Joel Frader

Parental Views on Withdrawing Life-Sustaining Therapies in Critically Ill Children

OBJECTIVE To broaden existing knowledge of pediatric end-of-life decision making by exploring factors described by parents of patients in the pediatric intensive care unit (PICU) as important/influential if they were to consider withdrawing life-sustaining therapies. DESIGN Quantitative and qualitative analysis of semi-structured one-on-one interviews. SETTING The PICUs at 2 tertiary care hospitals. PARTICIPANTS English- or Spanish-speaking parents who were older than 17 years and whose child was admitted to the PICU for more than 24 hours to up to 1 week. INTERVENTION Semi-structured one-on-one interviews. RESULTS Forty of 70 parents (57%) interviewed said they could imagine a situation in which they would consider withdrawing life-sustaining therapies. When asked if specific factors might influence their decision making, 64% of parents said they would consider withdrawing life-sustaining therapies if their child were suffering; 51% would make such a decision based on quality-of-life considerations; 43% acknowledged the influence of physician-estimated prognosis in their decision; and 7% said financial burden would affect their consideration. Qualitative analysis of their subsequent comments identified 9 factors influential to parents when considering withdrawing life-sustaining therapies: quality of life, suffering, ineffective treatments, faith, time, financial considerations, general rejection of withdrawing life-sustaining therapies, mistrust/doubt toward physicians, and reliance on self/intuition. CONCLUSION Parents describe a broad range of views regarding possible consideration of withdrawing life-sustaining therapies for their children and what factors might influence such a decision.

Extracorporeal Membrane Oxygenation and the Ethics of Clinical Research in Pediatrics

The emergence of an innovative treatment as standard therapy has serious legal, ethical, and economic consequences, especially in pediatrics. Since children are unable to consent to or refuse treat...

Policies on Donation After Cardiac Death at Children's Hospitals: A Mixed-Methods Analysis of Variation

CONTEXT Although authoritative bodies have promulgated guidelines for donation after cardiac death (DCD) and the Joint Commission requires hospitals to address DCD, little is known about actual hospital policies. OBJECTIVE To characterize DCD policies in childrens hospitals and evaluate variation among policies. DESIGN, SETTING, AND PARTICIPANTS Mixed-methods analysis of policies collected between November 2007 and January 2008 from hospitals in the United States, Puerto Rico, and Canada in 2 membership categories of the National Association of Childrens Hospitals and Related Institutions. MAIN OUTCOME MEASURES Status of DCD policy development and content of the policies based on coding categories developed in part from authoritative statements. RESULTS One hundred five of 124 eligible hospitals responded, a response rate of 85%. Seventy-six institutions (72%; 95% confidence interval [CI], 64%-82%) had DCD policies, 20 (19%; 95% CI, 12%-28%) were developing policies; and 7 (7%; 95% CI, 3%-14%) neither had nor were developing policies. We received and analyzed 73 unique, approved policies. Sixty-one policies (84%; 95% CI, 73%-91%) specify criteria or tests for declaring death. Four policies require total waiting periods prior to organ recovery at variance with professional guidelines: 1 less than 2 minutes and 3 longer than 5 minutes. Sixty-four policies (88%; 95% CI, 78%-94%) preclude transplant personnel from declaring death and 37 (51%; 95% CI, 39%-63%) prohibit them from involvement in premortem management. While 65 policies (89%; 95% CI, 80%-95%) indicate the importance of palliative care, only 5 (7%; 95% CI, 2%-15%) recommend or require palliative care consultation. Of 68 policies that indicate where withdrawal of life-sustaining treatment can or should take place, 37 policies (54%; 95% CI, 42%-67%) require it to occur in the operating room and 3 policies (4%; 95% CI, 1%-12%) require it to occur in the intensive care unit. CONCLUSIONS Most childrens hospitals have developed or are developing DCD policies. There is, however, considerable variation among policies.

The OHRP and SUPPORT

A group of medical ethicists and pediatricians asks for reconsideration of the recent Office for Human Research Protections decision about informed consent in SUPPORT.

End-of-life care decisions in the PICU: roles professionals play.

Objective: Describe the roles and respective responsibilities of PICU healthcare professionals in end-of-life care decisions faced by PICU parents. Design: Retrospective qualitative study. Setting: University-based tertiary care children’s hospital. Participants: Eighteen parents of children who died in the pediatric ICU and 48 PICU healthcare professionals (physicians, nurses, social workers, child-life specialists, chaplains, and case managers). Interventions: In depth, semi-structured focus groups and one-on-one interviews designed to explore experiences in end-of-life care decision making. Measurements and Main Results: We identified end-of-life care decisions that parents face based on descriptions by parents and healthcare professionals. Participants described medical and nonmedical decisions addressed toward the end of a child’s life. From the descriptions, we identified seven roles healthcare professionals play in end-of-life care decisions. The family supporter addresses emotional, spiritual, environmental, relational, and informational family needs in a nondirective way. The family advocate helps families articulate their views and needs to healthcare professionals. The information giver provides parents with medical information, identifies decisions or describes available options, and clarifies parents’ understanding. The general care coordinator helps facilitate interactions among healthcare professionals in the PICU, among healthcare professionals from different subspecialty teams, and between healthcare professionals and parents. The decision maker makes or directly influences the defined plan of action. The end-of-life care coordinator organizes and executes functions occurring directly before, during, and after dying/death. The point person develops a unique trusting relationship with parents. Conclusions: Our results describe a framework for healthcare professionals’ roles in parental end-of-life care decision making in the pediatric ICU that includes directive, value-neutral, and organizational roles. More research is needed to validate these roles. Actively ensuring attention to these roles during the decision-making process could improve parents’ experiences at the end of a child’s life.

ETHICAL ISSUES IN ORGAN PROCUREMENT: A Review for Intensivists

The current state of organ procurement and the ethical issues raised by the procurement process are reviewed in this article. After an examination of the legislative framework governing organ procurement, the intensivists role in donation is discussed, including (1) donor identification, (2) asking the family to donate, and (3) obtaining consent. Recent proposals for changing the organ procurement system are analyzed, including increasing family donation or increasing the donor pool.

Political and interpersonal aspects of ethics consultation

Previous papers on ethics consultation in medicine have taken a positivistic approach and lack critical scrutiny of the psychosocial, political, and moral contexts in which consultations occur. This paper discusses some of the contextual factors that require more careful research. We need to know more about what prompts and inhibits consultation, especially what factors effectively prevent house officers and nonphysicians from requesting consultation despite perceived moral conflict in cases. The attitudes and institutional power of attending medical staff seem important, especially where innovative interventions raise ethical questions. Ethics consultants also need to address the thorny problems of the origin(s) of the consultants authority, whistleblowing, conflicts of interest that affect the consultant, persistently poor communications in hospitals, systemic inequity in the availability or quality of services for some, and the standing of the consultants recommendations, including their appearance in the patients medical record.

The Use of Family Conferences in the Pediatric Intensive Care Unit

BACKGROUND Data about pediatric intensive care unit (PICU) family conferences (FCs) are needed to enhance our understanding of the role of FCs in patient care and build a foundation for future research on PICU communication and decision making. OBJECTIVE The studys objective was to describe the use and content of PICU FCs. DESIGN The study design was a prospective chart review comparing patients who had conferences with those who did not, and a sub-analysis of patients with chronic care conditions (CCCs). SETTING/SUBJECTS The study setting was an academic PICU from January 2011 through June 2011. MEASUREMENTS Medical events under consideration were placement of tracheostomy or gastrostomy tube; initiation of chronic ventilation; palliative care involvement; use of extracorporeal membrane oxygenation, continuous renal replacement, or cardiopulmonary resuscitation; care limitation orders; death; length of stay; and discharge to a new environment. RESULTS From 661 admissions, we identified 74 conferences involving 49 patients. Sixty-four conferences (86%) were held about 40 patients with CCCs. Having a conference was associated with (p<0.05): length of PICU admission; palliative care involvement; initiation of chronic ventilation; extracorporeal membrane oxygenation; cardiopulmonary resuscitation; death; discharge to a new environment; and care limitation orders. Twenty-nine percent of patients who had a new tracheostomy or gastrostomy tube placed had a conference. We identified two categories of discussion topics: information exchange and future management. CONCLUSIONS Most identified FCs involved complex patients or patients who faced decisions affecting the childs quality of life or dying. For many patients who faced life changing decisions we did not identify a FC. Further research is needed to understand how to best utilize FCs and less formal conversations.

Evolution of clinical ethics teaching at the University of Pittsburgh

&NA; The authors explain that several years of effort, by many faculty from a variety of disciplines, were required to expand medical ethics teaching at the University of Pittsburgh School of Medicine beyond the preclinical years. Since 1986, faculty associated with the schools Center for Medical Ethics have begun a comprehensive ethics teaching program for all four years and the residency period; they also are attempting to develop an ethics consultation service. The authors describe the program, its promise and plans, and the significant difficulties involved in establishing and maintaining it, not only problems of long‐term funding but of the uninformed and negative attitudes of some students and faculty toward ethics teaching, especially in the clinical setting. Also discussed are the pros and cons of using cases in ethics teaching and the programs approaches to evaluation and to training clinical faculty in clinical ethics issues.

The Personal is Political, the Professional is Not: Conscientious Objection to Obtaining/Providing/Acting On Genetic Information

Conscientious objection (CO) to genetic testing raises serious questions about what it means to be a health‐care professional (HCP). Most of the discussion about CO has focused on the logic of moral arguments for and against aspects of CO and has ignored the social context in which CO occurs. Invoking CO to deny services to patients violates both the professionals duty to respect the patients autonomy and also the community standards that determine legitimate treatment options. The HCP exercising the right of CO may make it impossible for the patient to exercise constitutionally guaranteed rights to self‐determination around reproduction. This creates a decision‐making imbalance between the HCP and the patient that amounts to an abuse of professional power. To prevent such abuses, professionals who wish to refrain from participating have an obligation to warn prospective patients of their objections prior to establishing a professional–patient relationship or, if a relationship already exists, to arrange for alternative care expeditiously.