October 24, 2025 • 30 mins
This week we review a recent survey study assessing the beliefs of fetal cardiologists and how these may influence the content and conduct of their counseling. Do most fetal cardiologists review all options including intervention, comfort care and pregnancy termination? Should there be a mandate that all do? Is it realistic or appropriate to ask a fetal cardiologist to suggest an option when they do not believe it to be a reasonable or correct choice? We speak with two of the authors of this work and they are Dr. Joanne Chiu of Harvard University and Dr. Caitlin Haxel of The University of Vermont.
- DOI: 10.1002/pd.6706
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Episode Transcript
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Speaker 1 (00:16):
Welcome to Pdheart Pediatric Cardiology Today. My name is doctor
Robert Pass and I'm the host of this podcast. I
am Professor of Pediatrics at the Icon School of Medicine
at Mount Sinai, where I'm the chief of Pediatric Cardiology.
Thank you very much for joining me for this three
hundred and fifty ninth episode of Pdheart. I hope all
enjoyed last week's repeat episode in which we discussed the
(00:37):
impact of BMI on outcomes from fontane patients. For those
of you interested in adult coin general heart disease as
well as single vetrical disease, i'd certainly recommend you take
to listen to last week's episode. For those of you
interested in getting in touch with me, it's easy to
remember my email. It's pdheart at gmail dot com. This
week we move into the world of fetal cardiology and
(00:58):
the title of the work will be reviewing is Evaluating
how beliefs among pediatric cardiology providers may affect fetal cardiac
counseling a national perspective. The first authors of this work
are Caitlin Hacksel and Christina Renei, and the senior author,
Joanne Chu. Doctor Hackxel comes to us from the University
of Vermont, doctor Rene from Harvard University, and doctor Cheu
(01:21):
similarly from Harvard University. When we're done reviewing this paper,
I'm hopeful that the first authors as well as the
senior author will be able to join us. Therefore, let's
get on with this article and then a conversation with
its authors. The work starts with some comments about the
growing role of fetal cardiology in our field, and they
note that roughly one quarter of newborns with a heart
defect will have critical congenital heart disease requiring immediate invasive
(01:45):
treatment in the first day or days of life. They
explain that when critical congenital heart disease is diagnosed in utero,
multiple specialists need to consult in diagnosing and providing prenatal
counseling to help the parents understand the diagnosis and the
implications of this. The fetal cardiologist in particular plays a
critical role in decision making support for the parents regarding
(02:06):
pregnancy and treatment options, and the authors explain that depending
upon how severe the form of heart disease, the treatment
options may include treating the defect, palliat of care, or
even termination of pregnancy. The authors then explain that despite
the fact that there have been so many important advances
in prenatal diagnosis of complex critical congeneral heart disease, there
(02:27):
is not a uniform, structured approach to prenatal counseling, and
though efforts to standardize counseling have been made, the authors
bemoan the fact that there remain significant variation and ineffective
information sharing during counseling in many centers, and they review
how this can be especially bad when a family is
relying on this counseling to inform difficult fetal decisions when
(02:48):
a fetus with critical congenital heart disease has been identified.
The authors then point to works by their same team
and by MFM groups demonstrating that attitudes on termination of
the providers can impact feedal cardiac counseling and guidance to families.
They explained that their prior work was only for the
Northeast United States, in which there were similar laws regarding termination.
(03:10):
With this as a background, the authors explained that they
wondered how provider attitudes on termination and post natal palliat
of care could affect counseling, especially in a time of
changing political landscapes. For this reasons, the authors state that
their primary aim was to assess nationally the association of
fetal cardiologists personal beliefs about termination of pregnancy and or
(03:31):
post natal palliation on counseling provided to families using a survey.
The author's hypothesized quote that variations exist in counseling options
provided to families associated with physician beliefs, as well as
the availability of different types of medical procedures based on practice, state,
and setting. The study used in an anonymous cross sectional survey design,
(03:53):
and there were fifty questions in the survey. The target
respondents were physicians who performed fetal cardiac counseling in PDAs
etric cardiology or fetal cardiology in the United States, thus
a national scope. The respondents were asked about their beliefs
or attitudes, specifically how likely they were going to recommend
post natal intervention or surgical treatment, postnatal palliative or comfort
(04:15):
care options termination of pregnancy, and they responded to statements
about pregnancies complicated by a fetal diagnosis of complex congenital
heart disease and indicated which counseling topics they consider important
to include the authors explained that the primary outcome variables
were provider responses to statements about pregnancies complicated by a
(04:35):
congenital heart disease diagnosis in utero, and also the results.
This is again a survey study, and I've gone on
record previously wondering aloud about the value of these sorts
of studies, But I do think that the findings confirm
some things about this topic that are worthy of discussion.
There were one hundred and thirty eight respondents, with sixty
seven percent female, eighty eight percent practiced in an academic
(04:58):
institution in thirty seven states represented in this study, and
fifty four percent had advanced fetal cardiology training. Interestingly, seven
percent or nine respondents had formal training in palliative care.
Of interest, the authors described decisions made by patients, and
nine percent of doctors or thirteen of the one hundred
and thirty five, reported that more than fifty percent of
(05:19):
their patients diagnosed with fetal hypoplastic left heart syndrome chose
termination of pregnancy, and one of the one hundred and
thirty two doctors queried reported that more than fifty percent
of their patients diagnosed with fetal hypoplastic left heart syndrome
chose palliative care, so basically, the majority of patients chose
to proceed with intervention. In regard to the statement quote
(05:40):
some life is always better than no life at all,
seventy one percent of the physicians somewhat or strongly disagreed
with this statement. Eighty eight percent of physicians somewhat or
strongly agreed with the statement the effects that a child
born with disabilities might have on marital or family relationships
is not a legitimate reason for a couple to consider
(06:01):
pregnancy termination. Similarly, eighty nine percent somewhat or strongly disagreed
with the statement that the effects that a child born
with disabilities might have on emerital or family relationships is
not a legitimate reason for a couple to consider palliative
or comfort care. And so, what were the main findings? First,
(06:21):
ninety nine percent of respondents felt somewhat or strongly agreeing
with the idea of providing counseling on surgical or catheter
based interventions in the short and long term for complex
congenital heart disease. Second, ninety seven percent somewhat or strongly
agreed that comfort care as an alternative was also reasonable
and third, ninety one percent thought that pregnancy termination should
(06:45):
be included as an option offered to patient families with
complex congenital heart disease. Third, and perhaps the most important finding,
and perhaps also not surprisingly, physicians that disagreed with the
statement that some life is better than no life at
all were statistically more likely to report that prenatal counseling
regarding options for pregnancy termination services at different stages of
(07:07):
pregnancy was important, and this was statistically significant. The authors
demonstrated similarly that there were statistically significant differences in counseling
provided to parents based on physicians personal and professional views
on palliad of care and termination of pregnancy. In their
discussion the author's state and I quote. This study is
the first to describe the potential effects of personal beliefs
(07:30):
regarding termination of pregnancy and postnatal palliad of care on
the practice of pediatric cardiology on a national scale. These
results expand our previous work on the relationship of provider's
attitudes on termination with fetal cardiac counseling and guidance provided
to families, which was conducted in a similar geographic region
(07:50):
in the US with consistent laws surrounding termination of pregnancy.
The authors review the guidelines of the American Heart Association
that say that effective prenatal counsel should include first accurate
diagnosis of the congenital heart disease, second, a clear and
honest description of the prognosis, Third available in utero and
post natal management and treatment options, and fourth assistance in
(08:13):
helping patients make decisions regarding what management is best for them.
They explain that the recommendations are that these be done
in a timely fashion and should allow the patient time
for questions as well as providing family support. The guidelines
suggest that during counseling, the options of termination of pregnancy
or post natal palliat of care should be discussed. The
(08:34):
authors state that there still remain gaps in counseling and
efforts to standardize the approach and create non directive counseling
is challenging, but this is important because there are studies
showing that how the parent is counseled has an important
implication for the parent's perception of their fetus's likelihood to survive.
The authors speak about unconscious racial and socioeconomic biases that
(08:57):
affect clinical decision making and counseling to parents. They mention
also that some fetal cardiologists were less likely to disclose
information regarding termination because they believed them morally improper, and
they suggest that male religious fetal cardiologists who had personal
objections to these practices were more likely in this survey
to not make available or offer termination as an option.
(09:21):
In regards to limitations, the authors speak of the subjective
self reported nature of a physician response on a survey,
meaning it does not objective data, and they do not
know how many fetal cardiologists providing fetal counseling actually exist
in the US, and so don't know what the percentage
of these individuals actually answering this survey is, and so
they can't speak to the bias that is likely entered
(09:43):
into the data based on the actual number of cardiologists
who responded, And so they conclude our study demonstrates that
physicians self reported beliefs surrounding the statement quote some life
is better than no life at all impact the counseling
content provided to families in the set of prenatal diagnosis
of single venture critical congenital heart disease. This finding highlights
(10:06):
the need to foster the creation of standardized fetal counseling
curricula for pediatric cardiology fellows, as well as to acknowledge
and follow the present guidelines that call for involvement of
palliative care teams in the setting a prenatal diagnosis of
congenital heart disease. Doing so ensures a standardized approach to
fetal counseling for all families despite an ever changing national landscape. Well,
(10:29):
this is a survey study, and we've previously reviewed the
limitations of this sort of study, which are significant. I
decided to review it this week, however, because I believe
it provides a jumping off point to discuss the notion
of counseling in general. Let me start by stating that
I am not a fetal cardiologist and so do not
have the subtleties of this specialty as part of my
job description. However, I have known for some time what
(10:52):
this paper seems to be suggesting, which is that the
person providing the counseling has a very powerful impact on
parental decisions. It is not the entire wax, but it
is important. I have come to this realization before reading
this paper, having worked with a few very prominent field
cardiologists in my career at multiple centers, and I have
seen marked differences in termination rates and the incidents of
(11:14):
highly complex heart disease even being born. That seemed to
show themselves with different fetal cardiologists. Early in my career
I worked with a very prominent field cardiologist, and in
that era, it seemed that we rarely saw complex heterotaxy
patients at my center. A few years later, in the
same exact center, it seemed that we saw a tremendous number.
Though many factors may influence this, it was not lost
(11:37):
on me that the head of fetal echo, who was
seeing the majority of the cases, had changed. I mentioned
this to the newer fetal director, and that individual told
me that they had no idea why it felt as
if we were seeing more of these patients, since he
was fairly supportive of palliative care or termination for very
complex congenital single metrical patients. I don't actually know. Thus,
(11:58):
I think this work does reach enforce the notion that
the person giving the counseling can have a very powerful
role in parental decisions. I do wonder about why it
is so important that all counseling be the same or homogenized.
I understand well that in a perfect world, all patients
should be receiving all their options, but in many arenas
(12:18):
of medicine and cardiology, we don't do this, and I
don't believe it would be viewed poorly or being wrong.
When we see a PDA patient, for example, and an
eight month old, should we be talking about PDA ligation
as part of the conversation if the PDA can be
closed with an amplanzer duct decluder. Is the cardiologist a
bad person for not mentioning surgery? I think maybe in
(12:40):
two thousand and four, when we first published the US trial,
that would have been the case, But today I'm not
so sure. I actually do mention surgery to all patients,
but can think of only one who actually did that,
and I've closed a lot of ducts. Part of the
reason is that the family decided to do this, but
part was undoubtedly related to the message they heard from
(13:01):
me and how I presented it. I'm not one hundred
percent sure that even mentioning surgery in that circumstance is
the right thing to do today, though I personally fully
believe all options should be reviewed with patients. If a
feedal cardiologist truly believes something regarding these options. I'm unsure
how we can mandate or even train people to go
against their personal beliefs, even if we don't agree with them.
(13:25):
This is I think a more complex issue than just
giving all patients all the options, because this may also
be forcing some doctors to do things that they don't
feel comfortable with, and I'm not actually sure how to
address this. Well, there's a lot to unpack here, and
so in the interest of time, I think we'll move
forward to our conversation with the works authors. Joining me
now to discuss this week's work are two of the
authors of the work. Doctor Joe Ann chu is a
(13:48):
pediatric and field cardiologist that Massachusetts General Brigham Hospital in Boston, Massachusetts,
where she is the director of the Eco Cardiography Laboratory
and also feedal Cardiology program. She's a graduate of Brown
Neversity for Medical School and did her residency at New
York Presbyterian Wild Cornell, followed by fellowship at Columbia University
for her categorical training in cardiology, and then went on
(14:09):
to do an extra year in imaging at Children's National
Medical Center. Doctor Kitlyn Hackel is Assistant Professor of Pediatrics
at the University of Vermont, where she is a general
cardiologist specializing in non invasive imaging. She's a graduate of
Sunny Downstate for Medical School and did her residency and
categorical fellowship in pediatric cardiology at New York Presbyterian Columbia University.
(14:31):
Following this, she performed a year of advanced imaging training
at the Children's Hospital of Colorado. It is a delight
to have both experts in feedal cardiology join us this
week to discuss this week's work. Welcome doctor Chew and
doctor Haxel to PDHART. I'm here now with doctor Joanne
Chu and doctor Kitlyn Haxell. Doctors, thank you very very
much for joining me this week on PDHART.
Speaker 2 (14:53):
So great, very much for having us.
Speaker 1 (14:55):
Real pleasure. I really appreciate it, real delight to have
people from two different centers both on the same podcast.
Speaker 2 (15:02):
That's terrific.
Speaker 1 (15:03):
I'm wondering if one or both of you might be
able to summarize what you believe are the three or
four most important findings of your survey study.
Speaker 3 (15:10):
Absolutely, as an introduction, I just wanted to say, this
really is a continuation of a collaborative work between myself
and doctor two at Massachusetts General Hospital and doctor Chris
Rare and I at Boston Children's Hospital. This really began
as an exploration that was spearheaded by doctor Chwo with
the support of doctor Anna Martin's who was a resident
at the time and is now a fellow at Boston
(15:32):
Children's Hospital, to really start to explore personal physician beliefs
and potential effects on prenatal counseling in the setting of
significant general heart disease, and has included investigations of fetal
and pediatric cardiologists in the New England region, followed by
work looking at MFM physicians in New England, and importantly
(15:52):
this is the first description of the potential effects of
personal beliefs regarding termination of pregnancy and post natal palliative
care on the practice of fetal and pedi after cardiology
on a national scale. I think the things that we
really would like to highlight is that in our study
we found that really most physicians reported somewhat or strongly
agreeing that providing counseling on surgical or cather based interventions
(16:15):
was important, at about ninety nine percent. That counseling on
a comfort care alternative with limited interventions was also quite
prevalent at ninety seven percent, and that options for pregnancy
termination at different stages was also relatively present prevalent excuse me,
at ninety one percent, and really should all be included
in prenatal counseling, I think to piggyback on that. A
(16:37):
nice interesting finding also was that half of physicians reported
at about seventy five percent to one hundred percent of
their parents with a fetal diagnosis of hypoplastic left heart
chose postnatal intervention. Conversely, most physicians reported that less than
a quarter of their parents chose post natal palliative care.
So while it's a choice that's made, it's not made often,
(16:59):
and I think to piggyback upon that, nearly a third
of physicians reported that more than twenty five percent of
their parents chose termination of pregnancy. So this really is
a choice that's being made at a higher rate than
postnatal palliative care. So with those in mind, we went
further to sort of ask physician respondents whether they agreed
(17:19):
or disagreed with certain types of statements to evaluate their beliefs,
and physician respondents that disagreed with the statement some life
is better than no life at all were statistically more
likely to report that pre needal counseling regarding options for
pregnancy termination was important, and statistically more likely to report
that pre needal counseling, including discussing comfort care, was important.
(17:42):
So we really found that this demonstrates that physicians self
reported beliefs may impact their counseling content provided to families
in the setting of a pre needal diagnosis of congenital
heart disease.
Speaker 1 (17:53):
Oh, very interesting, and thank you so much for that
wonderful summary. I really appreciate it. One ering as I
read the work, which I enjoyed very much, did you
guys observe any regional differences in how people respond to
the study? The study was undertaken in part because you
wanted a full national representation in your denominator. As it was,
(18:18):
I was wondering that red or blue states have more
or less personal beliefs of the cardiologist impacting their counseling.
Speaker 2 (18:28):
Thanks again, doctor Pas for having us That's a really
great question. So we actually didn't require respondents to identify
their state, nor did we do a separate analysis by geography.
But we are in the process of preparing a manuscript.
It's evaluating the association of institutional services and counseling content. So,
in other words, whether people working at institutions that did
(18:49):
not provide non intervention pregnancy options even included those options
in their counseling.
Speaker 1 (18:55):
Wow. Very interesting and more important than this era in
the United Slate States than ever before.
Speaker 2 (19:02):
Absolutely.
Speaker 1 (19:03):
Now I'm wondering in a similar vein did you notice
if age or sex of the cardiologists providing the counseling
had an impact on their counseling.
Speaker 3 (19:13):
We'll comment that most respondents were female at about sixty
seven percent, and most were really under the age of
fifty at about three quarters. But we didn't actually perform
any separate analyzes by age or gender, while there have
been previous studies that have differentiated respondents by demographics, or
study really focused on personal beliefs of a clinician and
(19:33):
how that may impact their counseling. I see, I see.
Speaker 1 (19:37):
You know, I'm going to be a little provocative in
these last two questions. You know you speak about the
notion of better training of the recent AHA guidelines for
offering more consistent counseling and I just wondered to myself,
you know, why is this considered a good thing? You know,
in other areas of medicine or even in cardiology, we
(19:59):
all have different of opinion all the time, you know,
should we put in an amplants or ASD device, should
we put in a goore device? Should we send a
patient for surgery? And even in the same practice where
one works, two different doctors might make very different recommendations.
And I was just thinking, you know, if one is
the cardiologist really thought that surgery, for example, was a
(20:20):
terrible idea for a patient, is offering it really a
responsibility of the fetal cardiologist under the umbrella of you know,
offering all options to patients. In other words, if a
fetal doctor truly believes that something is bad for a fetus,
whether or not we as a group might agree with that,
should they be required to mention it to the family.
Speaker 3 (20:42):
That's a really great question. And I think it comes
down to sort of a different question or a different
way to look at it, which is what really is
the role of the fetal cardiologist is part of our care,
providing information and support for shared decision making. And I
would argue, and I think doctor two would agree that
it really is. So if we take, for example, an
(21:03):
ASP closure, when there's a range of therapeutic options, providers
really cannot simply just name the pros and cons of
those options in a vacuum. As the physician, we hold
the expertise and our first responsibility is to provide the
family with relevant and accurate data so an informed decision
can be made as part of a shared decision making
(21:23):
process that allows the patient and the family to bring
their own beliefs and preferences to the table for consideration.
The information that we share with them really has to
be contextualized into what's important in terms of the outcomes
from the parent's perspectives, not just ours, and we really,
I think need a paradigm shift in our fetal cardiology
counseling that's grounded in the data, with the various options
(21:46):
and interventions that are available, and then put in the
context of family values to really delineate what is important
to them.
Speaker 1 (21:54):
I guess it's coming back to this recurrent theme on
this podcast, which is shared to say making and I
guess knowledge is power. I mean, be very clear, I
feel very strongly that all the options should be reviewed.
I do believe that, but I also could understand a
scenario where, you know, maybe that's not necessarily what another
(22:18):
person might believe. You know, and there are also patients
who are so medically naive that I'm sure you've encountered
many patients where you pretty much have to make the
decision for the patient or explain to them why this
decision is the right decision it really is. I don't
envy you and your difficulty of having to deal with
(22:40):
these issues. You know there is although there is a
significant there's a significant degree of agreement among the field cardiologists.
Answering the survey, you did identify differences in regards to
standardizing the approach to counseling. But do you believe that
we this will really meaningfully or even realistically sort of
homogenize the counseling if some cardiologists again have these like
(23:01):
let's say it's a strong religious, moral, political, or ethical
view on these matters of like abortion and what it
means to be alive and having meaningful life. I mean,
is it realistic of us to expect that all fetal
cardiologists will offer similar advice if it is really against
their own personal belief.
Speaker 2 (23:21):
System also a great question.
Speaker 3 (23:24):
You know.
Speaker 2 (23:25):
One of the primary aims in our work was describing
current practices of fetal cardiologists and to better understand if
and where those discrepancies are. But taking a step back
and echoing what doctor Haxell said, is considering whether our
field should strive for aligning care paths and recommendations with
the family's values and priorities. Our paliative care colleagues are
(23:47):
many steps ahead of us and practicing goal concording care,
which is discerning and aligning patients' values and goals of
care with the recommendations we provide in complex decision making,
but personal all the laveze influencing what is offered to
patients maybe discordant in supporting what a patient's values are.
And if we follow the lead of the patient, it
(24:08):
would be less about all fetal cardiologists offering similar advice
and really more about providing goal concording care and fetal cardiology.
Speaker 1 (24:17):
Well well stated, I love that term goal concord and
care a subsidiary of shared decision making.
Speaker 2 (24:27):
So there you go, all.
Speaker 1 (24:29):
Right, Well, listen, this is a rare opportunity to speak
with two true fetal experts in the contrary. I want
to thank you doctor Hackxell, doctor Chow for being so
kind to join me this week on the podcast, and
I want to congratulate you and your many co authors
and thank you so much. A great pleasure to talk
to you today.
Speaker 2 (24:47):
Same, thanks so much, Thank you for having us.
Speaker 1 (24:50):
Thank you well. As I often say, when the guests
are good, there is not a lot to say. Both
doctor Hackxell and doctor Chu made many important points, and
I think that their notion of provide fighting goal concordant
care under the umbrella of shared decision making certainly rang true.
I do not envy my fetal colleagues and the hard
work of having hard and kind conversations with families faced
(25:13):
with very difficult diagnoses, but I am heartened by the
work of doctors Cheu and Haxel trying to figure out
ways to provide the best family and patient informed decisions possible.
At once again like to thank doctor Cheu and doctor
Haxel for taking time from their very busy schedule to
speak with us this week on ped Heart. To conclude
this three hundred and fifty ninth episode of Pedhart Pediatric Cardiology. Today,
(25:35):
I've decided to try and share with you the extraordinary
experience I had just two weeks ago at the metropod
and Opera House when I saw the great American soprano
from Florida, Nadine Sierra, sing the fiendishly difficult role of
Emina in the lovely Billini opera La Sonambula. Sierra is
really at the pinnacle of her powers today and I
hazard to say that the stage is not seen as
(25:58):
wonderful an Emina since the day of the Great Klis.
Today we hear Miss Sierra sing the amazing anan Junja,
which caps the ending of the second act of the opera,
and we hear it in a live performance in Madrid
from three years ago. And if you can believe it,
Miss Sierra was even more extraordinary two weeks ago. Note
how she hits a high f at the very end
(26:19):
of this aria, which is extremely rare, and I can
vouch that she did the very same thing just two
weeks ago here.
Speaker 4 (26:26):
In New York.
Speaker 1 (26:27):
Thanks so much for joining me for this episode, and
thanks once again to our guests, and I hope I'll
have a good week ahead.
Speaker 4 (27:02):
Stay James store is steep step.
Speaker 1 (28:50):
St st.
Speaker 4 (28:58):
ST Stay later, meeting
Speaker 1 (30:03):
H
Welcome to Pdheart Pediatric Cardiology Today. My name is doctor
Robert Pass and I'm the host of this podcast. I
am Professor of Pediatrics at the Icon School of Medicine
at Mount Sinai, where I'm the chief of Pediatric Cardiology.
Thank you very much for joining me for this three
hundred and fifty ninth episode of Pdheart. I hope all
enjoyed last week's repeat episode in which we discussed the
(00:37):
impact of BMI on outcomes from fontane patients. For those
of you interested in adult coin general heart disease as
well as single vetrical disease, i'd certainly recommend you take
to listen to last week's episode. For those of you
interested in getting in touch with me, it's easy to
remember my email. It's pdheart at gmail dot com. This
week we move into the world of fetal cardiology and
(00:58):
the title of the work will be reviewing is Evaluating
how beliefs among pediatric cardiology providers may affect fetal cardiac
counseling a national perspective. The first authors of this work
are Caitlin Hacksel and Christina Renei, and the senior author,
Joanne Chu. Doctor Hackxel comes to us from the University
of Vermont, doctor Rene from Harvard University, and doctor Cheu
(01:21):
similarly from Harvard University. When we're done reviewing this paper,
I'm hopeful that the first authors as well as the
senior author will be able to join us. Therefore, let's
get on with this article and then a conversation with
its authors. The work starts with some comments about the
growing role of fetal cardiology in our field, and they
note that roughly one quarter of newborns with a heart
defect will have critical congenital heart disease requiring immediate invasive
(01:45):
treatment in the first day or days of life. They
explain that when critical congenital heart disease is diagnosed in utero,
multiple specialists need to consult in diagnosing and providing prenatal
counseling to help the parents understand the diagnosis and the
implications of this. The fetal cardiologist in particular plays a
critical role in decision making support for the parents regarding
(02:06):
pregnancy and treatment options, and the authors explain that depending
upon how severe the form of heart disease, the treatment
options may include treating the defect, palliat of care, or
even termination of pregnancy. The authors then explain that despite
the fact that there have been so many important advances
in prenatal diagnosis of complex critical congeneral heart disease, there
(02:27):
is not a uniform, structured approach to prenatal counseling, and
though efforts to standardize counseling have been made, the authors
bemoan the fact that there remain significant variation and ineffective
information sharing during counseling in many centers, and they review
how this can be especially bad when a family is
relying on this counseling to inform difficult fetal decisions when
(02:48):
a fetus with critical congenital heart disease has been identified.
The authors then point to works by their same team
and by MFM groups demonstrating that attitudes on termination of
the providers can impact feedal cardiac counseling and guidance to families.
They explained that their prior work was only for the
Northeast United States, in which there were similar laws regarding termination.
(03:10):
With this as a background, the authors explained that they
wondered how provider attitudes on termination and post natal palliat
of care could affect counseling, especially in a time of
changing political landscapes. For this reasons, the authors state that
their primary aim was to assess nationally the association of
fetal cardiologists personal beliefs about termination of pregnancy and or
(03:31):
post natal palliation on counseling provided to families using a survey.
The author's hypothesized quote that variations exist in counseling options
provided to families associated with physician beliefs, as well as
the availability of different types of medical procedures based on practice, state,
and setting. The study used in an anonymous cross sectional survey design,
(03:53):
and there were fifty questions in the survey. The target
respondents were physicians who performed fetal cardiac counseling in PDAs
etric cardiology or fetal cardiology in the United States, thus
a national scope. The respondents were asked about their beliefs
or attitudes, specifically how likely they were going to recommend
post natal intervention or surgical treatment, postnatal palliative or comfort
(04:15):
care options termination of pregnancy, and they responded to statements
about pregnancies complicated by a fetal diagnosis of complex congenital
heart disease and indicated which counseling topics they consider important
to include the authors explained that the primary outcome variables
were provider responses to statements about pregnancies complicated by a
(04:35):
congenital heart disease diagnosis in utero, and also the results.
This is again a survey study, and I've gone on
record previously wondering aloud about the value of these sorts
of studies, But I do think that the findings confirm
some things about this topic that are worthy of discussion.
There were one hundred and thirty eight respondents, with sixty
seven percent female, eighty eight percent practiced in an academic
(04:58):
institution in thirty seven states represented in this study, and
fifty four percent had advanced fetal cardiology training. Interestingly, seven
percent or nine respondents had formal training in palliative care.
Of interest, the authors described decisions made by patients, and
nine percent of doctors or thirteen of the one hundred
and thirty five, reported that more than fifty percent of
(05:19):
their patients diagnosed with fetal hypoplastic left heart syndrome chose
termination of pregnancy, and one of the one hundred and
thirty two doctors queried reported that more than fifty percent
of their patients diagnosed with fetal hypoplastic left heart syndrome
chose palliative care, so basically, the majority of patients chose
to proceed with intervention. In regard to the statement quote
(05:40):
some life is always better than no life at all,
seventy one percent of the physicians somewhat or strongly disagreed
with this statement. Eighty eight percent of physicians somewhat or
strongly agreed with the statement the effects that a child
born with disabilities might have on marital or family relationships
is not a legitimate reason for a couple to consider
(06:01):
pregnancy termination. Similarly, eighty nine percent somewhat or strongly disagreed
with the statement that the effects that a child born
with disabilities might have on emerital or family relationships is
not a legitimate reason for a couple to consider palliative
or comfort care. And so, what were the main findings? First,
(06:21):
ninety nine percent of respondents felt somewhat or strongly agreeing
with the idea of providing counseling on surgical or catheter
based interventions in the short and long term for complex
congenital heart disease. Second, ninety seven percent somewhat or strongly
agreed that comfort care as an alternative was also reasonable
and third, ninety one percent thought that pregnancy termination should
(06:45):
be included as an option offered to patient families with
complex congenital heart disease. Third, and perhaps the most important finding,
and perhaps also not surprisingly, physicians that disagreed with the
statement that some life is better than no life at
all were statistically more likely to report that prenatal counseling
regarding options for pregnancy termination services at different stages of
(07:07):
pregnancy was important, and this was statistically significant. The authors
demonstrated similarly that there were statistically significant differences in counseling
provided to parents based on physicians personal and professional views
on palliad of care and termination of pregnancy. In their
discussion the author's state and I quote. This study is
the first to describe the potential effects of personal beliefs
(07:30):
regarding termination of pregnancy and postnatal palliad of care on
the practice of pediatric cardiology on a national scale. These
results expand our previous work on the relationship of provider's
attitudes on termination with fetal cardiac counseling and guidance provided
to families, which was conducted in a similar geographic region
(07:50):
in the US with consistent laws surrounding termination of pregnancy.
The authors review the guidelines of the American Heart Association
that say that effective prenatal counsel should include first accurate
diagnosis of the congenital heart disease, second, a clear and
honest description of the prognosis, Third available in utero and
post natal management and treatment options, and fourth assistance in
(08:13):
helping patients make decisions regarding what management is best for them.
They explain that the recommendations are that these be done
in a timely fashion and should allow the patient time
for questions as well as providing family support. The guidelines
suggest that during counseling, the options of termination of pregnancy
or post natal palliat of care should be discussed. The
(08:34):
authors state that there still remain gaps in counseling and
efforts to standardize the approach and create non directive counseling
is challenging, but this is important because there are studies
showing that how the parent is counseled has an important
implication for the parent's perception of their fetus's likelihood to survive.
The authors speak about unconscious racial and socioeconomic biases that
(08:57):
affect clinical decision making and counseling to parents. They mention
also that some fetal cardiologists were less likely to disclose
information regarding termination because they believed them morally improper, and
they suggest that male religious fetal cardiologists who had personal
objections to these practices were more likely in this survey
to not make available or offer termination as an option.
(09:21):
In regards to limitations, the authors speak of the subjective
self reported nature of a physician response on a survey,
meaning it does not objective data, and they do not
know how many fetal cardiologists providing fetal counseling actually exist
in the US, and so don't know what the percentage
of these individuals actually answering this survey is, and so
they can't speak to the bias that is likely entered
(09:43):
into the data based on the actual number of cardiologists
who responded, And so they conclude our study demonstrates that
physicians self reported beliefs surrounding the statement quote some life
is better than no life at all impact the counseling
content provided to families in the set of prenatal diagnosis
of single venture critical congenital heart disease. This finding highlights
(10:06):
the need to foster the creation of standardized fetal counseling
curricula for pediatric cardiology fellows, as well as to acknowledge
and follow the present guidelines that call for involvement of
palliative care teams in the setting a prenatal diagnosis of
congenital heart disease. Doing so ensures a standardized approach to
fetal counseling for all families despite an ever changing national landscape. Well,
(10:29):
this is a survey study, and we've previously reviewed the
limitations of this sort of study, which are significant. I
decided to review it this week, however, because I believe
it provides a jumping off point to discuss the notion
of counseling in general. Let me start by stating that
I am not a fetal cardiologist and so do not
have the subtleties of this specialty as part of my
job description. However, I have known for some time what
(10:52):
this paper seems to be suggesting, which is that the
person providing the counseling has a very powerful impact on
parental decisions. It is not the entire wax, but it
is important. I have come to this realization before reading
this paper, having worked with a few very prominent field
cardiologists in my career at multiple centers, and I have
seen marked differences in termination rates and the incidents of
(11:14):
highly complex heart disease even being born. That seemed to
show themselves with different fetal cardiologists. Early in my career
I worked with a very prominent field cardiologist, and in
that era, it seemed that we rarely saw complex heterotaxy
patients at my center. A few years later, in the
same exact center, it seemed that we saw a tremendous number.
Though many factors may influence this, it was not lost
(11:37):
on me that the head of fetal echo, who was
seeing the majority of the cases, had changed. I mentioned
this to the newer fetal director, and that individual told
me that they had no idea why it felt as
if we were seeing more of these patients, since he
was fairly supportive of palliative care or termination for very
complex congenital single metrical patients. I don't actually know. Thus,
(11:58):
I think this work does reach enforce the notion that
the person giving the counseling can have a very powerful
role in parental decisions. I do wonder about why it
is so important that all counseling be the same or homogenized.
I understand well that in a perfect world, all patients
should be receiving all their options, but in many arenas
(12:18):
of medicine and cardiology, we don't do this, and I
don't believe it would be viewed poorly or being wrong.
When we see a PDA patient, for example, and an
eight month old, should we be talking about PDA ligation
as part of the conversation if the PDA can be
closed with an amplanzer duct decluder. Is the cardiologist a
bad person for not mentioning surgery? I think maybe in
(12:40):
two thousand and four, when we first published the US trial,
that would have been the case, But today I'm not
so sure. I actually do mention surgery to all patients,
but can think of only one who actually did that,
and I've closed a lot of ducts. Part of the
reason is that the family decided to do this, but
part was undoubtedly related to the message they heard from
(13:01):
me and how I presented it. I'm not one hundred
percent sure that even mentioning surgery in that circumstance is
the right thing to do today, though I personally fully
believe all options should be reviewed with patients. If a
feedal cardiologist truly believes something regarding these options. I'm unsure
how we can mandate or even train people to go
against their personal beliefs, even if we don't agree with them.
(13:25):
This is I think a more complex issue than just
giving all patients all the options, because this may also
be forcing some doctors to do things that they don't
feel comfortable with, and I'm not actually sure how to
address this. Well, there's a lot to unpack here, and
so in the interest of time, I think we'll move
forward to our conversation with the works authors. Joining me
now to discuss this week's work are two of the
authors of the work. Doctor Joe Ann chu is a
(13:48):
pediatric and field cardiologist that Massachusetts General Brigham Hospital in Boston, Massachusetts,
where she is the director of the Eco Cardiography Laboratory
and also feedal Cardiology program. She's a graduate of Brown
Neversity for Medical School and did her residency at New
York Presbyterian Wild Cornell, followed by fellowship at Columbia University
for her categorical training in cardiology, and then went on
(14:09):
to do an extra year in imaging at Children's National
Medical Center. Doctor Kitlyn Hackel is Assistant Professor of Pediatrics
at the University of Vermont, where she is a general
cardiologist specializing in non invasive imaging. She's a graduate of
Sunny Downstate for Medical School and did her residency and
categorical fellowship in pediatric cardiology at New York Presbyterian Columbia University.
(14:31):
Following this, she performed a year of advanced imaging training
at the Children's Hospital of Colorado. It is a delight
to have both experts in feedal cardiology join us this
week to discuss this week's work. Welcome doctor Chew and
doctor Haxel to PDHART. I'm here now with doctor Joanne
Chu and doctor Kitlyn Haxell. Doctors, thank you very very
much for joining me this week on PDHART.
Speaker 2 (14:53):
So great, very much for having us.
Speaker 1 (14:55):
Real pleasure. I really appreciate it, real delight to have
people from two different centers both on the same podcast.
Speaker 2 (15:02):
That's terrific.
Speaker 1 (15:03):
I'm wondering if one or both of you might be
able to summarize what you believe are the three or
four most important findings of your survey study.
Speaker 3 (15:10):
Absolutely, as an introduction, I just wanted to say, this
really is a continuation of a collaborative work between myself
and doctor two at Massachusetts General Hospital and doctor Chris
Rare and I at Boston Children's Hospital. This really began
as an exploration that was spearheaded by doctor Chwo with
the support of doctor Anna Martin's who was a resident
at the time and is now a fellow at Boston
(15:32):
Children's Hospital, to really start to explore personal physician beliefs
and potential effects on prenatal counseling in the setting of
significant general heart disease, and has included investigations of fetal
and pediatric cardiologists in the New England region, followed by
work looking at MFM physicians in New England, and importantly
(15:52):
this is the first description of the potential effects of
personal beliefs regarding termination of pregnancy and post natal palliative
care on the practice of fetal and pedi after cardiology
on a national scale. I think the things that we
really would like to highlight is that in our study
we found that really most physicians reported somewhat or strongly
agreeing that providing counseling on surgical or cather based interventions
(16:15):
was important, at about ninety nine percent. That counseling on
a comfort care alternative with limited interventions was also quite
prevalent at ninety seven percent, and that options for pregnancy
termination at different stages was also relatively present prevalent excuse me,
at ninety one percent, and really should all be included
in prenatal counseling, I think to piggyback on that. A
(16:37):
nice interesting finding also was that half of physicians reported
at about seventy five percent to one hundred percent of
their parents with a fetal diagnosis of hypoplastic left heart
chose postnatal intervention. Conversely, most physicians reported that less than
a quarter of their parents chose post natal palliative care.
So while it's a choice that's made, it's not made often,
(16:59):
and I think to piggyback upon that, nearly a third
of physicians reported that more than twenty five percent of
their parents chose termination of pregnancy. So this really is
a choice that's being made at a higher rate than
postnatal palliative care. So with those in mind, we went
further to sort of ask physician respondents whether they agreed
(17:19):
or disagreed with certain types of statements to evaluate their beliefs,
and physician respondents that disagreed with the statement some life
is better than no life at all were statistically more
likely to report that pre needal counseling regarding options for
pregnancy termination was important, and statistically more likely to report
that pre needal counseling, including discussing comfort care, was important.
(17:42):
So we really found that this demonstrates that physicians self
reported beliefs may impact their counseling content provided to families
in the setting of a pre needal diagnosis of congenital
heart disease.
Speaker 1 (17:53):
Oh, very interesting, and thank you so much for that
wonderful summary. I really appreciate it. One ering as I
read the work, which I enjoyed very much, did you
guys observe any regional differences in how people respond to
the study? The study was undertaken in part because you
wanted a full national representation in your denominator. As it was,
(18:18):
I was wondering that red or blue states have more
or less personal beliefs of the cardiologist impacting their counseling.
Speaker 2 (18:28):
Thanks again, doctor Pas for having us That's a really
great question. So we actually didn't require respondents to identify
their state, nor did we do a separate analysis by geography.
But we are in the process of preparing a manuscript.
It's evaluating the association of institutional services and counseling content. So,
in other words, whether people working at institutions that did
(18:49):
not provide non intervention pregnancy options even included those options
in their counseling.
Speaker 1 (18:55):
Wow. Very interesting and more important than this era in
the United Slate States than ever before.
Speaker 2 (19:02):
Absolutely.
Speaker 1 (19:03):
Now I'm wondering in a similar vein did you notice
if age or sex of the cardiologists providing the counseling
had an impact on their counseling.
Speaker 3 (19:13):
We'll comment that most respondents were female at about sixty
seven percent, and most were really under the age of
fifty at about three quarters. But we didn't actually perform
any separate analyzes by age or gender, while there have
been previous studies that have differentiated respondents by demographics, or
study really focused on personal beliefs of a clinician and
(19:33):
how that may impact their counseling. I see, I see.
Speaker 1 (19:37):
You know, I'm going to be a little provocative in
these last two questions. You know you speak about the
notion of better training of the recent AHA guidelines for
offering more consistent counseling and I just wondered to myself,
you know, why is this considered a good thing? You know,
in other areas of medicine or even in cardiology, we
(19:59):
all have different of opinion all the time, you know,
should we put in an amplants or ASD device, should
we put in a goore device? Should we send a
patient for surgery? And even in the same practice where
one works, two different doctors might make very different recommendations.
And I was just thinking, you know, if one is
the cardiologist really thought that surgery, for example, was a
(20:20):
terrible idea for a patient, is offering it really a
responsibility of the fetal cardiologist under the umbrella of you know,
offering all options to patients. In other words, if a
fetal doctor truly believes that something is bad for a fetus,
whether or not we as a group might agree with that,
should they be required to mention it to the family.
Speaker 3 (20:42):
That's a really great question. And I think it comes
down to sort of a different question or a different
way to look at it, which is what really is
the role of the fetal cardiologist is part of our care,
providing information and support for shared decision making. And I
would argue, and I think doctor two would agree that
it really is. So if we take, for example, an
(21:03):
ASP closure, when there's a range of therapeutic options, providers
really cannot simply just name the pros and cons of
those options in a vacuum. As the physician, we hold
the expertise and our first responsibility is to provide the
family with relevant and accurate data so an informed decision
can be made as part of a shared decision making
(21:23):
process that allows the patient and the family to bring
their own beliefs and preferences to the table for consideration.
The information that we share with them really has to
be contextualized into what's important in terms of the outcomes
from the parent's perspectives, not just ours, and we really,
I think need a paradigm shift in our fetal cardiology
counseling that's grounded in the data, with the various options
(21:46):
and interventions that are available, and then put in the
context of family values to really delineate what is important
to them.
Speaker 1 (21:54):
I guess it's coming back to this recurrent theme on
this podcast, which is shared to say making and I
guess knowledge is power. I mean, be very clear, I
feel very strongly that all the options should be reviewed.
I do believe that, but I also could understand a
scenario where, you know, maybe that's not necessarily what another
(22:18):
person might believe. You know, and there are also patients
who are so medically naive that I'm sure you've encountered
many patients where you pretty much have to make the
decision for the patient or explain to them why this
decision is the right decision it really is. I don't
envy you and your difficulty of having to deal with
(22:40):
these issues. You know there is although there is a
significant there's a significant degree of agreement among the field cardiologists.
Answering the survey, you did identify differences in regards to
standardizing the approach to counseling. But do you believe that
we this will really meaningfully or even realistically sort of
homogenize the counseling if some cardiologists again have these like
(23:01):
let's say it's a strong religious, moral, political, or ethical
view on these matters of like abortion and what it
means to be alive and having meaningful life. I mean,
is it realistic of us to expect that all fetal
cardiologists will offer similar advice if it is really against
their own personal belief.
Speaker 2 (23:21):
System also a great question.
Speaker 3 (23:24):
You know.
Speaker 2 (23:25):
One of the primary aims in our work was describing
current practices of fetal cardiologists and to better understand if
and where those discrepancies are. But taking a step back
and echoing what doctor Haxell said, is considering whether our
field should strive for aligning care paths and recommendations with
the family's values and priorities. Our paliative care colleagues are
(23:47):
many steps ahead of us and practicing goal concording care,
which is discerning and aligning patients' values and goals of
care with the recommendations we provide in complex decision making,
but personal all the laveze influencing what is offered to
patients maybe discordant in supporting what a patient's values are.
And if we follow the lead of the patient, it
(24:08):
would be less about all fetal cardiologists offering similar advice
and really more about providing goal concording care and fetal cardiology.
Speaker 1 (24:17):
Well well stated, I love that term goal concord and
care a subsidiary of shared decision making.
Speaker 2 (24:27):
So there you go, all.
Speaker 1 (24:29):
Right, Well, listen, this is a rare opportunity to speak
with two true fetal experts in the contrary. I want
to thank you doctor Hackxell, doctor Chow for being so
kind to join me this week on the podcast, and
I want to congratulate you and your many co authors
and thank you so much. A great pleasure to talk
to you today.
Speaker 2 (24:47):
Same, thanks so much, Thank you for having us.
Speaker 1 (24:50):
Thank you well. As I often say, when the guests
are good, there is not a lot to say. Both
doctor Hackxell and doctor Chu made many important points, and
I think that their notion of provide fighting goal concordant
care under the umbrella of shared decision making certainly rang true.
I do not envy my fetal colleagues and the hard
work of having hard and kind conversations with families faced
(25:13):
with very difficult diagnoses, but I am heartened by the
work of doctors Cheu and Haxel trying to figure out
ways to provide the best family and patient informed decisions possible.
At once again like to thank doctor Cheu and doctor
Haxel for taking time from their very busy schedule to
speak with us this week on ped Heart. To conclude
this three hundred and fifty ninth episode of Pedhart Pediatric Cardiology. Today,
(25:35):
I've decided to try and share with you the extraordinary
experience I had just two weeks ago at the metropod
and Opera House when I saw the great American soprano
from Florida, Nadine Sierra, sing the fiendishly difficult role of
Emina in the lovely Billini opera La Sonambula. Sierra is
really at the pinnacle of her powers today and I
hazard to say that the stage is not seen as
(25:58):
wonderful an Emina since the day of the Great Klis.
Today we hear Miss Sierra sing the amazing anan Junja,
which caps the ending of the second act of the opera,
and we hear it in a live performance in Madrid
from three years ago. And if you can believe it,
Miss Sierra was even more extraordinary two weeks ago. Note
how she hits a high f at the very end
(26:19):
of this aria, which is extremely rare, and I can
vouch that she did the very same thing just two
weeks ago here.
Speaker 4 (26:26):
In New York.
Speaker 1 (26:27):
Thanks so much for joining me for this episode, and
thanks once again to our guests, and I hope I'll
have a good week ahead.
Speaker 4 (27:02):
Stay James store is steep step.
Speaker 1 (28:50):
St st.
Speaker 4 (28:58):
ST Stay later, meeting
Speaker 1 (30:03):
H
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