“Doctor, will my child be normal?”
As a pediatric cardiologist and a developmental pediatrician, this question is part of daily conversations for us. The words or silence we provide in those initial moments shape a “before and after” moment in parents’ lives. We consider and reconsider what parents need to process and to decide what is best for their children. Sometimes we are able to perceive what parents need and sometimes we make mistakes in understanding how to respond to them. Yet those moments are why we entered medicine in the first place, and they take time.
Time is a scarce resource in our current medical system. Doctors know what they need to do for their patients but often do not have the time or resources to do it. As a result, many are frustrated and leaving the profession, despite the calling they felt when they decided to become doctors in the first place. This is also the climate where new physicians are trained.
The uncertain future of the U.S. health care system underscores the deeper uncertainties physicians face in their daily conversations with concerned patients and families. In 2014 essayist and poet Meghan O’Rourke wrote, “Ours is a technologically proficient but emotionally deficient and inconsistent medical system that is best at treating acute, not chronic, problems….” As our technology has advanced, we are able to care for more individuals with chronic medical conditions. Many of the issues that are dealt with in these visits involve time and effective communication. And it is well established that patient outcomes are related to effective communication with their doctors.
Communication matters in other ways. Writer Ursula K. Le Guin has written: “Words are events, they do things, change things….” Her words are particularly poignant as we consider our current society where Pres. Donald Trump’s tweets become daily news headlines, including his perspective on Charlie Gard, an 11-month-old child in the U.K. with a rare neurologic disease who was ordered moved to a hospice last week, where life support was to be withdrawn.
His parents had advocated that he should receive treatment for a rare mitochondrial disease in the U.S. whereas his physicians opposed further intervention. This case brought to light many issues and questions, including the best interest of the patient, financial considerations and scientific validity of a treatment. It has also highlighted the consequences from the breakdown of patient-family-physician communication. This is not a new situation but one that deserves to be revisited with attempts to understand how to make it better.
Many diagnoses such as a throat infection or pneumonia can have relatively simple treatment and follow-up care accompanied by a predictable pathway of medical management and prognosis. When the diagnosis is complex and associated with other comorbidities as often is the case for children with congenital heart disease and developmental differences, however, uncertainty can become the focus of the conversation. The future may involve multiple surgeries, therapies, educational supports, developmental delays, genetic disorders and the potential for long-term care—and the conversation cannot occur in convenient time allotments. It has to allow for families to process information and revisit the questions over and over again. Most importantly, patients and families need to understand that although circumstances are difficult, there is also room for hope.
Patients, families, and physicians come to these encounters with their own expectations and lenses through which they understand communication. Culture influences these encounters, and it can quickly lead to misunderstandings and consequences, such as those manifested in Anne Fadiman’s 1997 book, The Spirit Catches You and You Fall Down. In addition, physicians’ own emotions shape these encounters, as described in Danielle Ofri’s 2017 book, What Doctors Feel.
Fadiman’s book marks a more idealistic time in our own development as physicians, where we could not imagine we would ever make those mistakes and we would make sure we spent time with patients and families so it did not happen. Ofri’s most recent book resonates as we reflect on how our own resolved and unresolved emotions shape our interactions with patients and families. And this can result in the breakdown of communication.
When asked about the most trying part of being a physician, our colleagues and our own responses may include the following: to cure, to heal, to fix—while not making mistakes. This may be what is expected of us, yet the most difficult part may be not in the technical aspects but in the art of doctor–patient communication, the act of delivering difficult news. Especially if the results cannot be “fixed” or “healed.” And if this is the case, then time is one aspect that allows patients and families to be at the center of the healing relationship.
A diagnosis has meaning. It gives a name to the struggles and pain that individuals and families experience. It matters how it is delivered and who delivers it, especially when there is uncertainty and not a clear path. These conversations should provide a pathway to relieve struggles, provide support and alleviate suffering.