Introduction

(1)

Department of Child Health, University of Missouri, Columbia, MO, USA

Chapter Outline

Some essential concepts

Caring and rapport

The concept of functionality

Who is the pediatric patient?

Integration of biomedical and psychosocial management

Basic values of clinical practice

Disease, illness, and the role of the physician

The doctor–patient relationship: three models and their uses

Assessing pain behavior

The effects of a child’s illness on parenting

The form and content of consultations

The constituents of illness: a guide to diagnosis and management

Why somatizing patients may be difficult to manage

The gap between pediatrics and psychiatry

Relevant attitudes, skills, goals, and responsibilities

Dealing with the emotional strain

Caring and Rapport

A doctor’s caring attitude fosters rapport and trust which, together with the clinician’s skill in listening and communicating, makes the doctor–patient encounter powerful as a diagnostic and therapeutic agency [1, 2]. When a patient senses that the physician genuinely cares, disclosure is more open, allowing the clinician a fuller appreciation of the patient’s difficulty and discovery of previously unapparent therapeutic opportunities. When a patient senses that the physician cares, advice and prescriptions are received more willingly because the patient is more likely to feel that the management offered has been carefully considered and individualized.

I have asked groups of medical students and residents what they thought the characteristics of a good doctor were, based on their own experiences as patients and caregivers. Their answers included important attributes such as willingness to work hard, conscientiousness, attention to details, evidence-based practice, cleanliness, consideration of the patient as a human being, etc. No one mentioned “caring.” That characteristic did not to come to mind or perhaps, “its existence goes without saying.”

Because caring is so important in managing illness and because this is a book about managing illness, the phenomenon of caring is worthy of some discussion.

Definition

Caring is different from caregiving. Caregiving is a cognitive process having to do with the technical aspects of medical practice conceived as applied biology. It is what is talked about on rounds, in conferences, and during continuing medical education. Its procedures are codified numerically for billing purposes.

By contrast, caring is an emotional process having more to do with the psychology of what motivates us to do clinical work [3].

What makes us worry about our patients, get up out of bed for patients, and do things for patients for which we may never get paid or thanked? Of course, there are professional imperatives and medical–legal obligations that compel our response to a call for help. We answer the call even at moments we may not feel very caring or may even feel resentful. Nevertheless, given the ability to earn a comfortable living, the two most important incentives for clinicians to work are the inner-satisfaction of knowing that one has genuinely improved another’s well-being and their expressions of gratitude [4, 5].

Caring for a patient is a bit like loving someone. In both cases, whether it is the person we love or the patient we care for, the well-being of the other person is felt to be overridingly important. It is that feeling of overriding importance that indicates genuine caring. Physicians’ “bedside manners” are empty exertions in the absence of genuine caring.

What are the origins of caring? One theory proposes that the ability to care about others is derived from the emotional attachment that normally develops between mother and child [6]. Attachment is an active, intense, enduring emotional relationship that is specific to two people [7]. It develops as the result of two processes: (1) dyadic interaction, i.e., the special, mutually regulatory interaction between mother and infant; (2) the repeated linkage of pleasure and relief of distress within the dyadic relationship that is protective and nurturing. If we have been fortunate enough to have experienced the incomparable satisfaction of being loved and cared for, and have experienced the anxiety of being separated from that source of happiness, then we are unforgettably impressed with the goodness of being cared about. So when we encounter another person whose well-being is threatened, and we empathetically sense that person’s distress and, at the same time, know we have the ability to relieve it, then we are instinctively motivated to go to that person’s aid.

Therefore, how much or how little we are able care for another—how well or poorly we relate to others in later life—is strongly influenced by the success or failure of our primary attachment relationships in early childhood. John Bowlby [8] found that attitudes about one’s worthiness to receive care and the trustworthiness of others who might provide care are derived from one’s experience with care received during childhood. It has been shown, with respect to the management of diabetes, that the efficacy of clinical care is related to the attachment styles of the physician and patient who engage in the clinical relationship [9, 10].

The best control, as indicated by glycosylated hemoglobin levels, was achieved when both clinician and patient had secure attachment styles.

A characteristic of caring clinicians is their inclination to not give up when confronted with a diagnostic or management problem that seems insoluble. By contrast, a less caring clinician may be inclined to dismiss problems for which they have no ready solutions. Doing so, however, is a disservice to the patient and to oneself. The least we can do for a patient whose illness seems hopeless is to not desert her, but to stand by her as we continue to search for insight and discovery of what might help.

The disservice to oneself is the missed opportunity for the kind of experience that creates clinical acumen. Acumen develops during the course of practice by “sticking, not quitting” so that, as time passes, the clinician becomes adversity-scarred, but more learned and skillful in struggling against illnesses that frustrate less experienced colleagues. The quality of one’s experience depends upon the degree of caring that the physician applies to the patient. Caring energizes and focuses the clinician’s drive to heal and learn. Non-caring weakens the clinical effort (and may contribute to physician “burn-out”).

The Concept of Functionality

The following case vignette is a fictional compilation of typical historical features presented by parents of children with refractory abdominal pain complaints and prolonged school absence. It demonstrates the usefulness of the concept of functionality in somatizing children and their parents. Children who somatize focus on bodily complaints to unconsciously avoid recognition of anxiety, and gain relief by securing the comforting presence of mother and the mothering environment. It exemplifies how recognition of functionality can help in clinical management.

A bright 9-year-old girl was brought for evaluation for recurrent abdominal pain that had caused her to miss 3 weeks of school. Her symptoms became disabling sometime after the onset of her mother’s symptoms of anxious depression, for which treatment was not sought. The child also developed worries about her parents’ safety when they traveled. She began to insist on sleeping on the couch near her parents’ bedroom rather than in her own room. At the time of the consultation, the mother stated that she was sure there was an organic cause for her daughter’s abdominal pain. Moreover, she was certain that the pains were severe because the child’s stoic behavior in the past, after an accidental fracture of her forearm, meant that she had a high pain threshold (“…so when she actually complains, I know she’s really hurting!”). The mother said she was told by previous physicians that none of the many diagnostic procedures performed on her child had found anything wrong and that there might be an emotional cause for the complaints. The mother said she didn’t have much faith in psychologists and did not accept previous doctors’ diagnoses or recommendations. To do so would have made her feel as though she were abandoning her role as protector of her child’s health and concurring with the insulting implication that her daughter was faking illness.
In fact, this child had a real illness. It did not involve disease, but it had three identifiable elements: (1) a functional disorder, recurrent abdominal pain syndrome, a manifestation of Irritable Bowel Syndrome [11] that is especially prevalent in girls her age [12]; (2) a psychological problem, namely, separation anxiety [13]; and (3) somatizing, i.e., the conscious or unconscious use of bodily symptoms to avoid recognition of her anxiety and remain in the comforting presence of her concerned mother and at home in the mothering environment [14, 15].
The diagnosis offered to the mother was the Recurrent Abdominal Pain Syndrome, a safe symptom disorder with an excellent prognosis for spontaneous subsidence [16]. The clinician described the child’s condition, including its high prevalence in healthy school children [12], and explained that the symptoms are due to heightened activation of healthy sensory and motor nerves in the gastrointestinal tract. Like a runner’s leg cramp or a swimmer shiver after a cold dip, functional symptoms are characteristic of how the healthy body functions. Although the child’s pains could be severe at times, they neither resulted from nor caused disease.
The functional nature of her child’s pains explained why diagnostic test for diseases had been unrevealing. Skillful communication, speaking to the worries and concerns elicited from the mother during the history, permitted avoidance of the “physical-versus-emotional” controversy. She was relieved to learn that her daughter’s pains, although sometimes severe, were not dangerous. She abandoned her insistence on more diagnostic tests. She no longer felt that her daughter’s symptoms were not being taken seriously. Making use of their rapport, the physician then reflected, in a nonjudgmental, concerned manner, on all of the emotional stress they had recently suffered as a family and how any normal child might have reacted to it with anxiety.
At that point, the mother was ready to hear the doctor’s thoughts about emotional issues. She was also ready to shift her concerns away from the hidden malignancy she feared was causing her child’s pains, toward the developmental damage accruing due to missed school. Once reassured, she became ready to place an expectation on her child to return to school, even though she still had some pain. “Everyone goes to work or school on days they don’t feel 100 %, and she must, too—even if it’s a struggle sometimes.” The physician formed an alliance with the child, the parents, the school nurse, and the principal to get her back into school [17].

In this hypothetical case, the concept of functionality was used to avoid adversarial interaction caused by the parent’s unwillingness to accept any answer other than a purely organic diagnosis. The physician recognized the child’s anxiety and its possible causes. The use of the concept of functionality allowed him to avoid having to make the choice between: (a) ordering more diagnostic tests (against his better judgment) in order to preserve, at least for the moment, the doctor–patient relationship; and (b) stating what was unacceptable to the mother, thereby causing the rupture of the relationship and any opportunities to help.

Acceptance of the non-dangerous nature of a child’s abdominal symptoms and the unwavering support of the accessible physician enabled the mother to place an expectation upon her daughter to do what she had to do, namely, return to school. This is a stressful juncture during which the mother is made to feel heartless by her child’s mounting displays of suffering. On the other hand, she recognized that her child’s use of what may even be genuine abdominal pains was leading to a state of abnormal dependency and invalidism.

When a child becomes overly dependent on the uncritical acceptance and nearness of the parent, and the parent is unable to bear the guilt created by her child’s accusatory protestations, the parent–child relationship becomes inimical to the normal development of both. The clinician who succeeds in managing the functional disorder complicated by anxiety-induced somatizing, and helps remove “the need to be sick,” has achieved a triumph of clinical management.

Who Is the Pediatric Patient?

Normally, parent and child are emotionally attached to each other. The attachment bond [18] begins in the neonatal period. Its existence is evidenced by the anxiety caused when the bond is threatened and the grief that results when a person who shares the bond is lost [7, 8]. The attachment of parent and child means that when one does well or poorly, so does the other [19].

Therefore, the pediatric patient is not just the child, but the “parent-hyphen-child.” A visit to the doctor’s office may result in pain and encounters with strangers. The child can respond to this stress by successfully coping, being courageous, thereby mastering the experience, with the result that his self-esteem is enhanced and his ability to be courageous is strengthened. Or the stress can overwhelm the child’s ability to “be brave,” causing him to regress into a tearful, panicky state with the result that his self-esteem is lowered, fearfulness or future doctor visits is increased and his ability to “be brave” withers.

Helping a child master the experience of the clinical encounter is worthy of our efforts and requires clinical finesse. Measures can be taken towards that end: establishing rapport, not only with the parent but also with the individual child; and protecting the child from adult-level concerns that are more than he can accommodate and likely to be unnecessarily upsetting.

Rapport can be established by turning one’s attention to the child, after the initial greeting to the parents, and, in a caring, calming manner, explaining who he is and what he does (e.g., “I am stomach doctor for kids and young people”) and describing what will occur during the consultative visit. If the child is old enough, ask him why his parents brought him and what he thinks about it. If it is highly likely that painful or invasive procedures are not in the offing, the child will be helped by being told so.

Rapport with the child is built the same way it is with his parents: by showing respect, genuineness (no “baby talk” or untruths), and using one’s empathy [20]. Empathy is especially important during the physical examination; explain what is about to happen and involve the child as a participant, rather than causing him to feel like a victim of the process.

It is appropriate to have the child outside the consultation room during sensitive discussions with the parent that might upset her child or reveal what she doesn’t want him to know? If the child is present, the mother will be less likely to bring up information of significant psychosocial importance. Unfortunately, many physicians carry on adult-level conversations in the presence of the child, ignoring what the child hears, sees, or thinks. Should the 5-year-old be present while his mother becomes teary, or the conversation touches upon the mother’s depression or problems in her marriage? When the clinician and the parent are discussing adult-level concerns, it is better for the child to be in the waiting room being read to by grandma.

Integration of Biomedical and Psychosocial Management

Basic Values of Clinical Practice

The clinical process is based on three values: The intrinsic worth of the individual; acceptance; and patient’s right to self-determination [21].

A belief in the intrinsic worth of the individual allows the doctor to care about the individual who needs help. It fosters conservative caregiving and allows the patient to trust the physician.

The value of acceptance implies that the doctor is committed to try to help the patient regardless of whether the patient is attractive or unpleasant or the disease is interesting or mundane [22].

Acceptance is the basis of professionalism—the value that helps the clinician to be nonjudgmental.

The patient’s right of self-determination implies that physicians do not own patients. We are hired by patients to engage in a collaborative effort aimed at overcoming their illnesses. If we want patients to follow our recommendations, we must use language that patients understand and explain the reasons for our recommendations so that patients can make rational choices.

Disease, Illness, and Role of the Physician

If the physician’s role is limited to diagnosis and treatment of disease, how does a clinician help someone troubled by symptoms that cannot be reduced to physical-chemical terms or “cured” by technologic means? [23–25]

An alternative role for the clinician is based on the distinction between disease and illness. Disease is defined as objectively demonstrable tissue damage causing organ malfunction. Illness is defined as the patient’s subjective sense of feeling unwell, suffering, or being disabled [14].

If the clinician’s goal is to relieve suffering, then his or her role can be defined as one who views the diagnosis and treatment of disease as second-to-none in importance, but only part of what is needed to overcome illness.

The Doctor-Patient Relationship: Three Models And Their Uses

In their classic paper, Szasz and Hollender [26] proposed three models of doctor–patient relationship: the activity–passivity model in which the physician ministers to the patient, who passively receives treatment and whose active participation is not required. This model is appropriate for patients in coma or who are otherwise unable to respond. Responsibility for outcome rests solely with the physician.

In the guidance–cooperation model, the patient’s responsibility is to answer the doctor’s questions, the physician tells the patient what to do, and it is the patient’s responsibility to comply with the doctor’s orders.

The mutual participation model, however, is based on a partnership of experts: the physician, whose expertise is in the knowledge of illness and disease, and the patient, whose expertise is in his or her unique personal experience with illness and disease. The importance of their respective roles is equal. In collaborating, the physician helps the patient overcome illness and, in return, receives compensation [27].

The doctor–patient relationship malfunctions when these models are applied inappropriately. For example, a child with recurrent abdominal pain is brought to a physician who allots only a few minutes of time for each patient. The history is taken by the nurse. It is read by the doctor who then enters the examining room, asks a few further questions, palpates the child’s abdomen, prescribes an anti-spasmodic, and leaves. The activity–passivity model thus applied is not likely to ease the child’s pain or satisfy her parents.

Another example of malfunction can be seen when parents bring their child with recurrent abdominal pain to a pediatric gastroenterologist. The consultant spends 30 min obtaining a history. The chronology of the child’s pain is obtained, and questions searching for causes of abdominal pain are asked based on the differential diagnosis. There are few open-ended questions about what the parents have been told previously or their concerns regarding their child’s symptoms. This illustrates the use of paternalistic guidance–cooperation model of doctor–patient relationship. The physician determines “what’s wrong” but misses the opportunity to discover “what’s going on.” What are their present concerns? What may have caused the child’s pain to become problematic at this time? What feelings and attitudes exist that may either impede or facilitate reassurance and compliance with treatment?

Dane Prugh [28] stated that any of the three models can be appropriate depending on the individual situation:

Sometimes the doctor–patient relationship passes thru all three phases. For example, if the physician is called upon to treat a late adolescent in diabetic coma, an active and authoritative approach to immediate diagnosis and treatment is vital, and can be most reassuring to the parents and the patient. Later, as the patient learns to control his diabetes, the guidance of the physician becomes paramount, and the mutual participation phase gradually evolves.

Some patients are only comfortable with the activity–passivity or the guidance–cooperation models, for personal or cultural reasons. Although these models place less responsibility on parents and child, the mutual participation model is more realistic when dealing with clinical problems that elude total understanding and control and require active participation by all members of the doctor–patient relationship for optimal results.

Assessing Pain Behavior

A child’s complaint of pain is determined by many factors: the intensity of sensory input, his pain threshold, his level of development, his capacity to filter the environment, his emotional state and its influence on pain tolerance, the cultural context, the expectation of response (or lack of response) from others, models of pain behavior in the environment, and the degree to which pain is used in somatizing [29]).

Children’s ability to distinguish emotional distress from bodily pain is limited [30]. They may complain of a tummy ache when most or all of the distress is fear or anxiety. Children may use “tummy ache” to mean hunger, the urge to stool, or nausea. Children’s ability to accurately describe subjective phenomena is limited. Their statements require objective corroboration.

The Effects of a Childs Illness on Parenting

The parent–child relationship normally requires parents to set limits and place expectations on their child that foster development and protect from harm. When their child becomes ill, obligations of school or chores are put aside. Parents become more attentive and compliant with the child’s wishes. If the illness is prolonged or perceived as potentially tragic, the parent–child relationship tends to change. The child begins to ask for—and often receives—what he would never have asked for or gotten when well. The parents find themselves accepting limits, e.g., cancelling vacations, taking time off from work, or tolerating behavior they would not have put up with previously. These changes are driven by parents’ realistic or unrealistic fears and guilt that they have failed to preserve their child’s well-being, even if there may have been nothing they could have done to prevent the illness. When diagnosis and cure are not forthcoming, parents go to increasing lengths to find a cure. The child’s anxiety may increase as parents’ control over his behavior weakens and he is subjected to increasingly stressful diagnostic procedures by a succession of physicians. In the process, the child’s suffering intensifies. When a clinical presentation is dramatic and alarming, clinicians might resort to procedures that may be unwarranted or even harmful. Children may develop incapacity and invalidism out of proportion to objective evidence of pain. To help the child and family, the clinician must address the child’s exaggerated incapacity as a related but separate issue with respect to his bodily complaints.

The Form and Content of Consultations

It is important to elicit the history from the parents in the absence of the child who is young enough to need protection from adult-level concerns so that the parents can speak freely. At the end of history-taking, the parent is asked open-ended questions, such as: (1) “What have you been told about your child’s abdominal pain?” (2) “What are your concerns now?” (3) “What are your worst fears?” (4) “What are your spouse’s concerns?” In answering these questions, the parents may reveal misconceptions derived from statements by other physicians as well as realistic or irrational fears derived from their own experiences and thoughts. Each parent’s answers may provide clues about their spouse’s point of view, parenting ability and the quality of their marital relationship.

A private chat with the child is an opportunity to elicit the child’s description of symptoms. It demonstrates the physician’s respect for the child. It is the basis upon which the physician can require the child’s participation and understanding in coping with pain. Sometimes, the child discloses information that neither the physician nor the parent knew [31]. It might be the only opportunity the physician will have to discreetly question the child about possible abuse.
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