Structured Framework for Multidisciplinary Parent Counseling and Medical Interventions for Fetuses and Infants with Trisomy 13 or Trisomy 18.

OBJECTIVE: Trisomy 13 (T13) and 18 (T18) are aneuploidies associated with multiple structural congenital anomalies and high rates of fetal demise and neonatal mortality. Historically, patients with either one of these diagnoses have been treated similarly with exclusive comfort care rather than invasive interventions or intensive care, despite a wide phenotypic variation and substantial variations in survival length. However, surgical interventions have been on the rise in this population in recent years without clearly elucidated selection criterion. Our objective was to create a standardized approach to counseling expectant persons and parents of newborns with T13/T18 in order to provide collaborative and consistent counseling and thoughtful approach to interventions such as surgery. STUDY DESIGN: This article describes our process and presents our resulting clinical care guideline. RESULTS: We formed a multi- and interdisciplinary committee. We used published literature when available and otherwise expert opinion to develop an approach to care featuring individualized assessment of the patient to estimate qualitative mortality risk and potential to benefit from intensive care and/or surgeries centered within an ethical framework. CONCLUSION: Through multidisciplinary collaboration, we successfully created a patient-centered approach for counseling families facing a diagnosis of T13/T18. Other institutions may use our approach as a model for developing their own standardized approach. KEY POINTS: · Trisomy 13 and trisomy 18 are associated with high but variable morbidity and mortality.. · Research on which patients are most likely to benefit from surgery is lacking.. · We present our institution's framework to counsel families with fetal/neonatal T13/T18..

It Starts With a Story: A Four-Step Narrative-Based Framework for Serious Illness Conversations.

Background: As a key component of advance care planning, serious illness conversations form a core intervention in palliative care. To achieve effective serious illness conversations, acknowledgment and inclusion of patient sense of self and identity are critical. However, no framework exists to describe how goals, values, and choices relate to patient identity. This conceptual gap hinders the advancement of palliative care education and practice. Objective: This philosophical investigation aimed to explicate two items: first, a novel conceptual framework for serious illness conversations; second, a structured approach to optimize these conversations within the palliative care clinical context. Methods: A philosophical and theoretical analysis was performed within an interdisciplinary context, by scholars in palliative care, medical humanities, philosophy, and bioethics. Key literature in psychology, qualitative research on the experience of serious illness, medical ethics, and choice architecture in medical decision-making were reviewed, and a structured conceptual and narrative analysis was performed. Results: An original and innovative identity-centered conceptual framework for serious illness conversations was developed. The framework consists of a four-step, reproducible approach: (1) attend to patient narrative identity, (2) identify values, (3) cocreate goals, and (4) actively promote choices. In short: attend, identify, create, and promote (AICP). Discussion: By using this conceptual framework and four-step approach, clinicians can accomplish goal-concordant serious illness care and build rich clinical relationships that foster trust and goodwill.

Early and often: Promoting early integration of pediatric palliative care for seriously ill children with cancer.

Pediatric palliative care, despite substantial overlap with its adult counterpart, is also distinct in some ways. Serious illness and comorbidities are less common in children, for whom there is a stronger presumption toward aggressive treatment. This, along with impressive cure rates for pediatric cancer, can help explain why children typically survive for a longer period of time following initial palliative care consultation. Though many of the studies demonstrating benefit of integration of palliative care early in the course of the disease for seriously ill patients rather than near or at end-of-life were conducted in adults, similar findings have been documented for children with serious illness. Several barriers to early integration exist, however, including misperceptions that palliative care constitutes "giving up" and concerns about potential role confusion with the primary team. By directly addressing these misperceptions and challenges, it is possible for palliative care and oncology to work in constructive partnerships that will benefit children with cancer and their families.

Responding to Parental Requests for Nondisclosure to Patients of Diagnostic and Prognostic Information in the Setting of Serious Disease.

Learning that one's child is seriously ill can be devastating, requiring families to decide when and how to share information about diagnosis and prognosis with their child. In most cases, this disclosure is made thoughtfully and collaboratively with the medical team. Some parents, however, may be concerned that disclosure will take away their child's hope, cause emotional pain, or exceed the child's capacity for understanding. Faced with competing obligations of truth-telling to their patient and respect for parental wishes, pediatricians may be unsure how to proceed. This clinical report examines ethical duties and legal considerations, providing practical and culturally sensitive case-based guidance for clinicians to approach parental requests for nondisclosure of diagnostic or prognostic information.

Managing familial risk in genetic testing.

Increasing numbers of people are seeking genetic testing and uncovering information that directly concerns their biological relatives as well as themselves. This familial quality of genetic information raises ethical quandaries for physicians, particularly related to their duty of confidentiality. In this article, the American Medical Association's Council on Ethical and Judicial Affairs examines the informed consent process in the specific context of genetic testing, giving particular consideration to the handling of information that has consequences for biological relatives. Furthermore, it addresses the question of whether physicians' obligation to warn biological relatives ever should override the obligation to protect patient confidentiality.

Physician health and wellness.

BACKGROUND: Impaired physician health can have a direct impact on patient health care and safety. In the past, problems of alcoholism and substance abuse among physicians have received more attention than other conditions-usually in the form of discipline. While patient safety is paramount, the medical profession may be more successful in achieving the required standards by fostering a culture committed to health and wellness as well as supporting impaired physicians. OBJECTIVE: To develop ethical guidelines regarding physician health and wellness. METHODS: The American Medical Association's (AMA's) Council on Ethical and Judicial Affairs developed recommendations based on the AMA's Code of Medical Ethics, an analysis of relevant Medline-indexed articles, and comments from experts. The report's recommendations were adopted as policy of the Association in December 2003. RESULTS: Individually, physicians can promote their personal health and wellness through healthy living habits, including having a personal physician. The medical profession can foster health and wellness if its members are taught to identify colleagues in need of assistance and initiate appropriate methods of intervention, including referrals to physician health programs. CONCLUSIONS: Physicians whose health or wellness is compromised should seek appropriate help and engage in honest self-assessment of their ability to practice. The medical profession should provide an environment that helps to maintain and restore health and wellness. Physicians need to ensure that impaired colleagues promptly modify or cease practice until they can resume professional patient care. In addition, physicians may be required to report impaired colleagues who continue to practice despite reasonable offers of assistance.

Ethical issues in tissue banking for research: a brief review of existing organizational policies.

Based on a general review of international, representative tissue banking policies that were described in the medical, ethics, and legal literature, this paper reviews the range of standards, both conceptually and in existing regulations, relevant to four main factors: (1) commercialization, (2) confidentiality, (3) informed consent, and (4) quality of research. These four factors were selected as reflective of some of the major ethical considerations that arise in the conduct of tissue banking research. The authors emphasize that any policy or ethical guidelines designed to regulate tissue bank research should address all four factors. Whenever this sort of research is conducted between several institutions or several countries, the paper suggests that the relevant entities work collaboratively to harmonize their standards.