Skill in dealing with the parents and family is essential in providing optimum care for the child. This requires professional competence, patience, and empathy for child and family. Dealing with parents is often the area of greatest difficulty for the orthopedic resident. Developing appreciation, sensitivity, and skill in communicating with parents and the ability to calm their anxieties are essential skills in dealing effectively with the child’s problem.
The child’s overall well-being is the primary objective of management. Doing what is best for the child requires respect for the inherent value of childhood as an important time of life. Childhood is more than just a preparatory period of life; it has intrinsic value. Moreover, unnecessary interference with the child’s life deprives the child of important life experiences. This concept is especially important in pediatric orthopedics, where the physician often deals with chronic disease; “medicalization” of childhood is a serious risk. We may create what is referred to as the vulnerable child syndrome. These children are often harmed by unnecessary restrictions. Some philosophical and practical guidelines are given here:
Resist the pressure to treat the child simply to satisfy the parents or just to “do something.” This is harmful to the child, disruptive to the family, expensive for society, and poor medical practice.
Order treatment only when intervention is both necessary and effective In the past, treatment was commonly prescribed for conditions that resolve spontaneously, such as intoeing, flexible flatfeet, and physiological bowlegs. Observational management, a policy of monitoring the child’s condition with minimum intervention, provides optimum care for a large percentage of pediatric orthopedic problems. It is least disruptive to the child’s and family’s life and generates a reputation of honesty and competence for the physician.
Unnecessary restriction denies the child play experiences vital to enjoying childhood and developing critical skills. In some situations, the physician may need to curb the parents’ tendency to overprotect the child. It may be in the child’s best interest to risk injury rather than to have long-term constraints on natural activity.
Avoid medicalization of the handicapped child Overtreatment can further limit the child and overwhelm the family. Excessive numbers of physician’s visits, operations, therapies, braces, and other treatments will result in a large share of the child’s life being expended on treatment that may provide little or no benefit.
Before considering any treatment, consider the child as a whole Treatment methods readily prescribed for children would never be accepted by an adult. Orthopedic treatment can be damaging to the individual’s self-image and be uncomfortable or embarrassing for the child. Make certain that the anticipated benefits of treatment exceed the harmful psychological, social, and physical effects on the child.
Care of the child requires the highest medical standard The results of treating a child, whether good or bad, may remain with the patient for 70 years or more.
Dealing with parents is an essential part of a pediatric practice. Each family has certain rights, such as privacy, that must be respected, as well as differing needs and values.
Family coping ability should be respected. Respect the family’s resources concerning time, energy, and money. A handicapped child adds stress and complexity for any family. Balance the treatment plan and the family’s resources. Consider the well-being of the other children and the health of the marriage; if these are marginal, it may be prudent to order only essential treatment. At different times during management, encourage questions and discuss progress with the family. Being sensitive to the coping ability of the family is part of the physician’s responsibility. Demanding more than the family can handle results in noncompliance that may be more the fault of the physician than the family.
Informed consent should be part of all management, whether surgical or not. The family has the right to know the pros and cons of the management alternatives. The physician’s influence is greater with adults as parents than as patients. Most parents are very sensitive to the possibility that the child’s current condition may cause some disability in adult life. Certain words, such as “arthritis,” “crippled,” and “pain,” have a powerful effect on parents and should be used with caution. For example, in the past, many rotational osteotomies were performed to correct femoral antetorsion under the assumption that the procedure would prevent arthritis of the hip. Although the prophylactic value of the procedure was uncertain, parents readily gave their consent under the presumed threat of arthritis. Several recent studies have shown no relationship between femoral antetorsion and arthritis.
Support and reassurance should be provided for patients and parents. In managing common resolving problems such as intoeing, reassurance is the main treatment. With more serious problems, reassurance may take the form of providing information that dispels the parents’ fears about the future. In critical conditions, reassurance consists of assuring the family that you will support them throughout the disease. The process of providing effective support and reassurance involves several steps:
Make certain that you understand the family’s concerns and take these concerns seriously.
Conduct a thorough evaluation of the child Pay attention to the family’s specific concerns. For example, if they are anxious about the way the child runs, be certain that you observe the child running in the hallway.
Provide information about the condition, especially the natural history. Make copies of appropriate pages of what families should know for the family to take home and show other family members.
Offer to follow the problem in the future Not all positional deformities resolve with time. Offer to see the child again if the family has additional concerns. If the family is obviously apprehensive, or there is someone in the family who is the major source of concerns, such as the grandmother, it may be necessary to provide reassurance repeatedly. For example, suggest that the grandmother accompany the child during the next visit.
If the family is still unconvinced, suggest a consultation An offer to refer the child usually increases the family’s confidence in the physician. Be certain to communicate to the consultant the family’s need for reassurance and not that you are recommending some treatment.
Avoid submitting to family pressure for treatment that is not medically indicated Performing unnecessary or ineffective procedures because of family pressure is never appropriate.
Procedures are a source of family stress. Whether the family should be present during procedures, such as joint aspiration, should be managed individually. Some parents prefer not to be present; others insist on being with the child. Whenever possible, give the family a choice. Be aware that if the parents are present, one of them (usually the father) may feel ill or dizzy and need to lie down. More often, a parent can help calm the child. Moreover, the presence of parents helps to prevent feelings of abandonment in the child. In summary, even though the parents’ presence may add a complicating factor for the physician, it may be of benefit to the child.
Litigious problems are fortunately less common in pediatrics compared with other orthopedic subspecialities. However, the legal exposure period for the physician is much longer, because the statute of limitations usually starts at the age of majority. Medical competence, attention to detail, and good rapport with the family are the best protective measures. Additional measures include complete records, generous use of consultants, and avoidance of nonstandard treatments. If an unusual or tragic incident occurs, document the circumstances honestly and thoroughly. Be especially attentive to the family at this time and respond quickly to their concerns.
Religious beliefs may affect the physician’s management. Religious beliefs should be respected to the extent that they do not compromise the child’s treatment. Discuss the parents’ beliefs and concerns openly. Issues regarding blood replacement are common. Alternatives are possible, so do not victimize the child by taking a rigid position against the family. With planning, careful technique, hypotensive anesthesia, and staging if necessary, nearly all orthopedic procedures can be managed without blood replacement. Some families will want a period of time for prayer before giving consent for an operative procedure. Unless time is critical, a negotiated delay is appropriate. Establish a time limit and determine some objective outcome measures in advance.
Family values should be incorporated into the management plan. For some medical conditions, management indications are unclear or controversial. Inform the family of the situation and discuss the choices openly so that the management is consistent with the family’s values. Family feelings about operative procedures, bracing, therapy, and other treatment methods vary considerably. The family’s feelings and values should be respected but should not supersede the delivery of optimal medical care. Performing an operation that is medically not indicated because of family insistence is not appropriate.
Difficult families may tax the physician’s ability to deal with the parents’ reaction to their child’s illness. The parents may become overprotective or, conversely, may abandon the child. Some parents become abusive toward the physician and staff. Be sure that the parents’ behavior does not adversely affect your management of the child. Be understanding but firm, and when appropriate, support abused staff members. Write a note in the chart summarizing the parents’ behavior.
Grandparents often accompany the child to the clinic. Grandmothers are often concerned about infants’ flatfeet, intoeing, or bowlegs. In the grandmother’s child-rearing era, positional problems were poorly understood and routinely treated. Overcoming such misconceptions requires a willingness to respectfully explain the reasons for current management.
Unorthodox methods of care by nonphysician practitioners are often considered by parents. Such practitioners usually prescribe treatment, and the treatment often continues over a long period of time. By current standards, such treatments are generally unnecessary and ineffective. Moreover, the treatment may delay necessary treatment. Avoid criticism when discussing these “treatments” with the family; instead, focus on parent education. This is much more effective than criticism. If the parents insist on unorthodox treatment, suggest an objective outcome measure and reevaluate the child later. If appropriate management cannot wait, use a more aggressive approach. Start with the basic facts, obtaining consultations for reinforcement if necessary.