Careful: do touch

Tobias Haeusermann
August 13, 2014

Let me tell you a story, a story about a kind and sweet woman that I cared for, in all manners of the word. Ms Warnett[1]  was in her mid-nineties, of reasonably sound health, and of an  unassuming and modest disposition. Some people, though quiet and  reserved at first, grow more dear to one’s heart with time. Ms Warnett  was such a woman. Never married and childless, she could look back on an  honest and upright life that was “without much sizzle”, as she’d say.  One morning I showered her and she told me with a grin and chuckle, “You  know, before coming here [the care home] no one had ever seen me in my  birthday dress. But oh well, you’re much too young for me, so I don’t  care.” When I began working in elderly care, I did care. The world of  body fluids and odours frightened me. But a few weeks in, I got used to  it, like one gets used to a rock in one’s shoe. You know it’s there but  you go on.

Care can be a frustrating exercise. It offers the most intimate  insights into human nature: its lows, its highs, its errors, its  embarrassments, and its inspiration. While my work at times felt tedious  and repetitive, every day was a brand new day for Ms Warnett. She’d ask  for my name and my favourite dish; I’d tell her my name and that I  loved a good cheese fondue. She’d then repeat my name, followed by a  pause and a pensive, “that’s not a name you hear every day.” One late  autumn day, I was asked to accompany her to the dermatological surgery.  She had developed skin cancer on her ear for the second time, and  radiation therapy had previously been of little avail. As a result, a  very small area of the lesion had to be shaved off to further examine  the cancer and determine if surgery was justified. We took a cab and  entered the sterile hospital lab, with its customary humming and beeping  of high-tech machines and sleek swooshing coats. While the biopsy of  her ear was being taken, without the relief of anaesthetics, Ms Warnett  firmly pressed my hand. She never complained about any pain, but when I  glanced at her face I saw a few teardrops trailing down her cheeks. And I  noticed that the same was happening to me. At first, I felt embarrassed  and unprofessional, yet this was soon replaced with a little shiver  deep in my stomach. An angry feeling started to boil. Why does she have  to go through this? Her nephew, who had made the decision to treat the  cancer, never visited her; how could he know what’s best? The cold and  concentrated faces of the medical staff didn’t help. They seemed  mesmerized by a small piece of skin, but they couldn’t see beyond it.  They didn’t see her. They didn’t see us. Upon leaving the lab, I was  disturbed. Ms Warnett was hungry and glad to go home. I know that  memories of pain can be burned into one’s psyche, would that happen to  her? The next day, lying comfortably in her bed, she greeted me  cheerfully and asked me for my name and favourite dish.

Her operation turned out to be a success, though sadly Ms Warnett  died a year later of natural causes. I don’t know if the operation  prolonged her life or shortened it. I do know that my behaviour was  unprofessional. Or so I was told. Can intimacy and care be combined? It  seemed to me that in care the more professionalised and specialised  one’s work, the less room there remains for intimacy. And intimacy  doesn’t pay well. However, I have to admit, if I needed surgery I’d  rather have a dispassionate surgeon with a firm hand than an empathetic  medic who can feel my pain. I’d want Mother Theresa by my bed and  Superman in the emergency room. But who of the two would decide what was  best for me when I can’t decide for myself; when care doesn’t  necessarily mean cure? We admire the surgeons for their objectivity and  refusal to seek our tears, our sympathies. They keep us at arm’s length,  guided more by intellect than by heart. Emotional engagement has never  been one of medicine’s strong suits, but still inter-personal care ought  not be ignored or rejected because of that. A growing body of research  now suggests that expressive touch improves interactions between GPs  and patients, and the conscious use of such intimacy might enhance not  only communication, but also patient wellbeing. In light of the rising prevalence of chronic illnesses, these findings gain ever more significance.

Never in history have we reached such a high life expectancy, and yet  never have chronic diseases been more widespread. Becoming so old is  new, and Western society is still adjusting to this new world. One where  most infectious diseases keep falling while chronic diseases continue  to rise[2]; a world where, as psychologist Robert Kastenbaum[3]  declared, we are not only living longer, but are dying longer as well.  Due to their enduring, aggregating quality, death from chronic diseases  commonly follows long phases of anguish and ailment, generally — and  quite tellingly — named morbidities. Historically, the dominant paradigm  of care has been focused on infectious diseases, providing acute rather  than chronic care treatments. Ironically, the same systems that have  enabled us to grow to such old age are now ill-equipped to meet the  needs of the chronic disease patients that these same treatments  produced. Indeed, dealing with chronic disease entails care practices  that are not nearly as glamorous and life-changing (or life-saving) as  those directed at acute, therapeutically-oriented care. Care is becoming  more and more an intimate and long-winded affair.

Besides the gradual switch from infectious to chronic disease,  another change looms in the demographic future. Although the  aforementioned trend appears to bear witness to further gains in life  expectancy, the extent to which such gains will materialise remains  uncertain. In fact, for the first time in history, the rise in life  expectancy seen in affluent nations might slowly be reversed owing to  the mounting risks inherent in chronic diseases. All these new realities  have led to new concepts of care, placing emphasis on holistic  treatments. These include “chronic disease care” models, “palliative  care”, “community-based care”, or “relationship-centred care”. Such  models all share similar characteristics, emphasising person-centred  care as a core concern. And similar to general chronic disease models,  they aim to avoid unwarranted hospitalisation, empower patients to cope  with and know about their conditions, and facilitate collaborative  decision making between the physicians and patients. Such approaches  have been implemented in many Western countries and a considerable  effort is being directed at expanding the provision of a form of care  that is more suitable for patients with life-limiting as opposed to  life-threatening diseases.

However, from the perspective of the carer, applying a person-centred  care approach means walking a thin and fragile line, simultaneously  maintaining empathy and professionalism. This dilemma is seldom  discussed, which seems surprising, not least because care is tied to  virtually every step of the life course. Our parents care for us when we  are born, as we grow up, and if we fall ill. We are taught to take care  of ourselves and to be careful when we act, as careless behaviour leads  to harm. We learn that to love someone means to care for them, not to  neglect and abuse them. As adolescents, we strive for a carefree and  independent existence until the day we build a family of our own and  pass on the very care we were hopefully lucky enough to receive as a  child. When we grow old or become chronically ill, we gradually depend  more on the care of our family or the community we are a part of.  Indeed, various forms of care are a constant companion throughout our  lives and are at the very essence of what it is to be human. Care is a  part of life, not only the purpose of cure.


[1] To Protect Her Identity, I Have Followed The Usual Tradition Of Changing The Name And Defining Characteristics.

[2] It Is Worth Taking Into Account That On A Global Scale Infectious Diseases Are On The Rise Again  And The Opposition To Detached Medical Practice Is Still A Culturally  Formed Concern In The West. The Tension Between Detachment Embodied By  The Physician And Humanism Embodied By The Carer May Therefore Well Be A  Tension Between Detachment And Engagement In Both Professions And  Presents A Dilemma For Most Medical And Care Workers, May It Concern  Both Infectious Or Noncommunicable (I.E. Chronic) Diseases.

[3]Kastenbaum, R. (2004). On Our Way: The Final Passage Through Life And Death. Berkley: University Of California Press.

All by
Tobias Haeusermann