Dalhousie University School of Nursing, Forrest Building, 6299 South St, Halifax, Canada
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Doctoral Student
Dalhousie University School of Nursing, Forrest Building, 6299 South St, Halifax, Canada
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1 INTRODUCTION
Carel”s goal in Phenomenology of Illness is twofold: to use phenomenology to better understand illness and to highlight the value of illness to philosophy. The result is a book that is relevant to two very different readers: the clinician or health researcher, and the philosopher. I approach this review as a registered nurse and doctoral student, and, thus, my reading of the book is seen through a clinician researcher lens. Those familiar with the history of phenomenology are likely to argue that a phenomenological treatment of illness is not novel, which Carel herself highlights when distinguishing her work from that of Merleau-Ponty, Sartre, Toombs, Svenaeus, and others.1(p36) She argues that these works have primarily focused on specific features of illness, as opposed to illness generally, whereas she seeks to develop a comprehensive phenomenology of illness.1(p36) Carel states that an important part of this general framework is the ability to account for seemingly paradoxical phenomena such as traumatic growth wherein individuals report greater happiness after a brush with serious illness.1(p38) Such a general framework is a worthy and valuable goal to both audiences of the text, and, in this effort, Carel largely succeeds.
2 SUMMARY
Carel”s writing is a wonderful example of the power of the phenomenological approach. Phenomenology of Illness leaves the reader feeling a deeper appreciation for the experience of serious illness generally, and breathlessness specifically. Her use of quotes and stories is powerful and helps to highlight the effect of illness on lived time, space, body, and relation. An example of one such quote that highlights how illness affects our imagined future comes from Arthur Frank”s2(p27) description of his cancer diagnosis:
What was it like to be told I had cancer? The future disappeared. Loved ones became faces I would never see again. I felt I was walking through a nightmare that was unreal by utterly real. <…> My body has become a kind of quicksand, and I was sinking into myself, into my disease.
The text is rich with examples like this, both from Carel”s own experience and other published works. This approach is key in the book”s ability transform the abstract to the concrete.
Carel restricts her efforts to “serious, chronic, and life-changing ill health, as opposed to a cold or bout of tonsillitis.”1(p6) The first chapter of the book summarizes the contributions to phenomenology of Husserl, Heidegger, Merleau-Ponty, and Sartre that are used through the book. This is a welcome piece of reading for those coming from a clinical background because it introduces concepts with admirable clarity. Carel develops her general framework in Chapters Two to Four and then applies it to the phenomenon of breathlessness in Chapter Five. The framework consists of a synthesis of Toomb”s five losses of illness3; the objective body and the body as lived as introduced by Husserl and developed by Merleau-Ponty4; Sartre”s description of the objective, subjective, and intersubjective levels of the body5; and the concept of the healthy body as transparent. This framework provides a convincing and seemingly complete account of illness” profound effects on our ways of being in the world and provides important insights into the relational aspects of illness.
Chapters Six, Eight, and Nine are applications of how this framework can help to understand and address such issues as the concepts of “ill but well,” the unintentional marginalization of the knowledge of patients (epistemic injustice), and illness as an invitation to philosophy (for both patients themselves, as well as philosophers through case study). These three chapters have far-reaching implications and may serve as the groundwork for exciting developments outside of philosophy. For example, a difficult problem in the field of health economics has been that the general public generally underestimates the quality of life experienced by those with severe illness or disability. Generally, national guideline bodies state that the public perception of quality of life in a given health state should be used in economic analyses (Canadian Agency for Drugs and Technologies in Health
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As a clinician, I found Chapter Seven “illness as being-towards-death” out of place and not necessary to the overall thesis of the book. By the time a reader has arrived at this point, the importance of our relationship with death in shaping meaning, and the role that illness can play in drawing attention to our mortality, has already been convincingly presented. The first half of the chapter provides background on the importance of death that makes more sense to be featured in the earlier parts in the book (and to some extent is, for example, in the bodily doubt chapter). The second half attempts to restructure Heidegger”s definition of death in order to allow it to be de-individuated and allow a relational being towards death.1(p178) The result is an abrupt shift in the approach of the book from one that is accessible to all audiences, to one that is dense and difficult to understand for those who do not have the requisite familiarity with Being and Time7 and its criticisms. Many clinicians will be left wondering why it was important and why it appears so late in the book. This chapter could perhaps be supported by future work that will help make clear why death needs to be de-individuated for Carel”s framework to be complete. Until then, this chapter will likely be of most interest to academic philosopher whereas the most important content for clinicians is covered in a more accessible way in earlier chapters. While this Chapter provides additional depth and understanding, mastery of the content at the level it is presented is not likely necessary in order to apply Carel”s framework to clinical practice or theory driven research.
3 GOING BEYOND A WORKSHOP
As mentioned previously, Carel”s framework and her discussion of its potential clinical utility is one of the most exciting possibilities stemming from this book. In Chapter One, Carel states that phenomenology provides the means through which illness can be used to “explore an individual life, its meanings, goals, and values and how best to modify them in response to illness.”1(p15) A footnote hints to the promise of a “patient toolkit” that “aims at enabling this process.”1(p15) The toolkit itself falls somewhat flat, and, in this section, I explain how this framework and a true “toolkit” approach could lead to a paradigm shift in clinical care.
The patient toolkit is introduced as one possible solution to the issues of epistemic injustice discussed in Chapter Eight. Epistemic justice as defined by Fricker takes two forms: testimonial injustice in which the experiences and opinions of those in a disadvantaged position are ignored and discounted, and hermeneutical injustice which is when the lack of “collective hermeneutical resource”8(p7) renders it impossible for a person to explain their experience in a way that can be understood by others. Carel”s toolkit takes the form of a workshop centred around a three step process she describes as bracketing the natural attitude, thematizing illness, and reviewing the ill person”s being in the world.1(p201) Interestingly, Carel offers little discussion regarding the apparent conflict between her hermeneutic phenomenological approach and her use of bracketing in the toolkit. She intends the process to focus attention in the experience of illness rather than the objective reality of the disease, encourage consideration of the myriad ways through with the illness is experienced (eg, cognitive and emotional), and gain new understanding of how the illness experience has changed the individual”s way of being in the world.1(p201) It was originally intended as a patient resource but is also used with clinicians or mixed groups. The workshop as described seems unquestionably valuable in helping clinicians to revisit the way they approach care and is similar to other arts-based programs intended to improve empathy and encourage a holistic approach to care.9 Despite this, I do have some reservations as to whether the toolkit as described will be able to realize its potential.
The primary issue with the toolkit is that it is not really a toolkit at all, but an in-depth full day workshop. There is no doubt that this format allows for a depth of reflection that would be difficult or impossible to achieve otherwise, but it severely limits the ability of the intervention to reach large numbers of patients or clinicians. Perhaps a workshop can be the primary form of the intervention, but a toolkit suggests something I, as a clinician, can turn to in the moment to help support my assessment or chip away at some underlying epistemic injustice. I am reminded of the way in which the experience of postpartum parents in the NICU is routinely shaped by their response to standardized depression symptom inventories or screening scales. It is concerning to imagine to what degree we may be failing to help our patients by assuring them that concerning feelings are “normal” or by being unable to understand the experience they are describing. It is not uncommon to have a sense that something is being missed, and one wonders if a phenomenological toolkit that could be quickly at hand could be used in these moments to support assessment, diagnosis, and treatment.
The advantage of a proper “toolkit” approach to Carel”s idea is that it also carries with it the possibility of being an aspect of an entire phenomenological approach to care. Nursing has spent considerable effort in developing theories of caring that are complimentary to Carel”s framework and could help to operationalize an approach to care.10 In this reimagination of the toolkit, it could become a central aspect of the way in which a nurse would approach care, similar to how Jean Watson”s Caritas processes have been transcribed onto cards and paired with quotes and images to encourage in-the-moment reflection and conversation. While admittedly less in-depth than a full day workshop, this approach would seem to offer more promise in supporting a sustained phenomenological approach to care which could benefit more patients over a longer period of time.
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4 CONCLUSION
Despite some limitations, Carel”s Phenomenology of illness appears to have succeeded in developing a framework of a phenomenology of illness that goes beyond descriptions of specific characteristics of, for example, mental disorders.11 The general, holistic approach results in a framework that feels relevant to clinicians in broad settings. Her writing is engaging and evocative, and she succeeds in laying the groundwork for an approach to philosophy that has implications that range from the everyday interactions between clinicians and patients, to the underlying arguments for how we understand the impact of illness on happiness and quality of life.
