Rogers Textbook of Pediatric Intensive Care

148

Section IV: Ethical and Palliative Concerns in the Care of the Critically Ill

illness so that they can build a relationship before a child’s condition deteriorates. 19 In addition, evidence from adult studies suggests that earlier palliative care referral may not only improve the quality of life of patients with a terminal illness but can also prolong life. 20,21 Unfortunately, there are not enough resources to allow all children and families facing a potentially life-limiting illness to be followed by specialized pediatric palliative care teams. Such teams may not exist in all institutions or all countries, and even when they do, it may not be possible for them to meet and care for all pedi atric patients who are or may be dying. It is therefore neces sary for pediatric intensivists to be skilled and knowledgeable at providing “primary” pediatric palliative care while being aware of what “specialty” services are available at their par ticular institution when needed. 22 LOCATION OF DEATH The majority of deaths in the pediatric ICU follow a deci sion to withdraw or withhold life-sustaining treatment rather than failed resuscitative efforts, although there is variation by country and region. In North America and the United King dom, withdrawal of treatment precedes more than half of pe diatric ICU deaths, whereas authors from Europe and Brazil have reported that the proportion at their centers is below 50%. 10-12,23-25 For patients whose death is anticipated, a question may arise about whether it is appropriate for the patient to re main in the ICU or be transferred elsewhere. Many factors may affect this decision. It could be important to consider how quickly the patient is anticipated to die following the discontinuation of technological or pharmacologic support, whether the patient is well known by a clinical service in the hospital other than the ICU, how complicated the care might be for a team outside of the ICU, and whether the family is comforted or distressed by being in the ICU. The parents of many oncology patients, for instance, might prefer to have their child return to an oncology floor for the last few days of life if the care can be managed there, as they often have a long-term relationship with the physicians and nurses on the ward. Yet for a patient who is expected to live for only a few hours at most following compassionate extubation, it would not be appropriate to transfer care to a new team who does not know the patient or family. Some relevant factors such as the availability of a private space for the family to be with the patient or the amount of noise in a given unit may vary by institution. Another question that may arise involves when it is ap propriate for a patient with a do not attempt resuscitation (DNAR) order to be admitted to the ICU. Even when pro cedures such as intubation and resuscitation are not desired, there are still many reasons that a patient might benefit from being in an ICU. An example could be a family that has decided that they do not want their child with a severe neuromuscular disorder to undergo another prolonged intubation and ICU stay for a respiratory decompensation, but would be willing to have a time-limited trial of vigorous pulmonary toilet and noninvasive ventilation to see if there is a rapid turnaround. It is also possible that some medications necessary to manage refractory symptoms at the end of life (eg, ketamine for severe pain, octreotide for bowel obstruction) are only available in the ICU. In addition, intensive attention to pain and symptom management may require a nurse-to-patient ratio that is avail able only in the ICU. It is usually appropriate to prepare a family that there is uncertainty about the exact timing of death following removal of therapies or a decision not to escalate. Plans

can be put in place with an acknowledgment that the plan would need to be altered for an unexpectedly rapid or slow deterioration. A family may lose trust in the medical team if they expect death to occur within seconds of an endotra cheal tube extubation but the child breathes spontaneously for days to weeks. Avoiding overly precise statements can be accomplished by using ranges and phrases such as “I expect continued breathing for minutes to hours” or “We often see children who remain in this state for days to weeks before death.” Some families can actually find comfort in knowing that they are not choosing the time of death in deciding to remove a ventilator—the medical team and the family are simply deciding to remove technology that is no longer helpful; the patient, disease process, or a higher power (if the family speaks in those terms) will determine what happens next. HOME AND HOSPICE SUPPORT For many families, being at home in familiar surroundings with their child at the time of death can be a great source of comfort. For others, the thought of being at home is terrify ing and they are more comfortable remaining in the hospital with the full support of the medical team. There is no one place that is right for every patient. Although studies have shown that more pediatric patients are using home hospice services over time, 26 many ICU patients have clinical instabil ity or a need for minute-to-minute nursing interventions that make a transfer to home unfeasible. Often, those children for whom a transfer home is considered are the patients who survive for several days following the withdrawal of technol ogy, or for whom decisions are made not to escalate after arrival in the ICU. Also, some children whose families use hospice services to spend as much time as possible at home before a child’s death return to the hospital as the time of death nears. 27 Occasionally, a family feels strongly that they would pre fer their child to die at home even if time is very short and asks if it is possible to transfer home for withdrawal of life prolonging interventions there. Organizing a compassionate extubation or discontinuation of infusions in the home takes planning and preparation. 28-31 Merely arranging for a trans port team is insufficient. Appropriate supports need to be in place to continue to care for the patient and treat pain or dyspnea if the patient survives for some time. Hospice agen cies are skilled at providing such support in the home setting and should be involved in the planning phases. One of the first modern hospices was founded in the late 1960s in London by Dame Cicely Saunders, a nurse who sub sequently pursued degrees in both medicine and social work in order to better advocate for comfort and dignity for dy ing patients. Her efforts led to a worldwide movement to im prove care of the dying. In the United States, hospices are independent agencies structured to be compliant with Medi care guidelines. Although there are hospice agencies dedicated specifically to the care of children in some large urban ar eas, most care predominantly for adults. 32,33 Comanagement from a pediatric medical team may help make home care possible. Hospices are dedicated to providing comfort and psychosocial support to patients with life-limiting illnesses. In some health systems, this care can be provided at home with “on call” nurses to support families. Inpatient beds may be a backup option when needed, and sometimes are the only option. Even when a patient is expected to live for only a few hours following a transfer home from the ICU, having hospice involved for this sort of follow-up support can be im portant for a family. In regions or countries where structured

Copyright © 2023 Wolters Kluwer, Inc. Unauthorized reproduction of the content is prohibited.