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

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 Studies have also shown that treatments other than CPR may be withheld from critically ill adults with a DNR.^17,18 There are few data on this topic with regard to children and adolescents, but an early report suggests that at a tertiary pediatric oncology referral center, clinical care interventions other than CPR and mechanical ventilation did not seem to be limited by a DNR order.¹⁹ Because it remains unclear whether a DNR or other similar orders affect the provision of interventions other than CPR in children, it is important to discuss with the patient and family all the aspects of care that will be continued or added. This discussion can facilitate accomplishing the goals of care instead of focusing on the recommendation to forgo ALSMT or an attempt at resuscitation. Clinicians need to avoid phrases such as “withholding or withdrawing care.” In fact, the difficult nature of end-of-life care requires that care be actually increased during this trying time. Families need to be assured that clinicians are dedicated to upholding the standard of care and support end-of-life goals of care for patients.

Another difficulty with discussing resuscitation status with families is the misinformation that has been propagated through media sources.²⁰ CPR has been shown to be almost always successful on television shows. However, the literature reports that only approximately 25 percent of hospitalized, critically ill pediatric patients who undergo CPR survive until hospital discharge, and this number is even lower for patients with underlying medical conditions and co-morbidities. There is a plethora of information available about CPR in children, but much of this is in the acute setting, the ICU and emergency department, where the medical team likely believed that CPR was clinically appropriate and the goals of care may not have primarily focused on comfort. A recent report has shown that hospitalized pediatric patients with advanced cancer have poorer outcomes after receiving CPR than other hospitalized pediatric patients when undergoing in-hospital resuscitation.²¹ The same is likely true for many patients with advancing life-threatening illnesses. A meta-analysis of studies on adults with metastatic cancer who undergo in-hospital CPR shows that these patients have a rate of survival to discharge of only 5.6%.²² These statistics can be shared with patients and families while providing recommendations and making decisions.

Another difficult aspect of discussing resuscitation status is to determine how and when to incorporate children into the decision making. Children and adolescents are likely capable of understanding complex decision-making processes and of using the information for end-of-life issues and other related topics to make a decision.²³ Also, speaking to their children about dying seems to be beneficial for bereaved parents: parents who reported speaking to their children about dying and death did not regret discussing these issues. However, a significant proportion of those who did not speak to their children about these issues reported regretting not doing so, especially if they believed that their child wanted to discuss death-related issues.²⁴ However, many children do not desire to participate in end-of-life decision making and are comfortable with their clinicians and parents discussing and deciding on these issues. Therefore, clinicians are advised to encourage the inclusion of children in resuscitation discussions, but at the same time also be very sensitive to the potential harm that can come from doing so. Clearly, the approach to such a sensitive topic must be individualized and the benefits and burdens of involving the patient in decision making discussed with the family.

Even though resuscitation is difficult to talk about, there has been a trend over the past decade to discuss end-of-life issues early on and integrate palliative care principles into the continuum of care of children suffering from life-threatening illnesses. Care interventions in the treatment of children with life-threatening illnesses seem to be inclined toward decreasing attempts at resuscitation and increasing use of DNR orders, hospice, and home-based care.^25–27 This likely represents a systematic shift toward a more family-centered approach to end-of-life care that is goal-based and aimed at maximizing comfort. Earlier agreement between families and clinicians that cure is an unrealistic goal increases the likelihood of the use of hospice, earlier institution of a DNR order, and an earlier focus on issues related to comfort and quality of life.²⁸ Children with life-threatening illnesses and their families need to be informed that early integration of palliative care principles and increased emphasis on end-of-life care discussions has also helped bereaved parents to be better prepared during the child’s last month of life and at the time of death.²⁵ Introducing the concept of palliative care in the context of options, planning for now or the future, or decision making for your child and family during this most difficult chapter of the illness, may be helpful.²⁹

Discussions regarding forgoing ALSMT or resuscitation status can be best accomplished through an interdisciplinary approach of a team familiar with the hopes, values, needs, and goals of patients and families. The use of psychosocial resources during these difficult conversations can enable more effective communication.^28,30 Families must be reassured that they are not alone, and the team needs to encourage a family-oriented approach that fosters open communication, psychosocial and spiritual support, and timely access to care, with the primary purpose of ensuring that goals of care are supported. Use of a multidisciplinary approach while discussing end-of-life decisions can facilitate achieving the goals of care, as many of these goals may not be treatment-related and may be best addressed by members of the team other than the physician.

In an increasingly diverse cultural society, it is also likely that clinicians need to discuss end-of-life issues with patients and families with diverse backgrounds and cultural needs. An interdisciplinary team can facilitate conversations in such situations by developing greater sensitivity and awareness as to how cultural factors influence end-of-life decisions and finding solutions to overcome barriers. Teams are encouraged to use professional interpreters when there are language barriers in order to assure accurate communication and understanding.³¹ A multidisciplinary approach may also allow the family to feel an increase in the level of care rather than a pulling back of the team as forgoing ALSMT and resuscitation issues are discussed. This is critical as abandonment, or a sense of abandonment, during the end-of-life period can cause significant distress to the primary care team and to families.³²

As stated earlier, there has been a shift toward more children with life-threatening illness dying at home and having a DNR or other such order in place. It needs to be ensured that these documents do not influence interventions other than those described in the order. Children with out-of-hospital DNR or other similar orders deserve to have their wishes honored to forego CPR and have their goals of care supported even if they call 911 or activate the emergency response system. In-hospital and out-of-hospital advance care planning documents such as the POST and the POLST are becoming common, but a consistent DNR form and documentation is not yet universal. Outpatient orders to forego resuscitation efforts for adults can be honored with the assurance of protection against liability,³³ and arguments have been made that this right to self-determination should be given to children as well.³⁴ Clear documentation of advance directives and desired resuscitation status has been demonstrated to lead to effective responses to emergency management issues, even if a parent is not present, without performing unwanted CPR.³⁵ Clinicians are encouraged to work with first responders in the community and the emergency medical system (EMS) to clarify the goals and plan for patients in the community setting. To facilitate the plan of care, families can also be encouraged to use alternative services such as hospice rather than activating the EMS.¹⁰

One specific example of how out-of-hospital orders to forego CPR can be used is the school setting. Many children with a DNR order want to attend school, in fact, this is a primary palliative care intervention for some patients.³⁶ Schools are unlikely to have specific policies in place for children who have decided to forego CPR or other ALSMT. The majority state that they do not know how they would handle a patient with such an order or that they would not honor the DNR.³⁷ School officials may also be uncomfortable with the considerable uncertainty surrounding the care of a child with a life-threatening illness and the impact that child’s care may have on other students. Communication with school officials, teachers, and other students’ families is recommended in order to provide the best care for the child while also ensuring the well-being of other children. Furthermore, clinicians should regularly update the school authorities about changes in the overall plan of care and be available to assist teachers, administrators, and other children and their families when the child dies.³⁸ Clinicians can also help guide decision making regarding the child attending school during times of clinical deterioration or when acute deterioration is anticipated.³⁹