Long

Careful: Do touch

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.

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Putting on latex gloves – intimate but distant.
Source: Southafricab2b

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.

 


Tobias Haeusermann finished his Ph.D. in Sociology at King’s College, Cambridge. He is now working at the Health Ethics and Policy Lab in Zurich.