Category Archives: Goings On

Speaking, signings, events, author appearances, things to do with No Ordinary Boy

A dilemma for sonographers, and considering the greater good

I was on another panel last week. An annual gathering of sonographers (ultrasound specialists), nurses, radiologists and other imaging professionals. This conference covered a lot of ground, with sessions called ‘Face’, ‘Spine’, ‘Placental Function’ and other prosaic-sounding topics that didn’t leave much to the imagination. I didn’t attend these sessions, but somehow I can picture how they went.

The session in which I participated was titled ‘Sex and Ultrasound’ – sex, in this case, meaning gender. (I was amused to note we were slotted somewhere between ‘Diagnosis and Management of Limb Anomalies Which are not Part of a General Skeletal Dysplasia’ and ‘Thorax’.)

It was a small panel: me, a lawyer/bioethicist and a diagnostic radiologist; and a large crowd of several hundred people. The panel was assembled in chairs in front of the whole group to discuss Sex and Ultrasound as it pertained to a rather inflammatory news item (published in the Toronto Star) that had been making the rounds since last year.

The gist of the news report was this: some Toronto area hospitals were implementing communications policies which disallowed ultrasonographers from revealing the sex of their fetus. Instead, the patient would need to wait until she saw a physician, who had seen the written report signed by the radiologist. The journalist then noticed that, “whether by coincidence or by design”, these hospitals were situated amongst large concentrations of Southeast Asians, a cultural group thought to perform ‘female feticide’–aborting a fetus because it is female. The suggestion then, is that Toronto hospitals were making moves to combat this barbaric problem which immigrants have brought over with them.

(A follow-up editorial calling out this racism is here.)

Starting the session with this news item was intended to provoke and irritate. Fair enough. It was a conversation-starter, providing the backdrop for a number of questions posed to the audience. Loosely paraphrased:

Do the audience members’ hospitals have a communications policy in place? Do the audience members feel comfortable talking to their patients? Do the audience members tell their patients what they see on the screen if it’s good news? If it’s bad news? Do the audience members tell their patients the baby’s gender but not other details? And more of the like.

This seemed an odd discourse to me. Many pregnant women have had ultrasounds where the person scanning has pointed out fingers, toes, a healthy beating heart, and if it’s there and we want to know, also a penis. I wouldn’t have guessed it was a matter of debate.

During the panel discussion I learned about some of the complicating factors:

Sonographers can ‘observe’ but not ‘diagnose’

The distinction between what you see and what you conclude because of what you see is an important one. Sonographers are allowed to make observations but not diagnoses. So one of the debated points was whether the sex of the fetus was an observation or a diagnosis. Generally speaking most agreed it’s an observation–although things get murky if patients are getting abortions because of these off-the-record remarks.

The patient can generally tell what’s going on anyway

In the olden days before real-time scanning, the patient wasn’t immediately privy to the scan images or findings. The technician was essentially a specialist photographer, who would capture the images and send them to the radiologist. The radiologist would then write a report and send it to the patient’s doctor – whose receptionist would phone the patient and tell them the news right then, or would schedule the patient for an appointment to discuss the results.

As technological advances made scanning more transparent to the patient, the sonographer, as yet unfettered by hospital bureaucracy, might freely chat with the patient and relay what he or she was seeing. Usually it’s a happy exchange, but what if the scan results aren’t as planned? In my case, the horrific discovery by the technician of Owen’s fetal hydrops rendered her speechless and insensitive, caught in her own discomfort. She wouldn’t look at me, turned the screen away from me and told me she couldn’t talk to me—all the while making a digital audio recording of the scan, narrating the abnormalities into a microphone which I could easily hear.

Real-time scanning has changed the nature of the testing. The patient can see what is happening, on the screen and on the technician’s face. She can ask questions, demand answers, look the unfortunate scanner in the eye while he tries to hide his panic when he can’t find the heartbeat the patient so eagerly wants to see.

If information is wrong, the hospital or clinician can be liable

If a patient makes a decision based on the unconfirmed ‘observation’ of a sonographer, and the observation proves to be wrong, the hospital may find itself at the wrong end of a lawsuit it perhaps felt could have prevented. So rather than properly train the sonographers to have uncomfortable conversations (which, by the way, many can do quite capably), some hospitals and clinics wonder if they should ‘policy’ their way out of risk by not allowing them to talk.

[hr]

So back to the matter at hand:

The discussion was focused on gender, and whether or not sonographers should tell patients the sex of their baby if, based on their observations and experience with the mother, they suspect female feticide.

Many in attendance (including the presenters) easily identified the racist undertones. But, the discussion brought out points that are worth exploring. So let’s unpack some of the details, and explore why the answer to the above question is an unequivocal yes.

Rights of the fetus

In Canada, women do not need to explain their reasons for wanting an abortion, and do not need to justify having had one.
In Canada, a fetus has no legal status as a person. A live baby of course does, but a mother or physician cannot be charged with murder (for example) if they participate in an abortion.

For these reasons alone, it should be obvious that a woman cannot be prevented from having an abortion or be granted fewer rights because someone finds a suspected or (even known) reason for wanting an abortion distasteful.

Rights of the patient

Unfortunately, we don’t have a charter of patient rights in Canada. However in Ontario we do have the Ontario Health Care Consent Act, which protects our rights to refuse or consent to treatment. There is also legal precedence to support that healthcare providers have a variety of obligations to the patient, including right to information. And most professional colleges and governing bodies in healthcare acknowledge the patients’ right to access their own medical information. I realize as I write this that my knowledge of patient rights legislation is quite low… If anyone wants to chime in about patient rights in Canada as it pertains to access to information (whether documented or not), please do!

Reproductive and human rights

It’s not lost on me that we’re talking about a 100% female patient population. One could say it is a population which the ‘powers that be’ wish to influence and subjugate for what is perceived to be a greater good. I probably don’t have to throw a rock too far to hit examples of how this misguided ideal can go horribly wrong.
Historically, the arrogance of medicine and healthcare has had ill effects for men and women alike. Lobotomies, forced sterilizations, over-medication, institutionalization, over-surveillance… This particular issue–fear of female feticide and poor resulting public policy–is not out of place in this unfortunate narrative.

Just when I thought everyone was on the same page

My last comment in the panel discussion was to say that fear of litigation (which had been another related topic) and the desire to socially engineer all of humanity were two different things and should be discussed as distinct issues. They could probably do something about the first problem, but the second? I thought not. The scan in the ultrasound clinic is not the time or the place to express one’s distaste (or act upon it by withholding information) for a patient’s motives, especially if she is behaving within the bounds of the law.

This prompted a question from the audience: “But what if,” she said, “what if I know for sure that the patient is going to have an abortion if she finds out she is going to have a girl? If I tell her, wouldn’t that be like handing her a loaded gun? Maybe I shouldn’t tell her?”

I answered in a way you may have guessed (“Yes you should, and it’s none of your business”) and the other panelists had similar remarks. But I felt for her and her internal conflict. With technological progress comes some of most difficult moral dilemmas of our time.

“Bias and influence in decision-making”, Genetics rounds

5 Replies

I gave a talk last week at Sick Kids hospital here in Toronto, for their Genetics grand rounds. I enjoyed myself immensely–the audience was highly engaged as listeners and I had enough time to build out some proper discussion points, beyond just telling our narrative.

I am including my slides below. I spent the first 20 minutes sharing our story (notice the familiar photos!) then moved on to share some reflections on the nature of influence in decision-making. There are a couple of points here that really deserve their own essays–will return to this topic later this week and share more fully. Here were the main points:

Disability is treated as disease

This speaks to the prevailing perspective in childhood disability that one can ‘overcome’ if he or she just perseveres–in most cases of severe disability, this is simply not true.
Adult disability does not seem to have this same inspirational tone. Rather, many adults with disabilities I have met have integrated their disability as part of their identity and do not see it as a disease to be eradicated or overcome. For some, this idea (of ‘fixing’ their disability) is offensive. But, there is no room in the childhood disability industry for this perspective.

Advisors generally have no lived experience with the condition they are treating

An observation, not a complaint. Seeing many cases in clinic is not the same as living it. The issue here is that often the only advice a family gets is from people who haven’t lived the journey. I don’t believe this can possibly offer enough perspective. Why doesn’t healthcare support connecting new parents with much older families, or adults who have the same condition as their child?

Medical information is perceived as complete, true and enough

I suspect that the medical/research literacy of most new parents is fairly low. What is good information? What is valid? Who funded the research upon which this study is based? What bias is the physician bringing to this conversation? What additional studies disproved this idea?
In my experience, clinicians have been as forthcoming and well-intentioned as they can be–insofar as their own personal maturity and level of self-awareness allow. There is no unbiased truth, but it sure can seem the opposite is true in clinic.

Impressions and memories change over time

I spent a long time on this one and can’t cover this in a few bullet points. In a nutshell: often, what mattered once doesn’t matter anymore. Or, what didn’t matter then matters now. And, how things look today will look different tomorrow.
There is a tendency in moments of medically-based decision-making to over-focus on the only thing healthcare can provide: medical information. Looking back on my life with Owen, none of the physical disabilities or required medical treatments are what I think about or remember vividly now.

Correlation does not imply causation

Social statistics are often mentioned in the prenatal ‘talk’–financial hardship, divorce rates, declining health of the caregivers–presented as a cause and effect relationship to having a child with disabilities
Divorce rates: shared as though this ought to be a factor in decision-making, or is at least an indication of how difficult life will be. Problem 1: Who’s to say that separated families are not now better off? Perhaps a life of disconnection and misery awaited them if they stayed together. Regardless, clinicians should not be trying to socially-engineer the lives of their patients. Problem 2: Higher divorce rates do not necessarily mean it’s because the relationship ‘can’t handle it’. Another possibility: challenge illuminates weakness and strength, accelerates maturity, fast-tracks inevitability. Divorce is a mature decision, not a random surprise. Seems like an irresponsible leap to threaten divorce (presented as neutral fact) while parents are making neonatal continuation/termination decisions.

Ethics of Fetal Intervention, and another big idea

15 Replies

I was invited to participate in a panel discussion yesterday, at Mount Sinai Hospital’s bi-annual Fetal Update conference (which continues today). I was there as a parent, joined by 3 ethics professionals, a fetal therapy physician, and a social worker. We were part of a session called “Ethics of Fetal Intervention” which represented a noticeable diversion from the rest of the program. (To illustrate: we were slotted between sessions on Neural Tube Defects and Cardiac Lesions.) The 100+ audience included sonographers, radiologists, obstetricians, nurses, and other clinicians involved in antenatal assessment and diagnosis. They were an interested and engaged crowd – made for a lively discussion with lots to digest afterwards.

I wish I had recorded the session! Instead, a summary and my thoughts of one of the discussions:

A dilemma:

What exactly constitutes informed consent? At what point can a clinician believe that the patient is fully informed and has what she needs to make a decision? How much information is enough? I was moved by the dilemmas and uncertainties expressed by the audience – they do their best yet know there are shortcomings.

A story I shared:

At the time we were making decisions about Owen’s fate in utero, I was focused only on whether or not the risk was worth the intervention. It was a relatively easy decision – if we didn’t intervene, he would likely have died. So we proceeded.

We didn’t know about his future disabilities at the time. If someone had said, “Your son will never walk, talk, hear, hold up his head, eat on his own, will always need full care and will probably die before he reaches his teens” - I would likely have aborted, or at least not intervened and shifted to palliative care.

However, if someone had said, “You are eventually going to reach middle age having lived an extraordinary experience that will change your world view and make you a better person. You will do more than just survive – you will embrace your son and his life and even his death and you will be grateful that you took this path” – well, I may have hesitated, but then would have moved forward with more confidence and less fear.

The point I was making:

My 28-year-old self couldn’t have imagined how my 42-year-old self would mature and transform. The medical information, which I perceived as complete and enough to go on, offered nothing to predict the realities of what life might hold.

With the passage of time my recollections of life with Owen have little to do with medical details and trivia, hospitals and interventions – and everything to do with our relationship, our community and our experiences together.

My conclusion?

Those with lived experience (which almost no one in the neonatal clinical setting is likely to have) can offer the most revealing glimpse of what life might be like, should the parents make certain decisions.

A possible solution:

Bring together a diverse panel of parents to discuss the decisions they made and the consequences of those decisions – including those who chose to terminate their pregnancies. Perhaps create a series based on diagnosis, prognosis or whatever else. There can be additional panels of teens and adults ~~who survived their parents’ decisions~~ with disabilities and diagnosed conditions, as well as panels of clinicians discussing their own decision-making processes regarding how they present information, communicate with families, and their feelings about it.

Record the sessions and offer the downloads/DVDs to deliberating parents. Encourage them to wonder how their future selves might look back on this terribly confusing time.

A project for me?

I just might take this up. What do you think? Would you participate?

——-

A bit about Mount Sinai:

Mount Sinai Hospital in Toronto is a world leader in fetal therapy, a discipline that provides life-saving or otherwise impactful interventions to fetuses (and moms) in distress. We’re no strangers to their Fetal Medicine program – Owen’s interventions were performed there. He was also delivered at Mount Sinai and lived in neonatal intensive care for 3 months. I have a deep respect for the staff of the Fetal Medicine Unit – I have known some of them for 15 years now and have witnessed first-hand their ongoing efforts to continue improving services and communication – both of which, for the record, are unparalleled.

Speaks volumes about their integrity that I would be invited to talk candidly about my experiences and reflections in an open forum.

Summer is over

1 Reply

I’ve been quietly toiling away on a few things recently, listed below. I wish there were more hours in a day! The photo is from back in June, possibly the last time Carsten and I had time to roam the countryside.

——

I’m working on a new book. Realistically it’s a few weeks (months?) away from seeing the light of day but I think I still start to publish excerpts here, see what you think. It’s a follow up to No Ordinary Boy in the way that a second book from a first time author who writes about one subject is inevitably a follow-up. But rather than straight-up narrative it’s a small collection of essays based on conversations and thoughts I’ve had since writing the first book. Bit of philosophy, ethics, commentary, manifesto… a rant, if you will. But nicely formatted.

——-

I plan to move this blog to the root of Johannesen.ca and widen my range of topics. I love this blog, but at this point I’m feeling its limitations. All the old links will point to the new location so you might not even notice!

——

Two magazine articles coming out soon: Abilities magazine (October issue), and Ars Medica (next issue, hopefully by the end of the year). I’m quite excited about these – the Abilities article provides a nice counter-point to the usual (inspirational) topics they cover about disability lifestyle, and the Ars Medica article discusses my uneasy relationship with Owen’s Do Not Resuscitate order.

Writing seems to have taken the place of speaking engagements at the moment. Fine with me, as work has been extra busy and the book is taking up a lot of my thinking space.

Los Angeles, 2012

San Francisco, interview, book review

1 Reply

So I’ve decided to add a San Francisco leg to my California trip this year and I’m hoping to have one or two speaking engagements sorted out shortly. Meriah Hudson Nichols, a blogger in Berkeley (near SF) who is active in the Down syndrome community (her daughter has Ds), reprinted my Fake Work article from Bloom. She posted it on several forums and it activated much discussion, which led to a conversation about having me come and talk. As luck would have it, I had planned to be in Los Angeles in August anyway, and I have family and friends in San Francisco. I’m excited with the possibilities of meeting a new community and offering my story to the vast pool of stories already swirling around out there.

I am reprinting Meriah’s interview and book review below. If you live in Canada or the US and want to participate in her book giveaway of No Ordinary Boy, please leave a comment HERE ON THIS POST. Thanks Meriah, for the wonderful support!

—–
Meriah’s Book Review

No Ordinary Boy is a relatively slim tome, only 144 pages long. It was written by Jennifer Johannesen not long after her son Owen died. It is about his life – from the very beginning of it when he was still inside her – to the very end, some 12 years later. It is also the story, told in a remarkably neutral, candid and articulate voice, of a mother who is far from ordinary.

Jennifer had absolutely no experience with disability when she chose to keep her son Owen, and when she embarked upon a path less traveled – that of parenting a child with multiple – and severe – disabilities. In her book, she doesn’t write of that so much as the gradual unfolding of each step, incline and bend along the way and how those twists and turns were perceived then navigated. First, it was his in-utero hydrops. Then his premature birth. Then his months-long stay in the NICU. Each unfolding, as it happens, is beautifully described and analyzed by her, then a solution reached.

What struck me in this was her pure positivity. Don’t get me wrong – not a unicorns-and-rainbows perkily ‘positive’. Rather, it’s that pragmatic (dare I say…Canadian?!) positivity that weaves its way tightly throughout her story and her recounting of her son’s life. It’s the type of positivity that comes from someone with an inherently positive outlook on life yet who is deeply practical, industrious . Who is essentially fair minded and thinks for herself – a strong woman with strong instincts who isn’t easily swayed.

Take, for example, his hearing. Owen was deaf – and Jennifer and her husband were urged to give Owen a cochlear implant. She did not find his hearing loss depressing at all until she bombarded with “cheerful” information about cochlear implants (which she is startled to learn is a very invasive surgery) and the “fairy tale” of another young boy who, after receiving the implant, is able to hear crickets. She writes, “…my instinct was to reject the implant procedures. And besides, I was so grateful Owen was alive it didn’t occur to me to be upset that he was deaf.”

***

Jennifer’s clear and authentic voice coupled with her intelligence show a mother in motion with her children, a mother who is asking the hard questions that people tend to shy away from – “How exactly are they friends, I wondered, if they are just sitting side-by-side at snack time? What does it mean, “Owen demonstrated leadership?”

She pokes around in her feelings regarding Special Education – and the grouping of children with severe disabilities together in the school her son attended She writes, “…maybe it’s too much to ask that a school for severely disabled children should be set up in a dignified, inclusive and genuinely meaningful way; maybe it’s wrong to criticize a system that makes up for poor execution with good intentions.

But I don’t think so. “

She made choices that ran counter to what the medical system advised – choices like learning to sign rather than trying to make Owen learn to hear – and choices that embraced her son as a person who was worthy of a life of experience and joy, not a person who was essentially broken and in need of fixing. This perspective – and the story of how she gained it – is worth reading by all parents, perhaps especially by parents of children with disabilities, as we are the ones that continue to feel the same type of pressure to engage in unending therapy and to treat our children as broken bits of human flesh.

I loved No Ordinary Boy, treasured Owen and Jennifer’s story. I am grateful she wrote it.

I cannot recommend this book highly enough.

—-

Meriah’s Interview with Me

1. You have written a book about your son Owen who was born with multiple disabilities. Why did you feel the need to write his story?

I realized shortly after Owen’s death–after his equipment was donated and his clothing was packed up and his medications disposed of—that there was very little of him left behind. While he was alive he hadn’t done anything that left a trail of evidence, like artwork or letters or things he made. All I had was my own experience of him and the stories of others. As well, his brother (Angus) was 10 years old at the time Owen died. I realized that his memory of his brother would fade over time, and that my own memory would shift and revise itself. So my intention was really to capture a side of his life that few people saw and that I may struggle to recount later–to create a monument to a boy whose legacy might not live beyond my own lifetime.

I started out writing his story with this intention but as I continued along I realized that a different sort of narrative was forming—one that had more commentary and subtext than I began with. And honestly, I think I ultimately wrote a story about my own journey too, not only his.

2. What do you hope readers will gain from your book and your perspective?

I have completely let go of hopes or expectations of what readers will get out of it! I continue to be surprised by the layers of connection that resonate with some readers. Some see it as a disability story, others see reflections of parenting, relationships, or broader ‘meaning of life’ sorts of queries. I didn’t have a particular audience in mind and I’m very pleased to see that both parents and healthcare workers can relate to the story.

I suppose I can answer the question this way: I hope for two things. 1-that people who have little exposure to the more private aspects of caring for a child with disabilities will feel that they’ve had a peek into a world they wouldn’t otherwise see, and 2-parents or clinicians who have had nagging doubts about their decisions will see that they’re not alone!

3. What was the most challenging aspect of telling your story?

I was very insecure while writing the book, wondering why anyone would care, who would want to read my little story, how I would market it… I had to force myself to move through that, because despite the insecurities I had a sense that this was important work.

4. If you had to write it all over again, would you change what you said in your book? If so, what would that be?

I would spell a couple of names correctly! Really kicking myself over that.

But overall, I can honestly say I would change nothing. I am proud of the book and the story it captures. I even get goosebumps when I do readings! I often experience the book as something someone else wrote, and it takes me a moment to remember that it was me. I think readers will find it vivid.

5. How did you come up with the title of your book and how do you think it reflects on the story’s overall message?

The title actually came from Angus – I can’t remember the context exactly but we were discussing ‘what ifs’ about Owen, something like “I wonder what Owen would think if he could…” Angus chimed in with, “Well that might be true if Owen were just an ordinary boy, but he’s not.”

That really stuck with me, because it was one of the few times I’d heard a description of Owen acknowledging how different he was, but without the usual drippy sentiment. It was kind of perfect! I toyed with Not an Ordinary Boy but that didn’t have the same ring.

6. What was your favorite part in your book?

My favourite part is where I reveal our decision about whether or not to get the deep brain stimulation surgery that we had been discussing. A large part of the narrative in the book is centered around these sorts of medical decisions, and I think throughout our journey the reader witnesses me agonizing over these choices and questioning everything on a pretty foundational level. I think that long journey of endless decision-making, experienced over many years, culminates in that one ultimate decision. It was quite a liberating moment to live first hand, and cathartic and validating to write about.

7. If there was one overall message that you’d like your reader to come away from No Ordinary Boy with, what would it be?

I would enjoy knowing that readers came away from the book with a sense of confidence in themselves – not that they will always make perfect and right decisions, but that they can trust they will make the best decisions they can at the time, knowing what they know at the time. I developed this confidence over time, but how great it would have been to start earlier!

8. What projects are you currently engaged in? Any new books from you on the horizon?

I am working on Book Two, as yet unnamed. A collection of essays, some of which appear in my blog, which expand upon the experiences I wrote about in No Ordinary Boy. The first book was a work of narrative non-fiction – a true story told as though it were a novel. There was a bit of reflection and analysis, but not much. This second book will discuss some of the themes that have arisen from No Ordinary Boy, like the idea that we ought to preserve childhood instead of sending children through endless therapies, or that much of the healthcare experience, from the parent’s perspective, remains unquestioned and unscrutinized. I aim to hold a lens up to the system and expose some of the holes that families can fall through.

This next book will also challenge parents and caregivers to honour and dignify their children with an unflinching and honest gaze, to see their children as they are—to do this first, before they try to mold them into someone or something else.

9. What question have you always wanted to be asked in an interview? How would you answer that question?

Well, there is a question that I have in fact been asked before but I haven’t answered very well, because so far I have avoided giving advice or opinions. This will change in my new book! So I will re-ask myself here:

What advice do you have for parents? And what advice do you have for healthcare?

The answer is the same for both: seek out stories and testimony from people who have walked this path before –not just the parents! If you are considering giving or recommending a cochlear implant, go meet someone who has one, and then go meet a deaf person who doesn’t have one. If you are wondering about quality of life for a person with Down syndrome, meet a teen or adult with Ds instead of just other parents. (Interestingly, studies have shown (http://bloom-parentingkidswithdisabilities.blogspot.ca/2011/12/costs-quality-of-life-assumptions-put.html) that people with disabilities rate their own quality of life higher than those without disabilities would assume.)

It’s so common in diseases like cancer and diabetes for the patients to connect with each other. When it comes to pediatric decisions though, it’s all up to the parents and physicians—none of whom who have likely experienced the specific conditions. Sure, parents are often connected—but at most, they can only really talk about the experience of parenting. To properly advocate for a child, I think we need to move beyond our own filters and perspectives, and try to place ourselves in their shoes. I want to emphasize: this isn’t about getting advice –it’s about gaining perspective, and adding to the resources upon which we base our decisions.

10. Do you have any questions for the reader?

Yes! I am so pleased that this dialogue is happening in the Down syndrome community. You know that weird segmentation in the disability world, where one syndrome or condition is better or worse than the other? Really our children are ALL so different, regardless of disability, but our joys and anxieties as parents are often quite similar.

So I would love to hear from your readership about how they feel about the interventions and therapies their children receive—especially the degree to which they feel pressure or support from the professionals.

And on the flipside, I would be interested to hear about the pressures we parents put on ourselves. I know sometimes my own burdens were self-inflicted, because I was holding myself up to an impossible parenting standard. I imagine this is pretty universal.

Jennifer Johannesen, author and wordpress expert

essays, stories and pictures