196 pp, softcover
Published by The Write Place, July 2021
$8.99 US, £7.68, INR 723.46 on Amazon
Also available: eBook (Kindle)
Reviewed by M.R. Rajagopal, MD
Rima Pande’s His Voice is a gratifying and profound story.
Empathy is noble. But empathy is not easy, and I suppose it can never be perfect. Even if we try to put ourselves in another’s shoes, the fact remains that no one can never fully read someone else’s mind. Yet Rima Pande seems to almost “possess” her father, Raj, as he lay imprisoned by paralysis after two strokes within two years. She wrote the story of his illness in the first person. Brilliant.
I could easily identify with the young Raj (for obvious and not-so-obvious reasons) as he escaped from the world into an attic with his books: with his failure to connect to conventional religious symbols but eventually was able to see God in himself and others.
His story has a typical information gap: explanations are given to the family, but none to the person with the illness. How much anxiety could it cause, the not knowing! It reminded me of an acquaintance who said that the worst thing about his stroke, which robbed him of speech for nearly three months, was that he didn’t know what had happened to him.
I felt Raj’s total helplessness as well as the unconditional love of his devoted wife and daughter. I felt angry with the hospital that treated him in an intensive care unit (ICU) then released him with a couple of pressure sores. I heaved a sigh of relief when, despite being embarrassed about it, Mrs. Raj discussed the option of not taking him to the ICU again. I admired her for her brave decision, a decision empowered by love, with no support from the medical system. (Had it even heard about “shared decision-making”?)
I didn’t know whether to laugh or cry at the way the speech therapist concentrated on what she believed was her task: perfecting his speech and nothing else.
As I read on, I wondered: Is this daughter’s empathy challenged by wishful thinking? Could that have compounded a family’s expectation that the ill person is strong, thereby disenfranchising grief? When the author says (in Raj’s words), “I looked down at myself, my mind almost stepping outside my body, calmly waiting,” I, the reader, ached to step into Raj myself and protest, “How could you assume I am calm?”
Another typical experience was the family’s hopes being raised by offers of miracles—what Elisabeth Kübler-Ross described as a manifestation of “bargaining.” India has many alternative systems of medicine and it is tempting for the family to be lured into system-hopping. The family meets with miracle-man Babaji, who says, “I wish you had brought him earlier.” This is often spoken by medical people—mainstream or alternative—with a hint of arrogance, suggesting that they are capable of rectifying anything on Earth early enough in the disease process. They add substantial guilt to the patient and family by insinuating: It's entirely your fault.
In her final notes, the author describes her emotional roller-coaster ride, calling the writing of this book a cathartic and therapeutic experience. As Rima rightly says, this is a story of relationships, respect, and resilience. I feel, with some guilt, that it is also the story of how the medical system focuses on the body and organs, and is unable to see the person.
Dr. M.R. Rajagopal is a palliative care physician, chair of Pallium India, and author of Walk with the Weary.
These books are new to the field. If your expertise fits any of the titles and you are interested in volunteering to review it for the IAHPC Newsletter, please contact editor Alison Ramsey.
Global Perspectives in Cancer Care: Religion, Spirituality, and Cultural Diversity in Health and Healing. Michael Silbermann, Ann Berger.
“People everywhere experience trouble, sorrow, need, and sickness, and they develop skills and knowledge in response to these adversities,” says publisher Oxford University Press. “This book provides insightful models of these parameters.”
List price: $75 US (softcover). ISBN 9780197551349
Interdisciplinary Pediatric Palliative Care, 2nd edition. Joanne Wolfe, Pamela S. Hinds, Barbara M. Sourkes.
This book “provides a uniquely integrated, comprehensive resource about palliative care for seriously ill children and their families,” says its publisher, Oxford University Press. “The text integrates themes including goals of care, discipline-specific roles, cultural and spiritual considerations, evidence-based outcomes, and far more.”
List price: $149.95 US (hardcover). ISBN 9780190090012
Pediatric Palliative Care: A Model for Exemplary Practice. Betty Davies, Rose Steel, Jennifer Baird.
Routledge: “Grounded in clinical practice and the study of positive rather than problematic encounters between providers and parents, the book presents an evidence-based model of exemplary interaction.” This book “lays out a road map for health-care providers interested in optimizing care for seriously ill children and their families.”
List price: $39.95 US (softcover). ISBN 9780367365684
Essential Notes in Pain Medicine. Enrique Collantes Celador, Jan Rudiger, Alifia Tameem (editors).
Written by a multidisciplinary team of more than 70 contributors “in short notes style with bullet points, tables, and boxes to help the reader to understand the topics easily and quickly,” says publisher Oxford University Press. “All the relevant information needed to provide up-to-date high-quality multidisciplinary pain management…a key resource for candidates preparing for postgraduate pain medicine examinations.
List price: $75 US (softcover). ISBN 9780198799443
Palliative Care Nursing as Mindfulness: Embodying a Relational Ethic through Strong Emotion, Uncertainty and Death. Lacie White.
Publisher Routledge: “[R]eaders are invited into conversation to explore how mindfulness influences palliative care nurses’ approaches to caring for themselves and others through experiences of living-dying… Under the guise of stress reduction and self-care, the assumption often made is that mindfulness can smooth out difficult experiences. Instead, the objective of this inquiry is not to bypass the practice of caring in those spaces that are really hard, but to understand how nurses are working directly within them.”
List price: $160 US (hardcover). ISBN 9781032181738
Handbook of Nutrition and Diet in Palliative Care, 2nd edition. Victor R. Preedy (editor).
Routledge: “[A] comprehensive guide, providing exhaustive information on nutrition and diet in terminal and palliative care. It covers physical, cultural and ethical aspects, bridging the intellectual divide in being suitable for novices and experts alike… [C]hapters contain practical methods, techniques, and guidelines along with a section on applications to other areas of palliative care.”
List price: $54.95 US (softcover). ISBN 9780367727161
Collaborative Practice in Palliative Care. Dave Roberts, Laura Green (editors).
Routledge: The book “explores how different professions work collaboratively across professional, institutional, social, and cultural boundaries to enhance palliative care…global aspects of palliative care and cultural diversity as themes running throughout the book.” It provides “examples of good and innovative practice…[d]rawing on experiences” from both specialist palliative care settings and primary care.
List price: $40.95 US (softcover). ISBN 9780815362050