22 Resuscitation
Although technological and medical advances have led to an increase in pediatric patients’ survival rates, the number of children living with life-threatening conditions is on the rise.1 Many of these children are medically fragile and face uncertain prognoses with regard to cure, life expectancy, and functional outcome.2 End-of-life decisions such as forgoing life-sustaining medical treatments or placing a DNR or similar order in the medical record are extremely complex, and parents report that decisions such as these are most difficult for them to make for their child with a life-threatening illness.3 Frequently, these decisions have to be made at a time when the patient has experienced clinical deterioration, causing great duress for family members as they witness the significant suffering associated with their child’s advancing illness. Communication and decision making with patients and parents regarding resuscitation and forgoing artificial life-sustaining medical treatments (ALSMT) must therefore be based on a framework that is both humanistic and ethical.4 Although attempting to predict outcomes in this group of highly complex patients may be difficult, performing cardiopulmonary resuscitation (CPR) or other medical and procedural interventions may seriously impair the quality of life of patients. It may also negatively impact the ability of children and parents to achieve important life goals. In an effort to minimize this risk, clinicians, parents, and pediatric patients frequently struggle to decide if or when to place a DNR or similar order in the medical record.
A patient’s resuscitation status is usually determined by the clinician through discussions with the patient and family on the potential use of certain medical interventions, such as CPR or endotracheal intubation and mechanical ventilation in the care of a patient with life-threatening illness. In the context of clinical care, these discussions are frequently summarized by the simple phrases code or no code. These discussions, however, have to be individualized and based on the overall goals of care for the patient and family.5 Specific interventions such as non-invasive respiratory support or other ALSMT may be appropriate early in the disease trajectory, but as death becomes imminent, goals as well as interventions to support them may likely change. The primary purpose of such resuscitation discussions is to attempt to secure for the incurable child a death filled with dignity and free from excessive suffering and treatment-related morbidity.6
The American Academy of Pediatrics (AAP) has adopted the definition of ALSMT as “all interventions that may prolong the life of patients.”7 This includes such technologically advanced measures as solid organ and bone marrow transplantation, but also includes less technically demanding measures such as antibiotics, support from blood products, artificial hydration or nutrition, and CPR. There has been a general consensus in pediatric medical literature that decisions regarding starting or forgoing ALSMT should be based primarily on the relative benefits and burdens to the patient and family.8,9 Therefore, the goals of the patient and family need to be elucidated and the potential benefits and burdens of CPR and other ALSMT clearly explained. Clinicians must understand the goals and needs of patients and their families for making suitable recommendations to forgo an attempt at resuscitation or withhold or withdraw ALSMT (Table 22-1). CPR is unique in that an order is required to forgo it, and it is presumed that resuscitation is desired unless explicitly refused through a DNR or other similar order.10 Most healthcare facilities have a specific form, such as a DNR order, that is used to denote the patient’s resuscitation status. The specific contents of a DNR order vary widely, depending on legal jurisdiction and individual facility interpretation.10 Terms such as “Do Not Attempt Resuscitation” (DNAR) and “Allow Natural Death” (AND) have been proposed as alternatives to DNR in order to emphasize differing qualities of such orders. DNAR, for example, attempts to negate the underlying assumption that CPR will be successful if it is employed; AND has been recommended as a more acceptable term from a patient’s perspective, although this has not been explicitly studied among families of children with life-threatening illness.11 Physician Orders for Life Sustaining Therapies (POLST) and Physician Orders for Scope of Therapy (POST) forms are goal-oriented documents that incorporate specific decisions regarding resuscitation status. The forms function more as a means for advance care planning and may be used earlier in the disease trajactory.11,12 Medical institutions should examine their order forms, policies and procedures in order to ensure they are goal-based and meet state and federal guidelines. Clinicians need to be familiar with specific state and institutional requirements in order to best educate patients and families on this topic as well as become more effective at leading conversations and making recommendations on resuscitation status and forgoing ALSMT.
TABLE 22-1 Resuscitation Scenarios and Probing Questions
| Clinical Scenario and Example | Probing Question | Potential Response Regarding Resuscitation |
|---|---|---|
| Given your understanding of your child’s illness, what are your goals for you, your child, and your family? Would you like to talk about what to expect if the tumor grows in size despite treatment? | ||
|
How has being sick been for Emma? What about for you? What makes her happy? What seems to bother her or make her sad?
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Some families with a goal of prolonging a life of good quality for their child recognize the hospital and ICU as a source of distress. Since this is how Emma seems to view the hospital, we need to discuss ways to accomplish the overall goal trying our best to stay away from the hospital. It may be that using oxygen and other breathing support interventions from home are able to keep her comfortable and help prolong her life. We need to discuss what to do if Emma’s breathing does not get better, though. One question to consider is, “Is it more important to stay at home and focus on comfort or to come to the hospital and consider using machines to support the breathing?” We can always change our decision; it will be an ongoing conversation as Emma feels better and worse. | |
| Lisa seems comfortable right now. I am so happy for her. One of the purposes of my meeting with you today is to help you better understand her illness and what you might expect as the illness advances. I also want to learn more about your goals for Lisa. Do you have any questions for me before we begin this conversation? | At some point, most children with Lisa’s illness begin to have trouble breathing. There are specific interventions we can do to help Lisa breath better and to ensure she is comfortable, but there is no intervention to make Lisa’s breathing ability return or to make Lisa breathe better on her own. It is important for the medical team to understand your goals of care for Lisa so we can best know how to respond when this happens. We want to make sure that all of our responses are done for Lisa and not simply to her. | |
| Do you sense that Mike is suffering from his difficulty breathing? Do you see him as comfortable overall? What is your greatest concern right now? | As we have established a goal of helping Mike be comfortable as the first priority, breathing machines and CPR do not accomplish this goal and may actually do more harm than good. I, as a physician, would like to write an order to allow the medical community to focus on comfort and not need to attempt CPR if Mike stopped breathing. We will also be escalating interventions aimed at ensuring Mike’s comfort. |
Patients and parents may be hesitant to agree to forgo some ALSMT or an attempt at resuscitation because they believe that other care interventions not otherwise specified in their decision may change once an order has been placed in the medical record. Early published guidelines for DNR orders urge that “nothing in the entire procedure should indicate to the patient and family any intention to diminish the appropriate medical and nursing attention to be received by the patient.”13 A DNR order simply indicates that no resuscitation should be attempted in the event of cardiopulmonary arrest. In the absence of cardiopulmonary arrest a DNR order should not alter a patient’s care, and medically appropriate treatment options that help facilitate the goals of care for the patient and family should be provided.14,15 In end-of-life care for adults, however, a DNR order is in practice often one of a series of measures to limit aggressive life-prolonging interventions for severely or terminally ill patients.16
