When a child dies

at the 9/11 Memorial NYC, early May

Dear friends of ours lost their eldest daughter this week. I spent a bit of time with the family last night and was reminded of how I felt during the days and weeks following Owen’s death. I wasn’t reminded in a sad way – I can easily distinguish between how I felt then and how I feel now. It was more that some moments were familiar and even comforting; I saw myself in the silent stretches, the exhaustion on their faces, the sense of bewilderment and disorientation that comes before the inevitable, “Now what?” – and felt connected with my own humanity, and theirs.

I have written previously about seeking out the comfort of grief, that I can sometimes more easily access Owen when I think not just about his life, but about how I felt right after he died… it’s a precious time to protect and even cherish.

So I’ve been wondering what I might share, for them or anyone else who is experiencing the loss of a child, or who is trying to support someone who has. This list popped into my head this morning. I could write a mountain about each of them.

I didn’t have room to be fully sad until the food and flowers stopped coming. I have never been more social than I was in those first three weeks. It was a relief when the flurry of activity ended, and it was also the loneliest time of my life.
I regret how I managed Angus in the hours and days following Owen’s death. Example: with Owen’s body still lying in his bed and the police hovering everywhere, we sent Angus to a friend’s house where they attended the friend’s cousin’s birthday party (?!). A terrible decision in hindsight. I think Angus would agree.
I didn’t notice that others were grieving in their own right. I only thought of others as being in supporting roles relative to Angus and me. I was always surprised to see others sad or crying. I would think, “I guess they really feel sorry for me…” I obviously was not a source of support for anyone.
Grief is as physical as it is emotional. The tears and gut-wrenching pain didn’t wait for convenient moments. They didn’t even wait for me to wake up; I had many mornings when I woke to discover I had already been crying for hours.
I found it impossible to ‘talk about it’. And still do. Hope I’m not being confusing: I do indeed talk a lot about Owen, his life, my thoughts on his life, my thoughts on how I managed his life… What I don’t talk about is how it feels not having Owen around. How it feels to observe how Angus is managing. How much I miss him. What I wished for and never got. (I don’t see this as a problem. Just indicating that I am very much aware of the ‘crafted’ nature of this blog (and even my book) and that most of what I experience remains private.)
The cremation was harder than the funeral. Soul-destroyingly so. The funeral was sad but also kind of pleasant and affirming. The cremation was a cruel reminder of nature’s indifference to a lifeless body.
I felt as though I’d instantly transformed into someone new and unrecognizable. The old me was innocent and carefree (relatively-speaking of course). The new me was… wise? mature? The best way I can describe it is I knew that there was no going back. Death is as final as it gets. There was no decision to move on–one just must. And does. (One of my favourite expressions is to say that one got the ‘bum’s rush’ – basically hustled out the back door. This feels about right: I got the bum’s rush out of my old life and was locked out, and forced to face something new.)

Heartland USA, just west of Toronto

On death, change and choices. And, back to school!

A dilemma for sonographers, and considering the greater good

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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

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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.

My article in the latest Ars Medica journal: “Do Not Resuscitate”

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ars medica cover 2 It had become an annual event. Owen’s pneumonias seemed to happen every spring, a kind of rite of passage to clear the lungs in preparation for the inevitably muggy Toronto summers. We could always tell when it was coming—started with mild lethargy and weak smiles, continued through a body-heat phase that made his skin weirdly dry and clammy at the same time, right on through to the wet cotton-candy mucous tinged with yellow that he would cough up violently, causing the thick vein in his skinny neck to bulge. We eventually learned to read the signs before the next phase would start. Inhalants, antibiotics, steroids, and chest therapy became our spring tradition.

This article is available in the Fall 2012 issue of Ars Medica, A Journal of Medicine, The Arts and Humanities, published by the University of Toronto Press.

Masthead and Table of Contents | PDF of my article

I am probably telling this all wrong. As I write this I can now remember Owen in the hospital for pneumonia in the fall. And another time in the dead of winter. And not a few overnight stays in the summertime, when I was glad for the air conditioning and bright sun streaming down the hallways. When I try to recall these things accurately my memory can be alternately out of focus, and sharp as a tack. I try so hard to get it right but the recollections are slippery and tricky, morphing to suit whatever story I think I want to tell. I suppose it’s understandable. . . Owen has been gone now for sixteen months.

He died when he was twelve. The timing and circumstances of his death—alone, in his own bed, as healthy as he’d ever been—was a huge surprise. Unexpected, unexplained. In fact, the coroner agreed; his listed cause of death is SUDEP, Sudden Unexpected (or Unexplained) Death in Epilepsy. I have to admit I laughed when the coroner told me. He had to reassure me that it was indeed a real diagnosis, I could even Google it, and yes ma’am it is indeed a real thing. He clarified that, in our case, it was a diagnosis of elimination. Nothing else could explain Owen’s death and he’d had a history of seizure disorders as an infant. So, fair enough. I didn’t care any more about this ambiguity than I did about the lack of diagnosis for his condition while he was alive.

On paper, Owen was a collection of symptoms and descriptions. Spastic quadriplegia cerebral palsy, deaf, nonverbal, non-ambulatory, g-tube fed, incontinent, fully dependent for all aspects of daily living. He was also born 8 weeks prematurely and experienced a host of problems prenatally for which he required surgery, in utero. We had no explanation for any of this other than that a part of his brain—the basal ganglia, an important part of the deep brain that controls motor function—was underdeveloped. Why, no one had any idea. Often this malformation is caused by kernicterus, the result of dangerously elevated bilirubin in infancy. But this wasn’t our case. And besides, his troubles had started long before he was even born.

Owen had multiple severe disabilities all of his life. He certainly had a lot going on but none of his conditions were obviously life-threatening. Except for his weak and compromised lungs. At the best of times his breathing was noisy and wet. At the worst, he struggled ardently to catch a breath. Stridor, they called it. ‘Turbulent air flow in the upper airway’ causing high-pitched wheezing and reduced air intake. His skin would become frightfully pale, his body warm and limp, his chest would collapse inward as he tried to inhale. Evidence of a hard fight against infection and fluid accumulation in the lungs.

I always knew his lungs were his weak link. I had imagined that Owen would likely die because of pneumonia or related complications. So perhaps I shouldn’t have been surprised when, during a spring stay in the hospital, the doctor pulled me aside and asked if I would consider signing a DNR order.

Owen was around six years old. Despite the frequency of visits to the hospitals all over the Greater Toronto Area, I had never been asked before. I wasn’t even entirely sure what a DNR was.

“It stands for Do Not Resuscitate,” she said.

The words drifted in through my ears and settled somewhere deep, probably near my own basal ganglia. My body felt warm and clammy, my breathing suddenly becoming more shallow. Perhaps it was sympathetic pneumonia, a way to connect with my little boy passed out in the hard bed just on the other side of the wall.

“That means you don’t save him if it looks like he’s going to die?”

“It means no heroic measures. It means he can die peacefully.”

I imagined rib spreaders. Emergency transplants (of what, I had no idea). Months on life support. I imagined failed dramatic rescue attempts that I would live to regret. Previous doctors had warned that kids like Owen, if placed on a ventilator during an illness, sometimes don’t come off at all. I pictured a permanent breathing tube.

Her suggestion seemed so reasonable. I didn’t want my boy to live like that. And he probably wouldn’t live through those interventions anyway. It was a short conversation.

“Sure, I’ll sign it.”
_____
When I told Michael that night, he was quietly horrified. Why hadn’t I thought to ask him, check with him first?

“You told them to not save our son?!” he said. “Undo it!”

He wasn’t accusing me of not caring. I knew it then and I know it now. I had dedicated myself completely to my two sons and had provided Owen with a quality of life that was almost unheard-of for a child like him. No, Michael wasn’t thinking I was harbouring a death wish for Owen. I think instead he was accusing me of making an uninformed decision, one that I had made unilaterally, unexplored and unquestioned, in a highly uncharacteristic fashion.

I felt my insides collapse. He was right. I hadn’t considered the decision carefully and had signed the document as casually as I had signed the request for a television in the hospital room. I couldn’t even tell him what the form said. I felt I had failed our family, myself, my son. I called the hospital and had it removed from his file.

Owen didn’t die then. In fact, it was as though the DNR gave him the push to get better. He recovered in typical Owen-fashion —practically bounding out of the hospital (at least in spirit) with the clearest lungs ever and a look of thrill on his face as he breathed in the fresh air as we emerged through the automatic parting doors to the outside.

After that, I didn’t give another thought to the DNR. Not to the specific one I signed and not to the overall idea. In fact Michael and I didn’t even finish talking about it. We didn’t need to; I think we both felt we had dodged a bullet and our discomfort with the whole topic manifested in silent, complicit agreement that we would never bring it up again.

The months and years rolled on and as a family, we ebbed and flowed with Owen’s pneumonias and other health-related problems. Sometimes I wondered, “Is this going to be the one?” But not often. Pneumonia had become so much a part of who he was that we were used to the sudden drop and surprisingly quick rebound. Eventually, the once annual event became less frequent and less severe. Our ability to help prevent its onset and lessen its severity had reduced each subsequent pneumonia to one that we could treat at home, like one treats a common cold.

So it wasn’t because of the threat of pneumonia that compelled me, years later, to sign another DNR.

Owen was around ten years old. He was recovering, at home, from a health crisis which had required a six-week hospital stay in intensive care. (I am fast-forwarding deliberately. I am skipping past the part where Michael and I split up and I moved into my own apartment, and I tussled with my soul to figure out how life was now supposed to go.) Looking back now, I find myself wondering why no one raised the question of a DNR. At one point Owen had been somnolent—unrousable—for almost 24 hours. He was in a tailspin of symptoms that alternately looked like overdose then underdose of a medication that was being administered directly into his cerebrospinal fluid, through an implanted device called an intrathecal baclofen pump. It was a confusing time for everyone. Surely, it would have been the right time for someone to suggest a DNR? But no matter now. He lived through the ordeal and came home, weakened but on the cusp of what would prove to be the best years of his life.

When he was discharged from the hospital, I withdrew Owen from school. I hired a small, diverse army of young caregivers, each working part-time, to give Owen experiences that he would not otherwise have. I was self-employed as a web developer and needed my daytime hours to make a living. So Owen’s caregivers would take him out every day, sometimes just to the local park, sometimes to lunch with a friend, to a movie, the museum, to go swimming. Most days, he spent more time with them than he did with me.

I chose to forgo my usual criteria for hiring caregivers. Instead, I hired based on personality, not credentials. I figured that the duties of caring for Owen were teachable skills. But decency, likeability, emotional intelligence—these were not. So I surrounded us with motivated, smart individuals who could just figure stuff out and enjoy life with Owen.

The drawback? Some of them had little to no emergency or even healthcare experience. I remember watching one of the caregivers pack up Owen’s bag for an afternoon outing and thinking, “What if Owen started to choke on the subway? What if she had to call an ambulance? Would she know what to do? What decisions would she make on his behalf? And could she live with her decisions afterwards?” I realized that I had handed over the care of my immensely vulnerable son to a group of young people who were, for the most part, unprepared to handle a crisis. It wasn’t fair. For anyone.

The decision wasn’t hard to make. I requested a standard DNR form from Owen’s primary physician. We went through it point-by-point, crossing off things that didn’t resonate and adding things that made more sense. Michael and I reviewed it together—calmly, intelligently, without the surrounding hysteria that accompanies decisions made under great stress and pressure. We settled on a final document that truly reflected our intentions for Owen, knowing we could amend it at any time.

The hard part was talking to the caregivers. One cried while reviewing it. Mostly they were sombre and serious. Possibly for the first time, Owen’s fragility was in clear focus and the worst-case-scenario was something real. But the relief everyone felt was palpable.

Owen didn’t give us a chance to implement the decisions reflected in the DNR, or to test our wills against the pre-made choices made in a different time and place. He died of his own accord, at his own time, leaving none of us with a harrowing memory of watching him die because of a form signed in the cold light of day.

Jennifer Johannesen, author and wordpress expert

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