Life support decisions for extremely premature infants: report of a pilot study

The purpose of this pilot study was to describe decision making and the decision support needs of parents, physicians, and nurses regarding life support decisions made over time prenatally and postnatally for extremely premature infants. Using the collective case study method, one prenatal, one postnatal, and one postdeath, if the infant had died, tape-recorded interviews were conducted with each parent. With parents' permission, prenatal interviews were done with the physicians and nurses who talked to them about life support decisions for their infants. Twenty-five tape-recorded interviews were conducted with six cases (six mothers, two fathers, six physicians, and two nurses). Hospital records were reviewed for documentation of life support decisions. Results of this pilot study demonstrated that most parents wanted a model of shared decision making and perceived that they were informed and involved in making decisions. Parents felt that to be involved in decision making they needed information and recommendations from physicians. Parents also stressed the importance of encouragement and hope. In contrast, physicians informed parents but most physicians felt that parents were the decision makers. Physicians used parameters to offer options or involve parents in decisions and became very directive at certain gestational ages. Nurses reported that they believed that parents needed information from the physician first, then they would reinforce information. The results of this study offer an initial understanding of the decision support needs of parents.     

The legal landscape at the threshold of viability for extremely premature infants: a nursing perspective, part I

One of the most difficult decisions that can confront a family is what medical treatment to seek for an extremely premature infant at the threshold of viability. The complexity of the treatment options, competing interests of healthcare providers and the family, consideration of the parents' values, and the sheer immensity of making decisions that affect such a new and fragile life all converge on parents when making such decisions. Overlying this are the legal context and the healthcare professionals and institutions that often may have more direct control and impact on those decisions than the parents. In the United States, the law since the so-called baby doe regulations has not provided much in the way of consistent guidance. Federal attempts to micromanage the decision-making process and draw bright lines have largely failed. Conflicts between the competing interests sometimes end up in court, and the law is developing state by state with widely varying results. Parental consent to treatment of their infants is at the crux of these conflicts. Part I of this article discusses the evolving legal landscape of decision making for treatment of infants at the threshold of viability. Part II will address informed consent and the fundamental role nurses can play in creating a collaborative decision-making process that respects the best interests of the infant and the family.     

Using vignettes to explore how parents approach end-of-life decision making for terminally ill infants

With the complexity of technologies in medical centers today, family members are frequently confronted with situations that require decision making on behalf of a loved one. Some researchers have studied the needs of decision makers directly; however, the reality of asking opinions at the bedside of a dying patient makes it a difficult issue to research directly. The vignette method has been used to extrapolate data by asking study participants how they would act under certain circumstances. This vignette-based study explores potential decision-making processes collected from volunteers about how family members might make decisions for a loved one. Ninety-four students were asked to read vignettes as if they were caregivers. Students were randomly assigned to one of three clinical scenarios describing a family member at a critical decision point. The age of the family member, relationship, and medical condition were manipulated in the three otherwise identical scenarios. The results indicated that the ranked responses to the categories were different in the three age-group scenarios. In the group simulating parent decision making for the terminally ill infant, the participants reported "quality of life" and "chance of survival" most frequently as to compared to "pain/comfort" or "family relationships" for older patients. When making decisions in the infant scenario, participants were twice as likely to express religious or spiritual criteria for their decisions and half as likely to express cost concerns. Among the three scenarios, participants simulating family decisions for infants indicated that different caregiving values may apply. They were even more likely than the others to choose mechanical ventilation as an option when the prognosis is extremely poor. All family members making decisions for a loved one, regardless of age or relationship, need supportive assistance from nurses; however, pediatric nurses who develop relationships with parents of terminally ill infants especially need to understand their values in making decisions.     

Parents need to protect: influences,risks and tensions for parents of prepubertal children born with ambiguous genitalia

Aim and objectives. The aim of the study was to explore parents’ experiences of and the influences, risks and tensions associated with their child’s genital ambiguity and the place reconstructive surgeries had in their lives. Background. Research into the clinical management of disorders of sex development is a complex and growing field of study. A small number of studies have indicated that the decisions parents make with regard to their child’s care during infancy are confounded by moral, social and emotional factors which can influence their choices. Design. Narrative methods. Methods. In‐depth interviews elicited stories from 10 mothers and five fathers of 11 prepubertal children. Results. A key theme from the data focused on the parents’ motivations to protect their child from the real or perceived threats arising from other people’s attitudes and responses to their ambiguous genitalia. Several rationales for their protective behaviours were described, which encouraged the parents to actively manage their child’s care. Conclusion. The dilemmas that parents face in the complex and challenging situation following the birth of a child with ambiguous genitalia require early support from insightful professionals such as nurses. This support could better prepare the parents to recognise and discuss their protective behaviours and the impact these may have on their child’s future. Relevance to clinical practice. These findings draw attention to the parents’ need for nurses to be knowledgeable about the impact that disorders of sex development can have on family’s emotional, psychosocial well‐being and decision‐making. Nurses’ awareness of the debate surrounding genital surgeries is important if they are to understand the motivations that underpin parents’ decision‐making and how to support them sensitively. Nurses are the health professionals who have the most consistent direct contact with these families throughout the child’s life and, therefore, can provide support in the ongoing decision‐making process.     

How do children's nurses make clinical decisions? Two preliminary studies

Aims and objectives. To gain an understanding of how children's nurses make clinical decisions. Background. Several studies have explored how nurses make clinical decisions and the factors that may affect the decision‐making strategies used. However, the results of these studies are contradictory. Further, little is known about children's nurses’ decision‐making strategies. Design. The think aloud technique. Methods. Nurses (n = 12) from three surgical wards and nurses (n = 15) from three medical wards in a Scottish children's hospital were presented with clinical scenarios and asked to think aloud. The verbal protocols were analysed to provide an indication of how children's nurses made decisions. Whether there were any differences in decision‐making between experienced and less experienced nurses and between graduates and non‐graduates was also explored. Results. Analysis of verbal protocols obtained using the think aloud technique suggested that all the nurses in the sample used a hypothetico‐deductive (analytical) model of decision‐making. Further, all participants appeared to use backward reasoning strategies regardless of their level of expertise. This is a characteristic of non‐expert decision‐making. Experienced and less experienced nurses collected similar additional information before planning nursing interventions, supporting the conjecture that they were functioning at a non‐expert level in relation to decision‐making. No differences were seen in the information collected by graduate and non‐graduate nurses. Conclusions. The decision‐making strategies of children's nurses need exploring further and further research is needed to identify factors that may affect decision‐making strategies. Several strategies to support nurses’ clinical decision‐making have been proposed but need testing to ascertain their effectiveness. Relevance to clinical practice. In clinical practice nurses make numerous decisions throughout the course of a shift. Sub‐optimal decision‐making strategies may adversely affect the quality of nursing care provided. It is imperative, therefore, to ascertain how nurses make clinical decisions and the factors that may influence the decision‐making strategies used.     

Resuscitation of the extremely preterm infant: A perspective from the social model of disability

The imminent birth of an extremely premature infant presents parents and health care professionals with difficult decisions regarding how aggressively to provide treatment for the infant. These dilemmas exist because extremely premature infants are at risk for disabilities such as cerebral palsy, blindness, and other neurological disorders. Technology has facilitated improved survival rates, but outcomes are uncertain and cannot be reliably predicted. The essential questions with the birth of an extremely preterm infant are: should the infant be resuscitated, and who makes the decision to resuscitate? This paper will explore resuscitation decisions for the extremely preterm infant within the social model of disability.     

Parental decision-making for medically complex infants and children: An integrated literature review

Background

Many children with life-threatening conditions who would have died at birth are now surviving months to years longer than previously expected. Understanding how parents make decisions is necessary to prevent parental regret about decision-making, which can lead to psychological distress, decreased physical health, and decreased quality of life for the parents.

Objective

The aim of this integrated literature review was to describe possible factors that affect parental decision-making for medically complex children. The critical decisions included continuation or termination of a high-risk pregnancy, initiation of life-sustaining treatments such as resuscitation, complex cardiothoracic surgery, use of experimental treatments, end-of-life care, and limitation of care or withdrawal of support.

Design

PubMed, Cumulative Index of Nursing and Allied Health Literature, and PsycINFO were searched using the combined key terms ‘parents and decision-making’ to obtain English language publications from 2000 to June 2013.

Results

The findings from each of the 31 articles retained were recorded. The strengths of the empirical research reviewed are that decisions about initiating life support and withdrawing life support have received significant attention. Researchers have explored how many different factors impact decision-making and have used multiple different research designs and data collection methods to explore the decision-making process. These initial studies lay the foundation for future research and have provided insight into parental decision-making during times of crisis.

Conclusions

Studies must begin to include both parents and providers so that researchers can evaluate how decisions are made for individual children with complex chronic conditions to understand the dynamics between parents and parent–provider relationships. The majority of studies focused on one homogenous diagnostic group of premature infants and children with complex congenital heart disease. Thus comparisons across other child illness categories cannot be made. Most studies also used cross-sectional and/or retrospective research designs, which led to researchers and clinicians having limited understanding of how factors change over time for parents.     

Barriers to and Facilitators of End-of-Life Decision Making by Neonatologists and Neonatal Nurses in Neonates: A Qualitative Study

ContextMaking end-of-life decisions (ELDs) in neonates involves ethically difficult and distressing dilemmas for health care providers. Insight into which factors complicate or facilitate this decision-making process could be a necessary first step in formulating recommendations to aid future practice.ObjectivesThis study aimed to identify barriers to and facilitators of the ELD-making process as perceived by neonatologists and nurses.MethodsWe conducted semistructured face-to-face interviews with 15 neonatologists and 15 neonatal nurses, recruited through four neonatal intensive care units in Flanders, Belgium. They were asked what factors had facilitated and complicated previous ELD-making processes. Two researchers independently analyzed the data, using thematic content analysis to extract and summarize barriers and facilitators.ResultsBarriers and facilitators were found at three distinct levels: the case-specific context (e.g., uncertainty of the diagnosis and specific characteristics of the child, parents, and health care providers, which make decision making more difficult), decision-making process (e.g., multidisciplinary consultations and advance care planning, which make decision making easier), and overarching structure (e.g., lack of privacy and complex legislation making decision making more challenging).ConclusionBarriers and facilitators found in this study can lead to recommendations, some simpler to implement than others, to aid the complex ELD-making process. Recommendations include establishing regular multidisciplinary meetings to include all health care providers and reduce unnecessary uncertainty, routinely implementing advance care planning in severely ill neonates to make important decisions beforehand, creating privacy for bad-news conversations with parents, and reviewing the complex legal framework of perinatal ELD making.     

Coronary care nurses' clinical decision making

Increasing acuity of hospitalized persons with cardiac disease places great demands on nurses’ decision-making abilities. Yet nursing lags in knowledge-based system development because of limited understanding about how nurses use knowledge to make decisions. The two research questions for this study were: how do the lines of reasoning used by experienced coronary care nurses compare with those used by new coronary care nurses in a representative sample of hypothetical patient cases, and are the predominant lines of reasoning used by coronary care nurses in hypothetical situations similar to those used for comparable situations in clinical practice? Line of reasoning was defined as a set of arguments in which knowledge is embedded within decision-making processes that lead to a conclusion. Sixteen subjects (eight experienced and eight new nurses) from coronary care and coronary step-down units in a large, private, teaching hospital in Minnesota, USA, were asked to think aloud while making clinical decisions about six hypothetical cases and comparable actual case. One finding was that most subjects in both groups used multiple lines of reasoning per case; but they used only one predominantly. This finding highlighted the non-linear nature of clinical decision making. Subjects used 25 predominant lines of reasoning, with intergroup differences on six of them. Where there were differences, experienced nurses used lines of reasoning of lower quality than did new subjects. The type variability in lines of reasoning suggested that multiple pathways should be in-corporated into knowledge-system design. One implication of the variability in subjects’ line of reasoning quality is that nurses at all levels of expertise are fallible and could benefit from decision support. The finding that subjects tended to use similar lines of reasoning for comparable hypothetical and actual cases was modest validation of subjects’ performance on hypothetical cases as representing their decision making in practice. Consequently, there was support for using simulations and case studies in teaching and studying clinical decision making.     

Bereaved Parents' Perceptions of Infant Suffering in the NICU

ContextIt is challenging to provide supportive intensive care to infants in the neonatal intensive care unit (NICU), giving them every chance for survival, while also trying to minimize suffering for both the infant and parents. Parents who believe their infant is suffering may alter treatment goals based on their perceptions; however, it is unknown how parents come to believe that their infant may be suffering.ObjectivesTo examine bereaved parents' perceptions of infant suffering in the NICU.MethodsParents completed a qualitative interview exploring their perceptions of the level of suffering that their infant experienced at the end of life. Parents whose infant died in a large Midwestern Level IV regional referral NICU from July 2009 to July 2014 were invited to participate. Thirty mothers and 16 fathers from 31 families (31 of 249) participated in telephone interviews between three months and five years after their infant's death.ResultsFour themes emerged from the qualitative analysis: 1) the presence/absence of suffering, 2) indicators of suffering, 3) temporal components of suffering (trajectory), and 4) influence of perceived suffering on parents, infants, and clinical decision making.ConclusionParents used signs exhibited by infants, as well as information they received from the health care team to form their perceptions of suffering. Perceived suffering followed different trajectories and influenced the decisions that parents made for their infant. Soliciting parent perspectives may lead to improvements in the understanding of infant well-being, particularly suffering, as well as how parents rely on these perceptions to make treatment decisions for their infant.     

Assisting mother with preterm infant breastfeeding

It is necessary to gain nutrition for infants, especially premature. The digestive systems of premature infants are immature, so they find it hard to absorb nutrients. Mother's milk is easy for preterm infants to digest and absorb, so it is the best food for them. In reality, however, mothers always face many problems when breastfeeding preterm infants. They need support systems to establish their confidence in breastfeeding in order to improve their success rates and thus facilitate their continuation of the practice. Nurses can teach mothers how to breastfeed preterm infants. The purpose of this paper, therefore, is to describe the characteristics of the gastrointestinal systems of premature babies, the benefits of breastfeeding for premature babies, the factors influencing premature breastfeeding, the transition from gavage to oral feeding and how to assist the mothers of premature babies with breastfeeding. It also provides information on premature breastfeeding to enable nurses to provide early assistance to mothers in nursing their premature infants and in maintaining the practice of breastfeeding.     

Parental treatment decision making in pediatric oncology

OBJECTIVE: To review progress and future plans for a research program about parents' making treatment decisions for their children with cancer. DATA SOURCES: Theoretical papers, review articles, and research reports. CONCLUSION: Three important questions need to be addressed to achieve the goal of supporting parents in treatment decision making: 1) Whatfactors predict a parent's preferred role iln decision making? 2) What are the critical outcomes from parental decision making that nurses could help to improve? 3) Is it role choice, actual role assumed, or congruence between preferred and actual role in decision making that predicts decision outcomes for the parents? IMPLICATIONS FOR NURSING PRACTICE: Research-based responses to the remaining questions about parent treatment decision making will help nurses develop and test interventions designed to support parents in their decision making experiences.     

Effectiveness of an intervention to improve parent-professional collaboration in neonatal intensive care

OBJECTIVE: This study tested the effect of an intervention to strengthen parent-professional collaboration by increasing the accuracy of parents' understanding of medically relevant information and providing parent-professional meetings to plan infants' care. METHODS: A tri-ethnic sample of mothers of 154 very-low-birth-weight infants participated, with parents of 77 infants in a control group and parents of 77 infants in an intervention group. Comprehension of infant medical condition and satisfaction with collaboration in treatment decisions in the 2 groups were measured 3 times during the first 28 days after admission using 9 collaboration scales. Intervention effects were analyzed with ANOVA and ANCOVA. RESULTS AND CONCLUSIONS: Statistically significant change was found in 6 of 9 scales used to measure collaboration and accuracy of parents' understanding. The intervention group had fewer unrealistic concerns (P = .018), and less uncertainty about infant medical conditions (P = .003); less decision conflict (P < or = .001), more satisfaction with the process by which medical decisions were made (P = .012) and with the amount of decision input they had (P = .058), and reported more shared decision making with professionals (P = .010). There were no statistically significant differences between the groups in satisfaction with infants' care, satisfaction with relationships with physicians and nurses, and satisfaction with the decisions made for their infants' treatment. Infant birth weight and gestational age and maternal demographic characteristics were found to influence collaboration results. The intervention was especially effective in improving understanding and collaboration in low-income, young, minority mothers.     

Infant removal from birth parents - how does health information impact court decisions? A scoping review

ProblemCourts make complex decisions daily regarding removal of infants from birth parents and placement in out-of-home care. Nurses and other health professionals often take part in such processes, either as court informants, witnesses, or via their role delivering healthcare to infants and/or birth parents involved. To date there has been very little research exploring how health information impacts upon decision-making about infant removal.AimTo explore how health information impacts court decisions about removing infants from birth parents.MethodsUsing Arksey and O'Malley's five-stage method for scoping reviews as a guide, eight electronic databases were searched to identify relevant studies published in peer reviewed journals between 1990 and 2020. After initial screening, 154 articles were assessed for eligibility, resulting in 10 relevant studies.FindingsThree overarching themes emerged: (1) Communication between courts and health professionals; (2) Professional bias; (3) Infant attachment and reunification.DiscussionIn many jurisdictions, children's courts operate as closed courts making scrutiny of decisions difficult. Across jurisdictions there is also a widespread lack of recognition in legislation of infancy as a unique developmental stage. Clarity of communication and understanding between health professionals and courts is needed for health information to be applied in consistent ways in court decision making.ConclusionThe role of health information in court decision-making is unclear and heterogeneous. More research is needed if nurses and other healthcare professionals are to have clarity regarding best practice provision of information, to assist courts with decisions about infant removal.     

The best interest principle as a standard for decision making in the care of neonates

In neonatal care, decisions are made on behalf of newborn infants by their parents or, in some instances, health professionals. This paper examines how the best interest standard is the most appropriate focus for decision-making concerning neonates. The components of surrogate decision-making are discussed from the perspective of the neonate's interests and the contribution of the various persons involved in caring for neonates. An argument is presented for the use of best interests when making decisions and the interpretation of best interests is explored. By examining the ethical approaches using best interests, an argument is put forward for caring as an expression of best interests. How some nurses use the best interest standard in their practice is described. The unique perspective nurses may have because of their philosophy, circumstances, experience and concern for neonates is discussed. Examples are used from the literature to support the argument for nurses being in roles and relationships where the neonate's interests are the basis of practice. How nurses classify infants on the basis of their future outcome is used to illustrate how nurses can apply the best interest standard. Ethical approaches of care and cure are used to show the best interest standard as applied to neonates. Caring as an expression of best interests is recommended for nursing decisions and actions using infant outcomes as a focus for caring and best interests.     

Judgements and processes in care decisions in acute medical and surgical wards

The decisions which health care professionals make are the basis of treatment and care given. In order to evaluate effective care it seems logical to suggest that an awareness of the decisions which health care professionals make and how they make them is needed. This study examines the processes nurses use when making decisions about the health care needs of acutely ill patients. In stage one, 104 qualified nurses were interviewed to identify how they decide health care needs. In stage two, a 'think aloud' technique was used with patient simulations to obtain verbal protocols from a further 55 qualified nurses to identify the information strategies they used when making these decisions. The results suggest that nurses base their health care decisions mainly on their assessment of qualitative patient states or conditions. Initial indications are that the processes used differ from those characterized in the diagnostic reasoning model, with the context in which decisions are made being an important influence together with nurses' experience. It is suggested that, in order to develop effective predictive models and clinical guidelines which aid decision making, more research into the nature of health care professionals' decision making is carried out.     

Family perspective on the necessity for advance medical directives.

Although our parents made no written advance medical directives before becoming terminally ill, with the support of the nursing staff we were able to assist them in their quest for a natural death with dignity. This article presents some of the dilemas faced by families in making end-of-life decisions. The author acknowledges the importance of permission for and support of the decision making by other health care providers, and reflects that advance directives would have facilitated the process.