Fulfilling Hope: Supporting the Needs of Patients with Advanced Cancers

Lillie Dierker Shockney
Johns Hopkins Hospital, MD, US

Series: Cancer Etiology, Diagnosis and Treatments
BISAC: MED062000

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Special issue: Resilience in breaking the cycle of children’s environmental health disparities
Edited by I Leslie Rubin, Robert J Geller, Abby Mutic, Benjamin A Gitterman, Nathan Mutic, Wayne Garfinkel, Claire D Coles, Kurt Martinuzzi, and Joav Merrick

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Though more and more individuals diagnosed with cancer become survivors, there still remains hundreds of thousands forced to succumb to their disease. How oncology specialists communicate bad news, discuss treatment options, and interact throughout the cancer journey greatly influences the expectations patients and their loved ones have regarding the goals and outcomes of treatment. There is limited residency education or nursing education about how to communicate effectively with patients who we know will be facing end of life rather than survival. Research studies have validated that more than 40% of patients with metastatic disease believe that their chemotherapy treatments they are receiving just weeks before they die were for the purpose of curing them of their cancers.

Hospice remains an underutilized service due to the uncomfortable feelings it causes when discussing alternative options to treatment rather than continuing toxic drug therapy. On average, patients do not get referred until too ill to receive any more chemotherapy treatments. This is a time to be truly providing the patient and family patient centered care, factoring in their life goals, their hopes for themselves that transition over time, their hopes for their family without them, and how we can innovatively help them reach these important goals even after they have died, by identifying or serving as a “Hope Fulfiller.”

This book provides the research, knowledge and other tools and resources needed to help ensure you will be able to orchestrate a good death for your patient and feel confident and comforted yourself having done so. It begins however with an understanding of the origin of the word Hope, how to define it, give it, avoid taking it away, measure it, and fulfill it. There is also insightful information about the cost of hope. Intertwined throughout the book will be cases studies regarding actual patients and their loved ones experiencing advanced cancers and demonstrating some specific topic that will be covered in this book. When we give our all to our patients there is risk of burning ourselves out. A chapter on how to avoid clinician burnout is included. Additionally this literary work will provide a step by step program planning guide how to conduct retreats for patients and their family members coping with metastatic cancers as a unique means of supporting them in preparing for end of life, developing communication methods that enable decisions made by the patient to be heard and honored, as well as teaching loved ones as well as clinicians how to help fulfill hope of patients which need to be carried out in alternative ways because they linked to the future after their death. (Imprint: Nova)

Acknowledgments

Introduction

Chapter 1. Defining Hope

Chapter 2. Giving Hope

Chapter 3. Taking Away Hope

Chapter 4. The Cost of Hope

Chapter 5. Measuring Hope

Chapter 6. Transitioning through Phases of Hope

Chapter 7. Fulfilling Hope by Orchestrating a Good Death

Chapter 8. Fulfilling Hope in Alternative Ways

Chapter 9. Preventing Burnout and Compassion Fatigue among Providers Caring for Patients with Metastatic Cancer

Chapter 10. Retreats for Patients and Caregivers Dealing with Metastatic Cancer

About the Author

Index

"Lillie has written a textbook that every health care professional who sees patients with cancer should have on a "must read" list. This book provides one with a comprehensive curriculum, strategies, and tactics for those who need to provide, care, counsel, and communicate with some of the difficult messages one has to give to cancer patients. Her examples in Chapter II alone are a treasure for anyone in a position to give hope to those who are suffering -- patients, family, friends, and loved ones. Like Lillie herself, you will want the gems of information in this book to be at your side to refer to as you care for people with cancer." - Ellen Stovall, 43 year cancer survivor, Senior Health Policy Advisory, National Coalition for Cancer Survivorship (NCCS)

"I hope that…” often is heard from patients with metastatic cancer, but patient hopes are rarely broached by oncology providers with those who receive a terminal cancer diagnosis. Calling for a “real time partnership” between patients and their oncologists where hopes and fears are freely discussed and addressed, Lillie Shockney’s book, Fulfilling Hope: Supporting the Needs of Patients with Advanced Cancers, challenges oncologists to understand and practice a pivotal role with each patient while being realistic about the patient’s prognosis and helping to fulfill each patient’s hopes. Describing research about hope and sharing poignant patient case studies, the author has written a seminal book that should be required reading for all oncologists, fellows, and those attending medical school." - Shirley Mertz, President, Metastatic Breast Cancer Network

Chapter 1

Clark, E. (2008). You Have the Right to be Hopeful. National Coalition of Cancer Survivorship publication. 4th Edition.
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Chapter 2

Clark, E. (2008) You Have the Right to be Hopeful. Washington, DC. National Coalition of Cancer Survivorship publication. 4th Edition.
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Van Roenn,J., & von Gunten, C. (2003) Setting goals to maintain hope. Journal of Clinical Oncology, 21:3, p570-73.

Chapter 3

Back, A., Arnold, R., & Quill, R. (2005) Hope for the best, and prepare for the worst. Ann Intern Med, 138:439-443.
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Chapter 4

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Chapter 5

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Chapter 6

Benzein, E. (2001) The meaning of the lived experience of hope in patients with cancer in palliative home care. Palliative Medicine, 15: 117-26.
Clayton, J.M., Butow P.N., Arnold, R.M., Tattersall, M. N. (2005) Fostering coping and nurturing hope when discussing the future with terminally ill cancer patients and their caregivers. Cancer, 103 (9): 1965-75.
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Chapter 7

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Capc.org

Chapter 9

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