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Living Well with a Serious Illness

A Guide to Palliative Care for Mind, Body, and Spirit

A practical guide for understanding how palliative care can improve quality of life for patients and their caregivers.

Robin Bennett Kanarek was a registered nurse working with patients suffering from chronic medical conditions when her ten-year-old son was diagnosed with leukemia. As her son endured grueling treatments, Robin realized how often medical professionals overlook critical psychological, emotional, and spiritual support for people with life-threatening illnesses. Living Well with a Serious Illness is the culmination of decades of Robin's work to advance the field of palliative care.

Although palliative care is often associated with hospice and end-of-life planning, Kanarek argues for a more expanded definition that incorporates palliative care earlier in patients' journeys. Living Well with a Serious Illness helps patients and their caregivers understand

• what palliative care entails
• how to access the support they need when going through a serious illness
• what questions to ask medical professionals
• how to navigate advanced care planning
• definitions of common terminology used with end-of-life planning
• the importance of spiritual care, coping strategies, and emotional support
• how to become an advocate for palliative care

This book illuminates the importance of seeing patients as individuals who can benefit from care for their body, mind, and spirit—the core tenet of palliative care.

About the Author

Robin Bennett Kanarek (GREENWICH, CT) is the president of the Kanarek Family Foundation, whose mission is to improve the quality of life for those affected by serious, life-threatening conditions through promoting, integrating, and educating the medical industry and the public about palliative and supportive care in all areas of health care.


"Living Well With a Serious Illness is many things: the story of how the Kanarek family navigated the illness and death of their beloved son David, a guidebook for families and patients facing their own serious illness, and an accessible and timely description of palliative medicine's many benefits for everyone touched by illness and death. It is also a mother's loving tribute to her son, whose legacy will be, at least partially, the book you hold in your hands."

- Sunita Puri, author of That Good Night: Life and Medicine in the Eleventh Hour, Program Director, Hospice and Palliative Medicine Fellowship, University of Massachusetts Memorial Medical Center & Chan School of Medicine

"Robin's book is an impassioned plea to advance the availability, access, and use of palliative care services. This book fills a gap. Highly relevant and practical."

- Teresa Hagan Thomas, PhD, RN, University of Pittsburgh

"Robin Kanarek teaches us vital lessons on living life in this important book. We all have to face the fact of our inevitable death, but in the 'mean-while' we hopefully can live a life with meaning in the time we have."

- William Breitbart, MD, DFAPA, FAPOS, Chairman, Department of Psychiatry & Behavioral Sciences, Memorial Sloan Kettering Cancer Center

"This book is essential reading for anyone who will live with a serious illness or care for someone with one—which is essentially everyone. Kanarek writes as a mother who shares the loss of her son and has spent three decades sharing her experience with others to support their journeys. It is a book written from the heart and is both a practical guide as well as a deep reflection of how to navigate the challenging, and sacred, time of the end of life."

- Betty Ferrell, PhD, FAAN, FPCN, CHPN, Professor, City of Hope Medical Center

"Robin Kanarek's personal story supports and comforts those who have experienced the sorrowful loss of a child. The expertise she synthesizes to catalyze palliative care and manage grief and loss provides a seminal guide to managing serious illness, for patients, families and healthcare communities."

- Meredith Kazer, Ph.D., CNL, APRN, A/GNP-BC, FAAN, Dean, Fairfield University Egan School of Nursing & Health Studies

"This compelling story and resource is written with the tenderness and understanding that can only come from a loving mother, passionate nurse, and dedicated educator-advocate. Robin Kanarek gives absolutely all of herself to help us prioritize quality of life while treating serious illness. Her plea—know, ask, demand, educate!"

- Richard J. Umbdenstock, President Emeritus, American Hospital Association

"As a parent and a nurse, Robin Kanarek depicts the journey no parent ever wants to imagine—a child with a life threatening illness. Robin's heartfelt narrative skillfully offers something for everyone: the patient, the family, the consumer, the nurse, the health care professional, and the advocate. She calls on us to advance palliative care through clinical care, education, leadership, and philanthropy."

- Constance Dahlin, Editor, Advanced Practice Palliative Nursing; Palliative Care Specialist

"Ms. Kanarek has performed a great service for all of us in the palliative care field. She has managed to write a book that explains, in layman's terms, what everyone should understand about the uses and benefits of palliative care. Even medical professionals will benefit from her discussions of how patients, their families, and their caregivers should be interacting when someone has a serious illness. This book should be on every bookshelf, to be read and reread as the need arises."

- Barbara Pearce, President and CEO, The Connecticut Hospice

"What a difference it would make in their quality of life and the parents' ability to advocate for their child's and family's well-being if every child diagnosed with a serious illness received palliative care. Thank you Robin, for making the case for why every parent receiving a horrible diagnosis for their child should ask for palliative care, to help them navigate parenting in the face of overwhelming medical decision-making and emotional tsunamis, and to help them foreground love in the face of fear and uncertainty."

- Blyth Lord, Founder, Courageous Parent Network

"Robin Kanarek's Living Well with a Serious Illness provides a beacon in the dark for those struggling with any serious or life-limiting illness. She channels her son's medical journey into a powerful call for engaging, promoting and advancing the field of Palliative Care. Her passion for this work is changemaking."

- R. Morgan Bain, MD, FAAHPM, Medical Director, Betsy and Stephen Corman Center for Palliative Care

"This book is a gift to both clinicians and patients. Robin shared her story from the perspective of a healthcare giver, a wife, and a mother. She speaks to the heart of how the patient and entire family is affected in the face of serious illness. The gift is in the sharing and learning we can all do to ensure David and the Kanarek family's gift of their most private and painful moments will contribute to our better journey."

- Diane P. Kelly, President, Greenwich Hospital; EVP, Yale New Haven Health

"Living Well with a Serious Illness is both touching and information-packed. Recounting the loss of her 15-year-old son, David, Robin Kanarek offers essential information on palliative care to help people navigate their care and live better in the face of serious illness. This is a must have for every family."

- Amy Berman, Author of "Living Life In My Own Way—And Dying That Way As Well"

"In Living Well With a Serious Illness, Kanarek weaves a powerful narrative using her own story and those of others alongside the evidence on palliative care: it is essential to how we live and die, but only if we know what it is and demand access to it. This is a must-read for everyone, but particularly anyone with a serious illness who intends on living a good life, even while dying."

- Diana J. Mason, PhD, RN, FAAN, Senior Policy Service Professor, Center for Health Policy and Media Engagement, George Washington University School of Nursing

"Robin Kanarek is the ideal translator of palliative care for people living in the real world. She is a nurse and knows our health care system. She cared for her own seriously ill child. If someone you love is sick, this book is your guide to the oasis that is palliative care, often hidden in plain sight, but yours for the asking."

- Diane E. Meier, MD, Center to Advance Palliative Care

"Kanarek embraces the palliative care belief that life is about promoting and optimizing the art of living well, not just enabling existence. This book will become a must-read for doctors, nurses, social workers, and all healthcare professionals who hope to elevate their practice from good to great."

- Deborah Fisher, PhD, RN, PPCNP-BC, CHPPN, Children's National Hospital

"Robin Kanarek writes with candor and vulnerability, transcending her heartbreak to remind us that every person has the right to live well with a serious illness, palliative care consistently offers comfort and relieves suffering for patients and families, and healing is always possible—always—even in the absence of cure."

- Billy Rosa, PhD, NP, Memorial Sloan Kettering Cancer Center

"With a fierce passion to ensure others have what her son David did not, Robin Kanarek is on a mission. This empowering book will educate individuals with serious illnesses and their families about what palliative care is, what it isn't, and how to demand it as an essential part of their medical care."

- Wendy Lichtental, PhD, FT, Director, Bereavement Clinic, Memorial Sloan Kettering Cancer Center

"This books shows us what it is possible to expect from our health care—that we are cared for as unique, intricate, complicated humans with hearts and minds as well as bodies. Required reading for those whose lives have been touched by serious illness—which is to say, everyone."

- Brynn Bowman, Center to Advance Palliative Care

"Living Well with a Serious Illness is an incredibly important resource for all patients and their family caregivers. A passionate advocate for palliative care, Robin Kanarek has put her heart and soul into this book offering gems of wisdom and experience for those who are accompanying a loved one with a serious illness. Palliative care is a must for all patients with serious illness. As Robin writes, 'if you don't ask for it you won't get it.' This book teaches patients and families how and when to ask for palliative care."

- Christina Puchalski, MD, Professor of Medicine and Health Sciences; Executive Director, The GW University Institute for Spirituality and Health; Director Supportive and Palliative Care Clinic in Oncology
Johns Hopkins University Press
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