Teresa A. Savage

Providing Advice to Parents for Women at Acutely High Risk of Periviable Delivery

OBJECTIVE: To better understand preferred approaches that health care professionals could use when caring for parents who are at risk of giving birth to an extremely premature infant. METHODS: Women who were at high risk of having a periviable birth were recruited from three tertiary care hospitals with level 3 neonatal intensive care units. These women, as well as their partners, physicians, and nurses underwent structured interviews both before and after delivery. Interviews were analyzed for advice that was provided to health care professionals who could be involved in the future counseling of antenatal patients at high risk of periviable delivery. RESULTS: Forty women, 14 fathers, and 52 health care providers participated in the interview process. Two main themes were identified—namely, the fundamental importance of information provision and support. Nevertheless, although all participants agreed about the importance of these actions, several areas of discordance among participants were noted. Nearly one third of parents emphasized the importance of “hope”; 60% and 45% recommended the provision of supplementary written and Internet materials, respectively. In contrast, most health care providers expressed the importance of “objectivity,” and only 15% and 5% thought written or Internet materials, respectively, were desirable, given the concern that supplementary information sources could be misleading. CONCLUSION: Both patients and providers agree about the centrality of information provision and emotional support for women at risk of periviable delivery. This study not only elucidates preferred approaches and methods by which this information and support could be optimized, but also shows pitfalls that, if not avoided, may impair the relationship between provider and patient. LEVEL OF EVIDENCE: II

Parent decision making for life support for extremely premature infants: from the prenatal through end-of-life period.

ABSTRACT Most deaths of extremely premature infants occur in the perinatal period. Yet, little is known about how parents make life support decisions in such a short period of time. In the paper, how parents make life support decisions for extremely premature infants from the prenatal period through death from the perspectives of parents, nurses, and physicians is described. Five cases, comprised of five mothers, four neonatologists, three nurses, and one neonatal nurse practitioner, are drawn from a larger collective case study. Prenatal, postnatal and end-of-life interviews were conducted, and medical record data were obtained. In an analysis by two research team members, mothers were found to exhibit these characteristics: desire for and actual involvement in life support decisions, weighing pain, suffering and hope in decision making, and wanting everything done for their infants. All mothers received decision making help and support from partners and family, but relationships with providers were also important. Finally, external resources impacted parental decision making in several of the cases. By understanding what factors contribute to parents’ decision making, providers may be better equipped to prepare and assist parents when making life support decisions for their extremely premature infants.

Moral Distress in Rehabilitation Professionals: Results From a Hospital Ethics Survey

Moral distress in the rehabilitation setting was examined in a follow‐up survey. The survey had 3 goals: (1) to systematically and anonymously gather data about the ethical issues that employees struggle with in their daily work; (2) to raise the visibility of the hospital‐based ethics program and resources available to employees; and (3) to prioritize and focus the direction of the programs educational seminars, quality improvement projects, and ethics consultation.

Ethical Issues in Research with Patients Who Have Experienced Stroke

Abstract There are a myriad of ethical issues surrounding inclusion of persons who have had strokes into clinical research. Assessment of decision-making capacity is especially challenging as stroke can impair communication such that the patient appears to lack decision-making capacity or can impair executive function and preserve expressive language so that it appears the patient has capacity when he or she may not. Other issues such as vulnerability, therapeutic misconception, surrogate decision making, and other concerns unique to persons who have had strokes are discussed. Recommendations of national commissions are described.

Rehabilitation Team Disagreement: Guidelines for Resolution

Rehabilitation care is provided by interdisciplinary teams including physicians, nurses, therapists, social workers, psychologists, and others. When there is disagreement or miscommunication among team members, progress toward patient goals can be thwarted. This paper will discuss differing models by which teams function, and what happens when a nonphysician member of the team disagrees with the plan of care. An analysis of the ethical issues embedded in two cases will be presented, and suggestions for resolution of team disagreement will be recommended.

Ethical Issues with Service Animals

Abstract The beneficial aspects of canines who provide services to people with disabilities have resulted in an explosion of a category of dogs that are bred and/or trained just for service purposes. Over the past 30 years, the role of most service dogs has become more prominent and more demanding. There are also concerns as to the well-being of these animals and questions regarding realistic expectations of them. The purpose of this article is to explore the utilization of service dogs in a rehabilitation health care setting. More specifically, ethical issues that are pertinent to the service dog’s role will be identified and resolutions recommended.

Parent perceptions of early prognostic encounters following children’s severe traumatic brain injury: ‘Locked up in this cage of absolute horror’

Abstract Objective: Little guidance exists for discussing prognosis in early acute care with parents following children’s severe traumatic brain injury (TBI). Providers’ beliefs about truth-telling can shape what is said, how it is said and how providers respond to parents. Methods: This study was part of a large qualitative study conducted in the US (42 parents/37 families) following children’s moderate-to-severe TBI (2005–2007). Ethnography of speaking was used to analyse interviews describing early acute care following children’s severe TBI (29 parents/25 families). Results: Parents perceived that: (a) parents were disadvantaged by provider delivery; (b) negative outcome values dominated some provider’s talk; (c) truth-telling involves providers acknowledging all possibilities; (d) framing the child’s prognosis with negative medical certainty when there is some uncertainty could damage parent–provider relationships; (e) parents needed to remain optimistic; and (f) children’s outcomes could differ from providers’ early acute care prognostications. Conclusion: Parents blatantly and tacitly revealed their beliefs that providers play an important role in shaping parent reception of and synthesis of prognostic information, which constructs the family’s ability to cope and participate in shared decision-making. Negative medical certainty created a fearful or threatening environment that kept parents from being fully informed.

The Role of Parents in Making Life Support Decisions for Extremely Premature Infants

Karen Kavanaugh Teresa Moro Teresa Savage University of Illinois at Chicago Raye-Ann deRegnier Children’s Memorial Hospital, Chicago Sarah Kilpatrick University of Illinois Medical Center, Chicago Robert Kimura Rush University Medical Center, Chicago William Grobman Northwestern University Feinberg School of Medicine, Chicago Rama Bhat University of Illinois Medical Center, Chicago Michael Hussey Howard Strassner Rush University Medical Center, Chicago

Feeding Tubes: Three Perspectives

Abstract Percutaneous endoscopic gastrostomy tubes, or PEG tubes, look innocuous enough—narrow, plastic, pliable tubes, that when inserted into the stomach protrude approximately 3 to 5 inches and can be attached to a bag of liquid food. How can something so seemingly straightforward create so much controversy and evoke such intense emotion? It seems that part of the answer lies in the fact that nobody sees the same thing when they look at a feeding tube. This article will present three different views of gastrostomy tubes and challenge practitioners to think beyond traditional models.