Palliative Care in Hematologic Malignancies and Serious Blood Disorders - A Clinical Guide by Christina K. Ullrich,Eric J. Roeland 2023
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Editors Christina K. Ullrich • Eric J. Roeland
Pages: 352
- Language: English
- Format: PDF
- Size :17.8 MB
Contents:
Part I Hematologic Malignancies and Serious Blood Disorders
2 Hematologic Malignancies . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 Daniel R. Richardson and Carolyn Mulroney
3 Hematopoietic Cell Transplantation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 23 Effe Wang Petersdorf
4 Serious Blood Disorders: A Focus on Sickle Cell Disease and Hemophilia . . . . . . 37 Sharl S. Azar and Srila Gopal
5 Cellular Therapies: A Description of the Types of Existing Cellular Therapies and Associated Toxicities . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 55 Gopi S. Mohan, Daniel J. Kats, Samantha D. Martin, and Pietro Miozzo
Part II Palliative Care
6 Palliative Care Approach for Patients with Hematologic Malignancies and Other Serious Blood Disorders. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 71
Li Mo and David Hui
7 Hematology/Oncology and Palliative Care Collaboration . . . . . . . . . . . . . . . . . . . 83 Courtney W. Johnson, Deborah A. Lafond, Steven J. Hardy, Elizabeth Hardesty, and Shana S. Jacobs
8 Hematologic Malignancy and Palliative Care Integration in the Outpatient Setting . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 93 Heather A. Carlson and Angela Sousa Part III The Intersection of Palliative Care and Hematologic Malignancies and Serious Blood Disorders: Key Issues
Part III The Intersection of Palliative Care
9 Communication Throughout the Illness Trajectory . . . . . . . . . . . . . . . . . . . . . . . . 105 Marc-Antoine Marquis, Monia Marzouki, and Lysanne Daoust
10 Decision-Making Involvement Throughout the Illness Trajectory . . . . . . . . . . . . . 115 Maura A. Miglioretti, Emily M. Fredericks, and Melissa K. Cousino
11 Advance Care Planning in Hematologic Malignancies and Other Serious Blood Disorders . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 125 Vinay Rao and Dana Guyer
12 Measuring Quality of Life and Health-Related Quality of Life . . . . . . . . . . . . . . . 139
Susan Parsons, Nadine Linendoll, and Courtney Schroeder
13 Pain Syndromes of Hematologic Malignancies . . . . . . . . . . . . . . . . . . . . . . . . . . . . 153 Judith A. Paice and Jonathan Moreira
14 Symptoms in Advanced Hematologic Malignancies and Other Serious Hematologic Conditions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 169 Mellar Davis, Carlos Fernandez, Nicki Vithalani, Lauren Elizabeth Nicholls, and Glen Digwood
15 Rehabilitation Medicine . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 197 Jack B. Fu, George J. Francis, Shinichiro Morishita, and Julie K. Silver
16 Psychosocial Considerations and Assessment of Patients with Hematological Malignancies and Serious Blood Disorders . . . . . . . . . . . . . . . . . . 205 Kristin Drouin, Nicholas Purol, Sarah J. Tarquini, Darcy E. Burgers, and Kristen Uhl
17 Multicultural and Spiritual Considerations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 219 Allison Kestenbaum, Portia Howard, and Yuko Abbott
18 Ethical Considerations in Palliative Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 229 Jonathan M. Marron and Melissa K. Uveges
19 Advancing the Field through Research . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 243
Part IV The Intersection of Palliative Care and Hematologic Malignancies and Serious Blood Disorders: Special Populations
20 Palliative Care for Special Populations: Pediatrics . . . . . . . . . . . . . . . . . . . . . . . . . 255 Danielle Faye Jonas, Angela Steineck, Joshua A. Johnson, Mallory Fossa, Julienne Brackett, Erica Carmen Kaye, and Deena R. Levine
21 Palliative Care for Adolescents and Young Adults (AYAs) . . . . . . . . . . . . . . . . . . . 273 Natalie Jewitt and Alisha Kassam
22 Caregivers of Patients with Hematologic Malignancies . . . . . . . . . . . . . . . . . . . . . 285 Tara A. Albrecht, Shelby Langer, Marcia A. Winter, J. Nicholas Dionne-Odom, and Laura S. Porter
Part V The Intersection of Palliative Care and Hematologic Malignancies and Serious Blood Disorders: Caring for Patients at End of Life
23 End-of-Life Considerations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 301 Robert Macauley, Jessica Bordley, Lindsay Wooster-Halberg, and Paul Galchutt
24 Care of the Imminently Dying Patient with a Hematologic Malignancy or Serious Blood Disorder . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 315 Kevin Madden and Eduardo Bruera
25 Bereavement in Hematologic Malignancies and Serious Blood Disorders . . . . . . 327 Sue E. Morris, Holly E. Barron, Kathleen A. Lee, Jennifer M. Snaman, and Sarah J. Tarquini
Index . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 345
- Preface
- We are honored to share our colleagues’ cumulative work and collective wisdom in caring for patients with hematologic malignancies, including pediatric and adult clinicians. This textbook encapsulates years of relentless effort and dedication to improving the care of patients with hematologic malignancies and their caregivers. Moreover, it demonstrates how clinicians can effectively collaborate to share their expertise to optimize our care for patients with complex medical illness. We are proud of our colleagues who agreed to contribute to this work and demonstrated the fortitude to complete it during COVID. Emerging evidence—in conjunction with clinical experience—demonstrates that palliative care improves the well-being of seriously ill patients throughout their illness course.
- Through an interdisciplinary and holistic approach, palliative care improves patients’ and their caregivers’ physical, psychological, and spiritual distress. Moreover, palliative care promotes care aligned with patients’ values and preferences by facilitating effective and compassionate communication and supporting the delineation of treatment goals and informed decision-making. Regardless of prognosis or treatment, such outcomes are relevant throughout the illness trajectory. Individuals with hematologic malignancies and other serious blood disorders often undergo intensive therapies to fnd a cure. Others may experience years of chronic and debilitating illness.
- Both populations often face high uncertainty about the future, intense symptom burden, and impaired function and quality of life. Holistic care of individuals with hematologic malignancies and serious hematologic disorders is challenged by high prognostic uncertainty, wideranging ramifcations of serious illness, and, at times, a focus on cure and disease-directed care. For example, stem cell and chimeric antigen receptor T cell (CAR-T) therapies now offer the possibility of a cure, even for individuals with advanced blood cancers. In addition, patients with nonmalignant blood disorders experience unmet palliative needs, such as uncontrolled pain among those with sickle cell disease and joint deformity among patients with hemophilia.
- Once thought to be the antithesis of hematologic/oncologic care, a palliative care approach, in fact, complements disease-directed therapies by attending to the multidimensional needs of patients and caregivers. While evidence and recognition of the beneft of palliative care in this population are mounting, important clinical and research questions surrounding palliative care integration have emerged. Moreover, there are few resources, and no textbooks, dedicated to the specifc needs of individuals with blood cancers and other serious hematologic disorders, highlighting their palliative care needs and best clinical approaches. Likewise, interest in this topic among hematologists is greatly increasing, as evidenced by formal educational symposia at the annual meeting of the American Society of Hematology in 2013 and again in 2015. This textbook provides a comprehensive yet concise coverage of (1) the unique needs of patients with malignant and nonmalignant blood disorders and outlines specifc strategies to optimize hematologist/hematologist-oncologist and palliative care collaboration; (2) issues salient to the provision of palliative care (e.g., communication, decision-making, advance care planning, symptom management, and ethics); (3) special populations (e.g., pediatrics, adolescents and young adults, geriatrics, and caregivers); and (4) issues on the care of patients with blood disorders at the end of life (e.g., care of the imminently dying patient).
- the interdisciplinary nature of palliative care, contributing authors for each chapter represent a range of disciplines, including medicine, nursing, psychology, social work, chaplaincy, pharmacy, and physical and occupational therapists, among others. We have designed this textbook to serve as a resource for several groups of clinicians. We envision it serving as a reference for hematology-oncology clinicians and trainees seeking to deepen their palliative care knowledge and skills while improving their understanding of the unique needs of patients with blood disorders. This text will also support and guide palliative care clinicians and trainees as they care for this population and their particular needs. Because palliative care is inherently interdisciplinary, covering an array of medical, nursing, and psychosocial topics, clinicians who will utilize this book extend beyond physicians and include advanced practice providers, nurses, social workers, psychologists, chaplains, and allied health professionals caring for this population.
