Abstract
A
I recounted two similar such encounters during my last stint of inpatient consult service. Maybe it was just a fluke. Cases always present in threes, right? But when I brought it up to a colleague, he laughed and confirmed it has happened to him too. Common as it may be, there is an unsettling realization underlying these encounters: family members could be so desperate for a synthesized medical narrative regarding their loved one's medical outlook, they would solicit a prognosis from a clinician who has never evaluated the patient. Why?
There could be several reasons. When we introduce ourselves as palliative care clinicians, patients and family members may immediately identify that a new chapter in their health has begun—they wouldn't be getting palliative care involved unless this is serious. Although our field is trying to modify the perception that we only get involved when a patient is near death, we should be prepared that our handshake introduction can trigger a larger inner realization that the underlying medical situation has forever changed.
But perhaps another phenomenon is at play. Considerable effort has been devoted to improve generalist palliative knowledge and skill building for trainees, nurses, advance practice providers, and practicing physicians since the 1990s.1,2 By many measures these efforts have worked.3,4 Anecdotally, inpatient clinicians seem more adept at managing the basics of cancer pain, knowing the steps of goals of care meeting, and describing the basics of the Medicare Hospice Benefit to their patients than when I first started practicing palliative medicine about a decade ago. However, I worry that many of these discussions about goals of care and hospice occur in a vacuum without a larger narrative regarding the patient's underlying medical condition and anticipated outlook.
Here is another patient story from the same stint on service. Referring clinicians consulted us to be present for goals of care meeting scheduled in 2 hours for a patient with a prolonged hospital stay. Sound familiar? “Sure,” I said, “but just to observe.” The primary team followed many of the steps for leading a family meeting that we have championed over the years as a field. They solicited the family's understanding, they provided a detailed description of the patient's delirium, they even offered a nice warning shot followed by clear medical guidance for comfort care, and an accurate description of how hospice services could help deliver a comfort care plan. But the family responded with puzzlement—you know we still don't know why he's delirious and not swallowing. Can you tell me that? Why isn't he swallowing?
A long silence and sideways glances ensued. Although I intended to be an observer, the silence got to me. I interjected that I am new to the patient's care, but from reading the medical chart and speaking with his clinicians, most likely a stroke caused his delirium. I explained that there appeared to be some uncertainty with that diagnosis, but if we pursued the medical treatments necessary to try to rehabilitate him from the presumed stroke, his medical comorbidities may prevent him from recovering to a medical reality he would find acceptable. Suddenly, with that synthesized medical narrative, the family appeared more assured of the right direction of care for their loved one, despite the fact that this narrative came from an unfamiliar physician.
Afterword, I asked the primary team why they hesitated to answer that key question. Uncertainty in the diagnosis was the major barrier—I didn't want to tell them it was a stroke because we weren't 100% sure from the imaging that was the cause.
These experiences are leading me toward a frameshift of sorts as a palliative care educator. Yes it is important for us to be teaching nonpalliative care clinicians the “nuts and bolts” skills and principles of our field regarding symptom management, communication, hospice, and palliative care services. But perhaps, even more important, we need to make sure generalist clinicians are adept at synthesizing and communicating a medical story fitting for the patient's illness(es). Humans have long been recognized as the story-telling animal. Elie Wiesel wrote that “God made Man because He loves stories.” So when it comes to health concerns, our patients' desire for a larger narrative will be no different. Clinicians have a privileged position to utilize robust medical knowledge and training to frame an accurate medical story out of complex data for our patients and families. What makes our job unique among other types of storytellers is the need for us to tell stories in media res, meaning not only must we describe a story that is still being written, but we also must describe where we think the story will go.
Uncertainty about diagnosis and prognosis, I believe, is a major barrier for many clinicians in communicating a medical narrative to patients and families. Many clinicians may bristle at the very concept of the clinician as a medical storyteller and would rather imagine themselves as scientists offering specialized treatment for a specific diagnosis. But as any good storyteller knows, accurate and powerful stories can be created even in the midst of uncertainty. To see the larger narrative through the drone of daily clinical demands, however, clinicians need to ask themselves the right clinical questions. Instead of the derided organ-by-organ system or problem list questions heard too frequently in daily medical rounds, we should be working with our colleagues to address clinical questions such as the following:
• Setting: Why is this patient here? Which underlying medical illness is most responsible for the patient's presentation? Is this illness curable? Modifiable? Progressive? • Character: Who is this patient? How is this illness affecting the life experiences for this patient and family? • Story Arch: If this patient were to recover from his or her acute medical illness, what would recovery look like? Will he or she be able to return home? Return to work? How much time is left in this patient's medical story? Will he or she survive this hospitalization? • Plot: What are the next plot points/medical decisions facing us if medical recovery remains our goal? • Summary: What information is needed to help us better answer these questions? Have we told the patient and the surrogate our best answers to these questions?
When called upon, I think we, as hospice and palliative care consultants, can step in for our referring clinicians and take the lead in managing symptoms, offering options regarding goals of care, and counseling our patients about hospice and multidisciplinary support. However, try as we might, we will never replace the primary clinician's role as the patient's principal medical storyteller. So when thinking about how to prepare nonpalliative care clinicians to address the large volume of unmet palliative needs, maybe this would be a worthwhile place to devote educational efforts.