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Received: 13 June 2017 Revised: 6 July 2017 Accepted: 20 July 2017

DOI: 10.1111/jep.12812

BOOK REVIEW

P H E N O M E N O L O G Y OF I L L N E S S unreal by utterly real. [] My body has become a kind of


quicksand, and I was sinking into myself, into my disease.

by Havi Carel The text is rich with examples like this, both from Carel0 s own
experience and other published works. This approach is key in the
Oxford University Press, $50.00, 272 pp. ISBN 9780199669653
book0 s ability transform the abstract to the concrete.
Carel restricts her efforts to serious, chronic, and lifechanging ill
health, as opposed to a cold or bout of tonsillitis.1(p6) The first chapter
1 | I N T RO D U CT I O N
of the book summarizes the contributions to phenomenology of Hus-
serl, Heidegger, MerleauPonty, and Sartre that are used through the
Carel0 s goal in Phenomenology of Illness is twofold: to use phenome-
book. This is a welcome piece of reading for those coming from a clin-
nology to better understand illness and to highlight the value of ill-
ical background because it introduces concepts with admirable clarity.
ness to philosophy. The result is a book that is relevant to two very
Carel develops her general framework in Chapters Two to Four and
different readers: the clinician or health researcher, and the philoso-
then applies it to the phenomenon of breathlessness in Chapter Five.
pher. I approach this review as a registered nurse and doctoral stu-
The framework consists of a synthesis of Toomb0 s five losses of ill-
dent, and, thus, my reading of the book is seen through a clinician
ness3; the objective body and the body as lived as introduced by Hus-
researcher lens. Those familiar with the history of phenomenology
serl and developed by MerleauPonty4; Sartre0 s description of the
are likely to argue that a phenomenological treatment of illness is
objective, subjective, and intersubjective levels of the body5; and the
not novel, which Carel herself highlights when distinguishing her work
concept of the healthy body as transparent. This framework provides
from that of MerleauPonty, Sartre, Toombs, Svenaeus, and
a convincing and seemingly complete account of illness0 profound
others.1(p36) She argues that these works have primarily focused on
effects on our ways of being in the world and provides important
specific features of illness, as opposed to illness generally, whereas
insights into the relational aspects of illness.
she seeks to develop a comprehensive phenomenology of illness.1(p36)
Chapters Six, Eight, and Nine are applications of how this frame-
Carel states that an important part of this general framework is the
work can help to understand and address such issues as the concepts
ability to account for seemingly paradoxical phenomena such as trau-
of ill but well, the unintentional marginalization of the knowledge
matic growth wherein individuals report greater happiness after a
of patients (epistemic injustice), and illness as an invitation to philoso-
brush with serious illness.1(p38) Such a general framework is a worthy
phy (for both patients themselves, as well as philosophers through case
and valuable goal to both audiences of the text, and, in this effort,
study). These three chapters have farreaching implications and may
Carel largely succeeds.
serve as the groundwork for exciting developments outside of philos-
ophy. For example, a difficult problem in the field of health economics
has been that the general public generally underestimates the quality
2 | SUMMARY of life experienced by those with severe illness or disability. Generally,
national guideline bodies state that the public perception of quality of
Carel0 s writing is a wonderful example of the power of the phenome- life in a given health state should be used in economic analyses (Cana-
nological approach. Phenomenology of Illness leaves the reader feeling dian Agency for Drugs and Technologies in Health [CADTH], 2006).
a deeper appreciation for the experience of serious illness generally, One argument that has been used to justify the use of public percep-
and breathlessness specifically. Her use of quotes and stories is power- tions versus those living in a particular health state is that the observed
ful and helps to highlight the effect of illness on lived time, space, body, difference is merely the result of adaptation.6 Carel0 s writing on the
and relation. An example of one such quote that highlights how illness concept of ill but well provides the philosophical foundation for an
affects our imagined future comes from Arthur Frank0 s2(p27) descrip- argument that a brush with serious illness may help draw attention
tion of his cancer diagnosis: to the reality of one0 s mortality and lead to improvements in quality
of life that are independent of mere adaptation. The concept of episte-
What was it like to be told I had cancer? The future mic injustice will resonate with any clinician, and Carel0 s suggested
disappeared. Loved ones became faces I would never see solution (the patient toolkit) is a worthy first effort to help address this
again. I felt I was walking through a nightmare that was issueI will discuss this in further detail below.

1096 2017 John Wiley & Sons, Ltd. wileyonlinelibrary.com/journal/jep J Eval Clin Pract. 2017;23:10961098.
BOOK REVIEW 1097

As a clinician, I found Chapter Seven illness as beingtowards experienced (eg, cognitive and emotional), and gain new understand-
death out of place and not necessary to the overall thesis of the book. ing of how the illness experience has changed the individual0 s way of
By the time a reader has arrived at this point, the importance of our being in the world.1(p201) It was originally intended as a patient
relationship with death in shaping meaning, and the role that illness resource but is also used with clinicians or mixed groups. The work-
can play in drawing attention to our mortality, has already been convinc- shop as described seems unquestionably valuable in helping clinicians
ingly presented. The first half of the chapter provides background on the to revisit the way they approach care and is similar to other
importance of death that makes more sense to be featured in the earlier artsbased programs intended to improve empathy and encourage a
parts in the book (and to some extent is, for example, in the bodily holistic approach to care.9 Despite this, I do have some reservations
doubt chapter). The second half attempts to restructure Heidegger0 s as to whether the toolkit as described will be able to realize its
definition of death in order to allow it to be deindividuated and allow potential.
a relational being towards death.1(p178) The result is an abrupt shift in The primary issue with the toolkit is that it is not really a toolkit at
the approach of the book from one that is accessible to all audiences, all, but an indepth full day workshop. There is no doubt that this for-
to one that is dense and difficult to understand for those who do not mat allows for a depth of reflection that would be difficult or impossi-
7
have the requisite familiarity with Being and Time and its criticisms. ble to achieve otherwise, but it severely limits the ability of the
Many clinicians will be left wondering why it was important intervention to reach large numbers of patients or clinicians. Perhaps
and why it appears so late in the book. This chapter could perhaps a workshop can be the primary form of the intervention, but a toolkit
be supported by future work that will help make clear why death suggests something I, as a clinician, can turn to in the moment to help
needs to be deindividuated for Carel0 s framework to be complete. support my assessment or chip away at some underlying epistemic
Until then, this chapter will likely be of most interest to academic injustice. I am reminded of the way in which the experience of postpar-
philosopher whereas the most important content for clinicians is tum parents in the NICU is routinely shaped by their response to stan-
covered in a more accessible way in earlier chapters. While dardized depression symptom inventories or screening scales. It is
this Chapter provides additional depth and understanding, mastery concerning to imagine to what degree we may be failing to help our
of the content at the level it is presented is not likely necessary patients by assuring them that concerning feelings are normal or by
in order to apply Carel0 s framework to clinical practice or theory being unable to understand the experience they are describing. It is
driven research. 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, diagno-
3 | G O I N G B E YO ND A WO RK S H O P sis, and treatment.
The advantage of a proper toolkit approach to Carel0 s idea is that
0
As mentioned previously, Carel s framework and her discussion of its it also carries with it the possibility of being an aspect of an entire phe-
potential clinical utility is one of the most exciting possibilities stem- nomenological approach to care. Nursing has spent considerable effort
ming from this book. In Chapter One, Carel states that phenomenology in developing theories of caring that are complimentary to Carel0 s
provides the means through which illness can be used to explore an framework and could help to operationalize an approach to care.10 In
individual life, its meanings, goals, and values and how best to modify this reimagination of the toolkit, it could become a central aspect of
them in response to illness.1(p15) A footnote hints to the promise of the way in which a nurse would approach care, similar to how Jean
a patient toolkit that aims at enabling this process.1(p15) The toolkit Watson0 s Caritas processes have been transcribed onto cards and
itself falls somewhat flat, and, in this section, I explain how this frame- paired with quotes and images to encourage inthemoment reflection
work and a true toolkit approach could lead to a paradigm shift in and conversation. While admittedly less indepth than a full day work-
clinical care. shop, this approach would seem to offer more promise in supporting a
The patient toolkit is introduced as one possible solution to the sustained phenomenological approach to care which could benefit more
issues of epistemic injustice discussed in Chapter Eight. Epistemic patients over a longer period of time.
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 4 | CO NC LUSIO N
which is when the lack of collective hermeneutical resource8(p7)
renders it impossible for a person to explain their experience in a Despite some limitations, Carel0 s Phenomenology of illness appears to
0
way that can be understood by others. Carel s toolkit takes the form have succeeded in developing a framework of a phenomenology of ill-
of a workshop centred around a three step process she describes as ness that goes beyond descriptions of specific characteristics of, for
bracketing the natural attitude, thematizing illness, and reviewing example, mental disorders.11 The general, holistic approach results in
0 1(p201)
the ill person s being in the world. Interestingly, Carel offers a framework that feels relevant to clinicians in broad settings. Her writ-
little discussion regarding the apparent conflict between her herme- ing is engaging and evocative, and she succeeds in laying the ground-
neutic phenomenological approach and her use of bracketing in the work for an approach to philosophy that has implications that range
toolkit. She intends the process to focus attention in the experience from the everyday interactions between clinicians and patients, to
of illness rather than the objective reality of the disease, encourage the underlying arguments for how we understand the impact of illness
consideration of the myriad ways through with the illness is on happiness and quality of life.
1098 BOOK REVIEW

ACKNOWLEDGEMEN TS 3. Toombs SK. The meaning of illness: a phenomenological approach to


the patientphysician relationship. J Med Philos. 1987;12:219240.
I would like to express my gratitude to Dr Kirstin Borgerson for her
4. MerleauPonty. Phenomenology of Perception. New York: Routledge; 2012.
generous assistance in helping to understand unfamiliar concepts and
5. Sartre JP. Being and Nothingness. London and New York: Routledge; 2003.
for her ongoing support in providing feedback throughout the writing
6. Versteegh MM, Brouwer WBF. Patient and general public preferences
of this review.
for health states: a call to reconsider current guidelines. Soc Sci Med.
2016;165:6674. https://doi.org/10.1016/j.socscimed.2016.07.043
ORCID
7. Heidegger M. Sein und Zeit. Tubingen: Max Niemeyer; trans. J. Stambaugh
Timothy Disher BScN, RN http://orcid.org/0000-0002-1032-2252 (1996) Being and Time. Albany: State University of New York Press; 1986.
8. Fricker M. Epistemic Injustice: Power & the Ethics of Knowing. Oxford:
Timothy Disher BScN, RN Oxford University Press; 2007.

Doctoral Student, Dalhousie University School of Nursing, Forrest Building, 9. Zazulak J, Halgren C, Tan M, Grierson LEM. The impact of an artsbased
programme on the affective and cognitive components of empathic
6299 South St, Halifax, Canada development. Med Humanit. 2015;41(1):6974. https://doi.org/
10.1136/medhum2014010584
RE FE R ENC E S 10. Watson J. Human Caring Science: A Theory of Nursing. 2nd ed.
1. Carel H. Phenomenology of Illness. 1st ed. Oxford: Oxford University Burlington: Jones & Bartlett Learning; 2011.
Press; 2016. 11. Ratcliffe M. Feelings of Being: Phenomenology, Psychiatry, and the Sense
2. Frank A. At the Will of the Body. New York: Mariner Books; 1991. of Reality. Oxford: Oxford University Press; 2008.