumed she wasn't pregnant, given her history, and therefore decided a pregnancy test wasn't necessary. It is never safe to assume anything. At the very least, this seems to underline the importance of having protocols in place (and following them) before undertaking a hysterectomy.

Why the assumption that the patient somehow wouldn't be able to handle the news? This strikes me as a rationalization for nondisclosure, wrapped in the guise of concern for the patient. And the implication that the doctor knows better than the patient what she might want in these circumstances is a form of patronizing condescension.

Why should it make a difference if the damage is irretrievable? The logical extension of this is to not tell the patient you amputated the wrong leg or removed the wrong kidney, since, gosh, the damage is done and we can't fix it.

Patients can and do obtain copies of their medical records. Or sometimes a consulting physician reads the record and spills the beans to the patient, unaware that she hasn't been told. Being blindsided like this ultimately does far damage than being truthful up front.

This is a tough call, and it's very painful, but as someone who experienced a medical injury several years ago and still has never been told the truth about how it happened, I vote for honesty. In the short run it may be difficult and painful, but in the long run most patients will appreciate that you respected them enough to give them the truth.

Anonymous said...

The last post is really important. How many one-off decisions do we make in medicine - or anything? Answers go from 'this person' to 'infertile women' to all patients submitted to the imperfect knowledge of humans.

The more prone we are to individualizing rules for cases, the less likely we are to learn from any of them (they are all unique, obviously). But we are also less likely to build systems and mechanisms to guide our decisions. The first answer should have been to seek ethical advice. The second to take the responsibility to ask "How often does this happen?" and the third, "What can we do to prevent it?"

But the fourth, most often forgotten, is to recognize that we do many things with the assumption that we know things that we don't. Much maternal and child medicine is riddled with iatrogenic practices. Most cesaereans and epidurals are because we give birth lying down in beds and on a hospital's balance sheet, we have poor breastfeeding outcomes because we schedule babies by a meter rather than the physiological mechanisms of synchrony, jaundice because of poor lactation and swaddling, poor sleeping and digestion because we do not carry our babies. Then we design one-off cures for designs that remains at odds with broader biology. While generating tremendous feats for health (e.g. vaccines), medical paternalism and technology also imposes incredible costs on people, often women.

We must be transparent because it is not our bodies, but those of others. But transparency buys us little if we are tweaking protocols. It buys a better science if it compels us to find transparency in the fundamental assumptions that drives our work. It would mean that we spend as much time learning about variation as we do about standardization.

Leigh Hamby said...

Once you determine (unilaterally) that disclosure harms the patient, you start down a slippery slope of being the judge of what should be disclosed and what should not be. That was the rationalization about non-disclosure historically. To me disclosure is about the truth. The ramifications of the truth can be unique to each recipient (perhaps the patient always blamed herself for not being able to get pregnant and now somehow could feel "exonerated" - who knows)

Dr. Lachlan Forrow said...

Not telling a patient a difficult truth and saying that that is for the patient's own benefit is far too often a rationalization of a bad decision that is more physician-centered than truly patient-centered.

There are two categories of patient-centered values at stake here: (1) values that cluster around terms like "patient autonomy", "patient's right to know", "respect for patients"; etc.; and (2) values related to "the patient's welfare", "beneficence", "non-maleficence" [="do no harm"], etc. The default for us at BIDMC is full transparency/disclosure, and so any departure from that would need to have strong justification. The only truly patient-centered justifications for not informing her would be (a) there is clear and truly convincing evidence that she herself would not want to be told; and/or (b) there truly is no possible way to be open with her without seriously harming her.

How a question is framed shapes the reasoning process and often the answer. A fundamental error in much moral reasoning is to pose a question or "dilemma" in terms of competing values ("autonomy" versus "beneficence"/"do no harm") and then argue which one should prevail. But since both are "values", the preferred course is always to find a way to uphold/promote both "values", rather than choosing between them. So I would not pose the question as "should we tell or not?", which makes it too easy to answer "not". A better initial question would be "What will it take so that in our communication with the patient she is not harmed by learning this painful truth?" The answer will include addressing exactly what the patient is told, how, by whom, and with what supports before, during, and after.) I suspect that with skilled and experienced clinical staff a "communication plan" could be formulated that would simultaneously meet high standards of both "respect for the patient's autonomy/right to know/etc" and "concern for the patient's well-being". Then the ethical dilemma or "conflict" doesn't actually exist anymore -- win-win.

As a practical matter, if in 2011 this came to me and the BIDMC Ethics Support Service, I/we would be particularly interested in two things to help me/us support the patient's caregiver(s) in deciding what to do. First, the patient's own perspective about what she would want, but of course that's likely impossible to get without giving away what the issue is. So for that I would want patient/family "surrogates" to be part of the reasoning process, and we have people involved in our BIDMC "ethics programs" who have that role (though not yet enough!). Second, I would want masterful, experienced communicators regarding "giving bad news" and "disclosing medical errors", and masterful, experienced clinicians in the areas of ongoing psychosocial support for people dealing with painful realities. We have those, too, in Social Work and elsewhere.

Bottom Line: It is hard for me at BIDMC in 2011 to imagine that we would not inform the patient. I also suspect that decades ago under Mitch Rabkin's leadership here the answer would have been the same if the question were posed at a high enough institutional level to get serious thought, not just the then-all-too-conventional reflexive rationalizations for non-disclosure.

Paul Levy said...

Thanks. To be clear, this case was not at BIDMC.

Paul Levy said...

From Facebook:

I am not familiar with the use of the criteria of whether it is beneficial to the patient to disclose. Is this a term of art? This story is really tough but I really don't understand the option to withhold the information. I also appreciate DiOrio's point above that it is possible her infertility pattern included miscarriages - and that this fetus was not going to reach maturity - but to me that is really irrelevant to the doctor's obligation.

Mary Ellen: I am sharing on James's Project wall and my own. That should bring some candid responses from moms who have lost children at every stage of their lives.

Dr. John said...

Part 1:

Are doctors technicians? If so, full disclosure is the standard. The patient chose to have the procedure. Choice is responsibility: the doctor shares the responsibility; the grief, and accountability, should be shared openly.

On the other hand, are doctors, today, not also the de facto priest and rabbi? It's rarely discussed, and most doctors do not consciously assume the role, but by default in our often secular society, doctors must sometimes assume the task. As such, they share the role with other priests in society. Was the patient a woman of faith, of practicing faith? If so, the doctor needed to call her rabbi/priest/minister/pastor et. al. and consult as to what to do. Death is real; it is important. It is a matter of the soul.

If the patient was not a person of overt faith, that leaves the doctor more or less alone to figure out whether to inform her of the tragedy or not.

Doctors receive a great deal of information in confidence, and the confidence has the same quality as a confession given a priest. It often relieves the patient of guilt, which is useful in the patient's treatment. The doctor accepts the burden. Which helps to illustrate the purpose of transparency. On the one hand, transparency can lead to accountability, in which case it is helpful (and too often lacking). But if transparency on the part of a provider serves only to atone their personal guilt, and for the patient only causes pain, is it correct to say it is always necessary? I'm not sure.

The moral imperative, the stake in the ground that defines ethics, is to treat others as sacred beings, manifestations of the divine, and not as objects to be used for one's own end. A brief story: The brother of a very good friend of mine died recently. The man was in his sixties and had led a hard life. He was a recluse, and his death unexpected, an MI or stroke when he was alone. He had lived far from his family. He was found only many days after his death. This man's mother is an elderly woman with dementia who is cared for by her adult daughter. The family called me to ask if mother should be told of her son's death. We spoke of it. Since the elderly mother forms no new memories, telling her would only cause her transient grief... but she would need to be told again, and again, and again, and thus her grief would be recurring and fresh and painful, day after day. And what purpose would that grief serve? Grief is a journey, but she would be condemned to begin it again daily. A fate for a tragic god in a Greek myth perhaps, but for the elderly mother of a good friend? Do we value transparency over such pain? Why on earth would we do that? Why cause others to have pain when there is no necessity of doing so, no possible benefit? Is that not the definition of evil, of what we seek to prevent?

I agree it is not simple. But that is the point. The opposite of transparency is deception, and the latter is a terrible ethical failure. But transparency is a tool, a means to an end, and not the end itself. People are the end, and people should never be made the means to another person's end. The answer depends on the soul of the patient, and on a doctor's courage to do the right thing, and take their decision, and guilt, to their grave if necessary. Transparency must serve the patient in this situation, and not the provider. And for the patient who had the unfortunate hysterectomy, transparency seems to serve the provider's interest more than the patient's. I find that worrisome.

Dr. John said...

Part 2:

Society would have doctors be technicians. And many doctors are. But patients often want, and need, a priest and rabbi, a spiritual adviser and consoler. And some doctors are. The analogy, of course is awkward; the Church keeps secrets too, and its lack of transparency has undermined its credibility to the point of my neglecting my own spiritual foundation. Which, oddly enough, makes priests (in confessionals or exam rooms) all the more in demand.

By the way, I learned very early in my career that rule number one is: "If they might be pregnant, they are pregnant until you prove otherwise; don't listen to their denials, just run the test." She was a seventeen year old daughter of a city luminary, innocent as the driven snow, and denied everything. I learned ethics on the job (and shortly after leaving Beth Israel, where I did a fellowship, long, long ago.)

Your blog is extremely valuable. I greatly appreciate your work, and quote your thoughts often in my own work.

Paul Levy said...

Thanks so much, John. That was elegantly stated.


Dr. Lachlan Forrow said...

1. Rules/standards for family members/friends are different from those for professionals and patients.

2. You can't generalize inflexibly, whether about applying "transparency standards" or anything else. That's part of why "ethics" at BIDMC is the "Ethics Support Service" -- it will almost always ultimately be the individual physician responsible for the individual patient who makes the final call, and takes personal responsibility (with "support" from ESS and the medical center). [Only "almost always" because (a) there are some decisions that are outside the bounds of BIDMC's values, and we wouldn't knowingly let our staff make them; and (b) the patient is actually almost never just the individual physician's patient; s/he is also a patient of the medical center...]

David said...

Tough question, but I will say this. You can never be ashamed of telling the truth, no matter how hard. Also, medical information, lab results, don't just disappear. I realize that you could make a strong case for either side, and as an expecting father currently, I don't know if I could handle that type of news if I were in the same situation. I will say this, people are very complex, and emotions are very unpredictable at times. A women suffering from infertility may draw comfort from knowing that her body was at least able to produce human life, and that she wasn't a failure. A stretch, I realize, but you just never know. I think that there are more to people than blood and bones, and withholding that truth (and I realize that it's with the best of intentions) may in the long run do more harm.

Pranab said...

From Scepticimia:

Here is my take on the situation:

Given the history of the patient, omitting the pregnancy test was not too heinous a crime. Her age, her failed attempts, and her giving up on trying to get pregnant may serve as a defense for the doctor but none of them are going to absolve him of the responsibility of doing the test. So, no matter how small, there is liability on this ground for the physician, especially since doing a test to determine pregnancy status is not at all time consuming or resource oriented.

Since I am not aware of the time in which this clinical encounter occurred, it is difficult to note whether an ultrasound was done or not prior to the surgery. Nowadays, it would be a pretty routine investigation (like doing the pregnancy test) to do prior to set the patient up for operating, and a small fetus would be instantly appreciated on the scan. If the scan was not ordered, it is the responsibility of the attending ObGyn physician to justify why it was not done. If he can prove that there was imminent danger to the life of the mother following the bleeding, an emergency hysterectomy would save her, and for that purpose, a tiny fetus could be sacrificed. On the other hand, if the scan was ordered, then the onus lies with the radiologist to identify the fetus and the error in locating the fetus would absolve the ObGyn from the responsibility and land it squarely on the shoulders of the Radiologist.

The most important thing that is objectionable in the whole incident was the willful witholding of information from the patient. In doing so, the doctors acted paternalistically not in the interest of the patient and her family, but in the interest of saving their own careers. Imagine the throwback from the media if such a case came out. Imagine the impact on the careers of the related doctors – they would be over. The media would publicly prosecute them and persecute them until they lost the right to practice medicine.

It was a different era, and one wonders whether the reaction of the doctors would be the same in this day and age. Probably it would be. Probably even fewer people would know about it and given the wildfire phenomenon of viral spreading of information, such a news would have travelled across the globe before one could say abortion!

The whole incident reeks of cover up and that too, motivated for personal gains. This is what I think about it

Tim Timmerman said...

I'm a little late to this topic but when I pinged my RN nurse she said that their EMR doesn't allow a woman to have surgery without a pregnancy test.

So in the lean approach, isn't it better to look at the current situation from a process standpoint rather than an ethical one and eliminate the possibility of having to make a difficult ethical decision?