October 2021 Communication Tip
Priming for Advance Care Planning
Welcome to October!
In this month’s Communication Tip, I wanted to share a recent, provocative paper from JAMA about hope, “Holding Hope for Patients with Serious Illness” (Rosenberg, Arnold, Schenker. JAMA, published online 9/16/21). It is about supporting our patients’ full portfolio of hopes.
The “optimism bias” is present in 80% of people. Having hope is beneficial and is associated with meaning, purpose, and reduced depression. Even “false hopes” may be psychologically beneficial. The authors write: “For many patients, hope promotes a sense of control, forward momentum, and incentive in an otherwise uncontrollable, seemingly stagnant, and paralyzing experience.”
The authors argue that clinicians may be concerned with “taking away” patient hope, but also want to make sure patients understand their prognosis accurately so that they are making “informed decisions.” When patients’ hopes are inconsistent or incompatible with the clinician’s sense of what’s true, tension arises (for the clinician). And yet, “patient-endorsed hopes rarely equate to true delusion or misunderstanding. Rather, patients’ hopes represent exactly what they are—the perhaps impossible future that people wish they could have.”
I’ve often thought about hope as being “nested.” Patients have hopes for what might be possible, even if a larger, earlier hope is no longer be possible. For example, I hope to keep walking, but if that becomes impossible, I hope to be able to get outside with my wheelchair, but if that becomes impossible, I hope to be able to attend my family picnic virtually.
The authors write: “Hope is neither dichotomous nor static. People have many hopes for things, and what they hope for evolves. Hope is a complex, continuous, and contextual process of appraisal and corresponding goal setting.”
The clinical care goal here may not be to prune patient hopes to just those the clinician is comfortable with, but to invite additional hopes to be considered and expressed. In a way, we might consider hopes closer to emotions, rather than to cognitive understanding. We can bear witness to patients’ emotions, even hard and sad ones. Clinicians can learn to support a variety of patient hopes, not just ones that are in-line with the clinician’s perfective on the medical or prognostic facts.
“Hopes are often inconsistent with each other and with what the patient knows is reality. For instance, patients with serious illness may indicate they understand the prognostic data and they need to be hopeful. For them, hope exists as a protective emotional state alongside a cognitive understanding of likely outcomes.”
What is a clinician to do? In short, the opportunity is to expand and explore a patient’s list of hopes, rather than paring them down to fit into the clinician’s perspective on reality. Asking something like “Given what is happening now, what do you hope for?” Acknowledge that response and then ask, “What else are you hoping for?” and then, “What else?”
“The point is to help patients balance and diversify their hopes, providing flexible future directions and possibilities. After a patient develops that more complex vision, the clinician may be able to negotiate how to engage with it.”
Clinicians do not create or destroy patient hope. We hold hope; we bear witness to it; we understand it as an expression of who our patients are and what is important to them. To do this, we need to be comfortable with uncertainty and incompatible ideas.
This all reminds me of the traditional paradox of palliative care… “Hoping for the best while preparing for the worst.”
And of course, the old Buddhist adage, “Don’t just do something, sit there.”
“The role of clinicians is not to prioritize a single likely or unlikely hope. Rather, the role of clinicians is to help their patients recognize and diversify the breadth of their hopes. With time, doing so allows patients to psychologically adjust, identify goal-concordant decisions, and more successfully navigate their illness.”
Here’s hoping this is helpful.
Best,
Mike