What is empathy, and what does it have to do with Huntington's disease (HD) care? Social scientists define empathy in many different ways, but it boils down to the complex neurobiologic, emotional process that allows us to "walk in someone else's shoes". This is different than sympathy or compassion, which corresponds to our feeling "for" another. Empathy goes a big step further to feeling "as" another. Empathy is an active process, because "walking in someone else's shoes" requires learning and understanding what the other is going through.
What's empathy got to do with it? Empathy can take HD "care" to a higher level.
Empathy: the Bioneurologic Level
Though the science of empathy as a social interaction is relatively new, what is known is a good place to start understanding it. And learning more about what goes wrong with it in HD increases our understanding of HD, which in turn can improve care.
Mirror neuron system: Yawning is "contagious" because the same set of neuron cells (mirror neurons) are discharged in the observer of yawning as those activated when yawning. Similarly, when seeing someone smile, the observer "automatically" smiles back. This mirror neuron system -- which mimics the action of another -- is thought to be a starting point for compassion. But of course it gets more complicated; since discovery of the mirror neuron system, more systems have been described that ultimately enable us to empathize, or "understand" the emotions, pain and suffering of another. In fact, studies in HD show that empathy neural systems can work separately.
In early HD: In an important study performed by a group in France [Trinkler I 2013], investigators studied empathy in a small group of individuals described as having early HD. As has been known from earlier studies, HD individuals have impaired ability to recognize facial expressions (positive or negative) of emotion, and also an equally impaired ability to express facial emotions. This suggests the mirror neuron system is damaged in HD.
But importantly, investigators showed what was not known before: these individuals have intact ability to "understand" feelings and emotion in self, and to understand the feelings and emotions of others (empathy). So while mirror neural system function is impaired, others are not. Though it was studied only in individuals with early HD, it is likely to occur in later HD as well. This same pattern of emotion impairment is found in other diseases including Parkinson's and a number of mental illnesses.
How should this impact care? With the knowledge that there is difficulty in recognizing and expressing emotions -- but not in feeling and understanding them -- HD individuals, care-partners and care providers can all learn to express emotions verbally, and to respond more appropriately to misunderstandings caused by impaired emotion recognition and expression in the HD individual. It is likely that the perceived change in personality of the HD individual is as least partially due to the impaired inability to recognize and express emotions.
Doctors and empathy
Though it has been assumed that doctor empathy is good for patients, there has not been an evidence base until recently. In two similar studies, one conducted at Jefferson Institute in Philadelphia [Hojat M 2011], and another larger subsequent study in Italy [Del Canale S 2012], investigators showed that patients (at least those with diabetes) who are cared for by doctors who rate themselves more highly on a well-validated empathy scale do a lot better than those patients with doctors who score low. In these studies, doctor empathy was defined as having 3 parts: understanding the patient's perspective, concerns, experiences, pain and suffering, having the capacity to communicate this understanding, and demonstrating the intention to help.
How should this impact care? We should encourage empathy specific education/training for HD doctors about the importance of developing and showing empathy. From the patient standpoint, better care will be had from an empathetic doctor. We can rate our doctors' empathy by using the following validated scale: On a scale of 1-5 (five being the best)
- Understand my emotions, feelings and concerns
- Seems concerned about me and my family
- Can view things from my perspective (see things as I see them)
- Asks about what is happening in my daily life
If you score your doctor pretty low on this scale, you might want to find another.
Care-partners/care-givers and empathy
Effective care-partnering in early HD requires that each person, both the affected individual and the care-partner have an understanding of the others' needs, mood, and emotions. Proactive care for both persons is best when there is knowledge of the disease and how it can affect the mood and emotions of the other. For instance, knowing that emotions must be expressed differently (verbally) to be communicated effectively helps maintain trusting relationships. Knowledge not only allows us to "walk in the others' shoes", it importantly helps us to problem-solve with the goal of improving quality of life for both partners. Sharing partner experiences, no matter the stage of disease, in support or other groups can lessen the pain and increase knowledge.
When empathy is too much of a good thing: Walking non-stop in someone else's shoes is exhausting. While caregiver empathy is essential to good care, it can lead to personal distress and burn-out particularly when exposed to, and taking on the distress of another over a long period of time. Respite, or stepping away from the distress emotionally, no matter how short the time, is essential. Getting and accepting support from others -- family, friends, medical professionals, HD social workers, etc -- is vital. Sharing experiences in support or other peer groups is an important mechanism for lessening burn-out at any stage of HD whether care-giving occurs in or outside the home. Keeping a journal can provide insight and self-support. Finding the right balance between empathy for another and self preservation is a battle.
Author's comments: Empathy is the work that makes us more aware of other people's suffering. But it is so much more helpful when we turn those feelings into actions.
Trinkler I, Cleret de Langavant L, Bachoud-Lévi AC. Joint recognition-expression impairment of facial emotions in Huntington's disease despite intact understanding of feelings. Cortex. 2013 Feb;49(2):549-58. doi: 10.1016/j.cortex.2011.12.003. Epub 2011 Dec 16. PubMed abstract
Hojat M, Louis DZ, Markham FW, Wender R, Rabinowitz C, Gonnella JS. Physicians' empathy and clinical outcomes for diabetic patients. Acad Med. 2011 Mar;86(3):359-64. doi: 10.1097/ACM.0b013e3182086fe1. PubMed abstract
Del Canale S, Louis DZ, Maio V, Wang X, Rossi G, Hojat M, Gonnella JS. The relationship between physician empathy and disease complications: an empirical study of primary care physicians and their diabetic patients in Parma, Italy. Acad Med. 2012 Sep;87(9):1243-9. PubMed abstract