2012 EDUCATIONAL BOOK - American Society of Clinical Oncology

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TRANSITION AND DECISION MAKING FOR PALLIATIVE CARE OF PATIENTS WITH PEDIATRIC CANCER CHAIR Jennifer W. Mack, MD, MPH Dana-Farber Cancer Institute Boston, MA SPEAKERS Chris Feudtner, MD, PhD, MPH Children’s Hospital of Philadelphia Philadelphia, PA Pamela S. Hinds, PhD, RN Children’s National Medical Center Washington, DC
Communication and Decision Support for Children with Advanced Cancer and Their Families By Jennifer W. Mack, MD, MPH, Chris Feudtner, MD, PhD, MPH, and Pamela S. Hinds, PhD, RN Overview: Clinician communication related to treatment decision making is a fundamentally important health care intervention and is often reported by parents of seriously ill children to be the most valued of clinician skills. Since different children and families have different communication styles and expectations, and since these may change over the course of the illness experience, one of the early and recurring tasks is to clarify and work with these diverse styles and expectations. Adopting a stance of compassionate desire to know more about patients and families, in addition to imparting information, is vital, and can be facilitated by following a general strategy of “ask, tell, ask.” In addition to the exchange of information, communication between clinician and patient PALLIATIVE CARE is centered on children with lifethreatening illnesses and their families. As such, the values and goals held by individual children and families guide plans for care, and the child’s quality of life and symptoms—physical, psychologic, spiritual—are of primary importance. These principles affirm that the child is valued and guide care from diagnosis through all phases of illness. For patients with progressive cancer or serious complications, communication practices founded on these principles set the stage for palliative care when it is needed. In this article, we offer practical guidance for clinicians who care for children with advanced cancer, addressing various aspects of communication and supportive decision making across the illness trajectory (see Fig. 1). Communication across the Illness Experience Communication, central to the work of caring for children with advanced cancer, has three primary purposes. First, communication allows for the exchange of information and the development of shared knowledge. Communication goes both ways: from the family and child as well as to them, and sometimes wordlessly, in shared silence. Second, communication serves as the foundation for a relationship between the child, parent, and clinician, in which the parents and child can feel known and understood. Third, communication provides a forum for decision making. The type of decision may change over time, but even when parents and children approach painful decisions about end-of-life care, they can use familiar processes and relationships as an anchor. Sharing Information The first communication goal that spans the illness trajectory is the sharing of information. Clinicians must both seek information from and impart information to children and their families, and what we choose to discuss sets a tone for the central issues of care. A useful general communication strategy is “ask, tell, ask,” in which communication from the clinician is framed by the child and family. For example, when discussing a cancer diagnosis, one might start by asking the child or family, “What is your understanding of the diagnosis so far?” and family also involves the signaling and exchange of emotions, in which the pace, verbal inflection, and body language of the conversation are fundamental. Discussions about prognosis and goals of care, while needing to be handled in a gentle manner, should start early in the illness experience and be revised whenever there is a relapse or major complication. Children often want to participate in these conversations to a degree of their own choosing, which they themselves can clarify. Effective and empathetic clinician communication can greatly facilitate decision making and care for children with advanced cancer and their families, and provide a substantial source of comfort. Their answer helps the clinician to know where to start, and correct any misconceptions. After communicating information, the clinician can use a final question to check understanding (“I want to make sure that I’ve explained things. Can you tell me what you are taking away from this conversation?”) and assess the emotional effect (“How are you feeling now?”) of the news. Even at diagnosis, conversations may be incomplete without honest discussion about the child’s future, including the nature of the illness and the prognosis. These conversations are hard—cognitively, emotionally, socially, and spiritually—and clinicians may understandably avoid them. 1,2 Yet most parents worry about their child’s future from the day they hear the word “cancer,” and want prognostic information, even if they find it upsetting. 3 In addition, starting such conversations at diagnosis helps with transition to palliative care if treatment fails. We recommend the following steps when talking about prognosis, 4,5 in line with the general strategy of “ask, tell, ask”: ● Consider what the child or family needs to know about prognosis, and when they need to know it. In some situations, if the family does not want prognostic information, then the clinician need not discuss it. In other situations, such as a very poor prognosis or acute deterioration, true informed consent may not be possible without it. ● Ask the family and/or child what they understand about what lies ahead. ● Unless you have already decided that the family needs From the Department of Pediatric Oncology and the Center for Outcomes and Policy Research, Dana-Farber Cancer Institute, Boston, MA; Harvard Medical School, Boston, MA; Pediatric Advanced Care Team, Department of Medical Ethics, PolicyLab, The Children’s Hospital of Philadelphia, Philadelphia, PA; Department of Pediatrics, The Perelman School of Medicine at the University of Pennsylvania, Philadelphia, PA; Children’s National Medical Center, Washington, DC; The George Washington University, Washington, DC. Authors’ disclosures of potential conflicts of interest are found at the end of this article. Address reprint requests to Jennifer Mack, MD MPH, 450 Brookline Ave., Boston, MA 02215; email: jennifer_mack@dfci.harvard.edu. © 2012 by American Society of Clinical Oncology. 1092-9118/10/1-10 637
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AMERICAN SOCIETY OF CLINICAL ONCOLO
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American Society of Clinical Oncolo
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American Society of Clinical Oncolo
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New Looks and Challenges for Cooper
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Genitourinary Cancer Best Use of Im
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Research and Standard of Care: Lung
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Practice Management and Information
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2012 ASCO Annual Meeting Disclosure
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Matti S. Aapro, MD Clinique De Geno
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Hedy Lee Kindler, MD The University
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Douglas E. Wood, MD University of W
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Mary Lou Smith, JD, MBA Research Ad
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ASCO and Conquer Cancer Foundation
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Letter from the Editor The theme of
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Adjuvant Therapy for Older Women wi
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TREATMENT FOR OLDER WOMEN WITH BREA
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MANAGEMENT OF T1 BREAST CANCERS the
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MANAGEMENT OF T1 BREAST CANCERS Tab
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MANAGEMENT OF T1 BREAST CANCERS 93.
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MANAGEMENT OF T1 BREAST CANCERS 1 c
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ADJUVANT ENDOCRINE THERAPY reductio
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ADJUVANT ENDOCRINE THERAPY which ra
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ADJUVANT ENDOCRINE THERAPY assay is
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TREATMENT OF ADVANCED BREAST CANCER
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A FRESH LOOK AT DUCTAL CARCINOMA IN
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Ductal Carcinoma In Situ, and the I
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DCIS AND INFLUENCE OF RISK FACTORS
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KEY QUESTIONS IN THE LOCO-REGIONAL
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POSTMASTECTOMY RADIATION AND PARTIA
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The Appropriate Extent of Surgery f
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SURGERY FOR EARLY-STAGE BREAST CANC
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BIOLOGY AND LOCAL THERAPY DECISIONS
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Clinical and Imaging Surveillance F
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SURVEILLANCE FOLLOWING BREAST CANCE
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SURVEILLANCE FOLLOWING BREAST CANCE
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Advanced Imaging Techniques for the
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IMAGING TECHNIQUES FOR BREAST CANCE
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IMAGING TECHNIQUES FOR BREAST CANCE
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Update of the Oxford Overview: New
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UPDATE OF THE OXFORD OVERVIEW Fig.
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UPDATE OF THE OXFORD OVERVIEW Overv
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Gene Patents and Personalized Medic
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GENE PATENTS AND EFFECTS ON PERSONA
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Chemoprevention for Breast Cancer:
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CHEMOPREVENTION FOR BREAST CANCER T
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CHEMOPREVENTION FOR BREAST CANCER C
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CONTROVERSIES IN PROSTATE CANCER: P
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PROSTATE CANCER RISK REDUCTION men
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PSA SCREENING: HARMS WITHOUT CLEAR
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PSA SCREENING: HARMS WITHOUT CLEAR
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GLIOBLASTOMA: TAKING THE STANDARD O
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GLIOBLASTOMA: BIOLOGY, GENETICS AND
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FUTURE DIRECTIONS IN GBM THERAPY pr
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ESTABLISHING TREATMENTS FOR GLIOBLA
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Current Concepts in Brain Tumor Ima
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PERSPECTIVES ON HEADLINE-MAKING NEW
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TTF THERAPY IN GLIOBLASTOMA Fig. 1.
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TTF THERAPY IN GLIOBLASTOMA istics.
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TTF THERAPY IN GLIOBLASTOMA because
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Limitations of Adaptive Clinical Tr
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LIMITATIONS OF ADAPTIVE CLINICAL TR
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LIMITATIONS OF ADAPTIVE CLINICAL TR
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Capturing the Patient Perspective:
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PATIENT-REPORTED OUTCOMES AS TRIAL
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PATIENT-REPORTED OUTCOMES AS TRIAL
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NEW LOOKS AND CHALLENGES FOR COOPER
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NCI NATIONAL CLINICAL TRIALS NETWOR
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Successful Integration of Cooperati
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COG: GIVING NEW MEANING TO COOPERAT
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A Critical Review of the Enrollment
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BLACK PATIENTS AND CANCER CLINICAL
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BLACK PATIENTS AND CANCER CLINICAL
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Trastuzumab Emtansine (T-DM1): Hitc
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T-DM1 AND THERAPEUTIC ANTIBODIES ag
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TARGETING CD30 IN HODGKIN LYMPHOMA
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TARGETING CD30 IN HODGKIN LYMPHOMA
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Table 1. Response Rates in Expanded
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Drug Development in the Era of Pers
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that the core pathway is not comple
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Practical Management of Immune-Rela
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Abl suppression; and 3) the early e
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50% 50% 100% Change in Tumor Size m
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Targeting Molecular Aberrations in
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ETHICAL CHALLENGES OF HEALTH CARE R
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HEALTH CARE REFORM AND ONCOLOGY dev
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INTERNATIONAL VARIATION IN UNDERSTA
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midcareer physician; in one cross-s
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Table 1. Recommendations for Person
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stances (e.g., stage of career, fam
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elationship” is also acknowledged
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Conclusion In more individualistic
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The Oncologist’s Duty to Provide
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an external observer, but to the pe
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MEDICAL ERRORS IN CANCER CARE: PREV
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DISCLOSING MEDICAL ERRORS Disclosur
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DISCLOSING MEDICAL ERRORS Author’
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PREVENTING MEDICAL ERRORS more diff
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“PERSONALIZED” ONCOLOGY FOR COL
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0.001), progression-free survival (
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treatment (tx) for metastatic color
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Resection and Thermal Ablation of L
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Author’s Disclosures of Potential
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Minimally Invasive Surgery of Recta
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CAO/ARO 04 study—which added oxal
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STAGE III COLON CANCER: WHAT WORKS,
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A New Direction for Pancreatic Canc
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Table 1. FOLFIRINOX versus Gemcitab
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The Southwest Oncology Group (SWOG)
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A Matter of Timing: Is There a Role
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Conclusion There are clear differen
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Will Disease Heterogeneity Help Def
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prematurely due to poor accrual. 18
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Adjuvant Treatments for Localized A
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ADJUVANT TREATMENT FOR GASTRIC CANC
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THE MANAGEMENT OF LESS COMMON BUT C
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of therapeutic options, patient sel
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Optimal Use of Imaging to Guide Tre
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enhancement seen. Furthermore, the
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CASTRATION-RESISTANT PROSTATE CANCE
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Prognostic, Predictive, and Surroga
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KIDNEY CANCER BIOLOGY AND THERAPEUT
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Prognostic Factors in Advanced RCC
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cell immunotherapy in which a small
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New Developments in Urothelial Canc
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Novel Approaches in Advanced Urothe
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10. Albers P, Park SI, Niegisch G,
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700 at a dose of 400 mg twice daily
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therapy for nonmetastatic prostate
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ADJUVANT THERAPY FOR OLDER PATIENTS
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Adjuvant Systemic Therapy Adjuvant
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RECENT CLINICAL HIGHLIGHTS IN GYNEC
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GLOBAL ADVANCES IN GYNECOLOGIC ONCO
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UPFRONT TREATMENT OF OVARIAN CANCER
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ANTIANGIOGENICS AND PARP INHIBITORS
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Intraperitoneal Treatment in Ovaria
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INTRAPERITONEAL TREATMENT IN OVARIA
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HISTOLOGIC FEATURES AND MANAGEMENT
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PATIENTS WITH HPV-POSITIVE OROPHARY
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EARLY ADVANCES IN SCCHN Fig 1. Targ
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Application of Genomic and Proteomi
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GENOMIC AND PROTEOMIC TECHNOLOGIES
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TREATMENT OF THYROID CANCERS: NEW I
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AVOIDING OVERDIAGNOSIS AND OVERTREA
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Overdiagnosis and Overtreatment of
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COSTS OF CANCER CARE: AFFORDABILITY
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REDUCING THE COST OF CANCER CARE Fi
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REDUCING THE COST OF CANCER CARE Th
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REDUCING THE COST OF CANCER CARE de
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MANAGEMENT OF CHRONIC LYMPHOCYTIC L
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PREDICTIVE PARAMETERS IN CLL Table
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WHEN TO OFFER TRANSPLANTATION IN CL
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NEW DEVELOPMENTS IN MYELOPROLIFERAT
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GENETICS OF MYELOPROLIFERATIVE NEOP
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Classification of Myeloproliferativ
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CLASSIFICATION AND PROGNOSIS OF MPN
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CLASSIFICATION AND PROGNOSIS OF MPN
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AROUND THE WORLD IN ALMOST 80 MINUT
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LUNG CANCER IN BRAZIL Fig. 1. Relat
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LUNG CANCER IN BRAZIL Fig. 3. Chara
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LUNG CANCER IN BRAZIL Author’s Di
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LUNG CANCER IN CHINA well equipped
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Research and Standard of Care: Lung
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PHYSICIAN ENGAGEMENT IN ONLINE PATI
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PHYSICIAN ENGAGEMENT IN ONLINE PATI
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LUNG CANCER SCREENING 101 CHAIR Chr
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Molecular Testing of Non-Small Cell
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MOLECULAR TESTING AND NSCLC Fig 1.
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MOLECULAR TESTING AND NSCLC logic d
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THYMOMA AND THYMIC CARCINOMA: UPDAT
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MANAGEMENT OF THYMIC CARCINOMA recu
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MANAGEMENT OF THYMIC CARCINOMA Refe
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The Creation of the International T
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ITMIG AS A MODEL FOR RARE DISEASES
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Thymoma: From Chemotherapy to Targe
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SYSTEMIC TREATMENT OF THYMOMA Study
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SYSTEMIC TREATMENT OF THYMOMA cance
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What Is the Best Strategy for Incor
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TREATMENT OF FOLLICULAR LYMPHOMA Fi
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CONTROVERSIES IN MYELOMA: INDUCTION
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CURRENT STATUS OF MYELOMA THERAPY K
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Maintenance Therapy for Myeloma: Ho
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MAINTENANCE THERAPY FOR MULTIPLE MY
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NEW OPTIONS, NEW QUESTIONS: HOW TO
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ANTIEMETICS: CURRENT STANDARDS, EME
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Chemotherapy-Induced Nausea and Vom
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New Frontiers in Mucositis By Dougl
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Short- and Long-term Cardiovascular
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CARDIOTOXICITY OF ANTICANCER THERAP
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CARDIOTOXICITY OF ANTICANCER THERAP
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The Oncologist as the Patient with
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THE ONCOLOGIST AS THE PATIENT OR RE
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Prolonged Febrile Neutropenia in th
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FEBRILE NEUTROPENIA IN PEDIATRIC CA
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FEBRILE NEUTROPENIA IN PEDIATRIC CA
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GENETIC COUNSELING OF THE PATIENT W
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CANCER PREDISPOSITION IN CHILDHOOD
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Page 713 and 714: RADIOTHERAPY FOR PEDIATRIC HODGKIN
Page 715 and 716: Role of Doxorubicin in Rhabdomyosar
Page 717 and 718: DOXORUBICIN IN RHABDOMYOSARCOMA 8.
Page 719 and 720: Identification of Novel Biologic Ta
Page 721 and 722: NOVEL TARGETS IN THE TREATMENT OF D
Page 723 and 724: Is Biopsy Safe in Children with New
Page 725 and 726: SAFETY OF DIPG BIOPSY IN CHILDREN F
Page 727 and 728: SAFETY OF DIPG BIOPSY IN CHILDREN 1
Page 729: CHILDREN WITH DIFFUSE INTRINSIC PON
Page 733 and 734: COMMUNICATION AND DECISION SUPPORT
Page 739 and 740: Planning for the Future: The Role o
Page 741 and 742: present in the office suite but doe
Page 743 and 744: Summary and Care Plan are provided.
Page 745 and 746: DOING IT RIGHT, AND FOR LESS: IMPLE
Page 747 and 748: CLINICAL PATHWAYS STANDARDIZING PER
Page 749 and 750: CLINICAL PATHWAYS STANDARDIZING PER
Page 751 and 752: The Future of Oncology Care with Pe
Page 753 and 754: quantity. Determining the appropria
Page 755 and 756: THE ASCO QUALITY ONCOLOGY PRACTICE
Page 757 and 758: IMPROVING VALUE OF CARE IN ONCOLOGY
Page 763 and 764: PHYSICIAN WELLNESS: COPING WITH REP
Page 765 and 766: also provides insight on how clinic
Page 767 and 768: good resource for exploring the pri
Page 769 and 770: of death or following death and inc
Page 771 and 772: telephone call to the family, sendi
Page 773 and 774: New Insights in Cross-Cultural Comm
Page 775 and 776: CROSS-CULTURAL COMMUNICATION Sideba
Page 777 and 778: THE ONCOLOGIST, THE PATIENT, AND TH
Page 779 and 780: estimate of the proportion of their
Page 781 and 782:
exactly the same treatment, even th
Page 783 and 784:
How to Decide Whether to Offer and
Page 785 and 786:
NONSTANDARD THERAPIES FOR ADVANCED
Page 787 and 788:
NONSTANDARD THERAPIES FOR ADVANCED
Page 789 and 790:
TARGETED THERAPIES IN TARGETED OR U
Page 791 and 792:
TARGETED THERAPY IN SARCOMA rates a
Page 793 and 794:
TARGETED THERAPY IN SARCOMA seen in
Page 795 and 796:
TARGETED THERAPY IN SARCOMA recepto
Page 797 and 798:
Adjuvant Treatment of Gastrointesti
Page 799 and 800:
ADJUVANT THERAPY IN HIGH-RISK GASTR
Page 801 and 802:
Management of Tyrosine Kinase Inhib
Page 803 and 804:
TKI-RESISTANT GIST Primary Imatinib
Page 805 and 806:
TKI-RESISTANT GIST Table 2. Clinica
Page 807 and 808:
BIOLOGIC PRINCIPLES OF TARGETED COM
Page 809 and 810:
COMBINING TARGETED AGENTS IN CLINIC
Page 811 and 812:
COMBINING TARGETED AGENTS IN CLINIC
Page 813 and 814:
Combination Therapies Building on t
Page 815 and 816:
COMBINATIONS FOR MELANOMA agents th
Page 817 and 818:
MECHANISMS OF RESISTANCE TO TARGETE
Page 819 and 820:
RESISTANCE MECHANISMS TO MAPK INHIB
Page 821 and 822:
RESISTANCE MECHANISMS TO MAPK INHIB
Page 823 and 824:
Mechanisms of Resistance to Targete
Page 825 and 826:
RESISTANCE TO TARGETED THERAPIES IN
Page 827 and 828:
RESISTANCE TO TARGETED THERAPIES IN
Page 829 and 830:
Translating PI3K-Delta Inhibitors t
Page 831 and 832:
THE STORY OF CAL-101 6% of patients
Page 833 and 834:
PI3 Kinase in Cancer: From Biology
Page 835 and 836:
PI3 KINASE IN CANCER Fig. 1. The PI
Page 837 and 838:
PI3 KINASE IN CANCER Fig. 3. In viv
Page 840:
This publication is supported by an
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2012 EDUCATIONAL BOOK - American Society of Clinical Oncology

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