Patient and Family Issues
Mirna M. Farah
Fred M. Henretig
Karen O’Connell
Introduction
A child is rushed to the emergency department (ED) by anxious parents. This scenario unfolds tens of millions of times a year in the United States but remains a uniquely compelling event for all the persons involved: the patient, family, and medical staff. In the most dramatic of cases, the child’s life depends on the skill of the ED staff in rapidly diagnosing the injury or illness, instituting life support, and initiating definitive treatment as a prelude to hospitalization. Unfortunately, some of these visits end tragically with the death of a child in the ED, despite a technically optimal resuscitation effort. In the vast majority of visits, the family returns home within a few hours, the child sporting some new sutures, or a new cast, or an antibiotic prescription for that unbearable middle-of-the-night ear infection. In every case, the child or family bears a lasting impression of the experience, even if the pathophysiologic aberration is readily corrected. Their pain and fear of the ED visit, and how these were addressed by the ED staff, may be remembered long after the physical wounds heal. Conversely, even an otherwise forgettable pediatric walk-in visit, perhaps one of dozens experienced during a busy shift, can be a residual source of frustration to the ED physician, who may have to battle to examine a screaming child or try five times to “get the i.v.” The general approach to these psychosocial stresses on child, parent, and medical staff is the focus of this chapter.
All patients are potentially traumatized by an ED experience, but some factors pertain uniquely to the pediatric visit (1,2). Children vary enormously in age and developmental status, but as a group they have an innate fear of needles and procedures. The younger child in particular fears strangers (and especially physicians, who are often perceived as sources of pain). Parents are the natural protectors and sources of comfort for their children during a physical or emotional crisis. When their child is sick, parents feel an obligation to serve in a helping role. They may also feel some share of responsibility for having “allowed” the illness or injury to occur. Thus, parents are functioning in dual roles when their child visits the ED. On the one hand, they wish to be composed and to function as members of the helping team. On the other hand, they are stressed and anxious and may feel some guilt over their child’s illness. In essence, they too are patients. Medical staff often diminish both of these parental roles in their zeal to get things done efficiently. This is generally a mistake. Parents, in most situations, are able to function as considerable sources of comfort and support for their children in the ED setting and belong at the bedside during the vast majority of interventions. This chapter explores background issues related to parental involvement in pediatric ED procedures. It offers an approach that allows the medical staff to take maximal advantage of the parents as allies in the effort to accomplish such procedures successfully from the child, the family, and the staff perspectives.
Benefits of Family Presence
Benefits to Patients
Psychologists consider the first year of life to be a period when children experience their world as an extension of their parents. Although toddlers aged 1 to 3 years begin to understand themselves as individuals, there is still a very close bond to parents that requires a nearly constant sense of parental presence within the immediate environment for maximal sense of security. Infants beyond 6 to 9 months of age have intense stranger anxiety, often lasting to the age of 3 years. Maintaining close contact with parents is crucial to optimizing psychological support during a stressful event in this age group (Table 1.1).
Although older preschool and school-aged children are obviously able to tolerate brief separations from their parents, they still derive a strong sense of comfort from ready access to them. Dentists have reported that children aged 41 to 49 months are less fearful and more cooperative when their parents stay with them (3). Pediatricians looked at the effects of family presence during i.v. placement in children 1 to 18 years of age and found that both the patients and their parents in the family presence group were significantly less distressed than those in the family absence group (4,5). Further surveys of health care providers and parents witnessing more invasive procedures done on their child showed family presence to be significantly helpful to the patient (6,7). When surveyed, more than 90% of children 9 to 12 years old reported that the “thing that helped most” during a painful procedure was to have their parents present (8). Other researchers observed that behavioral manifestations of discomfort may actually increase if the parents are present (9); this may reflect the child’s perception that parental presence gives permission to verbalize his or her discomfort. However, the goal of pain management during procedures is obviously not to produce a cooperative child who bravely suffers in silence.
Not only is it essential to include the parents in the care plan, but it is equally important to involve the children and allow them to make choices when applicable (10). Examples of such choices range from a favorite cast color to a preferred i.v. site and to whether they want their parents to be present or absent during the procedure. Medical information should be explained using age-appropriate language, and any strong disagreement should not be ignored. Increasing the patients’ knowledge about their care improves both their compliance with the treatment plan and their level of satisfaction and can thus improve the outcome (11).
TABLE 1.1 Benefits of Family Presence | ||
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Benefits to Parents
Parents play an integral role in the health and well-being of their child. Therefore, supporting and integrating the family into the emergency care process is crucial for meeting the full spectrum of the patient’s needs. Family presence during resuscitation and procedures meets the family’s emotional need to be informed, feel accepted, and be able to provide comfort to the patient.
Using theoretical scenarios, parents were surveyed on their preferences regarding being present during a variety of procedures done on their children. In one study, 400 parents completed anonymous surveys in the ED waiting area (12). The majority of parents (98%) wanted to be present during venipuncture, 87% during lumbar puncture, 81% during endotracheal intubation, and 83% during cardiopulmonary resuscitation (CPR) if the child was likely to die. Nearly all parents (94%) wanted to participate in the decision regarding their presence. In another study, from a Boston pediatric ED (13), 78% of parents surveyed indicated they would want to be present when their child had blood drawn or an i.v. was started. Of this group, 80% said it would make them personally feel better, 91% thought it would make their child feel better, and 73% felt it would help the physician. A follow-up study by the same authors (14) reported on actual observations of 50 venipunctures or intravenous cannulations. Parents remained with their children during 62% of the procedures. Many of the parents who did not stay indicated they would have preferred to but were either directly asked to leave or given nonverbal cues strongly suggesting that they should. Overall, only 10% of this group of parents stated they had not wanted to be with their child during the procedure.
Multiple other studies have shown that the majority of parents who witnessed procedures done on their child felt that their presence helped them and helped their child (4,5,6,7,15). Family presence reduced both the parents’ and the patient’s anxiety and sense of helplessness and eliminated the parents’ agony of being left outside the treatment room without seeing what’s really happening to their child. Even when the patient is likely to die, family presence remains extremely beneficial. Family presence allows parents to be beside their loved one until the last minute. Parents can touch their child, express their love, and say good-bye while there is still a chance that the patient can hear (16). Family presence also brings a sense of reality regarding the treatment efforts and clinical status of the patient, helping the family avoid a prolonged period of denial (17). Parents can see for themselves the tremendous effort put into the resuscitation attempt, and this has far more meaning then being told, “Everything possible was done” (18). In addition, family presence facilitates the grieving process and
may be one of the most powerful interventions that can be offered to a grieving family (18,19,20,21). The majority of family members who witness CPR feel that their presence helped them adjust more easily to the death and benefited the dying patient (18,19,21). Therefore, the manner in which we as health care providers care and respect the wishes of both the dying patients and their parents is crucial in helping the family accept the death and deal with the crisis.
may be one of the most powerful interventions that can be offered to a grieving family (18,19,20,21). The majority of family members who witness CPR feel that their presence helped them adjust more easily to the death and benefited the dying patient (18,19,21). Therefore, the manner in which we as health care providers care and respect the wishes of both the dying patients and their parents is crucial in helping the family accept the death and deal with the crisis.
Benefits to Health Care Providers
Including the family in the care plan promotes collaboration among medical providers, patients, and family members. When present, family members take on unique “patient helper” roles, providing support and security to the patient and medical information and translation to the staff (17). With loved ones present, patients become less anxious and more compliant; thus, the procedure has potential to go more smoothly (7). Regardless of the patient’s condition, parents seem to focus on their child-comforting role rather than the standards of medical care (17,22). One father said, “The doctors and nurses were there for the procedures, but I was there for my daughter” (17). Emergency physicians and pediatricians should foster the parents’ role as allies and partners in their child’s treatment.
Family presence may also decrease litigation risks to health care providers (23,24,25). Many disputes and complaints are avoided by improving communication, increasing openness, and decreasing doubt about the adequacy of care (11,26,27). Too often, family members who are kept out of the room during a procedure or code cannot help but get suspicious (24). They may ask themselves, “Why don’t they want us to see what they are doing?” If they do ask themselves this, they are more likely to seek legal advice, especially if they feel that the staff failed to show compassion and concern for their situation. When family members see with their own eyes that the team was working feverishly to save their loved one’s life, they are far more inclined to view the team members as partners rather than adversaries (24). Even if the parents decide not to be at their child’s bedside, knowing that they have that option serves to foster trust and positive communication.
TABLE 1.2 Perceived barriers to family presence and proposed solutions | ||||||||||||||||||||
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When family members are present, codes take on a more “personal” aspect, and team members develop an increased awareness of each other’s feelings (19). This tends to strengthen the bond of camaraderie and support among health care providers (19). The patient is viewed as part of a loving family and not as a clinical challenge, thus reminding staff to consider the patient’s dignity, privacy and need for pain management (9,17,28). Family presence encourages a more passionate and professional atmosphere and less nonessential talk and black humor (17).
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