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What Dying People WantReview - What Dying People Want
Practical Wisdom for the End of Life
by David Kuhl
PublicAffairs, 2002
Review by Christine James, Ph.D.
Nov 11th 2003 (Volume 7, Issue 46)

Palliative care in the 21st 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, 5th 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


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