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Chapter 14: Palliative and End-of-Life Care in the Pediatric Intensive Care Unit

happen 58 (see Chapter 16: Ethics in the Pediatric Intensive Care Unit ). Before discontinuing a ventilator, it is also important to as sess a patient’s comfort and level of awareness. Although re moving an endotracheal tube may improve comfort, it is also possible that there will be increased dyspnea afterward. Ad ditional doses of medication or infusions should be prepared and made readily available, and escalating medications before the extubation is important if the clinician anticipates distress. The clinician may want to decrease the ventilatory support before extubation to see if the patient shows signs of respi ratory distress to allow anticipatory dosing. Stopping other interventions, such as vasoactive infusions, before extubation can facilitate an assessment of whether death is anticipated quickly. Institutional checklists or protocols for discontinuing interventions at the end of life may be helpful to staff. 59 SUPPORT OF THE FAMILY Support of the family is an essential component of care for the critically ill or dying child. 60 Parents are the natural caregiv ers of their children. Parents routinely provide, protect, and advocate for their children and maintain authority over many aspects of their children’s lives. However, during critical ill ness, many of parents’ caregiving roles and responsibilities are transferred to health professionals because of the complex and specialized care required. Alteration of parental role has been identified as the greatest source of stress among parents whose children are hospitalized in ICUs. 61 Helping parents to “be good parents” in the face of their child’s life-threatening illness requires an understanding of parents’ needs and a team of health professionals and environment of care that acknowl edges and supports these needs. 62,63 Supporting the parental role has the potential to improve quality of care for the child as well as long-term outcomes for parents and families. 64 Parents’ needs during a child’s critical illness and death are often shaped by the ways parents define themselves. For many parents, “being a parent” is a key part of their personal identity. Parents typically seek to maintain relationship with their critically ill child before, during, and even after death. 65,66 Parents have a need to touch, hold, and be present with their child. Mementos such as a lock of hair, handprint, or blanket serve as tangible symbols of the child’s life. Mementos not only bring comfort to parents at the time of death but also anchor parents’ memories to help them stay connected to their child during bereavement. 65,66 Part of “being a parent” is making decisions for the child, and parents have a need for their authority in decision-making to be respected. 65 However, children may have interests independent of their families, and parents’ authority in decision-making is not absolute. Shared decision-making is the primary decision-making model recommended for use during critical illness. 67,68 When used in the ICU, both parents and health professionals are asked to discuss options, share views, and reach consensus on a plan of action that is in the best interest of the child. Studies on parents’ decision-making preferences in ICUs suggest that most parents prefer their role in decision-making to be shared with their doctor or to have significant autonomy in the final decision. 69,70 In cases where it is clear that the child is terminally ill, the physician should help a family understand that there are other things they can do to help their child (provide comfort, being present, mak ing sure their child knows they are loved) that do not involve escalating uncomfortable and ultimately nonbeneficial ICU interventions. 71,72 Cultural, religious, and family traditions also contribute to parents’ sense of identity and continuity as they are faced

interventions other than those focused on treating pain and suffering. There are also some interventions (eg, extracorpo real support, dialysis) that a team decides not to offer because they would not help, without necessarily needing an explicit order or family discussion to avoid them. For some families, it is easier to consider avoiding new interventions but continuing those that are already in place for some time. Although ethi cally there is little difference between withdrawing a therapy versus not starting it in the first place (see Chapter 15: Pain and Sedation Management ), non-escalation may cause less emotional distress. In some countries, non-escalation is more consistent with cultural and legal norms, whereas in others withdrawal of therapies once they are no longer helpful is the standard approach. 56 Occasionally, a patient with a DNAR and/or do not in tubate (DNI) order may benefit from an operative procedure that is being considered to either treat symptoms or prolong life, but with no plans for long-term mechanical supports. If such a patient is going to the operating room, it is very impor tant for proactive discussions to occur between the surgeon, anesthesiologist, ICU team, and family to make sure that all are comfortable with a plan to either rescind or continue a DNAR order in the perioperative period. 57 Again, keeping goals in mind is the first priority. It might make sense to re voke the DNI portion of the order for a few days around a procedure, but reassess if things do not go as expected. Some families may prefer that CPR not be performed even in this setting, but the surgical and anesthesiology teams have to be comfortable with this plan because the surgical procedure or anesthetic provided could potentially be the cause of an arrest. Discontinuing Mechanical Ventilation Decisions regarding how to discontinue ICU interventions may be case specific but should always focus on how to best minimize the suffering of the child. Removing a ventilator is a relatively common procedure at the end of life, so there are several important steps to keep in mind. A very important first step is to prepare the family for what will happen. In many countries and health care settings, the family will have participated in decision-making to come to a shared conclusion that continued ventilation is no longer help ful; in other settings where the decision to remove a ventilator might be made by the medical team alone, the family should still be informed of the reasons for ventilator removal and the comfort focus. They should understand that the team will be there with them to continually assess and treat discomfort. They should be told what to expect their child to look like— discussing the possibility of color changes and irregular or noisy breathing. If at all possible, the room should be prepared to give them privacy and a peaceful environment. Helping a family hold their child or lie in bed with their child before, during, or after extubation is important. As discussed earlier, clinicians should avoid predicting exactly when a child will die following an extubation, but reassure the family that they can be with their child throughout the process. In addition, it is important to notify the appropriate organ procurement organization affiliated with the institution for any anticipated death so an assessment can be made before withdrawal about whether the patient could be an organ or tissue donor follow ing death. Although traditionally most organ donors are pa tients declared dead by neurologic criteria, many institutions do have protocols in place for organ donation after a circula tory determination of death. Attempting such a donation may only be possible if a fairly rapid death is anticipated follow ing the removal of the ventilator (typically less than 1 hour) and usually changes the location where the withdrawal will

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