A reflection on empathy when working with persons with acquired brain injury
Author: Carrie Hartwell, PhD, MA, LCSW
Imagine. For the next few moments, set aside the pressing issues of the day – your schedule, meetings, and the patients or projects before you today – and simply relax, giving yourself the next few minutes to focus completely on the images and thoughts that follow. Try to quiet the usual hum of sounds and movement that surrounds you, clear your mind, and imagine…
Picture yourself in your home this morning. Go back there in your mind – step into the front door and look around you, noticing what is to the right, left, and in front of you. Notice the colors, the temperature, the smells… what sounds do you hear in your home this morning? Fill in the picture in your mind with the things and the people inside your home. Who is home today? Imagine your loved ones there with you, perhaps those you live with or those very close to you who have come to visit. Imagine each of their faces, what they are doing, where they are in the house. Bring to mind how you feel when you are there at home with them. What are the things and memories that surround you – your favorite spaces in the home, favorite photographs and memories, important life events that have happened here, and furnishings or objects in your home that you value? Spend a few moments walking through the home in your mind… go from room to room, noticing what’s in each room, the colors and items you see, favorite things, favorite memories in each space. Picture the details that matter most to you – the people and things that truly make this your “home” – as vividly as you can.
Now think about your past, and the many experiences and choices that have led you to be in this space now, in this home, at this time in your life. Think back through your work history, the jobs you have had that have helped you to come to the place of living in this home and having these things, and the ways that your career has grown and changed over the years, impacting your life as well as touching the lives of others. Bring to mind the people and relationships that have shaped and supported you over the years, helping to make you who you are today. As you consider your life as a whole, think about what has been most important to you, how your identity has developed and changed over the years, and how you feel about yourself and the life you have built. Picture the most satisfying aspects of your life, the things that bring you the most joy, the things you are proud of, the things you have accomplished or been recognized for, and the people you love most and are closest to – family, friends, loved ones, colleagues. Imagine the entire story of your life, including your past and the road you have traveled, your present, and all your hopes and plans for the future.
Now imagine that this morning, you leave for work as usual, leaving your home and loved ones to go do the important work you do each day. Imagine what you have ahead of you today, remembering for a moment the value you place on your career, as well as the ways that others are impacted by the work you do. As you are driving on your way to work thinking about the day ahead, suddenly you realize that you have taken a wrong turn and are on a road you do not recognize. You try to turn around and find your way back to your usual route, but with each turn, you find yourself becoming increasingly disoriented. You continue driving, certain that you will see something you recognize eventually, but the road becomes increasingly desolate until you realize that you are the only person traveling on it. Starting to feel a bit anxious, it occurs to you that you are in a completely unfamiliar place and have no idea how to find your way back. You pull over to look for a map, and you find that you do not have one. You check your cell phone and GPS, and you find that none of the technology you have with you works here. A sense of vulnerability begins to creep in as you realize that you are truly lost and have no way to get back, and no way to get help. You are overcome with utter disbelief – what could have happened? You just left your home minutes ago, as you do everyday… how did you end up in this place? You try to retrace your steps, trying to imagine what went wrong. You think about the home you just left this morning, the people you love and are not able to contact, the places you’re supposed to be today, and how you have no way of getting back or getting a message to anyone… today or indeed maybe ever. You try to open your car door and find that all the doors and windows are locked. You begin to panic.
You remain in your car and things begin to go dark. You become disoriented. The next thing you realize, people you have never seen before emerge from all directions, surrounding you and pulling you from your car in spite of your efforts to explain your situation and insist that you just need to get back home. They put you in a vehicle and drive you to an unfamiliar place. You continue to try to explain to them who you are and what has happened to you, but they look at you strangely and ignore your requests. You realize, to your horror, that they speak a different language than you and do not understand who you are or what has happened to you. You become terrified, feeling completely at their mercy, as you realize that you are powerless to get away from them or to return home. You have no idea what’s happening to you or why, and no ability to free yourself or to get in touch with your family, or indeed anyone. You are truly and utterly alone in a way that you have never been at any time in your life. You think about your spouse or partner. Your children. The people at work who are expecting you. How will you get back to them? You get up and try to leave, but you find that your legs aren’t working properly and that you can no longer walk. Even if you could, the doors are locked and you have no idea where you are or how to leave this place. Terrified, you begin to realize that other parts of your body are also impaired. You cry for help, but your voice wavers. You lose control of your limbs and bodily functions; even your mind seems to be failing you as you simply cannot believe what surrounds you. This cannot be real. It doesn't make sense. You are smart and capable and have important things to do with your life, and people who love you and depend on you. You think about the life you left this morning… the places you’re supposed to be today, at work and with your family, the important events coming up on your calendar. You simply have to get back. But you can’t.
Horrifying realities begin to set in. In this new place, you are quite literally trapped, in a body and mind that feel foreign to you. The body you have known so well for your entire life no longer feels like “you” – it responds differently and can no longer do the same things, and you find yourself doing things that embarrass you. Your skills, strengths, and even the intelligence you have always relied on now seem absent or inaccessible to you. The people around you in this new place don’t know the “old” you; your identity, and your status in relation to others, is forever changed. From this moment on, you will not be going back to your career, you no longer live with your loved ones, and all your friendships will fade. There is no opportunity to say goodbye to the world and people you left behind, no packing your home or office and taking the things that mattered to you – it’s all gone immediately, without explanation or time to prepare. From now on, people will be dressing you, wiping your bottom, and treating you differently, being unable to see the “real” you because of the way you now look and communicate. You are not beautiful or attractive in this place, and you may never again kiss or caress a lover… your masculinity or femininity, and your sexuality, have been stripped from you. In short, you may never be returning to the world you just left this morning. Your home, your relationships and family, your career, your memories, the things you are proud of, your abilities – all of them, your entire life as you knew it, and all the hopes and plans you had for your future, are now likely to be forever changed…
Empathy is defined as the capacity or action of understanding and vicariously experiencing the feelings, thoughts, and perceptions of another, from his or her perspective rather than one’s own (see Banja, 2006; Merriam-Webster, 2013). Empathy is a construct that can be found in the training curriculums and textbooks of a wide variety of professions, including the diverse fields of providers who serve individuals with acquired brain injury. At first glance, this ability to “put oneself in another’s shoes” may sound deceptively rudimentary and routine, but in reality, empathy can be both as critical and challenging as many other professional skills of brain injury service providers.
Empathy is not easy or innate. It requires of providers greater levels of personal openness, investment, and vulnerability well beyond basic “active listening” or sympathy (see Banja, 2006), and when working with brain injury survivors, it exposes us to significant pain and suffering. Who would readily elect to imagine having life totally, irrevocably changed in an instant, or to realize how vulnerable our own treasured, hard-earned skills, knowledge, and relationships are – things we consider “certainties” and constants in our lives and upon which we define ourselves and depend? Research from the field of social psychology has consistently shown that we are not automatically inclined to empathize with others who have experienced negative outcomes, and in fact, we tend to misattribute others’ negative experiences to internal characteristics of those individuals (while perceiving our own negative outcomes as the result of environmental factors) (see, for example, Jones and Nisbett’s classic study (1971) on the “actor/observer effect”) – a tendency that helps preserve our own egos and sense of safety in the world.
Empathy is an essential component of care for persons with acquired brain injury. As Banja (2006) notes, provider empathy is an approach to treatment that is fundamentally ethical, respectful, and empowering to patients and is, in itself, a healing clinical intervention. An empathic approach strengthens the provider-patient relationship, and research from a variety of health disciplines has consistently shown that the quality of this relationship or alliance is a highly influential factor impacting patient satisfaction, compliance, and outcomes (see, for example, Banja, 2006; Banja, 2008; Fuertes, Mislowack, Bennett, Paul, Gilbert, Fontan, & Boylan, 2007). Studies with brain injury survivors and their providers from multiple fields including psychology, medicine, physical and occupational therapy, and other professions have produced similar results, demonstrating the critical impact of patient-centered, empathic care on a wide variety of patient health, psychosocial, and functional outcomes following brain injury (Coetzer, 2010; Darragh, Sample, & Krieger, 2001; Judd & Wilson, 2005; Klonoff, 2010; Schonberger, Humle, & Teasdale, 2006; Schonberger, Humle, Zeeman, & Teasdale, 2006; Sherer, Evans, Leverenz, Stouter, Irby, Lee, & Yablon, 2007).
It is easy to forget sometimes that it is often a single experience on a single day – perhaps even a single instant – that ultimately separates a life like mine from those of the individuals with whom I work. They, as I, had homes, careers, places to be, and people depending on them. Traumatic brain injury, tragically, has no regard for history, status, dreams, or responsibilities, however vital. As a clinician working with survivors of traumatic brain injury, I am often reminded of a Latin phrase I first encountered many years ago while traveling in Europe: “Eram quod es; eris quod sum,” which roughly translates into English, “As you are now, so once was I; as I am now, so will you be.” Generally attributed to Horace, poet of ancient Rome, the saying has been used in art and epitaphs across continents and centuries, inviting viewers to reflect on their own mortality. In the context of my everyday work, far removed from the tombs of Europe, it is not the shared fate of death that the saying evokes, but rather the common humanity of the living. “As you are now, so once was I; as I am now, so… [could] you be.” As providers, it would be easy to lose sight at times, in a sea of assistive devices and deficits and diagnoses and indignities, of the wholeness and complexity of the human beings before us, with lives only some moments ago just like ours. And yet it is this critical awareness, of our shared vulnerability and relatedness, upon which our ability to provide quality care fundamentally depends.
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Banja, J. D. (2008). Toward a more empathic relationship in pain medicine. Pain Medicine, 9, 1125-1129.
Coetzer, R. (2010). Anxiety and mood disorders following traumatic brain injury. London: Karnac Books Ltd.
Darragh, A. R., Sample, P. L., & Krieger, S. R. (2001). “Tears in my eyes ‘cause somebody finally understood: Client perceptions of practitioners following brain injury. American Journal of Occupational Therapy, 55, 191-199.
Fuertes, J. N., Mislowack, A., Bennett, J., Paul, L., Gilbert, T. C., Fontan, G., & Boylan, L. S. (2007). The physician-patient working alliance. Patient Education and Counseling, 66, 29-36.
Jones, E. E., & Nisbett, R. E. (1971). The actor and the observer: Divergent perceptions of the causes of behavior. New York: General Learning Press.
Judd, D., & Wilson, S. L. (2005). Psychotherapy with brain injury survivors: An investigation of the challenges encountered by clinicians and their modifications to therapeutic practice. Brain Injury, 19, 437-449.
Klonoff, P. S. (2010). Psychotherapy after brain injury: Principles and Techniques. New York: The Guildford Press.
Merriam-Webster, Inc. (2013). Empathy [Online]. Available: http://www. merriam-webster.com/dictionary/empathy.
Schonberger, M., Humle, F., & Teasdale, T. W. (2006). Subjective outcome of brain injury rehabilitation in relation to the therapeutic working alliance, client compliance and awareness. Brain Injury, 20, 1271-1282.
Schonberger, M., Humle, F., Zeeman, P., & Teasdale, T. W. (2006). Working alliance and patient compliance in brain injury rehabilitation and their relation to psychosocial outcome. Neuropsychological Rehabilitation: An International Journal, 16, 298-314.
Sherer, M., Evans, C. C., Leverenz, J., Stouter, J., Irby, J. W., Lee, J. E., & Yablon, S. A. (2007). Therapeutic alliance in post-acute brain injury rehabilitation: Predictors of strength of alliance and impact of alliance on outcome. Brain Injury, 21, 663-672.
Corresponding author: Carrie Hartwell, PhD, MA, LCSW
Richmond Consultation Services (Psychotherapist in private practice)
5700 West Grace Street, Suite 108,
Richmond, VA 23226, USA.
Tel.: +1 804 503 1074
Fax: +1 804 288 2616
Editor’s note: The views and opinions expressed in the articles contained in the International Neuro-Trauma Letter are those of the authors and contributors alone and do not necessarily reflect the views, policy or position of the International Brain Injury Association or all members of the NTL Editorial Board. The NTL is provided solely as an informational resource and the inclusion of any particular article does not establish or imply IBIA’s endorsement of its contents.