Beyond the NURSE Acronym: The Functions of Empathy in Serious Illness Conversations

Introduction:

Empathic communication, defined as both responding to emotions and actively appreciating another’s world view, is associated with better outcomes for patients and families, including decreased anxiety and depression, and improved coping^1–5. Despite this, clinicians who have not undergone formal communication training typically focus on information exchange and miss patients’ emotional and social cues. To address this gap, we use the acronym NURSE (Name, Understand, Respect, Support, Explore) ^6,7 to teach trainees how to respond to patient emotions. When used effectively, these skills communicate caring and help patients and families navigate their emotions and cope with their circumstances, both of which ultimately help with decision-making. However, we worry that some learners may not progress beyond this model, and may even see these empathic statements as a tool to get emotions to settle down and let the patient can make the “right” decision. This suggests that we - the teachers - need to do a better job explaining the way that emotions and empathy function in the clinician-patient/family interaction. Emotion and decision-making theory^8,9, as well as our clinical experiences, lead us to conclude that skilled empathy, beyond resolving emotion so the conversation can move forward, helps us in these discussions in at least four additional ways. Empathy helps us uncover and understand patient values, to appropriately pace the conversation, to facilitate healthy grieving, and, ultimately, transforms how we approach our work. Below we describe these four functions of empathy in an encounter in which we meet with a patient with serious illness or their family to discuss medical decisions. We focus on the hospital setting, where we meet families in crisis and must build a connection quickly. However, these skills may apply to a wide variety of clinical encounters.

Beyond the Facts in Medical Decision-Making

Medical decision-making in serious illness is sometimes framed as a cognitive process: clinicians share a prognosis and the patient comes to a decision based on what they value. However, thoughts and emotions are closely entwined - emotions play a key role in cognitive appraisals and inform subsequent decision-making. Take this example (a composite from our experience):

Ms. S is a 70-year-old woman who was healthy until she was diagnosed with unresectable cholangiocarcinoma a month ago. She opted for palliative chemotherapy; however, before her first treatment visit, she was admitted to the hospital with sepsis. She has been hospitalized for ten days and has suffered from liver and kidney failure. The palliative clinician is meeting with the patient and her three adult children to discuss goals of care. Two children have come in from out of town, and one of these has not seen his mother for eight months. The other adult child has a physical disability and was living with her mother, who was her paid caregiver.

The facts are clear: Ms. S has a terrible prognosis, with an aggressive, incurable cancer, and now organ failure. Most clinicians would agree that she is dying. However, a variety of non-clinical factors can affect how the family views the scenario. One of these is the story they hold about the patient. In this case, this is an individual who is young and healthy for her age. She is a “fighter”, someone who beat the odds to go to college and have children despite many setbacks. Information about the severity of her illness and the likelihood that she will not recover may then be met with shock and disbelief, and the family perspective will take time to come into alignment with the clinical perspective. A clinician who can appreciate the family’s story will accept that they may not be immediately able to make decisions based on the medical facts.

The multiple ways in which relationships and family roles can affect medical decision-making will also be familiar to palliative care clinicians. ^10–12 Family members who live farther away may experience guilt at not having been there more, while a cohabiting or caregiving family member is facing a disruption of their routine, self-concept, and roles. If one family member is a formal surrogate and navigating a variety of family member opinions, managing disagreements can have long-term repercussions for grieving, relationships, and the family system going forward. In the case of Ms. S, the family will worry about what will happen to the disabled adult child who depends on her mother. In addition, the patient, if she can participate, may feel internal pressure to continue her caregiving role. Those role perceptions and resulting worries may, at least initially, override what she would think is best if she were only thinking about herself.

Clinicians who view these factors as obstacles to making decisions may try a few general empathic statements (“This is hard” or “I can see you’re sad”). Patients and family members are less likely to feel understood by such superficial and generic responses. ¹³ However, a clinician who views the family’s stories as central to decision-making will treat them as clues to help the patient and family navigate this process. Sitting with these emotions, responding to the unique, nuanced nature of each family’s situation, and reflecting the underlying values in the ensuing discussions can help clinicians, patients, and families move forward together.

Four ways that empathic communication helps us in goals of care conversations

1. Uncovering patient values

Beyond naming an emotion, the empathic clinician perceives more subtle, contextual and emotional levels in a conversation. He or she approaches each family with curiosity and listens for the subtext – how something is said, small differences in word choices, as well as facial expression and body language. All of these give us clues to values that can help the clinician recommend a plan of care that is aligned with the patient’s values. For example, Ms. S might say: “I have to get better”. Hearing the intensity behind that, we might explore more, and learn about her sense of obligation and worry about her dependent family member. We may also interpret a family member’s statements about a patient’s values differently depending on the emotional valence. For example, we may choose to explore a patient’s views about prior medical experiences with the hope of gathering information that could be extrapolated to future decisions. In a discussion with a surrogate, we may ask: “How did she feel about being in the hospital? What was that like for her?” Few people describe anyone enjoying being in the hospital – but as we hear the words, we are also listening to their intensity (does the answer involve the word “hate”?) and the emotions behind them. Similarly, when we ask a surrogate whether the patient had past experiences with someone who had serious illness, we are listening not only for the patient’s thoughts but about their emotional reaction to that experience. Hearing these subtle aspects of emotion and perception, beyond the words themselves, helps us uncover values.

2. Knowing when to pause and when to go forward

Grief, guilt, and other emotions can make it difficult to move forward quickly with a decision. Noticing and providing space for emotions, particularly after discussing a difficult prognosis, helps us judge where we are in the conversation and whether we are ready for next steps. Sensing these emotional reactions prevents us from pushing forward to have an unproductive and potentially traumatic conversation. This might involve, after discussing a dire clinical scenario, asking a question such as “What do you make of the information I just shared with you?” or simply stopping to see what facial expressions, body language, and words come next. If the emotional temperature remains high, we know to hold back and allow more time.

3. Facilitating coming to terms with loss

The families we care for in the hospital are in crisis, and often are already emotionally stretched with coping just with the hospital setting. A goals of care conversation is likely to intensify emotion or bring up new emotions. Intolerance of emotional distress can lead to maladaptive coping, which can include avoidance (as with the family member that does not return the doctors’ calls), impulsive behaviors, verbal or physical aggression, substance use, and self-harm. ¹⁴ Helping patients and families express their emotions and accept even their most difficult to tolerate emotions as part of their larger story, while challenging in the moment, is more likely to lead to improved coping.

Communication with patients and families has the potential to be therapeutic in and of itself if we embrace emotions as critical components our encounters. First, sensitivity to the patient’s perspective and emotional state plays a large part in what prognostic information we disclose, and how we disclose it. ^15,16 In our communication courses, we teach that an emotional reaction means that the patient has taken in the information we have shared. However, whether this facilitates healing or not depends partly on how we deliver the information. If we are not reading the patient or family member’s emotional readiness, we can contribute to unhealthy coping and loss of trust. A physician who walks into Mrs. S’s room and, without making an effort to understand her perspective, coping style and emotional readiness, announces to her and the family that she is going to die soon, risks a breach of trust, which may lead to the family shielding Mrs. S from doctors, and being reluctant to hear any further prognostic information at all. Being attuned to emotional and other contextual factors in an encounter leads us to share information in a way that is more likely to preserve trust and support the family’s grieving process. In acknowledging emotions and being willing to sit with them without attempting to fix them, we validate the emotional and individual aspects of the illness experience. Naming and exploring a person’s internal experience – particularly in a way that is individualized to the person we are talking with - encourages emotional expression.

Further, we speculate that empathic interactions after a difficult diagnosis or during the dying process may help a family grieve. ¹⁷ One way of moving through grief is to tell stories about the person who is dying or has died¹⁸. Thus, during a family meeting, when we ask a surrogate to tell us about the patient and what he values, we may be helping the family member with more than just the decision of the moment. Similarly, in such conversations, we explore and validate a patient’s identity as a person. When we hear that a patient is described as a fighter, we might respond that “I can see that he has fought this disease so hard”, or, “It’s been a very long fight”. By using such a reflective statement in an encounter, we may be able to help the family begin the process of remembering the patient, giving voice to their values and individual qualities – almost as if we were helping them begin to write a eulogy. Clearly, then, as with a eulogy, our words are most helpful when they are based on careful listening and individualized to what we are hearing.

4. Transforming how we approach our work

The stress of illness and dying can exacerbate maladaptive coping styles and mental health concerns¹⁹. Confronting end of life also brings out cultural and religious differences between clinicians and patients that are less apparent in routine medical encounters – including beliefs about what is appropriate to talk about and how it should be discussed, who should be making decisions in a family, and the role of God or religious leaders in deciding how to proceed medically^20,21. For those of us practicing clinical palliative care, we may encounter difference and conflict multiple times a day. In our work in the hospital, we frequently overhear clinicians dismissing patients and families who express diverse beliefs or coping styles as “unreasonable” or even “crazy”.

The cultivation of an empathic stance, including curiosity, attending to emotions, and an underlying belief in the validity of others’ experience, helps us move beyond such views. Through close listening to what is unsaid as well as what is said, our empathy becomes both more genuine and more accurate. We do our best to drop our assumptions and view each individual as unique. We hear deeper meanings, and at times, to help patients understand and construct their own stories. Over years of involvement in end-of-life discussions, we develop a growing awareness of common illness experiences, themes that we hear over and over – and while listening, we test to see if an experience we perceive fits into one of those paradigms, or if we need to develop a new one. This is what Carl Rogers described accurate empathy – it is specific to the person we are talking to and based in our best guess about their inner experience of the world^22,23.

Listening in this way, deeply imagining another’s perspective, changes us. Through the practice of accurate empathy, we become more open and come to regard patients and families more positively. Listening deeply, we can’t help but believe that every individual is unique and interesting – and that attitude has the power to change how we approach our work. Our own judgments and opinions do not disappear but are set aside. We become more open to diverse patient and family experiences, and less likely to label family members as “difficult”.

Furthermore, the cultivation of empathy and acknowledgement of emotions changes how we are with ourselves and with other members of interdisciplinary team. It’s easy for clinicians to adopt maladaptive strategies towards emotionally challenging cases. For example, when we have a patient who evokes negative emotions in us, if that feeling is unacknowledged, it might lead us to avoid their room, and ultimately to them receiving substandard care. By developing mindfulness of our internal states, we learn ways to work through our own stories and emotions to provide the best care. Furthermore, in our interactions with other clinicians, if we can see how emotions and other contextual factors play into patient care decisions, we are better able to navigate conflict. We learn to care for ourselves and our team members’ emotions, to develop ways to debrief challenging cases within our interdisciplinary teams, and to actively practice and encourage self-care. ^24,25

Conclusion

In this paper we have described, based on our clinical work, a more nuanced view of emotions and deeper functions of empathy in goals of care conversations. We do not claim to have comprehensively reviewed all aspects of empathic communication or responding to emotions. Further research is needed to identify the specific aspects of skilled empathy and the effect they have in communication encounters. Beyond just the serious illness conversations described in this paper, these skills are likely applicable to many different types of patient encounters.

The goal is not to use empathy to make emotions disappear. Rather, by talking about emotions and about who the patient is as a person, we help patients and family members weave new stories and facilitate the beginning of a natural, long-term healing process. Such a conversation can help both clinicians and family members understand a patient’s priorities and values and be more comfortable with any plan that is developed. ^26,27 The NURSE framework offers a first step in guiding those discussions, but it must be enhanced with a deeper understanding of the role of empathy, and skills to individualize our responses to each patient.

Table:

Functions of Empathy in a goals of care discussion

Function	Example
Uncovering patient values	Listening for emotional intensity in patient/family responses to values questions
Identifying stopping points	Slowing down the conversation in response to intense emotion
Facilitating the grieving process	Encouraging the family to tell stories about their loved one. Verbally reflecting the patient’s strengths
Transforming how we approach our work	Developing a belief in the validity of others’ experience Cultivating curiosity