From The Chair

March 2015

Palliative Care, Ethics, and the Estrangement of Emotions in Medical Practice

Pediatric palliative care and pediatric medical ethics have, for a variety of reasons, an overlapping relationship. In an article that appeared in Pediatrics in 2014 (available for free: http://tinyurl.com/PPC-PedMedEthics), Pam Nathanson and I traced some of the historical, cultural, social, and self-selection reasons for this overlap. In addition to describing both the opportunities and challenges of this overlapping relationship, we also proposed several ways to best manage this relationship.

Instead of reiterating what we wrote in that article, here I want to open up another perspective on this relationship, namely the ways in which medical practice is so often estranged from emotions (of clinicians as well as of patients and parents), how this estrangement is particularly problematic in the realm of pediatric palliative care (because in this circumstance emotions so often run so strong), how the resulting conflicts (both of frustrated unexpressed emotions, and the emotions that arise from conflict) get translated into ethical concerns as a more sanctioned way to deal with emotionally laden conflict, and how ethics consultation either helps to work through these emotional dynamics (of individuals, between clinicians and patients and parents, and within clinical teams) or simply further reinforces the emotional estrangement that started the whole cycle.

Let me, for the rest of this essay, unpack that very long sentence. First, what do I mean by “emotional estrangement”? What I am pointing to here are the ways in which we suppress the expression of emotions in day-to-day medical care encounters. This occurs through a combination of self-censuring (I am feeling sad or angry, but I can’t say anything about this feeling, because doing so would be viewed as unprofessional, or I can’t show how I feel because doing so will not help my child) or due to comments of others (You can’t let this get to you, or I need you to calm down). Even patients, parents, or clinicians who feel comfortable expressing one type of emotion (and who may do so at full volume) are likely to be much more reluctant to express other emotions. Over time, these acts of emotional suppression turn into emotional distancing and disowning. We lose the space to feel what we are feeling, first on the outside (in our social world) and then on the inside. Furthermore, medical practice prides itself on being evidence-based and rational, and is, depending on the setting, either ambivalent, awkward, or adversarial towards acknowledging and working with emotions.

Few of life’s events are likely to evoke stronger emotions than confronting a life-threatening illness or condition affecting a child. In the realm of pediatric palliative care, accordingly, parental and clinician affect — both positive and negative — is often dialed up to a very high level. Let me emphasize the duality of this affective increase: feelings of fear, sadness, anger, and guilt are often accompanied by feelings of love, pride, joy, and support. This is a potent mix. While the combination of strong emotions can result in deeply meaningful interactions, the combination may also combust, either within an individual or between people. In my experience, the likelihood of this happening seems to increase the more that the people involved are estranged from their own emotions or the emotions of others.

When emotions combust, conflict results. Yet rarely do we acknowledge and openly grapple with the underlying emotions that may be driving the conflict. Instead, we tend to ascribe the emotional intensity as arising from an underlying conflict about something couched in cognitive terms — conflict about “decision making” regarding a general treatment plan or about a specific intervention. The “decision” becomes the conflict, defining the terms of what needs to be sorted out, and emotions become a secondary issue (if acknowledged at all). While decision points in a treatment plan certainly can be flash points for conflict, my strong thesis here is that 9 times out of 10, the emotions of the people involved (the patient, family members, clinicians) are the essence of what the conflict represents. Metaphorically, while decisions often serve as lightning rods, emotions are the electricity in the atmosphere.

Importantly, the emotions of different people do not need to be “in conflict” for conflict to exist: if a parent and a clinician both feel sad but cannot communicate this reality to each other in a clear and compassionate manner, new emotions can arise and conflict can ensue. Perhaps even more importantly, many of the emotions that clinicians are “trained” to feel (in both the sense of not being permitted to feel or display certain emotions while being allowed or rewarded for displaying others) are seemingly more “sophisticated” embellishments of emotional pain, arising from primary emotions of fear or sorrow. As a physician, if I am called to the bedside and see a very ill child who is suffering in physical pain, I have received many cues over the years that I have to somehow stifle any feelings of intense anxiety (I am not competent enough to help this child) or immense sadness (This is just so overwhelmingly bleak for this child). So instead of being self-aware of these feelings, and managing them, I instead might morph them into less vulnerable feelings and into more judgmental emotions, such as self-righteous anger (How could anyone let this situation get this bad!). With practice, this morphing process takes place quicker than a blink of an eye, concealing from ourselves and from others the emotional origins of our response.

Enter the ethics consultant. The conflict became so sharp or intractable that someone, most often a member of a clinical team and typically the attending physician (because of how the medical hierarchy operates to influence and control people’s behavior — a topic for a different day) asked for an ethics consultation. And, armed with the tools of rational discourse about beneficence, autonomy, and other concepts, or the skills of mediation, the ethics consultation process may provide just enough of a spray of cooling water upon the emotional fires to enable the immediate conflict to be resolved. But what I want to emphasize here is the choice to either address, or leave unaddressed, the emotions that are the essence of the conflict. For me, almost all ethics consults require bringing underlying emotions to light: the consult may also require other more intellectual tasks, but emotions and how we manage them are foundational. I feel so strongly about this that, in my view, to not address the emotional underpinning of discord is so misguided that doing so is an unethical act.

How can we address emotions in an ethically appropriate manner? I will end by simply saying, as my parents did when I was growing up, look to yourself and your own actions before judging the behavior of others. I try, in other words, to not perpetuate the estrangement of emotion in my own life. While I do not want to turn my patients or their family members into my therapists, I do state openly when I am feeling fear, worry, anxiety, or sadness. I go out of my way to avoid ever causing someone else to feel shame regarding the emotions that they are feeling. I remain curious and open to emotions, my own and those of others. Is this really a large part of the job of an ethicist? Emphatically, yes.

Chris Feudtner, MD, PhD, MPH, FAAP
SOHPM Chair