From The Chair
For many parents the phenomena of pregnancy and parenthood are ripe with opportunity, hopefulness and fulfillment. When prospective parents receive a diagnosis for their unborn child, things change; their expected path is altered – they encounter new challenges. So it is when parents of infants, children or adolescents receive a life-changing (perhaps life-limiting or life-threatening) diagnosis for their child. They are introduced to new, foreign, and complicated subspecialists addressing scary realities in a medical world populated by high-tech equipment and multiple measures and tests. These domains of health care were never in their plans – never on the map – and they find themselves in need of someone to help them navigate the ‘system’ as well as learn what it exists for – and how it works. It seems that their hopes and dreams of normal parenting are lost. Lost too, it seems, are the expectant opportunities to parent and nurture a child – keeping them safe from the world. Their whole world appears to be full of uncertainty.
“No man ever steps in the same river twice,
Each step we take in life alters the course that follows (remember Heraclitus?). Parents embarking on the journey of childbirth and child rearing may find themselves surprised by life events – and in the context of the clinical world, surprised by unexpected findings, diagnoses, and necessary treatments. Unable to protect their children, they quickly come to realize how little control they may have, and how even their most cherished dreams may be shattered. But most so affected parents do not crumble and give in to these new realities without some efforts at resiliency. They learn to accommodate “new normals”, grapple with uncertainty, negotiate present victories and look to turn present realities into newly defined, reshaped, and hoped for future realities. They learn to dream again, afresh, and anew: survival, a good day, a minimization of technologic dependence, and a targeted end date for finishing an extensive course of treatment, a surgical excision, or finally going home. Their universe, our universe, is dynamic. How can anyone profess to know what tomorrow brings? Or how many tomorrows must pass before dreams are realized?
“Teach thy tongue to say ‘I do not know,’ and thou shalt progress.”
The modern fixation on knowing outcomes and foreseeing one’s future is not new in medicine. It hasn’t come solely with the increasing use of technology, or the practice of modern pediatrics. It is as old as medicine itself. And it is caught up in the practice, and practical implications, of the art of diagnosis. But for decades, physicians have increasingly objectified disease and tended to link diagnosis to tests, to procedures, and to machines. Others have commented on this process– one in which the patient becomes eclipsed by his disease – the hydrocephalus on the 2nd floor, the congenital heart in bed 10. Imagining that one might not “know” causes anxiety – especially for many physicians. But for families, not knowing may be the norm – at least initially.
Life may be seen as a series of dreams, realizations, accommodations, and negotiations. We dream to envision and hope for a better tomorrow – a parent’s dream of having a child and a family; or even a clinician may dream that she could cure a child’s condition, or foresee the outcome of a child’s surgery or lengthy hospitalization. We wake up tomorrow to discover new realities confronting us: test results, clinical changes, and social phenomena. At times these new realities might have been considered possible – we may have even been forewarned – but at other times they seem to arrive out of the blue. And even when they are anticipated, or understood, they do not necessarily manifest in ways we expect. We simply don’t know how a disease, treatment, operation or healing process may wind its way through a long hospitalization for any given patient. So, these realizations cause us to pause, revisit our dreams and reconsider our possibilities.
“Can I do this, still? Or must I reframe, re-evaluate, refit (prepare anew),
When given certain options, we might express a new [accommodated] desire to approximate, as much as possible, our original desire – our dream. So, we enter into negotiation. Those that we work with in this new reality, perhaps even those who seemingly exert some control over our own, or our loved one’s circumstances engage us in conversation. We identify common interests, goals, and acceptable means to accomplish them – upholding core values and principles that mean something to all of us. In a graphic sense, it can be represented as below.
In view of this ongoing process, it is important for clinicians to be sensitive to where a patient/family may be. Being thus aware, a new message, a finding or a diagnosis – even a concern’ – may be expressed in a special manner, a certain time, in the right place and with important facets of support.
A relatively recent concept in medicine is that of the diagnostic imperative. As noted by Nahn, “How to enact a rational, appropriate, and compassionate (italics added) use of technology…is an actively debated topic”. This imperative in the diagnostic realm, while well intended and often accompanied by improved therapeutics, is problematic within the field of neurology – and by extension neurodevelopment in the context of infants and young children – where therapeutic abilities, let alone imperatives, do not exist. It is, as we all know too well, a “wait and see” proposition. Allow the child to develop, to unfold and display her abilities through serial examinations and measures over the next few years.
Diagnoses can also feel cruel, overbearing, or tyrannical. They may confer special status, enforce social or cultural norms, or suggest that the complexities of any individual person and her diagnosis be constrained into acknowledged ideal types or patterns. The rigors of diagnostic heuristics may actually impose such practice-defining mechanisms as to form a “bureaucratic imperative” as described by Rosenberg.
For many couples – or your patient/parent – the news of a recent finding on a blood test, a genetics panel, or an imaging study is, in essence, the receipt of yet another “piece of news” that may or may not constitute a diagnosis. It might be argued to merely be a new finding on yet another test. Yet it may arrive on the heels of many days/weeks/months, and multiple previous pieces of news – findings or diagnoses. It represented a new reality, just as they moved from past victories into present challenges and their hearts were set upon discharge, dreaming of a brighter future. They may have survived a number of set-backs, even losses; a lengthy and painful hospital stay, accommodated new realities and negotiated new dreams as they made progress towards leaving the hospital or the altogether too frequent appointments in the specialty clinic. This new diagnosis once again may perturb the constantly recreated “new normal” that the family had experience over and over again. If it comes with vagueness, broad uncertainty, or the suggestion for concern (but for what exactly nobody can answer), is it helpful? What may be pursued as a diagnostic imperative by a well intentioned clinical team may in fact become a tyrannical reality; a “diagnosis” that results in much more burden than benefit. To this, we all need to become more sensitive in our daily practices – and our teaching others.
Brian Carter, MD, FAAP
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Nahn FKD. Neurology, technology, and the diagnostic imperative. Perspectives in Biology & Medicine 2001;44: 99-107.
Rosenberg CE. The tyranny of diagnosis: specific entities and individual experience. Milbank Quarterly 2002;80: 237-260.
Hill DL, Miller V, Walter JK, et al. Regoaling: a conceptual model of how parents of children with serious illness change medical care goals. BMC Palliative Care 2014, 13:9; http://www.biomedcentral.com/1472-684X/13/9