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What is the Purpose of Antenatal Counseling?

2018; Elsevier BV; Volume: 196; Linguagem: Inglês

10.1016/j.jpeds.2017.12.060

1097-6833

John D. Lantos,

Family and Patient Care in Intensive Care Units

See related article, p 109 See related article, p 109 In this volume of The Journal, Kharrat et al report the results of a systematic review designed to explore parental expectations and preferences regarding communication and decision-making for infants born extremely premature.1Kharrat A. Moore G.P. Beckett S. Nicholls S.G. Sampson M. Daboval T. Antenatal consultations at extreme prematurity: a systematic review of parent communication needs.J Pediatr. 2018; 196: 109-115Abstract Full Text Full Text PDF PubMed Scopus (40) Google Scholar I'd like to highlight 2 important points from their paper. The first focuses on the main findings of their review. In 19 published articles that met their inclusion criteria, they found, unsurprisingly, that parents want information about anticipated chances of survival and about long-term prognosis. More surprisingly, unlike many doctors, parents did not usually think of these conversations as ones about whether or not to provide neonatal intensive care unit care and life support. Instead, parents wanted this information to help them prepare to participate in the care of their babies. They were dissatisfied when information was exclusively negatively framed. They did not want to be reminded repeatedly of the potential for neurodevelopmental disability. Emphasizing such information made parents distrust physicians. Parents want healthcare professionals to be sensitive, compassionate, and attentive to their goals. These findings should come as no surprise to any health professional who has worked with parents facing the birth of a baby who is extremely premature. Parents in this situation want what patients and family members want in any similar situation—compassion, sensitivity, honesty, and hope. We know from studies of communication in other situations that physicians who are more optimistic and patient-centered care are perceived as trustworthy and compassionate.2Tanco K. Rhondali W. Perez-Cruz P. Tanzi S. Chisholm G.B. Baile W. et al.Patient perception of physician compassion after a more optimistic vs a less optimistic message: a randomized clinical trial.JAMA Oncol. 2015; 1: 176-183Crossref PubMed Scopus (82) Google Scholar, 3Zwingmann J. Baile W.F. Schmier J.W. Bernhard J. Keller M. Effects of patient-centered communication on anxiety, negative affect, and trust in the physician in delivering a cancer diagnosis: a randomized, experimental study.Cancer. 2017; 123: 3167-3175Crossref PubMed Scopus (63) Google Scholar Often, however, antenatal counseling (ANC) does not give parents what they say they want. Instead, for doctors, the goal of ANC is to offer the parents the opportunity to make an informed choice about foregoing intensive care. To achieve that goal, doctors try hard to honestly communicate pessimistic information. Thus, doctors' goals for ANC may be fundamentally at odds with parents' goals. The roots of this mismatch can be understood by examining the history of our current approach to ANC. Kharrat et al refer, indirectly, to that history by limiting their analysis to articles published after 1990 because, as they say, “Our publication date cut off was guided by the 1990 seminal publication on family centered neonatal care by Harrison.” They thus rightly highlight the outsized role that Harrison's critiques of neonatology played in reshaping the norms of communication about outcomes and complications for babies born premature. Harrison wrote a guidebook for parents of preemies. In writing that book, she had many conversations and correspondences with parents of preemies. She came to the conclusion that doctors often withheld information from parents about infants' poor prognosis. She wrote, “In medical situations involving very high mortality and morbidity, great suffering, and/or significant medical controversy, fully informed parents should have the right to make decisions regarding aggressive treatment for their infants.” For parents to be fully informed, they “must have available to them the same facts and interpretation of those facts as the professionals.”4Harrison H. The principles for family centered care.Pediatrics. 1993; 92: 643-650PubMed Google Scholar She believed that, if given this information, many parents would choose to forego intensive care and, instead, allow their babies to die. She further believed that this would spare many families the burdens and suffering that she associated with raising a disabled child. There is a certain irony in the fact that Ms Harrison's own experiences with neonatal intensive care unit care did not seem consistent with her critiques. That history is worth highlighting because, in many ways, her actual experiences may be more typical than the types of experiences she feared and tried to prevent. As a result, her recommended approach to ANC may not reflect what most parents actually want. In 1975, Ms Harrison was 28 weeks pregnant with her first baby when she developed fever and back pain. She was diagnosed with listeriosis. Her son Edward weighed 1275 g at birth.5Woo E. Helen Harrison dies at 68.http://www.latimes.com/local/obituaries/la-me-helen-harrison-20150714-story.htmlDate: 2015Date accessed: January 28, 2018Google Scholar His prognosis was not good. His father recounted that the neonatologist was completely honest and told him, “Don't even hope. He has seven major conditions, any one of which would be of serious concern.”6Roberts S. Helen Harrison, authority on the trials of premature births, dies at 68.https://www.nytimes.com/2015/07/09/us/helen-harrison-authority-on-the-trials-of-premature-births-dies-at-68.html?_r=0Date: 2015Date accessed: December 5, 2017Google Scholar Mr and Ms Harrison tearfully made the decision to turn off the respirator. But Edward did not die. He grew up to be, according to his father, “A major joy to Helen and me…a delightful human being who plays music for himself all day, sings, dances, and reads Dr. Seuss books out loud with heavy intonations.”4Harrison H. The principles for family centered care.Pediatrics. 1993; 92: 643-650PubMed Google Scholar Edward also had significant disabilities. Over his childhood, he had 20 surgeries. The groundbreaking paper that Harrison wrote did not seem to reflect her own experiences or those of her family. The Harrison family was given bad news about their baby straightforwardly. They engaged in a process of shared decision-making. As it turned out, the prognosis that they were given was not unduly optimistic. It was unduly pessimistic. When life support was removed, their baby survived. Nevertheless, Harrison's critiques of neonatologists for withholding information struck a nerve. Her suggested remedies have been widely adopted as the preferred approach to ANC. But perhaps they are not the best approach. Three factors suggest that it may be time to revisit the norms that govern conversations between doctors and parents who are facing the anticipate birth of a baby who is extremely premature. First, and most importantly, the study by Kharrat et al suggests that current approaches do not reflect the preferences of most parents. Many parents find that negatively framed information undermines trust and interferes with compassionate care. Instead, they prefer optimistic or hopeful messages, ones that acknowledge and even anticipate the possibility of good outcomes as well as bad ones. Such messages can be given without being dishonest. They only require that doctors discuss the range of possibilities and outcomes for babies who are premature. A second important factor that might lead us to re-evaluate the purpose of ANC is that it is often undertaken in contexts in which parents do not really have choices. The studies reviewed by Kharrat et al focus on counseling for parents whose babies were expected to be born between 22 and 26 weeks of gestation. Today, in most centers in the US, there is no choice for babies born at 24-26 weeks. The American Academy of Pediatrics strongly recommends treatment for babies born at 25 weeks and greater.7Cummings J. American Academy of Pediatrics Committee on Fetus and NewbornAntenatal counseling regarding resuscitation and intensive care before 25 weeks of gestation.Pediatrics. 2015; 136: 588-595Crossref PubMed Scopus (170) Google Scholar Recently published data from the Eunice Kennedy Shriver National Institute of Child Health and Human Development Neonatal Research Network show that neonatologists follow these recommendations. At 24 weeks and greater, virtually every baby receives active treatment.8Rysavy M.A. Li L. Bell E.F. Das A. Hintz S.R. Stoll B.J. et al.Between-hospital variation in treatment and outcomes in extremely preterm infants.N Engl J Med. 2015; 372: 1801-1811Crossref PubMed Scopus (438) Google Scholar Parental preferences, then, guide treatment decisions only at only at 22 and 23 weeks. Treatment for more mature babies is guided by the principle of the child's best interest. Nevertheless, it is likely that parents of all babies whose birth is expected to be between 22 and 26 weeks routinely receive ANC. If there are no choices to be made, it is unclear what the purpose of such counseling should be. Even when there are choices to be made, there are problems with antenatal discussions that focus on giving quantitative information about the probabilities of different outcomes. One problem is that the prognosis changes with each passing day, and it is difficult to predict when any woman will deliver. Most women who receive ANC because they are at risk of giving birth prematurely do not, in fact, go on to give birth between 22 and 26 weeks of gestation. In 1 study, about 75% of the pregnant women who were counseled antenatally did not deliver their baby in this gestational age window.9Kaempf J.W. Tomlinson M.W. Campbell B. Ferguson L. Stewart V.T. Counseling pregnant women who may deliver extremely premature infants: medical care guidelines, family choices, and neonatal outcomes.Pediatrics. 2009; 123: 1509-1515Crossref PubMed Scopus (99) Google Scholar Even for those who did, the information given when they were at 22 or 23 weeks would no longer be accurate or relevant if they delivered at 25 weeks. Finally, we also know now that doctors do not all give parents the same information. Stokes et al studied ANC and found that, for a specific baby, 12 different neonatologists gave 13 unique numeric estimates of the probability of survival. The estimates ranged from 3% to 50%.10Stokes T.A. Watson K.L. Boss R.D. Teaching antenatal counseling skills to neonatal providers.Semin Perinatol. 2014; 38: 47-51Abstract Full Text Full Text PDF PubMed Scopus (48) Google Scholar There is even more variation in prognostic estimates by doctors of different specialties.11Tucker Edmonds B. McKenzie F. Panoch J.E. Frankel R.M. Comparing neonatal morbidity and mortality estimates across specialty in periviable counseling.J Matern Fetal Neonatal Med. 2015; 28: 2145-2149Crossref PubMed Scopus (15) Google Scholar The goal of ANC, as proposed by Harrison and as implemented by many doctors, is for doctors and parents to decide together whether to provide intensive care treatment or, instead, to provide palliative care only with the goal of keeping the baby comfortable during the dying process. Two implicit assumptions in this approach are that a decision must be made before birth and that that decision will be irreversible. But neither of these assumptions is true. Perhaps a better approach would be to counsel with a goal of conveying the uncertainties inherent in the situation and to prepare parents for the idea that they may face a series of decisions after their baby is born and doctors have a chance to assess the baby. As shown in the studies reviewed by Kharrat et al, this approach seems to be what most parents want. In implementing this approach, doctors should strive to understand what parents want. To do that, they would need to do less talking and more listening. Given a chance, parents will tell us a lot about their hopes, fears, values, and preferences. They will ask questions that will reveal what they want to learn and need to know. By such careful, active listening, doctors will be in a better position to individualize their discussions and respond to each family's needs. That would be a truly family-centered approach to ANC. Antenatal Consultations at Extreme Prematurity: A Systematic Review of Parent Communication NeedsThe Journal of PediatricsVol. 196PreviewTo synthesize and describe parental expectations on how healthcare professionals should interact with them during a peripartum, antenatal consultation for extremely preterm infants. Full-Text PDF