Part 1: Fundamentals of Pediatrics and Child Care

INTRODUCTION

As pediatrics and the delivery of children’s health care enter the third decade of the 21st century, the role of the pediatrician continues to evolve and change. Guided by the knowledge, skills, and tools that the profession has accumulated over many decades, pediatricians must strategically respond to changing conditions, health determinants, and the epidemiology of childhood, as well as to shifting social and cultural norms of what constitutes healthy child development. Our knowledge of the pathophysiology of many diseases has evolved from simple causal models based on germ theory to more complex multilevel and developmentally informed models of gene–environment interactions. As pediatric care has triumphed over many infectious diseases and made significant strides in the management of chronic disease, newer morbidities continue to emerge as the social conditions of children and families evolve and inequality and adversity become more prevalent. The growing prevalence of developmental, behavioral, and mental health conditions is indicative of these changes. To impact child health, forward-looking pediatricians must provide care with an expanded concept of healthy child development and must acquire skills to effectively practice in collaboration with other individuals and entities involved in promoting and supporting that development.

Societal expectations for healthy child development are a reflection of our collective hopes for what our children should achieve and what challenges they must successfully face in their transition to adulthood. These expectations are being transformed by an expanded understanding of what constitutes a healthy child as well as by a globalized economy that places a higher value on cognitive and emotional performance in rapidly evolving work environments.

The 2004 Institute of Medicine’s landmark report, Children’s Health, The Nation’s Wealth, presents a new definition of child health and three associated, measurable domains:

The domains include health conditions, capturing the traditional notions of health measured by disorders or illnesses of body systems; functioning, assessing how health affects an individual’s daily life; and health potential, identifying the assets and positive aspects of health, such as competence, capacity, and developmental potential.

The new definition and domains help establish the goals of child health care, which go beyond diagnosing and treating disease and preventing and managing chronic health conditions. They include promoting the health capacities of each child and optimizing the health potential of all children. Underlying this definition and these goals is a new and more dynamic conceptual model of how health develops; the model can be represented by a health trajectory that is influenced by a range of biopsychosocial and environmental risks, as well as by protective and promoting factors (Fig. 1-1).

Pediatricians play an important, collaborative role in influencing factors that can optimize the child health trajectory. For one, the role and professional responsibility of the pediatrician are greatly expanded by ever-increasing medical knowledge and new, more powerful and expensive technologies. In addition, evolving performance guidelines of healthcare systems redefine expectations and attributes of the well-trained pediatrician. These expectations include the areas of professionalism, systems-based practice, patient care, interpersonal and communication skills, medical knowledge, and practice-based learning and improvement. As such, pediatricians of the 21st century, in striving to improve child health, whether at the individual or population level, must master a new, important array of knowledge, skills, and attitudes (Table 1-1).

This evolution includes a shift in focus from dealing with the symptoms and empiric treatment of diseases, as well as with syndromic identification, to a greater understanding of underlying mechanisms of health and disease development. This leads to multilevel interventions that target factors that span from the genetic and cellular mechanisms to the social and family factors that are increasingly appreciated as important causal influences. In many situations, this evolution has moved medical care from a more limited focus on symptomatic treatments and palliative care to a healthcare model utilizing more sophisticated diagnostics and therapeutics, spanning from gene manipulation to modifying social influences.

The ability to deal with the inherent complexity of 21st-century medical care is facilitated by information systems, including the Internet and electronic health records. These systems also create immediacy with regard to new knowledge that is available not only to pediatricians but also to patients and families, with an expectation of more timely application of that knowledge.

As patients and families have gained increased access to medical information, a corresponding emphasis on more patient-centered and family-centered medical care has developed. Decision-making is shifting from a traditional physician-focused process to one determined by informed patient and family preferences. Widespread access to evidence-based guidelines and benchmarked systems transparent about patient outcomes have created an expectation that pediatric health care will be highly reliable with systems in place to assure safety, consistency, and high quality. It also has underscored the need for medical homes that not only provide continuous care but can translate the barrage of information. Further, family-centered models of care require that pediatricians are skilled at collaborative service delivery efforts that include the variety of settings and professionals that serve children within the context of their families. All these dimensions of care have been particularly driven this century by the Institute of Medicine’s 2001 report, Crossing the Quality Chasm, which stipulates that health care should be safe, effective, patient centered, timely, efficient, and equitable.

Many influences are now making it difficult for an individual practitioner to care for children in multiple settings: inpatient, outpatient, or community health facilities. This is particularly true for generalists and not as true for pediatricians in more rural settings or for subspecialists. As a result, there is an increasing focus on providing care in one setting, whether inpatient or outpatient, with a few practitioners focusing on community health. This trend underscores the importance of collaboration across sectors (eg, education, family support, child welfare) to effectively influence and promote optimal child health.

Even with all these changes in pediatric health care, child health from a whole population perspective has only slightly improved. While all-cause mortality in childhood continues to decline, the proportion of children with chronic health conditions and disabilities has continued to rise. For specific disease entities, such as cancer, congenital heart disease, cystic fibrosis, and type 1 diabetes, important new treatment modalities have achieved cures and extended life. However, persistently disparate and high infant mortality rates; increasing incidence of some diseases, such as autism and attention deficit hyperactivity disorder; and an epidemic of obesity that is leading to chronic medical diseases such as type 2 diabetes in younger populations underscore the continued challenge of improving child health. Our advances in understanding the determinants and meaning of child health, as reflected in the Institute of Medicine’s new developmentally focused definition, is evidence of the complementary nature of technical knowledge and collaborative strategies.

In this new era of child health, pediatricians and pediatric care need to continue to focus on care at the level of the individual child but also need to incorporate a population and community health perspective. Solutions to ongoing child health issues will be found within the context of the pediatrician’s medical practice and also within the larger environmental context that now also includes the physician. In this context, the pediatrician can serve as the interpreter and synthesizer of clinical, public health, and social factors, moving beyond the confines of individual-focused care models to one that also captures and incorporates a population and community health perspective. Pediatricians skilled in these arenas can and should play a significant role in impacting the health of children in an increasingly complex world that presents many challenges to healthy development.

SUGGESTED READINGS

INTRODUCTION

Making thoughtful decisions about patient care is at the core of a physician’s responsibilities. Multiple factors feed into clinical decision-making for a given patient with a given problem: a physician’s experience, the values and preferences of the patient and patient’s family, socioeconomic factors, available resources, and the best evidence that exists at the time. Physicians may have an understandable tendency to be influenced by a past missed diagnosis or an emotional case or to ignore information that conflicts with preconceived theories. Evidence-based practice can help mitigate some of these biases. Despite the trend toward peer-reviewed evidence, however, a management plan based solely on evidence from the literature may fail if not adapted to individual patient circumstances or accepted by the family. Peer-reviewed evidence is therefore a necessary but insufficient basis for clinical decision-making.

Satisfying the need for evidence typically comes in three forms: keeping up to date, building expertise in a specific field, and answering questions related to the care of specific patients. Patient-centered evidence, the focus of this chapter, demands a streamlined approach. For most clinicians, it is not feasible to spend hours reading dozens of studies to answer every clinical question that arises. The clinician must prioritize the most important patient-centered questions. A useful approach is as follows, using the mnemonic PARCA:

1. Prioritize the most important patient-centered questions.

2. Assemble the four elements of an answerable question (PICO, described shortly).

3. Retrieve the evidence.

4. Critically appraise the evidence.

5. Apply the evidence to the particular patient.

The following vignette demonstrates the application of this process:

PRIORITIZING THE QUESTIONS

The physician must first decide whether it is important enough to warrant the time and effort of a literature review. If the question pertains to the mechanism of action of medications or the pathophysiology or signs and symptoms of a disease (a background question), the answers are likely found in textbooks or review articles. If the question aims to ascertain which therapy is most effective or whether a diagnostic test is useful (a foreground question), the answer is likely found in systematic reviews or original journal articles. For some foreground questions, clinical guidelines or predigested evidence may be sufficient. For other questions, clinicians may decide that they are an important enough part of their practice that it is worth looking at the evidence in more detail by following the steps below.

ASSEMBLING THE QUESTION

The preliminary question (Will thickened formula help?) must be converted into a more complete, answerable format. One method, from Sackett, is summarized by PICO: patient or problem, intervention, comparison, outcome. The time invested in framing clinical questions in such a way is rewarded in efficiency by weeding out inapplicable evidence, irrelevant comparisons, and clinically unimportant outcomes. The focus should be on patient-centered outcomes (eg, hospitalization rate, length of stay, decrease in pain). Studies with disease-oriented outcomes (eg, improvement in laboratory values) can be a guide to future investigation but have limited application to patient care. Reframing the preliminary question in PICO format might lead to the following: In children with gastroesophageal reflux and poor weight gain (P), does thickened formula (I), compared with positioning alone (C), result in improved weight gain (O)?

RETRIEVING THE EVIDENCE

Once the question is clearly stated, the search strategy begins by seeking current systematic reviews, such as in the Cochrane Library. In addition to saving time, well-done systematic reviews can find statistical significance in the aggregate that was not reached in any individual study because they pool the results of multiple studies. A search can then be conducted for original studies published since the review was completed. A convenient method of doing this is by using the National Library of Medicine PubMed Web site portal (https://pubmedhh.nlm.nih.gov/nlmd/pico/piconew.php) that permits clinicians to directly enter each part of the PICO question. Specifying a 4-month-old infant with reflux as the patient and problem and “thickened formula” as the intervention yields more than 2 dozen articles. To efficiently and effectively determine which articles are worth reading, clinicians can survey the article titles (and occasionally the abstracts) and compare them to the PICO question. Among the retrieved titles are the following:

1. A thickened formula does not reduce apneas related to gastroesophageal reflux in preterm infants

2. Effect of cereal-thickened formula and upright positioning on regurgitation, gastric emptying, and weight gain in infants with regurgitation

3. Efficacy of a pre-thickened infant formula: a multicenter, double-blind, randomized, placebo-controlled parallel group trial in 104 infants with symptomatic gastroesophageal reflux

4. Effects of thickened feeding on gastroesophageal reflux in infants: a placebo-controlled crossover study using intraluminal impedance

Since the patient population of interest is term infants and the issue is weight gain, not apneas, article 1 can be skipped. The desired outcome measure is weight gain, so studies that use disease-oriented outcomes, such as article 4 (intraluminal impedance), can also be skipped. Using this strategy, the number of studies to be appraised is reduced to a manageable number.

Study Types

The “best” study type depends on the question. Systematic reviews and randomized control trials best address questions about therapy. To determine the efficacy of a diagnostic test, a prospective, blinded comparison trial is most useful. Questions about prognosis are best addressed in cohort studies, followed, in order of value, by case-control studies and case series; randomized control trials about prognosis or harm can be difficult to conduct, may have ethical problems, or may not even be feasible if the harm event is rare.

In cohort studies (Fig. 2-1A), investigators start by finding a group of children with a particular exposure and a group without such exposure. The groups are then followed to see whether disease develops. If a greater proportion of exposed than unexposed children develops disease, an association between the exposure and disease exists. Because the individuals in the groups are not randomly assigned, cohort trials are not as useful as randomized controlled trials for determining causation. The strength of associations in cohort trials is limited by the possibility of confounders or extraneous variables that may influence the association being studied.

In case-control studies (Fig. 2-1B), investigators begin with a group of children with a disease (the cases) and then match them as closely as possible to individuals who do not have the disease (the controls). The proportion of each group with the exposure of interest is determined. If there is a significant difference (eg, if 90% of the case group were exposed but only 20% of the control group were exposed), then there may be an association between the exposure and the disease. Case-control studies are practical for rare diseases. (Imagine the size of a cohort study needed for a disease with an incidence of 1 per 1 million.) The disadvantage of case-control studies is the problem of recall bias (control cases might not remember past exposures) and the inability to calculate incidence or prevalence of disease.

A third type of observational study is the cross-sectional study (Fig. 2-1C). A population is surveyed at one moment in time for both the presence of disease and the presence of exposure. The prevalence of disease in exposed children is then compared with that of non-exposed children. Cross-sectional studies are easier to perform than cohort or case-control studies. While they cannot establish causation, they can give useful information about prevalence and can suggest associations that can then be studied in depth using a randomized control trial or stronger observational study.

CRITICAL APPRAISAL OF THE EVIDENCE

The fundamental determination is whether a study is valid (ie, what is claimed as true is actually true). Seven questions aid in determining the validity of a study:

1. Were the patients randomized and was the randomization concealed? Randomization is the only way to equalize study groups for known and unknown confounding factors. A cohort study with carefully matched groups might achieve the former but not the latter.

2. Were treatment and control patients similar at the start of the study (ie, did randomization work)? Most studies provide a table of demographic data and other potentially relevant characteristics of the individuals in the study groups. Comparability of the groups is necessary to assure that randomization was effective.

3. Were patients analyzed in the groups to which they were randomized (intent to treat)? What should be done with participants who do not follow the assigned protocol? If 10% of children who were supposed to get thickened formula received regular formula instead, should they be counted in the treatment group? In the control group? Dropped from the study? The problem with the third option is that, in real practice, nonadherence is common. The clinically important result is how a potential treatment performs in real-world use. Moving nonadherent participants into a different group might reduce the benefit of randomization, since a factor relevant to the study’s outcome also might affect compliance with the intervention (eg, children with the worst reflux may have given up on the thickened formula and tried something else). Ideally, a study will analyze nonadherent patients in the original randomized category (intent-to-treat analysis) and do a separate analysis based on patients who actually follow the protocol (per-protocol analysis).

4. Were clinicians, patients, and study personnel blinded to the group assignment? If clinicians or patients know which intervention is being received, they might introduce bias into treatment plans or assessments and either exaggerate or minimize the true treatment effect.

5. How many patients were lost to follow-up? Was the length of follow-up reasonable? If a large number of patients drop out of a study, it is difficult to assess the outcome in each group fairly (especially if, for instance, the patients dropped out because the new therapy was not working or had intolerable side effects). Some loss to follow-up is unavoidable. One way of assessing whether the loss is acceptable is by using a worst-case scenario analysis. The authors could assume the worst case, that all of the children lost to follow-up did poorly, and recalculate the results using that assumption. If the results still indicate a benefit, the conclusion is strengthened. As a rule of thumb, loss to follow-up of more than 20% significantly reduces the validity of the study.

6. Is it possible that the results could have been due to chance (P > .05)? Another threat to the validity of a study is that the difference between groups is not real but is simply due to chance (a type I error). The probability of this error is expressed as P. By convention, up to a 5% likelihood of the results occurring by chance (P ≤ .05) is accepted. The confidence interval is the range of values that the authors are 95% certain contains the actual value.

7. Is it possible that results could have been skewed by a small sample size? (When does n matter?) In a “positive” study (ie, a difference is demonstrated between intervention and control groups), statistical significance (P < .05) assures that the sample size (n) was adequate. In a “negative” study (ie, no statistically significant difference between groups), it is possible that a real difference between the study groups was missed (a type II error, or β). In these studies, in order to decide if the sample size was large enough to avoid this error, the clinician must examine the methods section of the study for an explanation of how the sample size was determined. The authors should specify their sample size calculation based on the difference in response they want to detect, the estimated success rate in the control group, and the minimum acceptable probability of correctly finding a clinically meaningful difference (1 – β, also known as power and generally set at 80% by convention). The importance of clinically meaningful differences is discussed later in the chapter. Using these assumptions, the authors should have calculated—and should state—the sample size needed to demonstrate a difference.

Additional measures are often useful beyond statistical significance: relative risk, odds ratio, absolute risk reduction, and the number needed to treat (the inverse of absolute risk reduction). Many published studies apply a statistic incorrectly (eg, relative risk is given in a study in which it is not valid to calculate), so it is important that clinicians aspiring to practice evidence-based medicine understand which statistics can be calculated from which types of studies and how to interpret those statistics (Table 2-1).

The relative risk helps clinicians decide the degree to which a new treatment shows benefit (or harm). It is a comparison of the risk of disease in the experimental group (or, in a cohort trial, the exposed children) with the risk in the control group (or the non-exposed children). Consider a fictitious randomized control trial of a new vaccine for the prevention of malaria in sub-Saharan Africa (Table 2-2).

The risk of malaria in the experimental group is 400/1220 = 33%. The risk in the control group is 800/1160 = 69%. The relative risk is thus 33%/69% = 0.48. If the relative risk is less than 1, the new treatment is beneficial; if it is greater than 1, the new treatment causes harm. A relative risk of 1 indicates that the treatment makes no difference. If the example had been a cohort study instead of a randomized control trial, “exposed” and “non-exposed” would be substituted for “treatment group” and “control group”; the relative risk would indicate whether exposure increased the risk of disease.

Relative risk should not be used for case control or cross-sectional (prevalence) studies because it requires knowing the number of new cases (incidence) in each of the two groups. In our example, the children in the malaria study started disease free and were followed to determine how many contracted malaria. In a case-control study, however, the starting point would be a group that already has the disease and another that does not; because children enter the study already having the disease, the rate of new cases cannot be determined. To approximate relative risk in case-control trials, the odds ratio is used. Consider the malaria study done as a case-control study, starting with a group of children with malaria and a matched group that is malaria free (Table 2-3).

The proportion of each group that received the vaccine is measured. We must then convert from probability to odds.

The odds that a child with malaria (a case) received the vaccine is:

The odds that a malaria-free child (a control) received the vaccine are:

The odds ratio is the ratio of the above two numbers:

Note that the relative risk (0.48) and the odds ratio (0.22) are quite different. The odds ratio is a good estimate of the relative risk only when the disease is a rare one. The high prevalence of malaria in the example explains the divergence between the two statistics and is a reminder to interpret odds ratio with caution.

There are instances in which the relative risk can also be misleading. Here, absolute risk reduction and number needed to treat become valuable. Consider the malaria study done in a much lower prevalence population (say, South America) (Table 2-4).

The relative risk is (4/1220)/(8/1160) = 0.48, identical to our African study. The study authors could still make the claim that the vaccine reduces the risk of malaria by 52%. It is clear, however, that the decision about whether to vaccinate is very different for South American doctors than for their African counterparts. The absolute risk reduction and the number needed to treat highlight this difference. The absolute risk reduction is the risk of disease in the control group minus the risk in the treatment group.

In the South American study, the absolute risk reduction is 8/1160 – 4/1220 = 0.69% – 0.33% = 0.36%.

The number needed to treat (NNT) is the reciprocal (inverse) of the absolute risk reduction, which is 1/0.36% = 278. The number needed to treat indicates that 278 children would need to be vaccinated to prevent one case of malaria.

In the African study, the absolute risk reduction is 800/1160 – 400/1160 = 69% – 33% = 36%. The number needed to treat (NNT) is 1/36% = 2.78. While the relative risk is the same, the number of children who would have to be vaccinated to prevent 1 case of malaria is 100-fold higher in South America, so a consideration of risks and costs is very different. Thus, unless the side-effect profile is intolerable, the malaria vaccine makes sense in Africa, but the decision is not as clear in South America. Reliance solely on relative risk would have masked this clinically important distinction.

APPLYING THE EVIDENCE

If we decide the study results are valid, we must decide whether the results are applicable to our patient. Even if the outcome is relevant and statistically significant, it may still not be clinically meaningful. If, for example, a 1-oz weight gain can be demonstrated to be statistically significant in a very large study of infants with reflux treated with thickened formula, the clinician and family must decide whether such a modest gain is meaningful and whether it is worth the costs and risks of the intervention. Also, a valid study may have a patient population that does not match that of your own patients. In such cases, the study may be of little use in your clinical practice.

CARING FOR THE PATIENT

Proceeding through the PARCA steps to determine the quality and applicability of the evidence is not the end of the process. The physician must return to the decision-making philosophy discussed at the beginning of this chapter. The evidence is only as good as the clinical acumen of the physician: In this particular case, how certain is the physician that reflux is the cause of this infant’s poor weight gain? How concerning are the symptoms to the family? What is the family’s preference and willingness to thicken the formula? Current best evidence provides one piece of the ultimate management plan for the patient. Clinical experience and judgment remain essential.

SUGGESTED READINGS

INTRODUCTION

Despite the extraordinary scientific and technological advances in modern medicine, the core skills and sine qua non for the delivery of quality pediatric health care remain those of skillful communication and building and maintaining therapeutic and caring relationships with children, adolescents, and their families. The quality of the relationship with the child and family affects all aspects of patient care—the diagnostic process, treatment decisions, adherence with recommendations, and both patient and physician satisfaction.

Evidence-based studies show a direct association between the physician’s competency with communication and relationship building and healthcare quality and outcomes. Good communication between physicians and their patients improves the physician’s diagnostic acumen and promotes more efficient, accurate, and supportive interviews. Most physicians agree that good communication with their patients is a desirable goal.

In this chapter, we briefly consider the evidence for enhancing physician-patient communication, the concepts of patient-centered and relationship-centered care, interpersonal and communication skills, a framework for enhancing attention to values in healthcare interactions, and several evidence-based models for communication and relational skills. We examine specific strategies and techniques for communicating and building relationships with children and families throughout the pediatric interview. The overlay of children’s understanding of illness and the related developmental stages of childhood are presented.

Why Learn Communication Skills?

In one of the earliest research studies on physician-patient communication, pediatrician Barbara Korsch described communication lapses in the care of children in an emergency department. The central tenet of her groundbreaking paper, that communication is an essential factor in quality of care, is supported by numerous evidence-based studies, including the Institute of Medicine’s 2001 report Crossing the Quality Chasm. Studies show that good communication between physician and patient correlates directly with symptom improvement; better management of chronic conditions; improved efficiency of care, including a significant reduction in diagnostic testing and referrals; increased patient satisfaction and adherence; greater physician satisfaction; and fewer medication errors and malpractice claims. The majority of malpractice claims arise from communication errors.

In pediatrics, effective physician-parent communication is associated with parental satisfaction with care, adherence to treatment recommendations, and enhanced discussion of psychosocial issues. Parents highly value physicians who attend to both their own and their child’s feelings and concerns and who seek to understand their perspective. Greater parent satisfaction with care is positively associated with more active communication between physician and child, adequate attention to parental concerns regarding the child’s illness, and parents’ perceptions of the physicians’ interpersonal sensitivity, partnership building, and ability to provide information.

Kahn and colleagues found that psychosocial issues motivate 65% of primary care pediatric visits, and 85% of mothers with young children indicate they would welcome or not mind being asked about emotional and psychosocial stressors. Studies show that parents are more likely to disclose psychosocial issues when the pediatrician directly questions, shows interest and attention while listening, and shows interest in managing parenting and behavioral concerns.

In 2008, the Committee on Bioethics of the American Academy of Pediatrics published a technical report that reviewed evidence for effective communication in various pediatric situations, provided additional practical suggestions, and, like previous authors, called for greater emphasis on communication with patients and families in pediatric education, practice, and research. Rider, Volkan, and Hafler studied pediatric residents’ attitudes about communication skills and their perceptions of the importance of learning, and confidence in, 15 specific pediatric communication skills. Most residents reported confidence in core communication skills (interviewing, listening, building rapport, and demonstrating caring and empathy), yet half or fewer felt confident about their skills in 7 more advanced communication competencies (ability to discuss end-of-life issues, speaking with children about serious illness, giving bad news, dealing with the “difficult” patient/parent, cultural awareness/sensitivity, understanding psychosocial aspects, and understanding patients’ perspectives).

International guidelines, consensus statements such as the Kalamazoo Consensus Statement, and certification standards reflect the increasing emphasis on interpersonal and communication skills at all levels of medical training. The Liaison Committee on Medical Education (LCME) and the Accreditation Council for Graduate Medical Education (ACGME) in the United States, and accreditation organizations internationally, require medical schools and residency programs to teach and assess interpersonal and communication competencies. Licensing and medical specialty boards also require competency in these areas.

Interpersonal and communication competencies in pediatric education continue to evolve. Rider and Keefer provide further definitions of effective communication with diverse patients and families, understanding and responding to emotions, interprofessional communication and working effectively as a leader or member of healthcare teams, and acting as a consultant to other physicians and healthcare professionals.

Patient-Centered and Relationship-Centered Care

Patient-centered care places a focus on the patient’s disease and illness experience. Each patient is acknowledged as a unique individual, and the patient’s and family’s perspectives, culture, personalities, and related factors are relevant to the process of health care. As noted in the Pew-Fetzer Task Force’s document, Health Professions Education and Relationship-Centered Care, “The phrase ‘relationship-centered care’ captures the importance of the interaction among people as the foundation of any therapeutic or healing activity” (p. 11).

With its focus on how physicians and patients relate to each other, relationship-centered care is a natural next step for conceptualizing health care. Beach and colleagues note that the focus on the patient expands to include ways in which both physician and patient relate together and also includes additional relationships around the patient and doctor.

Relationship-centered care in the clinician-patient relationship includes the following concepts: relationships are the medium of care; relationships are therapeutic; both patients and physicians are active participants; and partnership and respect for patients’ participation in decision-making are valued. In addition, the physician’s capacity for self-awareness and self-reflection is an important component of relationship-centered care and includes an awareness of ideas, feelings, and values that influence the relationship, being “present” for self and others, and paying attention to one’s own behavior. The relationship-centered clinician understands that the way in which they participate in an interaction with patients essentially shapes the course and outcome of care.

Interpersonal and Communication Skills

Medicine has traditionally defined interpersonal and communication skills as a set of specific behaviors or tasks. Dyche, Duffy and colleagues, and Rider describe how interpersonal and communication skills are distinct, even though they are considered components of the same competency for all physicians to master. Communication skills are behavioral and task-oriented (eg, making eye contact, greeting each person in the room). Alone, these behaviors can neither build nor maintain a therapeutic relationship. Rider notes that the ability to form a deeper level of relationship and connection with patients and families goes beyond developing a set of communication behaviors with which to carry out the interview.

Interpersonal skills are relationship and process oriented and include a focus on humanistic qualities and the effects of communication on others. Examples of interpersonal skills include empathy, with an accurate understanding of patients’ and families’ emotions, caring, and emotional responsiveness; and as Rider and Keefer note, the capacity to provide a sustainable relationship that includes authenticity and honesty and allows repair when mistakes are made.

Values as the Foundation of Care

Browning notes that all healthcare interactions between patients and healthcare professionals, and among healthcare teams and colleagues, occur within a broader moral universe of human standards that include personal integrity, professionalism, and the everyday ethics of practice. Attention to core values and skilled communication are vital to the practice of high-quality, safe, compassionate healthcare. Excellent relationships and communication, grounded by attention to values and patient engagement, improve health outcomes, patient safety, and patient and clinician satisfaction. The International Charter for Human Values in Healthcare delineates core values fundamental to all healthcare interactions, and provides a framework of values that is used to inform clinical practice, training, research, and organizational change efforts.

Rider, Kurtz, Slade, and colleagues describe the development of the Charter and the identification of 5 categories of core values—Compassion, Respect for Persons, Commitment to Integrity and Ethical Practice, Commitment to Excellence, and Justice in Healthcare—that are central to every healthcare interaction. Attention to values along with skilled communication not only inform everyday practice, but can help guide and support physicians’ and other clinicians’ approaches to unexpected, difficult situations such as conversations about end-of-life decisions.

The late pediatrician Steven Z. Miller, a long-time advocate of compassionate clinical care, developed with Hilary Schmidt a conceptual framework to encourage the infusion of humanism into every patient encounter and into the medical culture as a whole. Their “habit of humanism” includes the following:

1. Identifying the multiple perspectives in each encounter (ie, that of the patient, family member or other support person, and physician).

2. Reflecting on possible conflicts that could help or hinder forming a relationship with the patient.

3. Choosing to act altruistically (ie, supporting the patient’s perspective above all, even if it conflicts with the physician’s agenda or personal interest).

FRAMEWORKS FOR INTERPERSONAL AND COMMUNICATION SKILLS AND RELATIONSHIP ABILITIES

The pediatric encounter is unique in medicine. Communicating with children and their families is complex, routinely involves the physician-parent-child triad and other family members, and is influenced by the developmental and cognitive stage of the child. The interaction dynamics of physician-parent-child communication are particularly challenging when the child and the parent have different needs.

In addition to covering medical issues, anticipatory guidance, and parent education, the pediatric interview often includes psychosocial and developmental concerns. Increasingly, more children are seen for behavioral, developmental, and psychosocial problems, especially in primary care. The varied needs and perspectives of both children and family members and the complexity of issues require physician flexibility and the ability to adjust interview and physical examination techniques as needed.

A variety of communication models or frameworks exist and can be learned and/or adapted for pediatric care. These frameworks are evidence based and include specific communication competencies associated with improved health outcomes. The conceptual frameworks for interpersonal and communication skills presented here can be used or adapted for clinical practice, teaching, and assessment.

Expanded Definitions of Interpersonal and Communication Skills Competencies

Rider and Keefer used an expert consensus group model with an international group of medical education leaders to further define and expand the original ACGME interpersonal and communication skills competencies. The international expert consensus group’s expanded competencies that address the physician-patient relationship are presented in Table 3-1.

The Four Habits Model

The Four Habits Model, described by Frankel and Stein, organizes communication tasks into 4 interrelated groups of skills and provides techniques for performing these “habits” as well as the benefits of each (Tables 3-2 and 3-3). The Four Habits Model was originally created for use within Kaiser Permanente and was derived from a blend of clinical experience and empirical literature.

Kalamazoo Consensus Statement

The Kalamazoo Consensus Statement, developed by a group of 21 medical education leaders and communication experts from the United States and Canada, identifies 7 evidence-based “essential elements” of effective physician-patient communication and provides tasks for each element. The essential elements are (1) build a relationship, (2) open the discussion, (3) gather information, (4) understand the patient’s perspective, (5) share information, (6) reach agreement, and (7) provide closure. The framework considers building a relationship an ongoing task throughout each encounter (see Table 3-3).

Similarly, the Academic Pediatric Association, with help from 300 pediatric experts, developed guidelines for education in pediatric residencies. These guidelines include core communication skills that were developed, in part, from the Kalamazoo Consensus Statement framework.

COMMUNICATION SKILLS AND RELATIONSHIP STRATEGIES IN THE PEDIATRIC ENCOUNTER

The models for communication and relationship skills presented in the previous section can be used or adapted for clinical practice with children and their families. The combined components of the Four Habits Model and the Kalamazoo Consensus Statement framework are presented in Table 3-3. The components of these frameworks overlap significantly because they stem from the same literature. We can use these frameworks as a guide to examining techniques and strategies for working with children and their family members.

Building Relationships with Children and Families

Building and sustaining relationships and building a therapeutic alliance with children and their family members remain ongoing tasks within all clinical encounters. Components that underlie an effective physician-parent-child relationship include getting to know the patient and parent as individuals, expressing interest in the child as a person, giving attention to the child’s and family’s values, and understanding the way each family member experiences the child’s illness. Other important components of effective relationships include listening skills, nonverbal communication, and understanding the role of play and children’s different developmental stages. As noted by Rider, Kurtz, Slade, and colleagues, awareness of and attention to core values such as compassion, respect, integrity, excellence, and justice remain essential in healthcare interactions.

The Child’s Participation

Children understand more about concepts of health and illness than previously thought and can provide unique and valuable information about themselves. When appropriate, children should be involved in decisions about their own health care. Studies show that direct communication between physician and child contributes to improved relationships, treatment adherence, satisfaction with care, and better health outcomes.

Physicians can collaborate with parents to help children have a voice in medical encounters. Differing communication needs of the child and parents sometimes present a challenge to relationship-centered care in pediatrics. Physicians can facilitate the child’s participation and at the same time address parents’ needs and call on parents’ expertise and knowledge of their child.

Strategies that enhance the child’s participation in the pediatric encounter include addressing the child by name, inviting the child to state the problem, and encouraging the child to participate in the conversation both verbally, by directing questions to the child, and nonverbally, by using eye contact, nodding, and smiling. Physicians should give advice and explain treatment plans to the child in words he or she can understand. Utilizing these and similar strategies allows physicans to model for parents the direct inclusion of the child.

Listening Skills

Effective listening skills facilitate relationships and promote collaboration between physician and patient. Listening inattentively or without mindfulness may lead to suboptimal diagnostic and treatment decisions.

Active listening enables the physician to hear and address the concerns of children and their families. Listening includes being “present” and attending fully. Physicians demonstrate effective listening by reflecting, summarizing, and checking whatever seems unusual in the context of the patient’s story so that the patient can correct or add information that completes the picture. Patients appreciate the physician’s attempts to understand.

Nonverbal Communication

Effective use of nonverbal communication helps to promote an environment of trust and support. Nonverbal communication includes body language as well as tone, pace, and pitch of speaking. To focus the interview on the patient as well as the illness, the physician must demonstrate, nonverbally, that what the patient and parents have to say is important. Use of nonverbal cues such as nodding, pausing, maintaining eye contact, and posture show attentiveness and concern. Congruence between words, tone, and body language is important for effective communication. Strategies for nonverbal communication that promote relationship building are presented in Table 3-4.

Invest in the Beginning

The Four Habits Model identifies 3 tasks to accomplish at the beginning of the interview: create rapport quickly, elicit the patient’s concerns, and plan the visit with the patient. The Kalamazoo Consensus Statement identifies similar tasks in its first 3 essential elements for communication in medical encounters: build a relationship, open the discussion, and gather information (see Table 3-3).

Opening the Interview

Rapport begins from the opening moments of the interview and includes mutual interest and respect among the physician, child, and parents. The pediatric visit often includes a variety of individuals (eg, siblings, 1 or both parents, or other caregivers). Open the interview with an inclusive greeting and introduction, acknowledge everyone in the room, use their names, and find out how they are related to the patient. Greet and welcome the child. Even with infants, the physician can smile and interact with the infant for several seconds. This also gives the physician a moment to assess the child.

Address and acknowledge siblings in the room: “I see your baby brother came today. Does he make lots of noise?” “Sometimes babies do funny things!” Siblings can be disruptive if they feel displaced by a new baby or another sibling, so your early interaction with a patient’s sibling may have an important calming effect on the entire visit. Your role modeling also engages and assists the parents.

Elicit Concerns and Plan the Visit

Important components of investing in the beginning of the interview include planning the visit and setting an agenda with the parents and patient. Dyche and Swiderski’s study showed that physicians who solicited an agenda from their patients and allowed them to complete a statement of concerns were able to report their patients’ problems more accurately, while failure to ask the patients’ agenda correlated with a 24% reduction in physician understanding.

In today’s healthcare environments, the short time allowed for many office visits and time a parent needs to discuss issues may prove incompatible. Prioritizing concerns, both parents’ and physician’s, and being explicit about the time allowed for a visit, conveys respect to the patient and saves time. The physician can invite the child and parent to return for subsequent visits if concerns remain.

The words physicians use are important. For example, a parent will experience the words “I wish we had time to talk about your concerns about your child’s sleep today. Let’s make a follow-up appointment to talk further” differently from the words “I don’t have time to deal with all these problems now.” The following questions may help to plan the visit.

1. Agenda-setting questions: “What is concerning you today?” “Anything else?” “I see you have a list; is there anything else you would like us to talk about today?” “Your child was scheduled for a 10-minute visit. I want to make sure I’ve heard all of your concerns, and then we can decide together what we can accomplish today.”

2. Prioritizing questions: “What is most important for us to address today?” “What is at the top of your list?” The physician may need to take the lead in efficiently negotiating and prioritizing both the physician’s agenda and the parents. “Let’s make sure we discuss A and B; if we don’t get to C, we can talk by phone or set up another visit.”

Understand the Patient’s and Family’s Perspective

Effective communication requires an understanding of the patient in his or her world context. Understanding the patient’s and family’s perspectives includes understanding their individual concerns, beliefs, values, and expectations about diagnosis and treatment, and also depends on the child’s developmental stage. Inherent is respect for the patient’s and family’s cultural and ethnic beliefs.

The Four Habits Model identifies 3 skills to elicit the patient’s perspective: assessing patient attribution, identifying the patient’s requests for care, and exploring the impact of the patient’s symptoms on his or her life and well-being. The Kalamazoo Consensus Statement adds asking about life events, circumstances, and other people that might affect health, and responding explicitly to the patient’s statements about ideas, feelings, and values (see Table 3-3).

Listen to the patient’s or family’s story, identify their major concerns, and ask about their understanding of the causes of illness and possible treatment. “What concerns you the most about your child’s illness?” “What do you think has caused the problem?”

Elicit expectations about illness and treatment. Find out what the patient and family want: “How were you hoping I might help?” Explore the impact of the illness on the patient and family, considering their physical, emotional, and social well-being. How do they experience the child’s illness? Respond explicitly to the patient’s and parents’ expressed thoughts and feelings: “You seem worried about….”

As noted by Rider (2002), even young children reveal clues about their concerns and perspectives through their questions and comments:

Demonstrate Empathy and Compassion

Demonstrating empathy and compassion help the child and family to feel validated and understood. Evidence-based studies support the positive value of empathy in health care and suggest an association between the physician’s caring and empathy and the effectiveness and appropriateness of care. Conveying empathy increases diagnostic accuracy and patient adherence, yet remains time efficient. Empathy also has been shown to increase both patient and physician satisfaction.

Conveying empathy requires the physician to perceive the patient’s emotions and experience and then respond to them in ways that the patient and family feel understood. Much of empathic communication is subtle and subject to cultural differences, particularly in its nonverbal components. Because of this subtlety, empathy may be lost if the physician is preoccupied with the cognitive work of organizing complex data about diagnosis and treatment, and the patient is preoccupied with confusion, worry, or perceived social rules for medical visits. The ability to convey empathy and compassion in countless diverse and complex medical interview situations requires a mindful approach to interactions, listening to feedback, and continuing practice.

The words we use with patients help us to recognize patient clues and to elicit and respond to the patient’s emotions. What we say may promote empathic discussion, or miss it, or actually end it. By exercising basic empathic skills, physicians can attend to connectedness and relationship and remain empathic in spite of obstacles. Possessing a toolbox of strategies to promote empathic communication promotes the physician’s efficiency and enhances satisfaction. Strategies and words to use to convey empathy and to handle emotions are presented in Table 3-5.

Invest in the End of the Visit

Investing in the end of the visit includes sharing information and providing education, partnering with the child and family members, and including them in choices and decisions to the extent they desire. The physician also works with the child and parents to reach agreement on plans and to complete the visit by summarizing, clarifying follow-up plans, and providing closure.

Share Information and Provide Education

Determine the patient’s and family’s understanding of the issues and their desire for additional information: “Is there a particular issue you would like information on now?” “What is your understanding of why your child is receiving this medication?” Consider the child’s developmental and cognitive perspective, and use this knowledge when sharing information. Provide education for both child and parents, including the rationale for diagnostic tests and treatment options, expectations, and resources.

The impact of the physician’s words is often powerful, and patients and worried parents may be easily frightened by careless word choices, especially about prognosis. Share diagnostic and treatment information gently, and use words that are easy for the child and family to understand. Intersperse the telling of information with asking about understanding and impact. Patients value these demonstrations of respect and consideration.

Establish a Partnership with the Child and Family

Tuckett and colleagues describe the clinical encounter as a “meeting between experts.” The patient is an expert in describing his or her problems, experience of disease, and preferences. The physician is an expert in disease identification and management and in sorting the patient’s issues into a format that provides therapeutic direction.

Studies show that involving the patient and parents in making decisions corresponds with improved outcomes. Invite active child and family collaboration throughout the encounter, with attention to involving them in decision making to the extent they wish. Most patients prefer information and discussion, and some prefer mutual or joint decisions. Strategies for partnering with patients include inviting the child and parents to help establish the agenda for the visit, checking for mutual understanding of information about diagnosis and treatment, exploring barriers, and collaborating in negotiation about mutually acceptable diagnostic and treatment plans.

Provide Closure for the Visit

Ask if the patient has additional questions or concerns, summarize what was discussed, and clarify any follow-up plans. Complete the visit by acknowledging the patient and reassuring the patient of ongoing care.

COMMUNICATING WITH CHILDREN AT DIFFERENT DEVELOPMENTAL STAGES

Children’s Concepts of Illness

Children’s understanding of illness and their cognitive, social, and emotional abilities vary by developmental stage. Understanding children’s perspectives at different ages helps the pediatrician to communicate more effectively and accurately. During the pediatric visit, the physician can educate parents about child development and support good parenting. Table 3-6 presents information about children’s cognitive development and their concepts of illness at different developmental stages.

Approaches to Children at Different Stages

Both child and family members have different needs based on the child’s developmental stage. Each developmental stage requires different interviewing, examination, and counseling approaches. Placement of the child in the room, relationship-building strategies, play and interaction techniques, and history taking are important variables to consider (Table 3-7).

Children and Play

The use of play is a particularly effective strategy for communicating with young children. Children use play to gain understanding of themselves and others, to learn about the world, and to explore their abilities to cope with its complexities. As you observe young children at play, you will see family-related themes and action plans for helping and healing and for avoiding fears. Children’s play becomes increasingly complex and varied as they grow older. Creating a playful atmosphere helps the physician to complete necessary tasks and enhances enjoyment for both the child and the physician (Table 3-8).

CONCLUSION

Skillful communication and relationship abilities are essential to the practice of high-quality pediatric care. Effective communication among child, family, and physician consists of a 2-way, relationship-centered process involving flexibility in interaction and relationships rather than simply information exchange.

Numerous studies support the importance of enhancing physician-patient communication and confirm the value of relationship-centered care. Building and sustaining relationships with children and their family members is an ongoing responsibility and is enhanced by the physician’s development of communication and relationship abilities. The physician’s skill in these areas improves with knowledge, reflection, and practice.

ACKNOWLEDGMENTS

Parts of this chapter were adapted from Rider EA. Interpersonal and communication skills. In: Rider EA, Nawotniak RH, eds. A Practical Guide to Teaching and Assessing the ACGME Core Competencies. 2nd ed. Marblehead, MA: HCPro, Inc; 2010:1-137; and from Rider EA. Communication and relationships with children and parents. In: Novack DH, Clark W, Saizow R, Daetwyler C, eds. DocCom: an interactive learning resource for healthcare communication. 2006. Available at: http://webcampus.drexelmed.edu/doccom/user/. Accessed October 10, 2016.

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INTRODUCTION

The medical history represents the single most important opportunity to obtain individualized medical information. Since it is an opportunity and not a guaranteed source of information, the caregiver or patient during the interview may unknowingly miss critical data. Language proficiency, patient and caregiver cognitive abilities, readiness to change behavior, interest in seeking health care, and personal comfort with the practitioner are only a few factors that may influence the ability to obtain vital information. The information in this chapter can enhance the clinician’s ability to obtain patient information and to delve more deeply into patient motivation and understanding than the classically structured patient history. It assumes that it is a caregiver of a patient that is being interviewed, but the principles described apply to interviewing patients when developmentally appropriate.

THE CLASSIC HISTORY

Table 4-1 describes the traditional patient history. The typical history focuses on gathering a variety of specific information in a brief period of time. The very important information recorded in the traditional history is an organized synopsis and a necessary summary of medications, surgeries, and major medical events. The degree of detail present in the various components is highly variable and should be tailored in response to the purpose and duration of the visit. The traditional history provides early valuable insight into factors influencing a patient’s motivation for seeking care.

The challenge of the medical history is to not lose sight of the patient and caregiver’s often unstated goals. A significant hazard of the traditional medical history is losing valuable information that may not present itself if the patient feels the clinician is not listening to them. A clinician may unwittingly prevent a patient or caregiver from expressing concerns and from identifying barriers to care. Often, large parts of the medical history can be obtained from patients and caregivers in the form of surveys or questionnaires completed either independently or with the assistance of trained staff. Additionally, the first two components of the history, the chief complaint and history of the present illness, may be adequately addressed in some of the less directive techniques discussed in this chapter. Questions that necessarily lend themselves to simple answers can be sandwiched between more evocative and collaborative questions. In the context of a busy office visit, a question that elicits a one-word answer is often preferable. For example, a question like “Have you had an appendectomy?” seeks a simple answer and is most efficiently asked in a direct or closed fashion.

WHY IS A COLLABORATIVE ARRANGEMENT BENEFICIAL?

Interviewing techniques represent far more than an information-gathering technique. Talking with caregivers lays the groundwork for later therapeutic intervention. Considering that the health status of adults in the United States is determined by behavior 50% of the time, and that the leading attributable causes of death are dominated by conditions modified by behaviors, such as diet, smoking, and safety, the clinician’s ability to assist productive behaviors for health maintenance are highly desirable.

The hierarchical nature of the doctor–patient relationship is long standing and established in a variety of disciplines. Rogers, in response to a culture of therapist-directed counseling, in the 1940s and 1950s described how therapists may be more effective in helping patients by forming a more collaborative relationship. In the 1970s, Prochaska and DiClemente introduced the transtheoretical model as a construct emphasizing the importance of patient readiness to accept prescribed treatment. They described a linear progression of patient readiness to change from a precontemplative state to contemplative, preparative, action, and ultimately maintenance stages regarding specific behaviors. Miller and Rollnick further posited in the 1980s that physicians, counselors, dietitians, and other clinicians in advice-giving professions may actually be harming their ability to modify patient behavior in a positive fashion.

Motivational interviewing, developed by Miller and Rollnick, provides a useful framework to improve the depth of data collected by the clinician and can provide deeper insight into patient behavior. Motivational interviewing follows the patient centeredness of Rogerian theory, but unlike stricter interpretations of Rogerian practice, motivational interviewing is a directive technique. Clinicians may have identified harmful behaviors, but they hypothesized that consistent and repeated advice giving may actually promote patients to continue detrimental behaviors. Current research by Resnicow goes further in describing the role of the clinician as that of a facilitator who helps set the stage for behavior change. The clinician can increase the likelihood of behavior change by various actions and statements, but ultimate responsibility lies with patient and caregiver. Motivational interviewing suggests that the path to behavior adoption is not linear, as proposed by Prochaska and DiClemente, but rather is chaotic, progresses forward and back in readiness, and is fraught with expected relapses, failures, and false starts.

USING MOTIVATIONAL INTERVIEWING

In a collaborative environment, health counseling involves a partnership that honors patient and caregiver expertise and perspectives. The atmosphere is conducive rather than coercive. Miller and Rollnick describe the four processes of motivational interviewing: engagement, guiding (or focus), evocation, and planning. When talking with patients, engagement refers to taking time to establish a relationship between clinician and patient. Guiding refers to setting a shared goal that is set by the patient but can be endorsed and supported by the clinician. Evocation is the development of motivation for changing behavior by activating the patient’s internal values and priorities. Only after establishing a respectful relationship, creating a shared focus for action, and evoking internal motivation, should the clinician start the planning phase. Even at that point, the plan devised should mostly come from the patient.

These processes are used to resolve the central dilemma of behavior change—ambivalence—a natural response to proposed change and the patient’s thoughtful consideration and balancing of changing versus sustaining current behavior. Tools for resolving ambivalence include increased use of open-ended questions, affirmations, reflections, summarizations, readiness rulers, and a technique known as elicit-provide-elicit. Examples of these tools are given in Table 4-2.

Open-ended questions are questions that do not allow one-word, simple, or yes/no answers. Furthermore, they are not leading or suggestive on the part of the clinician. When discussing behavior, experts recommend 4 open-ended questions to every 1 closed-ended question. Open-ended questions are structured to require an engagement with the clinician. They encourage caregivers to discuss their thoughts and to reflect on their own impression. They also indicate the clinician’s desire to know more about the caregivers’ experiences.

Affirmations are often simple acknowledgments of the caregiver’s struggles. Clinicians may enhance the collaborative environment by acknowledging the caregiver’s struggles without judging. Focusing on positive progress or simply seeking assistance can augment confidence, leading to an improved therapeutic relationship and a greater willingness to discuss sensitive topics. Therefore, affirmations are a critical piece of the engagement process of motivational interviewing.

The central skill in motivational interviewing is the ability to make reflections, which may reflect the content of what was just said, the underlying feelings the caregiver is expressing, or the conjectured meaning of the patient’s statement. Clinicians may be reluctant to attempt reflecting the meaning or feeling of a statement for fear of conjecturing incorrectly. Motivational interviewing encourages this attempt knowing that it will result either in affirmation that the clinician understands the caregiver or an opportunity for the caregiver to clarify the feeling or meaning. Reflections should be phrased in such a way as not to imply a desired answer. Skilled motivational interviewing clinicians do not exhibit an “upward” concluding tone to declarative statements that will often elicit a confirmatory “yes” response. The desired intonation is a “downward” declarative tone that stimulates a conversational response. As clinicians become more skilled with reflections, they become comfortable with action reflections. Rather than advice giving, action reflections are statements made by the clinician that restate a patient’s stated plan to change behavior. Another complex form of reflection is reframing. In reframing, a negative statement can be reworked by the clinician into a statement for change. For example, a statement like “I smoke because I don’t want my husband to be alone or ostracized” could be reframed into “It is important for you to spend quality time with him.” Motivational interviewing also acknowledges that periods of silence sometimes follow in the normal course of conversation. Not “filling the vacuum” will often lead to the stating of important information or insights.

Summarizations are commonly used by clinicians and caregivers in collaborative relationships. They are effective as a tool to affirm the clinician’s understanding and to clarify agreed-upon goals. Summarization provides an opportunity to formulate a collaborative care plan and incorporate other patient-tracking tools. In these ways, summarization can help keep a clinician-caregiver-patient interaction moving in a positive direction.

Readiness rulers or scales can help clinicians to assess the importance a caregiver attributes to a particular behavior and to assess a caregiver’s confidence in his or her ability to carry out that behavior. Caregivers may be asked to rate a behavior on a scale of 1 (low importance or confidence) to 10 (high importance or confidence). The clinician can then help the caregiver identify strengths that will help carry out a behavior by asking why the score was not lower and can identify barriers by asking why the score was not higher.

Elicit-provide-elicit is a summative strategy guiding a clinician through a motivational interviewing–based sequence that seeks the caregiver’s thoughts (elicit), allows the exchange of information (provide), and follows the exchange with a further exposition of the caregiver’s thoughts (elicit). Central to elicit-provide-elicit are safeguards to avoid returning to unsolicited advice giving. Knowledge is often not the central deficit when detrimental behaviors are being followed. In the interest of providing a collaborative environment that respects the caregiver’s autonomy, permission must be granted by the caregiver before the clinician supplies factual knowledge or expert opinion. Bracketing this specific information with reflections and open-ended questions promotes evocation powered by the caregiver’s inherent values, perceptions, and goals.

In motivational interviewing, patient responses can be characterized as either change talk or sustain talk. Change talk is language the patient uses to suggest a change in behavior is desired. On the other hand, sustain talk is language that the patient uses to defend current behavior or the status quo. The role of the clinician is to identify and accentuate change talk to help patients effectively argue for positive behavior. The clinician’s role is similarly to identify sustain talk and, without being dismissive of it, avoid emphasizing it, but help patients identify and overcome barriers they describe.

THE CHALLENGE OF AGE

A particularly vexing problem in pediatrics is deciding when a behavior is in the domain of an adult caregiver and when that behavior is in the domain of the pediatric patient. The preverbal 1-year-old is clearly primarily influenced by the decisions of his caregiver. Conversely, the 18-year-old adolescent is making the transition to adulthood and is often not heavily influenced by parents on daily decisions. No comprehensive studies have been performed to definitively say when these collaborative techniques should be transitioned from caregiver to patient in pediatric settings. Clinicians should consider patient cognition, family dynamics, school situation, and age in making this transition. For most children reaching typical developmental milestones, 8 years of age generally represents a transition point from primary parental control to patient decision making. Clinicians are well-served by engaging both parties from 6 years of age on.

GOING FORWARD

Collaborative interviewing techniques such as motivational interviewing show great promise and are currently incorporated into a variety of clinical settings. Motivational interviewing has been identified as a preferred method for clinicians to discuss behavior change with their patients in a variety of clinical recommendations. A growing body of evidence has reinforced the efficacy of motivational interviewing in brief clinical encounters. As such, motivational interviewing can be viewed as the “why” of behavior change. Other strategies based on cognitive behavioral theory, behavioral economics, and self-management can be valuable adjuncts to motivational interviewing. Motivational interviewing has been said to answer the question “Why should I change?” These other strategies can answer the questions “What should I change” and “How can I do it? Clinicians interested in these techniques are encouraged to participate in ongoing evaluation of training validity and fidelity and to evaluate for clinical effectiveness. Further information on these techniques and training opportunities are available at http://www.motivationalinterviewing.org.

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INTRODUCTION

In pediatrics, it is the child—not the parent—who is the patient, and the pediatrician’s professional, ethical, and legal obligations are owed to the child. While parents in our society have been given wide latitude to raise children as they see fit, there are matters with respect to which the state can appropriately intervene: Parents may spank their children, but child abuse is not permitted. Parents may choose a variety of educational settings and resources for their children, but the state does demand that children achieve some level of literacy. Pediatricians, therefore, care for children and work with their parents in a social context that requires their intervention in ways that may range from working with parents to make decisions of great medical complexity (see Chapter 123) to notifying the state of suspected neglect or abuse (see Chapter 36).

This chapter focuses on three areas in which the law, ethics, and clinical judgment intertwine: (1) Who makes decisions when it comes to caring for children and adolescents? (2) Who is able to refuse treatment—the child and/or the parent for the child? (3) When is confidentiality an issue for an older child or adolescent?

CONSENT TO TREATMENT: WHO DECIDES?

Informed consent is a legal notion of relatively recent vintage. At its core, it requires physicians to provide truthful, relevant information to patients/surrogates in the process of obtaining their consent to treatment. Although the concept began to appear in legal opinions in the late 19th and early 20th centuries, it wasn’t until the 1950s that courts undertook in earnest the hard work of delineating its contours and requirements. The applicability of informed-consent principles to pediatric decision-making was confirmed by the American Academy of Pediatrics (AAP) in its 1976 statement on the subject and has since been reaffirmed by the AAP in statements published in 1995 and 2016.

At the same time that informed consent was being worked out in the courts, the moral and legal status of children was undergoing a vast upheaval. Before the 20th century, children (until recently, all those under 21 years, and now almost universally those under 18) were considered a form of chattel with no recognizable legal rights. Since that time, courts have increasingly recognized that children and adolescents have rights separate from those of their parents. While parents, of course, have the right (and duty) to make decisions about their children’s health care, the “children’s rights” movement over the last 50 years has recognized the rights of adolescents to participate in making decisions about their health care, just as they do in a variety of other socio-legal contexts. However, minors do not have the legal authority to consent to medical treatment (subject to certain exceptions discussed below). Assent is the legal and ethical term that connotes the minor patient’s right to participate in the decision-making process. The combination of parental decision-making authority, the traditional role of the pediatrician, and the somewhat uncertain scope of patient assent predictably sets the stage for multiple layers of conflicts among the decision-makers.

Parents may vary greatly in their subjective values, tolerance for prognostic uncertainty, and many other factors that typically influence medical decision-making for children. This variance requires that pediatricians bring a comparable degree of sensitivity to treatment decisions subject to a broad array of parental expectations and perspectives. In addition, the United States has become a nation of diverse cultures; thus, sensitivity toward and understanding of child-raising practices from other parts of the world are increasingly important. While some practices may seem abusive in the context of American cultural values, it is important to realize that the intent behind the practices is almost always benevolent and not abusive. In addition, the decision-making process itself can vary across cultures, which in turn may determine who speaks for the patient, who within the family is entitled to receive information about the patient’s diagnosis and prognosis, and the identity of the ultimate decision-maker. When societal, cultural, familial, and personal values clash, sometimes explanations and education, not legal interventions, may help to resolve disagreements.

The ethical concept of respect for persons does not have a minimum age. While demonstrating respect for a 16-year-old will be quite different from demonstrating respect for a 6-year-old, which is different from the respect due an infant, the principle is the same at any age. Both informed consent and the right to assent reflect this bedrock principle.

Elements of informed consent to medical treatment include a description of the proposed procedure, the risks and the benefits of the proposed therapy, and what alternatives are available. In many cases, an alternative is to do nothing, and, if applicable, the consequences of doing nothing should be explained to the parents and, as appropriate, to the patient. Whether a particular risk must be disclosed, as well as the degree of detail that must be disclosed, varies from state to state. A majority of states rely on a professional or objective standard to address these questions (ie, what a reasonable practitioner would disclose to a patient under similar circumstances). A substantial minority, however, employ a subjective or patient-oriented standard to determine what risks must be disclosed and to what degree of detail.

The doctrine of assent requires a similar level of transparency and truthfulness. The process of obtaining a patient’s assent is based on respect for the patient—and for the patient’s autonomy—even if the law does not allow the minor patient under most circumstances to consent to treatment. Beginning as early as a patient is capable of understanding what she is being told, the process of assent involves the patient in discussions about her medical condition and treatment choices. Disclosures to minors need to be age-appropriate and calibrated to the patient’s developmental stage. It is somewhat risky to generalize based solely upon the patient’s chronological age. Because children mature at different rates, their ability at the same chronological age to process information may differ, as well. One rule of thumb is to be guided by the patient’s own questions, on the assumption that patients—including minors—typically do not ask questions unless and until they are developmentally capable of processing the answers.

The physician–patient interaction described above reflects the notion that informed consent is a process, not simply a piece of paper to be signed by the patient’s surrogate decision-maker. Understood in this light, both informed consent and assent bring patients and parents into a relationship with their physician over time that promotes understanding, trust, and cooperation, as well as an understanding of the patient as an autonomous being entitled to respect in her own right.

Young Children

Parents are almost always asked to consent to treatment of a small child except in case of an emergency when parental consent cannot immediately be obtained. As a general rule, if parents or guardians cannot be found in a timely manner, consent to treatment of an emergency medical condition will be presumed. Emergencies are broadly construed by courts and include situations in which a child is in pain, not just cases of life-threatening illness or injury. For example, if a child in day care falls and cuts her head and is brought to the emergency department by a teacher, if the parents are not immediately available, the child’s cut will be sutured on the basis of presumed consent. On the other hand, if a child has a nonemergent medical condition that allows for discussion of treatment options without the need for speed, the child should not be treated without discussion with and permission from his parents.

Even when children are too young to be able to assent to medical care, it is respectful to them and is likely to increase their cooperation if the procedure is explained to them and they are allowed to make some choices, even if it is what color Band-Aid they get after their immunization. To the extent the child seems to understand, explaining what is wrong with him or her, why the problem needs to be treated, and what the options are is respectful of the child’s personhood and is likely to produce increased understanding and thus cooperation.

The Adolescent Patient

Early in the 1960s, there was an epidemic of sexually transmitted infections among teenagers. Because they did not want their parents to find out that they had been sexually active, they forewent treatment rather than ask for parental consent to therapy, thus spreading the infections. State legislatures enacted statutes allowing minors of any age to receive treatment for sexually transmitted infections without parental involvement, and in subsequent years, almost all state legislatures extended the same exemption from parental knowledge to treatment for alcohol or drug problems. In many states, statutes specifically provide that parents may not be billed for these services without the consent of the patient, since the parents would discover the problem from the bill they received. Because this is a topic governed almost entirely by state law, and states may vary in their approach to disclosures to parents, pediatricians should be familiar with the laws of the state in which they practice.

As the concept of minors’ rights began to expand in the second half of the 20th century, some state legislatures recognized the right of minors of a given age (ranging from 14 to 17) or status (high-school graduate) to consent to some or all medical or surgical treatments without parental involvement. Even in those states without consent statutes, some courts began to carve out what is known as the mature minor doctrine. If the patient is over 13 (or 14 in some recent cases) and the physician feels that she understands the reasons for the recommended therapy and what its risks and benefits are, she is a mature minor capable of giving legal consent to medical treatment. At present, 14 states permit mature minors to consent to some or all medical and surgical treatments. Three states recognize the same right regardless of the minor’s age or maturity, and 34 states have no legal rule on the subject. Thus, in a considerable majority of jurisdictions, the general rule requiring the consent of a lawful surrogate decision-maker applies.

Mature-minor rules may be subject to exceptions requiring parental consent to specific interventions (eg, all surgeries) or procedures. An example of the latter is abortion. Currently, 3 states and the District of Columbia permit minors to consent to abortion services, while 39 states require either the consent or the notification of at least one parent or both notification and consent. Federal courts have generally upheld notification/consent statutes as long as the laws also provided for a meaningful judicial bypass process for minors who could demonstrate sufficient maturity, in cases of a medical emergency, or when there is evidence of abuse or neglect.

Emancipated minors have the legal authority to make their own decisions about all aspects of their lives, not just about medical care. State laws vary, but emancipated minors typically include those who are married, those who are in the military, and, in most states, those who are self-supporting and living away from their families. In some states, parents and a child of 16 or older may go to court and ask for a declaration of emancipation, meaning that the parents have no further responsibility, financial or otherwise, for their child. College students living away from home are almost always considered emancipated, even if their parents are paying their college expenses. Many of the medical interventions needed by runaways will fall under one of the exceptions discussed above, and some runaways may be able to establish their independent living (including finances).

Most states authorize minors to consent to medical treatment for their own children even when the teenaged parent does not meet the requirements for mature-minor status or emancipation. Depending upon the applicable statutory language, the right to make medical decisions may extend to prenatal treatment decisions. The state laws tend not to be clear as to whether treatment decisions during pregnancy include decisions about the pregnant minor’s own medical treatments. In cases of doubt, legal counsel may be helpful.

Insistence on Unorthodox “Therapy” or Treatments the Physician Thinks Are Wrong

Almost always, children and their parents agree with the pediatrician on the need for medical care, the physician finds their choices of therapy reasonable, and treatment proceeds. However, this is not always the case. What is the physician’s ethical responsibility when an adolescent, parents, or both ask the pediatrician to provide a treatment that the physician thinks is either unwise or wrong?

Suppose, for example, a 14-year-old with cancer and his parents insist that the physician treat his disease with an alternative therapy such as laetrile. The assessment of the situation should include the following considerations:

1. Is the alternative dangerous? Can the physician even determine whether it might be harmful? If a parent presents a bottle of laetrile and demands that it be given to his child with cancer, the physician has no way of knowing what contaminants may be in the liquid, aside from the potential danger of the laetrile itself.

2. If the alternative is not dangerous and the parents and the patient are willing to accept conventional therapy as long as the alternative is added, the physician might reasonably decide to go along with their request, although she is perfectly within her legal and ethical rights to decline.

3. If the parents insist on the alternative as the only method of therapy and the alternative would not be dangerous, the child’s condition should be the first decision point. If the child is likely to recover or at least gain a long-term remission with conventional therapy, there is always the option of obtaining a court order to treat the patient.

4. If the child is dying and conventional therapy may prolong the process but will not affect the outcome, the alternative is not harmful, and the parents are desperate in their beliefs that it may help, the physician has to make a very difficult judgment call. To refuse their request and thus close the door between physician and parents, however, means that as the child is dying, she or he may have no access to the physician because the parents are too angry to call for help. (For further discussion of this topic, see Chapter 128.)

Where there is serious disagreement between the adolescent and his parents, the pediatrician must be sure that the decision is made in the best interests of the patient, not the best interests of the parents. Suppose, for example, a 16-year-old Jehovah’s Witness accepts a needed blood transfusion to which his parents object. Of course, the patient would be transfused (pursuant to a court order, if time permits), but in the process, the medical team should consider the effects of this conflict on the family unit and attempt to provide support as necessary. For example, the parents might consider refusing to let the “sinful” child come home after discharge from the hospital. How can the physician help the family unit recover?

REFUSAL OF TREATMENT: WHO DECIDES?

If a minor (of any age) has an illness or injury for which medical care can produce a cure or at least a recovery with minimal disability, courts will almost always override the parents’ refusal. For example, if a child is hit by a car and requires surgery, but the parents refuse to allow a necessary blood transfusion because their religion does not permit it, most courts will order the transfusion to be given. In practical terms, however, a court order may also require that physical custody of the child must be secured during the treatment period. A blood transfusion during surgery is one thing, but court-ordered chemotherapy, occurring over months, might require placing the child in foster care so his parents will not respond to the order by taking him out of the country. That trauma to the parent–child relationship must be factored into the initial decision to go to court, and the physicians must be quite sure that the intervention is reasonably predicted to succeed. (Parental refusal of treatment when the child’s prognosis is not good is discussed in Chapter 128.)

Adolescents may object to treatment their parents wish them to have. Short of physical restraint during the treatment, it is often best to negotiate a course acceptable to the adolescent patient if at all possible. A simple refusal may not be the real agenda, and the physician should make efforts to find out what the real problem is. A teenager who is responding well to chemotherapy and suddenly refuses to continue may want to go to her prom with hair—and helping her find and pay for a wig may resolve the treatment issue. The younger child’s or adolescent’s feelings of helplessness in the face of serious medical problems should be understood and taken very seriously. Dealing honestly with those feelings may lessen the possibility of outright refusal.

Adolescents in most circumstances may refuse any treatment to which they can consent. If the proposed therapy is elective, the patient may certainly refuse. Decisions about life-sustaining therapies are more controversial. As explained by the American Academy of Pediatrics in a 2016 report, “Many bioethicists support limiting a child’s or adolescent’s short-term autonomy by overriding a treatment refusal to preserve long-term autonomous choice and an open future.” The AAP report concludes that, in general, adolescents should not be allowed to refuse life-saving therapy even if the patient’s parents agree.

CONFIDENTIALITY

Disclosures to Parents

Pediatricians who have long-time relationships with their patients—perhaps from hospital nursery to college entrance—must make decisions about the age and stage of maturity at which patients may legitimately demand that information be received in confidence and, in particular, not be disclosed to the patient’s parents. A promise of confidentiality from the physician to an adolescent patient may be the only way to obtain honest information necessary to make a correct diagnosis. In general, if a minor is legally capable of consent or refusal of treatment, that treatment may be given in confidence. State laws largely dominate this subject and, of course, vary from highly protective of confidentiality to not protective at all.

Younger children probably do not understand, much less expect, confidentiality. In most cases, younger children assume that their parents know everything about them, and in the context of medical care, the parent is usually present.

Many pediatricians have developed an explicit policy in their practices about confidentiality, when it will be maintained and when parents will be notified, and patients and their parents are informed of this at an appropriate age or when an adolescent is accepted as a new patient. If the parents are not willing for their child’s confidences to be respected by a physician, this conversation in advance of any conflict would put them on notice to seek another source of regular medical care. The patient also should understand that, while there is a general adherence to confidentiality at his age, there are times—for example, when the teenager might be dangerous to himself or others—when the parents’ need to know will override the adolescent’s desire for confidentiality. To promise, either explicitly or implicitly, that a conversation will be confidential and then to inform the parent without the adolescent’s knowledge is a clear violation of the ethical principles underlying the physician–patient relationship. It is also likely to cause mistrust of all physicians for years to come. In some families, as well, disclosure of information the adolescent wanted for good reasons to be kept confidential may lead to abuse, rejection, or having the parent expel the child from the home.

Disclosures to State Agencies

In some cases, such as child abuse or neglect, reports to state agencies are required. The ages for reporting vary among the states, but most age out of the requirement by 16, if not earlier. In determining abuse stemming from sexual activity among adolescents, the context determines whether abuse has occurred. If a 15-year-old girl is having a sexual relationship with her 16-year-old boyfriend and the physician becomes involved when she asks for contraceptives, confidentiality is almost certainly required. If, however, the girl is 11, clearly abuse should be presumed. If the 15-year-old is having a sexual relationship with her mother’s 38-year-old boyfriend, this is almost certainly statutory rape as well as child abuse under the criminal laws in most states. In that instance, of course, the mother will be informed of the situation by the police if not by the pediatrician.

Infectious diseases, particularly sexually transmitted diseases, are also reportable to the state public health authorities or to designated local health authorities, even though the adolescent patient has the right of confidentiality with regard to his or her parents.

Disclosures to Schools

Reports to schools may very well not be confidential. Even if the report is made to a school nurse, in some schools, principals take the position that they have the right to all information, including medical information and family information, about all the students in the school. Once the information leaves the control of the school nurse, there is nothing to prevent its dissemination to the faculty. Parents and physicians should understand that informing a school nurse about a child’s medical condition is by no means the same thing as sharing the same medical information with other physicians or clinics. In the early days of human immunodeficiency virus (HIV), this lack of privacy, coupled with demonstrated invasions of the children’s and their families’ privacy and unfair treatment and abuse in schools, caused many pediatricians to refuse to notify a school that a patient was HIV positive. Those caring for these children instead hoped that teachers understood that universal precautions were necessary in dealing with all the children.

In all circumstances, parents and adolescents should be told exactly what information is being sent to the school, and in most cases, they have the right to decline to allow the disclosure.

ACKNOWLEDGMENT

We appreciate the contributions of the author of this chapter in the 22nd edition, Angela Roddey Holder, LLB, LLM (1938–2009).

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