As a third-year student early in my medical training, I exist in the space between patient and physician, identifying with neither fully. This unique position allows me to learn the practice of medicine while also introspectively remembering the patient’s perspective. The space between has become most apparent to me in my experiences with antenatal counseling.
The goals of antenatal counseling are to prepare patients and their families, inform them of possible medical complications, share associated risks and benefits of treatment options, and provide an understanding of survival outcomes. In some cases, this counseling primarily prepares the physician-patient relationship for future decision-making in the antenatal and postnatal periods. In its best form, the shared decision-making model involves the exchange of the physician’s knowledge and patient’s values so that they can make informed medical choices together.
I was recently observing a counseling session and listening as the neonatologist recited a litany of possible consequences: prematurity, trajectories and associated interventions for each gestational age. I listened to the possibilities of intubation, extracorporeal membrane oxygenation, the risks of intraventricular hemorrhage, bronchopulmonary dysplasia, necrotizing enterocolitis, total parenteral nutrition or gastric tube feeds. Amidst the downpour of information, I looked into the eyes of the mother across from me, and I began to think of the other mothers with whom I had spoken over the past year. I began to consider the medical decisions that they had made for their unborn children.
Attempting to meet her gaze, I realized that her wide eyes were fixed, set looking simultaneously everywhere and nowhere. Her eyes betrayed the reality that she was drowning in information and swept up in the deluge of emotion. As the counseling concluded, I heard the hollowness of the physician’s words echo without the patient’s presence: the time when counseling ceased to benefit the patient.
This experience elucidates the reality that the training to become a physician is not only about acquiring knowledge, but also learning to impart that knowledge upon others — most importantly, our patients. But, in this process of knowledge transfer, is it possible that the information we deliver becomes akin merely to the terms and conditions of a software agreement, the obligatory pop-up hastily scrolled through and accepted by the user — in this case, the patient?
As future physicians, we must share these terms and conditions, which include poor outcomes, complications and side effects among other information, as part of our moral and legal obligations of care. But when do these obligations force us away from our commitment to care simply as humans bearing witness to another’s experience?
Over the last year, I have had the privilege of speaking to parents about their experiences with complex pregnancies. In these interviews, I realized how families struggle to approach and integrate information provided by physicians. This difficulty is compounded by time constraints, stratified by education and socioeconomic status and intensified by patients’ previous experiences with health care. Furthermore, the conversations alone threaten the framework of expectations and the hopes that patients had for healthy pregnancies and babies. For many families, weeks of reassuring ultrasounds and predictions of routine care were instantly dismantled by new imaging findings.
Some families further created a dichotomy between information provided by the medical team and hope itself. But for most, the spectrum of outcomes predicted by the physician did not affect a parent’s hope for an outcome outside of what was medically anticipated. Parents’ hope could not be contained by prognostication. One mother said to me, “Doctors need to give us facts and hope: our hope makes us human.” Implicit in this mother’s statement was her innate need to preserve hope.
Physician counseling not only challenges hope, but also does not appear to offer any true meaning to patients. One parent explained, “I didn’t listen; I didn’t think those bad things my doctor shared would actually happen to me.” To her, all of this doctor speak was just amorphous. In other words, medical prognostication is inherently impersonal. I recall one mother was particularly frustrated because she felt doctors could not answer her seemingly simple question: what would her baby be like? Another asked, “What will be my child’s experience and what will my experience be raising my child?”
Each mother struggled to conceptualize her child’s cognitive and physical abilities despite physicians sharing a great deal of technical knowledge and data. Therefore, many parents sought out the stories of other parents like themselves on social media and medical blogs, searching to understand the lived experience of a particular potential disease process. For some, this provided comfort; for others, this created new fears, medical misunderstandings or false expectations.
As I watched parents look for answers outside of their physicians, I was reminded of a question in philosophy: the “redness of red,” examined in Frank Jackson’s (1986) thought experiment concerning epiphenomenal qualia as a refutation of physicalism. If someone who has never seen red were provided with complete knowledge of red, would a person still learn something new when experiencing the color red? In the parent experience then, is the lack of parent understanding during antenatal counseling because the very redness of red — the lived experience of one’s child — is so personally and experientially grounded?
Foremost, descriptions of various diseases — ones compounded by a multitude of unknown factors — make the physician’s attempts to explain red incomplete. Ultimately, parents are not interested in objective information about red; instead, they seek the experience of redness in all its colorful glory. They do not want data about their child; they want their child.
In our desire to provide concrete information and explanation, we as physicians often create meaning akin only to terms and conditions. Our attempt to educate is often received as a blur of data so daunting and foreign that patients inevitably skim through it, click accept, and remain lost.
The families’ ability to comprehend antenatal counseling is, understandably, compromised and stymied. One father captured the complexity of multiple care trajectories and uncertain outcomes in simple terms: “When you plan for everything and anything, you truly plan for nothing.” It seems that the families dealing with complex pregnancies still do not know what to expect when they are expecting.
I wonder if we are able or even equipped to give parents what they need and desire when it comes to antenatal counseling. Perhaps it is our lack of experience that prevents us from imparting true understanding. Do the cases that defy the predictions of even the most seasoned physicians make us wary of certainty? Maybe we impart appropriate uncertainty given the inherent limitations of our technology to accurately predict fetal outcomes to the degree parents’ questions require. Might we actually shy away from the unsavory and colorful details to preserve hope for families? I suspect the answer is yes, yes to all.
I have been thinking about how these experiences will shape my own practice. What will be my role? How am I to provide counseling, the kind that imparts understanding and maintains the need for hope? I don’t pretend to have an answer today. But I hope that someday when I must impart a poor prognosis, I will notice the patient before me and honor the complexity of our relationship.
I hope to avoid my knowledge and news becoming akin to terms and conditions, where all of the ‘anythings’ and ‘everythings’ amount only to ‘nothings.’ My goal is to foster personal meaning and understanding so that together we can navigate the complexity of prognostication to make informed medical decisions.