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
by Havi Carel
Oxford University Press, $50.00, 272 pp. ISBN 9780199669653
1 | I N T RO D U CT I O N
Carel0 s goal in Phenomenology of Illness is twofold: to use phenome-
nology to better understand illness and to highlight the value of ill-
ness to philosophy. The result is a book that is relevant to two very
different readers: the clinician or health researcher, and the philoso-
pher. I approach this review as a registered nurse and doctoral stu-
dent, 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 MerleauPonty, 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 trau-
matic 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
Carel0 s writing is a wonderful example of the power of the phenome-
nological 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 power-
ful 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 Frank0 s2(p27) descrip-
tion 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
1096 2017 John Wiley & Sons, Ltd. wileyonlinelibrary.com/journal/jep
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 Carel0 s own
experience and other published works. This approach is key in the
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
of the book summarizes the contributions to phenomenology of Hus-
serl, Heidegger, MerleauPonty, and Sartre that are used through the
book. This is a welcome piece of reading for those coming from a clin-
ical 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 Toomb0 s five losses of ill-
ness3; the objective body and the body as lived as introduced by Hus-
serl and developed by MerleauPonty4; Sartre0 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 illness0 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 frame-
work 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 philoso-
phy (for both patients themselves, as well as philosophers through case
study). These three chapters have farreaching implications and may
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
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 (Cana-
dian Agency for Drugs and Technologies in Health [CADTH], 2006).
One argument that has been used to justify the use of public percep-
tions versus those living in a particular health state is that the observed
difference is merely the result of adaptation.6 Carel0 s writing on the
concept of ill but well provides the philosophical foundation for an
argument that a brush with serious illness may help draw attention
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-
mic injustice will resonate with any clinician, and Carel0 s suggested
solution (the patient toolkit) is a worthy first effort to help address this
issueI will discuss this in further detail below.
J Eval Clin Pract. 2017;23:10961098.
BOOK REVIEW
As a clinician, I found Chapter Seven illness as beingtowards
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 convinc-
ingly 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 Heidegger0 s
definition of death in order to allow it to be deindividuated 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
7
have the requisite familiarity with Being and Time 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 deindividuated for Carel0 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 Carel0 s framework to clinical practice or theory
driven research.
3 | G O I N G B E YO ND A WO RK S H O P
0
As mentioned previously, Carel s framework and her discussion of its
potential clinical utility is one of the most exciting possibilities stem-
ming 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 frame-
work 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 resource8(p7)
renders it impossible for a person to explain their experience in a
0
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
0 1(p201)
the ill person s being in the world. Interestingly, Carel offers
little discussion regarding the apparent conflict between her herme-
neutic 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
1097
experienced (eg, cognitive and emotional), and gain new understand-
ing of how the illness experience has changed the individual0 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 work-
shop as described seems unquestionably valuable in helping clinicians
to revisit the way they approach care and is similar to other
artsbased 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 indepth full day workshop. There is no doubt that this for-
mat allows for a depth of reflection that would be difficult or impossi-
ble 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 postpar-
tum parents in the NICU is routinely shaped by their response to stan-
dardized 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, diagno-
sis, and treatment.
The advantage of a proper toolkit approach to Carel0 s idea is that
it also carries with it the possibility of being an aspect of an entire phe-
nomenological approach to care. Nursing has spent considerable effort
in developing theories of caring that are complimentary to Carel0 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
Watson0 s Caritas processes have been transcribed onto cards and
paired with quotes and images to encourage inthemoment reflection
and conversation. While admittedly less indepth than a full day work-
shop, 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.
4 | CO NC LUSIO N
Despite some limitations, Carel0 s Phenomenology of illness appears to
have succeeded in developing a framework of a phenomenology of ill-
ness 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 writ-
ing is engaging and evocative, and she succeeds in laying the ground-
work 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.
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,
6299 South St, Halifax, Canada
RE FE R ENC E S
1. Carel H. Phenomenology of Illness. 1st ed. Oxford: Oxford University
Press; 2016.
2. Frank A. At the Will of the Body. New York: Mariner Books; 1991.
9. Zazulak J, Halgren C, Tan M, Grierson LEM. The impact of an artsbased
programme on the affective and cognitive components of empathic
development. Med Humanit. 2015;41(1):6974. https://doi.org/
10.1136/medhum2014010584
10. Watson J. Human Caring Science: A Theory of Nursing. 2nd ed.
Burlington: Jones & Bartlett Learning; 2011.
11. Ratcliffe M. Feelings of Being: Phenomenology, Psychiatry, and the Sense
of Reality. Oxford: Oxford University Press; 2008.