Notes from a Family Meeting is a newsletter where I hope to join the curious conversations that hang about the intersections of health and the human condition. Poems and medical journals alike will join us in our explorations.
For those of you just joining, consider starting here to trace how I’ve been thinking about medicine and technology, a conversation I’ve been returning to time and again.
“I’m just really grateful for all these doctors. And I know God’s gonna heal me.”
Gary lifted the corners of his mouth in a fatigued smile. The effort wasn’t lost on Dr. Lee.
“Given everything that’s going on, what worries you the most?”
“Oh, I’m not worried. God is in control.” A tear rolled down Gary’s cheek. “I wish he’d control the hospital food a bit better!” Gary mustered a chuckle.
Dr. Lee nodded, gently smiling himself, and allowed a moment of quiet to pass between them. He didn’t follow after Gary’s humor though and instead kept his voice soft, “God is in control, and this is still really hard and really sad.”
Gary’s eyes flitted to meet Dr. Lee’s, bright with one moment of fear, and he nodded.
A serious illness conversation is not psychotherapy. The primary goal of the encounter isn’t insight, psychological flexibility, or improving some thought or behavior. Still, these must be secondary goals of any given encounter, to a greater or lesser extent. Sometimes patients and their inner circle either don’t have access to a mental health clinician or they don’t want to engage with one. So, whether you’re a primary care doc, an oncologist, or a palliative care nurse practitioner, you’re it. Therefore, resources abound that draw on psychotherapeutic skills and postures to inform these conversations (e.g., see here, here, here, here, here, here, here, here, here).
Despite the growing literature on the topic, clinicians may be left asking the question from another paper in this space: “yes it’s sad, but what should I do?” As important of a question as that is, we can’t rush to respond to it. We need to sit with the emotion - our patients’ and our own. Emotions teach us human lessons that we can’t learn from a book (or this newsletter for that matter).
Much of this literature has roots in the soil of psychodynamic psychotherapy, cognitive behavioral therapy (CBT), and occasionally acceptance and commitment therapy (ACT). I am by no means a psychotherapist, I was required to learn and engage various forms of psychotherapy as part of my psychiatric training. My primary psychotherapy supervisor was an expert in emotion-focused therapy EFT) and so, like a good student, that’s how I think about a lot of therapeutic interactions. I want to try my hand at translating some of those principles into a way of thinking about them in the clinical encounter.
Emotions tell us about our needs, goals, and values.
Tony Back and Bob Arnold call this “seeing the affect as a spotlight.” While emotion (inner experience) and affect (outer display) are two different but related things, the idea still holds. Indeed, affect is the a bridge between the most private inner spaces of our psyche and the world of human community around us. Leslie Greenberg wrote, “…emotion is fundamental to the construction of the self and is a key determinant of self-organization. At the most basic level of functioning, emotions are an adaptive form of information-processing and action readiness that orient people to their environment and promote their well-being. …they inform people that an important need, value, or goal may be advanced or harmed in a situation.”
Rather than being incidental to the clinical encounter and obstructive of clinical decision-making, emotions are critical to both.
We have primary emotions and secondary emotions.
Greenberg again: “Primary emotions are the person's most fundamental, direct initial reactions to a situation, such as being sad at a loss. Secondary emotions are responses to one's thoughts or feelings rather than to the situation, such as feeling angry in response to feeling hurt or feeling afraid or guilty about feeling angry.”
In the context of a serious illness conversation, a patient’s spouse might be trembling with rage, blaming clinicians about missing a now terminal diagnosis. Assuming the diagnosis wasn’t missed, the anger is possibly a secondary emotion in reaction to the anxiety wrought by the primary emotions of terror and anticipatory grief. Even if the diagnosis was missed and the anger is “justified,” people are complicated - anger can be a primary emotion and muscle out of the way a quieter sense of primary grief. Both emotions will require attention and care.1
“Venting” a primary emotion can be helpful and cathartic as a patient learns to access, feel, express, and reflect on what that emotion tells them. Venting a secondary emotion, on the other hand, may only perpetuate a cycle of unhelpful furor that exacerbates avoidance and anxiety.
Emotions can lead us astray.
If emotions are meant to provide us important information about our circumstances, maladaptive emotions don’t do that. It’s good to feel lonely if you need the fulfillment of human connection. It’s good to feel grief to honor the love you have for your deceased friend. But the hypervigilance of the battlefield a veteran carries into the quiet suburbs, the despair that does not fluctuate in response to a turn in hope, and the aching shame a trauma-survivor feels despite the genuine care they receive from a loved one are all maladaptive. These emotions don’t change in response to new information. They make people freeze, flee, or fight when they should do something else.2
Maladaptive emotions can impair decision-making and existential engagement in serious illness.
A maladaptive emotion is one way of coping both with primary emotions and challenging circumstances.3 EFT engages these kinds of emotions with the hope of fostering insight and changing harmful life patterns. EFT’s goal cannot be the main goal of a serious illness conversation, but a clinician should know when someone is relying on a maladaptive emotion because it’s probably going to trip them up somehow.
I’ve found that a little ingenuity with techniques in serious illness communication (e.g., VitalTalk) often can help patients get to an important decision. Sometimes that coincides with existential or psychological insight, sometimes it doesn’t. Sometimes the best these frameworks have to offer isn’t enough to help a patient mired in an emotional labyrinth.
People can deny thoughts or emotions.
The word “denial” is thrown around a lot in medicine when it comes to judging a patient’s lack of acceptance of their failing health: “They don’t get it. They’re in denial.” What the clinician means is the patient is repudiating some fact about their condition. That may be the case, but if they’re in denial at all (and often they aren’t), denial of an emotion probably came first.4 Miriam Greenspan remarks, “Denial is unconscious detachment from emotion and the truth that emotion holds.”
It may be the case Gary hasn’t experienced any negative emotions whatsoever about his predicament. It’s more likely, however, that a host of beliefs and relationships are working together to make it unsafe for him to feel a deeper primary emotion like fear or grief. Maybe he believes fear and grief are synonymous with faithlessness and faith is the very thing he needs to recover. To avoid that dire conclusion, he denies the emotion.
If someone denies a fact, you might work with them to help them appreciate the fact, perhaps by explaining it differently or titrating information up to the full dose of “bad news.” If someone denies an emotion, though, the work is different. The patient needs to find a space in which it is safe to first feel that emotion - slim pickings in most clinical encounters.
The clinical encounter is person-centered.
I remember speaking with a patient and a nurse entered their hospital room. “The urologist caring for your prostate cancer will be by this afternoon.” What a strange turn of phrase showing how much medicine is disease-centered. But when it’s all disease-centered, we miss the person who is living at the center of it. Person-centered care means paying attention to the person, not just the disease.
By relying on a dialectic between “following” and “leading,” clinicians can help patients access emotions to help them accomplish important tasks, like making major medical decisions. A clinician follows by remaining attuned to the patient’s experience in the moment (thus, it is personal). A clinician leads by directing the process of the encounter in a particular direction.
“Leading” might sound like anathema in the world “respecting autonomy” but there’s a vast difference between directing the content of a decision and directing its process. So, for example, clinician and patient need to agree on medical facts before a clinician can properly ascertain the patient’s goals, and only then are they prepared to make a decision about what to do.5 The decision is the patient’s to make although, admittedly, there’s special power in setting up the choices.
Robert Elliott and Leslie Greenberg warned a clinician could fall into a ditch on either side of the road: “Following without leading may result in therapy progressing inefficiently or not at all. Leading without following is ineffective and often counter-productive, undermining attempts to help the client develop as an empowered, self-organizing person.” Likewise, patients get into trouble if clinicians assent to whatever is requested but also when clinicians forcefully push them without going at their (emotional, cognitive) pace.
The clinical encounter has a spectrum of resonance and depth.
Resonance is the feeling of being in sync and on the same page with another person. Depth is the subjective and objective state of being attuned with others in a meaningful emotional, psychological, and/or existential task. Sharing pleasantries and chatting about the weather is perhaps the most superficial engagement which might nevertheless have high resonance. The resonance increases as the clinician and patient engage their work: the clinician asking questions about the patient’s health, and the patient responding. Both get in a rhythm (or not - and then the resonance is poor). This isn’t deep and a patient may remain emotionally distant from the conversation.
The depth increases as both grow closer to matters that are more emotionally, psychologically, and existentially fraught. There are verbal and non-verbal cues that coincide with the content of this part of the conversation. These are things like more direct eye contact, an open body posture, slower speech, and using the other person’s name (“Listen, Gary, could I share with you…?”). Either person may make more direct observations about an inner state (“I’m feeling sad,” or “It looks like you’re sad”). The pace of the whole conversation may slow as the clinician allows more time for reflective or compassionate silence.
A clinician can also use these cues to help deepen the conversation if paired with the right circumstance or content, but they aren’t magic and, if adopted prematurely or inappropriately, appear awkward and robotic.6 A clinician would want to intentionally deepen a conversation because that is where important primary emotions can be felt and expressed. You can’t force it though.
Sometimes patients and clinicians either prevent the deepening of a conversation or lift it up to a more superficial space. This looks like any number of avoidant behaviors, like joking, focusing on technical topics (anything from the minutiae of clinical care to hospital food), or behaviorally closing off (e.g., avoiding eye contact).7 Either might do this to “come up for air,” as it takes a lot of energy to inhabit a deep space with another person, or because the patient isn’t ready to descend to that depth yet. A clinician can strategically lighten the conversation for that purpose and help pace the emotional work a patient undertakes. A clinician might also do this unintentionally because they feel unprepared to manage their own emotions that might come up in such a space, some of which may be countertransference and some of which might be the rumblings of their own distracted heart in any quiet space.
Emotions can only be properly regulated in a supportive environment.
Some therapists call this “being a good parent” (or a good enough parent, anyway). Others call it creating a “holding environment” or a “container.” Here’s what Donald Misch writes: “When appropriate, the patient is comforted and soothed by the therapist; at other times, the therapist serves as a cheerleader, encouraging, nurturing, validating, praising, or congratulating the patient. On still other occasions, however, the patient must be confronted with respect to self-destructive behaviors. Appropriate protection, containment, and limit-setting are balanced with promotion of autonomy and independence.” He explains further that this involves “providing empathy, understanding, and verbal soothing; modulating affect; restricting self-defeating impulsivity or acting out; and generally setting appropriate limits. Holding and containing may also include allowing the patient to ventilate, emote, or otherwise express his or her thoughts, fantasies, or feelings.”
All our relationships operate with these dynamics to some extent, but it’s the job of the therapist to intend to build therapeutic relationships with this in mind. A patient’s relationship with their clinician in a medical context, likewise, will do a better or poorer job of helping them to cope with their circumstances and regulate their emotions. Knowing this, clinicians have a choice: they can try to make the relationship coast on courtesies and technical expertise (this will probably work a lot of the time to get a patient to a decision, although I don’t know the long-term existential and psychological effect), or they can try to make the relationship hospitable so a patient feels welcome and safe enough to do the emotional and existential work they need to do in the midst of their serious illness.
Clinicians can choose to attune.
Some people (like me) might struggle with this. I am not a naturally empathic or intuitive person, and I’ve spent a lot of time trying to learn it - both for the sake of my job and for everyone close to me in my life! For example, I need to intentionally try to look at things from the patient’s perspective, let go of what I might presuppose about them, and try to identify those goals and values most prioritized by them and align with them. This is both a broad approach and a moment-to-moment labor. I ask, “What is best right now?” I can also improve on this by being authentic (e.g., speaking like a normal person, admitting normal human foibles) and transparent (e.g., admitting my own limits).
The clinician must constantly monitor the state of the relationship.
If the relationship matters, then the clinician needs to track its health moment to moment. Things to track include the quality of trust, rapport, resonance, the beliefs the patient has about you (and others on the team), and the time you have spent and are spending together in certain tasks.
Doing this allows the clinician to prioritize between tuning up attunement or moving the conversation forward. Sometimes you’ve got a lot saved up in the “rapport bank” and can make a withdrawal with a challenging observation or recommendation whereas at other times you need to make some deposits and avoid any challenges. Sometimes an explicit process comment is in order. This is a reflection on the state of the encounter or the relationship, e.g., “I noticed whenever I bring up the care you might need after discharge, you change the topic. How are you feeling about having that conversation?” Process comments sometimes lead into “talking about talking about it,” where you have a preparatory conversation before the main, big conversation.
This might feel awkward to some clinicians. I think this is in part because they depend on the potency and urgency of the disease to force patients to cooperate with them, make decisions, and remain adherent to a therapy. I’m not saying these clinicians are intentionally coercive; it’s just the nature of a lot of clinical decision-making that the patient is captive by their need and therefore clinicians don’t need to track all these elements that help patients grapple with their lives. This means clinicians don’t know what to do if the relationship goes haywire or the patient can’t cope. In theory, a patient could go to a different doctor if they feel invalidated but in practice they often can’t, especially if they’re admitted to the hospital, so the need for all this emotional engagement might not rise to the fore, even if it simmers under the surface, occasionally erupting in stalled decision-making, non-adherence, no shows, or overt conflict, not to mention the turmoil the patient will face outside the encounter elsewhere in their life.
This is different from psychotherapy which is voluntary and in which the quality of the relationship should probably always come second only to safety. Therapists often find themselves in the place of making observations about how the quality of the relationship influences the client’s capacity to complete tasks. Clinicians in the medical space, on the other hand, are very unlikely to recognize when the quality of their relationship is impeding their patient’s capacity to decide or act.
As I was going through training, I found this to be one of the hardest things to learn: switching back and forth between monitoring this relational-psychological channel and thinking about the clinical details of the situation - e.g., forming a differential diagnosis and updating it on the fly and considering possible interventions. Sometimes I would swing too much in one direction or the other. After lots of practice (that is, both trying it out and taking time to reflect with others), I’m better at doing both at the same time now.
The clinician is an instrument of healing.
In the medical world, they can’t be the instrument of healing - the mere presence of the oncologist isn’t going to treat the cancer - but the clinician, in their own being, can help or hinder the patient in their pursuit of health and healing. This is certainly the case when we consider something like symbolic healing, where a patient feels restored to a sense of agency and meaning through the compassionate help of another. Others have written about the power of countertransference, or the clinician’s own emotional reactions to patient encounters (often conjured up by previous experiences - e.g., this patient reminds Dr. Lee of his own father’s avoidance patterns). Countertransference is only useful to a clinician if they have the time and wherewithal to reflect on it; otherwise they’re liable to just be buffeted about by it.
EFT therapists and researchers recognize two things about the therapeutic relationship: it’s therapeutic in and of itself because it provides a place where affect regulation can be internalized by clients, and from that safe environment clients can also learn to engage in important emotion-focused and emotion-informed tasks. While EFT is a form of psychotherapy, these observations almost certainly apply to all relationships in health care. I’ve seen patients delay their cancer care because they didn’t trust their oncologist. While it’s easy to chalk it up to the patient doubting the oncologist’s competence, it’s just as likely the oncologist didn’t offer a space in which the patient felt validated and soothed. If a clinician recognized that their very relationship with their patient had a healing power, how eager would they be to learn more about how to channel it?
One of the things I try to do when teaching is make implicit things explicit, whether they’re emotions, thoughts, behaviors, structures, processes. Here I’ve tried to do that using some concepts from EFT. Have others found similar cross-disciplinary reflections helpful in their practice of medicine?
Although I haven’t found it in the EFT literature, it seems to me not all secondary emotions are undesirable. Maybe you’ve gotten angry at your child for whining. Your anger was out of proportion to the incident and, even though your behavior wasn’t harmful, you feel disappointed, sad, or even ashamed at how easily you were angered by your child’s need. Those secondary emotions might provide a helpful starting place for reflection.
Because some emotions are maladaptive due to previous trauma, clinicians need to be sensitive to the possibility that, by engaging someone’s emotions, they may do harm even as they try to help. But neither can a clinician just opt out. The clinical encounter is an emotional encounter. The question isn’t whether a clinician will engage a patient’s emotions or not, but whether they’ll do so with intention, care, and wisdom. Knowing how sensitive serious illness conversations are, it’s incumbent on clinicians to learn how to navigate them well, and that involves learning about emotion.
Because some clinicians are highly intellectual and, to be honest, somewhat alexithymic, it’s worth mentioning not all big, deep emotions are maladaptive.
A patient who appears to deny the facts of their condition while crying speaks two different languages. Their tears say what their words cannot, and clinicians need to give their mind time and space to catch up with their heart.
This does not mean debating whether the patient is dying, usually a futile affair.
I almost always save any attempt to deepen the conversation for later (unless, because the patient wants it or urgency demands it, we address it sooner). I use the earlier portion of the conversation to test the waters: what kind of a person is this? How do they think? How’s our rapport? Can we achieve any kind of resonance together? Given this is my job, I may need to proceed absent rapport and resonance, but at least I do that armed with the knowledge that’s the case.
There is a break in eye contact that might suggest a patient is entering a more reflective space (looking inward and perhaps saying something like, “Huh”), or they’ve started crying and can’t maintain eye contact any longer. Even without the eye contact, the interaction should still feel slow in a meaningful (not plodding, boring) sense.
Really excellent piece. Those alexithymic doctors have to be absolute beasts in their field or it's better to move on as a patient. Trying to work out a serious illness with someone you are not resonating with is very hard, especially if there is a high level of ambiguity in the diagnosis or treatment pathway. I've created a mental map of alexithymia: family med < general internist < IM specialist; psychologist << psychiatrist and so on.
Wow! There's so much I love about this piece.
I appreciate the distinction between primary and secondary emotions and how venting can be helpful for primary emotions but unhelpful for secondary ones. It reminds me of the Buddhist parable of the two arrows. Sometimes in life, we get struck by an arrow (such as loss, illness, etc.). It’s painful, and there’s not much we can do about it. However, where we do have control is in avoiding or reducing the second and subsequent arrows. These arrows are self-inflicted, fired one after the other in response to the pain of the first arrow—like anger, guilt, rumination, blame, and so on.
Your advice to clinicians reminds me of Henry Nouwen’s words: “Healing is the humble but also very demanding task of creating and offering a friendly empty space where strangers can reflect on their pain and suffering without fear; and find the confidence that makes them look for new ways right in the center of their confusion.”
Thank you, thank you, thank you for your writing.