American Journal of Medical Genetics Part C (Seminars in Medical Genetics) 142C:173 – 179 (2006) A R T I C L E Breaking Difficult News in a Newborn Setting: Down Syndrome as a Paradigm KARIN M. DENT AND JOHN C. CAREY* Breaking the difficult news of an unexpected diagnosis to parents in the newborn setting is a common occurrence in genetic counseling. Many clinical geneticists and genetic counselors have had the challenge of delivering a postnatal diagnosis of Down syndrome to parents of newborns. Down syndrome is a common chromosome condition occurring in approximately 1 in 800 live births. Presenting the diagnosis to families must be accomplished in a supportive, positive, caring, and honest manner. However, there are few scientific data and little instruction in training programs on how best to convey this news in an appropriate manner. Several articles in the literature over the last three decades have proposed various guidelines for the so-called informing interview. Discussions of parents’ preferences and experiences in receiving this news have also been documented. Few reports, however, have focused on breaking difficult news of the diagnosis of a genetic condition to parents in a newborn setting in the genetics literature. In this paper, we will review the medical literature on delivering difficult news, specifically focused on that regarding the diagnosis of Down syndrome in the newborn setting. We propose a theoretical framework from which the informing interview can be planned and future outcome data can be measured. In this way, researchers of this theme can investigate the process, including the healthcare professionals’ delivery of difficult news and make recommendations for continued improvement of the process. Our model can be generalized to breaking difficult news for a variety of other congenital conditions. ß 2006 Wiley-Liss, Inc., KEY WORDS: breaking bad news; communication; Down syndrome; theoretical model How to cite this article: Dent KM, Carey JC. 2006. Breaking difficult news in a newborn setting: Down syndrome as a paradigm. Am J Med Genet Part C Semin Med Genet 142C:173–179. ‘‘Let not your ears despise my tongue forever, which shall possess them with the heaviest sound that ever yet they heard.’’ —Macbeth, Act IV, Sc.3, Shakespeare INTRODUCTION In this captivating lyric, William Shakespeare included two important themes encompassed in the challenge for the health professional in the delivery of difficult news: the idea of the ‘‘warning shot’’ and the concern regarding the ‘‘messenger.’’ Ideally, we as healthcare professionals can do as well in our choice of words and language. The following vignette represents a personal narrative that defined the senior author’s longstanding interest in the topic of the informing interview, that is, the socalled breaking of difficult (‘‘bad’’) news. ‘‘It was July 1st; only a few days before I had been an intern, today I was a ‘resident.’ For this reason, the nursing Karin M. Dent, M.S., LGC, is a certified genetic counselor specializing in pediatrics. She currently provides genetic counseling in the Medical Genetics and Neurofibromatosis clinics and in the Congenital Hearing Loss research clinic at the University of Utah Medical Center. Her research interests include genetic counseling for dystrophinopathies and the etiology of congenital hearing loss. She is a faculty member and co-course director in the new University of Utah Graduate Program in Genetic Counseling. John C. Carey, M.D., MPH is a Professor and Vice-chair in the Department of Pediatrics at the University of Utah Medical Center. He has a career long interest in the theme of delivering difficult news to families. Currently he is principal investigator on the Utah Hearing Loss Etiology project and is Editor in Chief of the American Journal of Medical Genetics. *Correspondence to: John C. Carey, University of Utah Department of Pediatrics, Division of Medical Genetics, Salt Lake City, UT 84132. E-mail: JOHN.CAREY@hsc.utah.edu DOI 10.1002/ajmg.c.30100 ß 2006 Wiley-Liss, Inc. staff of the Newborn Intensive Care Nursery treated me differently; just a week or so before, they would consult the resident on real questions about patient care, now they called me. On this particular morning—my first day in the NICU—I was greeted on rounds by the announcement that a newborn infant, presumably with Down syndrome, had been born in the Well Baby Nursery. In those days, the pediatric residents who covered the sick and premature babies in the NICU would also care for the occasional problem that arose in the Well Nursery. As my colleagues and I proceeded to make rounds discussing the day’s care on the many ill infants on ventilators, my mind wandered to what I perceived as an anxietyproducing challenge: I had never been the one to present to a family the information on what I considered to be an overwhelming and serious diagnosis. In fact, I recollect being reasonably distracted during rounds by the upcoming 174 AMERICAN JOURNAL OF MEDICAL GENETICS PART C (SEMINARS IN MEDICAL GENETICS): DOI 10.1002/ajmg.c event. An hour or so later after reviewing the progress and lab values of the two dozen or more babies in the NICU, I left my group to perform my assigned task. The senior resident and attending indicated confidence in my being able to discuss the working diagnosis with the family. As I walked from the NICU to the Well Baby side, I had the sense of being unprepared; yes, I was ready to take care of the baby with cyanosis or hyperbilirubinemia, but this was a novel challenge. I have only vague memories of walking in the room and exactly how I introduced myself to the family of this 12-hr-old infant with presumed Down syndrome. My own cursory examination confirmed the clinical suspicion of my colleagues. I recall reporting a few sentences that related our concern of the diagnosis and perceiving a rather rapid change in the affect of both parents. I can still see their faces more than 30 years later. My clinical guess now is that my own nervousness likely conveyed a lack of sensitivity or caring on my part. Whatever the case might have been, my memory of the parents’ shock and particularly the anger in the father still stay in my imprint. The session ended rather quickly and certainly rather badly from my memory. I do know that I was able to relate that we had already sent a blood test to confirm our clinical diagnosis and that the result would be back in a ‘week or so.’ I also know that it was hard for me to check in with them over the next few days, but I did, usually to find the mother by herself and relaying significant sadness. I do not really know if my own manner and presentation played a minor or significant role in this defining moment for these parents in 1973. What I do know and still am clear about is that as a second-year pediatric resident I had been given no instruction or guidelines as to how to rise to this occasion. The event was defining for me. I found myself taking children with Down syndrome and related conditions into my continuity clinic. With thoughts of this event, I entered a medical genetics fellowship exactly 3 years later to the day.’’ This personal account relates the experience of—in this case—an inexperienced physician encountering this scenario: informing parents of a difficult diagnosis in a newborn setting. However, the experience of the parents in this event was important, if not more important, than the physician’s experience. From studies that are mostly surveys or opinion pieces summarized below, it is known that the details of this event are recalled vividly by the family. Some of the actual facts, perhaps even the words, may not be recalled with complete accuracy, but the experience and the emotion that the event engenders are recalled to the detail. In this review, we will: (1) summarize key studies in the literature from various disciplines on the breaking difficult news scenario; (2) focus in particular on the components of this scenario for the parents of newborns with Down syndrome; and (3) present a theoretical model that provides a framework for both research and clinical care. Breaking the news to a family in the newborn setting is one of the most difficult, yet common, challenges for the medical geneticist and genetic counselor. ‘‘How the news is conveyed and the circumstances surrounding the receipt of the news have implications for the giver and receiver’’ [Ptacek and Eberhardt, 1996]. Almost every genetics healthcare professional has had the experience of delivering information to a family in this setting, though few have had any formal training at the graduate or residency level. Even the labeling of the event of the delivery of difficult—or what is usually called ‘‘bad’’—news is defining. ‘‘Bad news’’ was defined by Buckman  as ‘‘any news that drastically and negatively alters the patient’s view of his or her future.’’ Other authors describe it as pertaining to ‘‘situations where there is either a feeling of no hope, a threat to a person’s mental or physical wellbeing, a risk of upsetting an established lifestyle, or a message that is given which conveys to an individual fewer choices in his or her life.’’ [Bor et al., 1993] As profes- ARTICLE sionals it is challenging to provide this unexpected information in a sensitive and compassionate manner. Though it is our obligation as professionals to acknowledge the likely altered expectations for a child with an unexpected ‘‘bad’’ diagnosis, the recipient can be the only judge of the weight carried in this message. In this way, caution should be applied in labeling the information we deliver as ‘‘bad.’’ As will be discussed below, in relation to Down syndrome, there is evidence from the parents given this news of Down syndrome in particular that presentation of a positive view improves the experience of the event. In this study, we chose to use the adjective ‘‘difficult’’ instead of ‘‘bad’’ in describing the unexpected and often unwelcome information delivered to a family. The informing interview, in which a new, unexpected, and potentially serious diagnosis is given to a family by a healthcare practitioner, has been discussed in the literature for more than three decades. There are a few generally accepted guidelines on how breaking difficult news should be accomplished effectively in this experience. Studies exploring this issue have been published proposing guidelines for delivery of the news. However, few are scientific studies with measurable outcome data; most are expressions of expert opinion, offering practical guidelines. Most of the scientific studies are surveys, although in the case of Down syndrome, there is one retrospective interventional study that we discuss below [Cunningham et al., 1984]. The vast majority of the literature on breaking ‘‘bad news’’ is written by physicians addressing the perspective for a physician on how to effectively communicate the information. RESEARCH REVIEW: BREAKING DIFFICULT NEWS There are three seminal studies published in the last 14 years that are particularly worthy of special mention. Sharp et al.  presented results of a survey of the experience and preferences of 189 parents of children with disabilities on receiving the news of their child’s ARTICLE AMERICAN JOURNAL OF MEDICAL GENETICS PART C (SEMINARS IN MEDICAL GENETICS): DOI 10.1002/ajmg.c diagnosis. The parents’ overall preferences include the following: (a) wishing for more communication of information, (b) for the display of feeling from their physician, (c) more time allowed for parents to discuss the information and ask questions, (d) more expression of confidence in delivery, and (e) parentto-parent referral (preferred by 87% of the families). This study represented a survey of a relatively large number of parents. It was one of the first to emphasize the request by parents for referral to other families or support groups. The parents’ preferences also indicated a request for a ‘‘display of feeling’’ from their physician. Two comprehensive review studies in the mid-1990s captured the important themes of the literature up to that point. A key study by Ptacek and Eberhardt  proposed consensus recommendations for healthcare providers in this setting. These authors tabulated the major categories of recommendations under two broad headings: Physical/ Social setting and the Message; see Table I. Certain themes emerged from their comprehensive review of what had been previously written on the topic. As mentioned, most of the work was based on expert opinion, with some survey studies. The emphasis was on location in a quiet and private place, the need for a ‘‘warning shot,’’ and also a conveyance of some measure of hope. Moreover, the recurring theme of the language used by the professional is stressed in this study. A review by Girgis and SansonFisher  came from experience in oncology. These authors provided a detailed list of summary principles, many of which overlapped with the conclusions of Ptacek and Eberhardt . Additional practical suggestions listed in this study included the following: provide accurate and reliable information; one professional only should be responsible for the delivery; the primary responsibility of the professional is to the individual patient; ask the family how much they wish to know; tell the diagnosis as soon as it is known; be sensitive to the patient’s culture, race, religious beliefs, and social background; and acknowledge one’s own shortcom- TABLE I. Consensus Recommendations for Breaking Bad News Recommendations Physical and Social Setting Location Quiet, comfortable, private Structure Convenient time, no interruptions, enough time available to ensure no rushing In person, face-to-face, make eye contact, sit close to patient, avoid physical barriers People Support network: Identify and have present at patient’s request Message What is said Preparation: Give a warning shot Find out what patient already knows Convey some measure of hope Acknowledge and explore patient’s reaction and allow for emotional expression Allow for questions Summarize the discussion: Verbally and/or in written form, audiotape consultation How it is said Emotional manner: Warmth, caring, empathy, respect Language: Simple, careful word choice, direct, no euphemisms or technical diagnostic terminology, avoid medical jargon Give news at person’s pace, allow them to dictate what they are told Reprinted with permission from Ptacek JT and Eberhardt TL. Breaking Bad News; A review of the literature. 1996. JAMA 276:496-502 American Medical Association. ings and emotional difficulties delivering the difficult news. Several recent reports in the literature reiterate the importance of a patient-centered communication style and continue on the theme of providing guidelines for physicians on how to break difficult news [Mast et al., 2005]. Vandekieft  proposes a simple and 175 useful ABCDE mnemonic, which summarizes much of the data already presented in the medical literature in reviews: (A) advanced preparation; (B) build a therapeutic environment/relationship; (C) communicate well; (D) deal with patient and family reactions; (E) encourage and validate emotions. By and large, physicians and other healthcare professionals who deliver difficult news would agree that these guidelines illustrate the best practice, but translating these guidelines into the patient interview remains the challenge. Notably, other mnemonics have been presented in the literature for quick memory for the professional including ‘‘PACE’’ which suggests clinicians ‘‘pace’’ the news they give a family by (1) Planning the setting, (2) Assessing the family’s background knowledge and experience, (3) Choosing strategies that best fit the family’s particular situation, and (4) Evaluating the family’s understanding of the information [Garwick et al., 1995]. Mast et al.  emphasized the physician’s style in communicating difficult news. Different types of physician communication may evoke various perceptions, several different degrees of satisfaction, and many emotional states with clearly distinct reactions in recipients receiving difficult news. This theme of physician style was initially raised by a study by Sharp et al.  where parents preferred ‘‘confidence’’ in their physician. It also emerges again when we discuss Down syndrome in particular and the positive attitude parents prefer. DOWN SYNDROME AS A PARADIGM FOR DELIVERING DIFFICULT NEWS IN A NEWBORN SETTING Down syndrome is the most common chromosomal condition and occurs in approximately 1 in 800 liveborn infants. Talking to the parents of a newborn with this diagnosis when unexpected is a common experience for pediatric practitioners and frequently involves medical geneticists and genetic counselors. In the last three decades the senior author (JCC) has had the opportunity to witness 176 AMERICAN JOURNAL OF MEDICAL GENETICS PART C (SEMINARS IN MEDICAL GENETICS): DOI 10.1002/ajmg.c a change in evolving attitude toward presenting the diagnosis of Down syndrome in the newborn setting. In the 1970s, opening the interview with an expression such as ‘‘Congratulations on the birth of your baby,’’ would have been viewed as overly upbeat, but now, in fact is often the standard [Skotko, 2005]. The important question, however, that needs to be addressed is whether or not the parents experience and overall satisfaction has changed over these years. In the last four decades, various researchers have investigated the way in which physicians deliver a postnatal diagnosis to a family with Down syndrome. Most of the studies are survey or questionnaire investigations. Key studies that exemplify this type of research include Gayton and Walker ; Pueshel and Murphy, 1977; Cunningham et al. ; Gath ; Cooley ; and Skotko . As emphasized in this last study, which was a comprehensive review of this topic, most studies have been limited to ‘‘reflections or very small sample sizes.’’ In addition to the key studies cited above, a complete listing of the previous work on delivering the postnatal diagnosis to parents is referenced in the study by Skotko . Even a cursory look at this literature leaves the reader with the impression that while some families are satisfied with the news-giving, an unacceptable proportion indicate feelings of frustration and dissatisfaction with the experience. A study from our institution on this theme, published in abstract form [Kelly et al., 1998] provides some recent data on these issues. The authors compared parental experiences with parental preferences in receiving news of the diagnosis of Down syndrome. Surveys were sent to 119 Utah families and 38 of the questionnaires were returned. Results indicated that 42% of parents were satisfied overall with the interaction with their professional at the time of diagnosis, while 38% were dissatisfied (greater than 20% were neutral). Overall, parental preferences were unmet regarding how long it took the healthcare professional to ‘‘get to the point of the discussion,’’ the amount of informa- tion provided both in verbal and written form, discussion of mental retardation as a common feature of the condition, level of confidence in healthcare provider, and professional display of feelings. These data underscored the importance of parental preferences in receiving difficult news in a relatively recent survey that provides a snapshot of parents’ perceptions of this experience in Utah in the mid 1990s. The investigation of Skotko  surveyed the parental perspective of mothers who received the diagnosis of Down syndrome on their newborn. This author collected data from mothers who had children with Down syndrome over the past 40 years. As a result, he was able to examine the question of whether healthcare professionals are ‘‘getting better’’ in delivering news of the diagnosis. Mothers rarely reported that the birth of their child with Down syndrome was ‘‘a positive experience.’’ However, they were more optimistic when their physician talked about ‘‘the positive aspects of Down syndrome’’ and provided them with current printed materials. These two factors seemed to be most important in predicting a more positive experience. The mothers reported that few healthcare professionals provided the positive aspects of Down syndrome, presented them with current information, or offered referral to a support group or other experienced parents. Analyses do show that this is changing, ‘‘albeit slowly’’, and for most variables change only progressed from ‘‘strongest disagreement’’ to ‘‘disagreement.’’ Conclusions of the author reiterate the fact that even after decades of study and publication and recommendations of proposed guidelines, healthcare professionals still need to continue to improve the manner in which postnatal diagnoses are delivered in this setting. Despite the helpful recommendations and guidelines provided by experts in the field, there still exists significant need for scientific investigation of the effect of delivery of news to families. As mentioned above, one of the few interventional studies performed was the work of Cunningham et al. . In this study, parents of newborns with Down ARTICLE syndrome were counseled either by an expert team or in the usual fashion of the particular hospital. While the numbers are small in these cohorts, 100% of mothers in the model service cohort reported they were satisfied. Only 20% of the mothers in the control group expressed similar satisfaction with the experience. The work of Cunningham et al.  suggests that when parental suggestions are implemented in a routine manner, satisfaction levels improve. As mentioned, the experience of the scenario is remembered vividly by families. Whether or not satisfaction with this experience has a long-term effect in parental coping is unknown, and this also deserves future investigation. Based on personal experience and a continued review of the literature, we propose a guideline of care for the newborn with Down syndrome. These recommendations have been enriched by the investigation of Skotko  (Table II). PROPOSED THEORETICAL FRAMEWORK While numerous authors and reviewers have proposed guidelines for the professional in this setting, no theoretical framework exists upon which to base research and clinical care. We propose a model that can be utilized for future investigations and for expanding future care guidelines. This model, based on a combination of personal experiences and key references in the literature, is depicted in Figure 1. On the left aspect of Figure 1, the many variables that are related to pregnancy are categorized in various groupings. The center of the model is the birth of the child with the genetic condition. On the far right is the reaction sequence of the family which is impacted by the informing interview (the major theme of this study) and supportive care. Certain key writings of the 1980s provide the literature basis for this framework. Kessler  reviewed many of the themes that enter into the experience of pregnancy leading up to the event of birth. There is a vast literature on the ARTICLE AMERICAN JOURNAL OF MEDICAL GENETICS PART C (SEMINARS IN MEDICAL GENETICS): DOI 10.1002/ajmg.c TABLE II. Recommendations for Setting, Agenda, and Timing of ‘‘Difficult News’’ Informational Interviews (Adapted from Carey JC and Bamshad M  and Skotko B ) Informing interview (often prior to confirming karyogram) . Setting Private As soon as possible Both parents together or w/parent support person Have baby present when possible Second interview (often after confirming karyogram) . Setting Private . Message and Agenda Refer to the infant by first name Present process of diagnosis and definition of syndrome Perform a physical examination and emphasize the normal aspects of the baby Provide current information on developmental disability and natural history of the condition (written & verbal) Present factual information, that is, all have developmental disabilities-variable Set follow-up plan Allow parents privacy to discuss information alone . Message and Agenda Let parents’ questions drive the agenda Discuss chromosomes, genetic information, and the baby’s results Discuss recurrence risks and prenatal testing options Provide community resources and refer to other experienced parents and support groups Review guidelines for health supervision . Psychosocial aspects Assess and acknowledge parents’ reactions Discuss the positive aspects of the condition Allow parental questions Continuing support Follow-up with family over next several days Acknowledge feelings of denial, anger, guilt, and sadness mixed with the natural tendencies to bond to the baby Reassure the parents of the normalcy of these feelings Figure 1. Proposed theoretical framework for breaking difficult news in the newborn setting. 177 178 AMERICAN JOURNAL OF MEDICAL GENETICS PART C (SEMINARS IN MEDICAL GENETICS): DOI 10.1002/ajmg.c psychology of normal pregnancy and a small but important body of work on the meanings of a child in a family [Kessler, 1979]. Certainly both the events that surround the attachment of personhood and the individual background of a family (referred to in Fig. 1 as demography, that is, parental ages, gravidity, ethnicity, religion), play a role and are potential independent variables leading up to the event of birth [Irvin et al., 1982]. Most importantly, the meaning of congenital defects and disabilities within a specific culture likely plays a role [Ablon, 2000]. At the time of birth, the individual medical problems present in the infant result in their own set of challenges for the family in their coping process. The parents who had a child with an orofacial cleft, ambiguous genitalia, or Down syndrome deal with a different set of themes than the family of a child with a structural heart defect [Irvin et al., 1982]. The sequence of parental reactions in the birth of a child with congenital malformations has been likened to the crisis that occurs with any loss [Drotar et al., 1975; Irvin et al., 1982]. The reaction sequence occurs in stages with significant variability among families as to how long a parent proceeds through the stages. The model by Drotar et al.  proposes the stages of shock, denial, sadness and anger, equilibrium, and reorganization. Recognizing this process and being able to employ appropriate counseling techniques dependent on the stage is an important component of our model as well. Once this reaction sequence is set in motion, intervention strategies for any crisis in a medical setting would be implemented for supportive care. As suggested in this study, the informing interview is a potential touchpoint that could impact the sequence of stages that occur at birth. This model would propose that various aspects of the informing interview could be examined in relation to outcomes, such as parental satisfaction or long-term coping. Clearly, supportive care by other health professionals, pastoral advisors, extended family, and the family’s culture also enter into impacting the reaction sequence. Elements of supportive care that could be investigated in terms of affecting outcome include the role of pastoral care, the effect of referral to support groups or experienced parents, and the establishment of a medical home [American Academy of Pediatrics (AAP), 2006]. With this model in mind, various questions and hypotheses could be posed and studied with outcome research design. Investigators would need to identify the outcome indicator such as parental satisfaction or emotional aspects of the parents using well-established outcome instruments. One could imagine such questions as the interaction of the informing interview within various cultures or numerous demographic factors or the seriousness or type of individual problem playing a role in outcome. CONCLUSIONS AND RECOMMENDATIONS As summarized by Skotko , there is still much room for improvement for us as professionals in this important event in the lives of our patients. With our model and the review of the literature in mind, the authors are suggesting two general recommendations for continued improvement with a goal of parental satisfaction in mind: 1) Training of healthcare professionals, including medical genetic residents and genetic counselors in clinician– patient communication, in general, with a specific focus on breaking difficult news. There is a growing body of literature on the teaching and evaluation of communication skills including the communication of difficult news. This body of literature should be consulted in developing such training modules [Eggly et al., 1997; Greenberg et al., 1999; Mukohara et al., 2004; Deveugele et al., 2005; Amiel et al., 2006]. Most training programs for genetic counselors and genetic residents incorporate training modules for breaking difficult news into their curricula. We recommend continued development and implementation of these ARTICLE clinical skills as a part of programs’ core competencies. Geneticists and genetic counselors’ skills in delivering difficult news should be utilized in teaching and developing these complicated skills even in other disciplines. They likely have vast experience in delivering the difficult news of an unexpected genetic diagnosis, Down syndrome in particular, which could benefit other professionals. 2) Development and establishment of an infrastructure within each hospital system that makes it routine for the provision of current and accurate information and current referral to parent support groups and experienced parents [Genetic Alliance, http: //www.geneticalliance.org/]. For those centers without a genetics consultation service, new patient information packets could be made available to families of newborns with Down syndrome. Up to date information in written form with support group contact information would be included. From a general point of view, another issue that this discussion raises (but does not address here) is the potential for destigmatization of genetic conditions with better communication of information. We recommend establishing an international collaboration of healthcare professionals, including geneticists, who would work toward developing strategies for the acceptance and destigmatization of persons with congenital conditions and disabilities by society. In conclusion, we have learned from parents and families of patients that delivery of difficult news in a sensitive, caring, and confident manner is essential to their experience in adjusting to and accepting an unexpected diagnosis of Down syndrome in their newborn. A positive, confident, and informative discussion with appropriate referrals to support groups and experienced families is clearly desired and highly recommended by the authors. 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