Palliative
care in the 21^st century involves a combination of attentions: the
physical, psychological, and spiritual condition of the patient must all be
addressed for an adequate theory of care.  Improving communication skills
between practitioners and patients is absolutely imperative.  In the 1980’s and
1990’s, a number of nursing theories and Nursing PhD programs were established
in the United States and Canada, in which graduate students in nursing engaged
in research on patient communication using a variety of interview techniques
and qualitative methods.  These nursing theorists took inspiration from a
variety of philosophies, including complexity theory, adaptation theory,
hermeneutics, and philosophy of science.  In the 1990’s, philanthropist George Soros,
after the experiences of the death of his parents, created the Soros Faculty
Scholar Program and its Project on Death in America (PDIA).  David Kuhl was a
member of this project, and What Dying People Want (2002) is the
culmination of his efforts in that program. 

A
traditionally trained physician, Kuhl opens the book by describing his
experiences in the program’s required undergraduate courses in counseling
psychology: "the professor kept reminding me that I was very good at
asking questions (being a detective) and equally limited in my ability to
listen (bearing witness) to the real message that the speaker was attempting to
get me to understand…this course marked the beginning of the development of new
skills that changed my understanding of what an effective doctor-patient
relationship is" (xx-xxi).  The book then discusses the process of coming
to terms with death, utilizing direct quotes from interviews with cancer and
AIDS patients at different stages in their illnesses.  Its intended audience is
persons diagnosed with a terminal illness and their family, friends and loved
ones; but practitioners, physicians, nurses, and medical ethics students can
all benefit from the text’s use of patients’ narratives.

Arranged
in nine chapters, the book covers a rich variety of the physical,
psychological, and spiritual effects relevant to palliative care.  The first
chapters deal with patients’ perceptions of time, anxiety, and pain after
hearing the "Bad News" of their terminal conditions.  Each chapter
begins with a retelling of a classic tale from ancient Greek, Buddhist, or
Mesopotamian culture.  Chapter One, on Time and Anxiety, begins with the tale
of Gilgamesh and the Tree of Life, Chapter Two, on Bad News, begins with the
story of Achilles, and Chapter Nine, on Transcendence, begins with the Buddhist
story of Siddhartha’s experiences with the Tree of Wisdom at Bodhi-Gaya.  After
each of these introductory tales, the chapters proceed with Kuhl’s reflections
on his interviews with patients who are "living with dying" on a daily
basis.  For example, the chapter on Bad News recounts a patient named Marjorie,
whose doctor had informed her she had cancer in a abrupt and distant manner,
standing in her hospital room doorway and without actually coming in to the
room.  Marjorie described how she worked up the courage to explain to her
doctor that the way he had told her that she had cancer had made her feel like "less
than a person."  Kuhl’s examples show that well-meaning doctors often do
not mean to hurt patients’ feelings, and that patients can empower themselves
to speak to their physicians and request the attention and contact that they
need.  Later chapters, like Four ("Being Touched, Being In Touch")
and Five ("Life Review") give examples of patients calling together
support teams to meetings where the patient can express their preferences,
describe their feelings on quality of life, and assess practical and financial
considerations of their situations.  It is on these issues that the book
provides a wealth of advice not only for the patient, but a beneficial
accompaniment to the current medical ethics literature: chapter Four models its
overall structure for the support team meetings on the methodology of three
well-known medical ethics authors, Albert Jonsen, Mark Siegler, and William Winslade,
Clinical Ethics (2002, 5^th edition).

Kuhl
is to be applauded for his realistic look at how patients and practitioners
often misunderstand one another.  He includes examples involving doctors and
nurses, notably a section in Chapter Two, "Bad News", in which a
patient describes nurses who treated him mechanically or rudely, and then
contrasts them with nurses who listened, showed compassion, and went out of
their way to help him to understand his condition.  These discussions are
beneficial to patients as well as doctors, medical students, and especially
nursing theory students engaged in hermeneutic research.  Nursing complexity
theory, which recommends viewing patients holistically and engaging in dialogue
with patients as whole beings, was a foreshadowing of Kuhl’s work (for further
information on Nursing Theory, see Anna Omery et al., In Search of Nursing
Science, 1995).

What Dying People Want has many virtues, but careful consideration should be
given to which terminally ill patients can benefit from the text.  The use of
the ancient traditions at the beginning of each chapter is a double-edged
sword: while many readers may find these tales engaging and inspiring, patients
of certain socio-economic/educational backgrounds might be intimidated by their
own lack of familiarity with these traditions.  (I feel it necessary to note
this possibility after teaching medical ethics in rural southern Georgia, where speaking in terms familiar to the patient is
integral to patient comfort and successful communication.)  The overarching
theme of the last three chapters, including recommendations for embracing life
and gaining in spiritual wisdom as the end of one’s life nears, will benefit
any patient.  The last section is a brief appendix, with a series of guidelines
for physicians on talking to patients who are terminally ill. 

Overall,
the book encourages patients to engage in self-reflection and have
conversations with family members and friends sooner, rather than later.  Kuhl’s
message is to not dwell on death, but to live and relate to other people in the
best way possible, now.  This is excellent advice for practitioners and
patients.  In the spirit of living life to the fullest, one might conclude that
those individuals who should spend the most time reading and reflecting
on the book should be practitioners, rather than their terminally ill
patients. 

© 2003 Christine James

Christine James, Ph.D., Philosophy
and Religious Studies at Valdosta State University

Categories: Grief, Psychology