The majority of deaths in the pediatric ICU follow a decision 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 Kingdom, withdrawal of treatment precedes more than half of pediatric ICU deaths, while authors from Europe and Brazil have reported that the proportion at their centers is below 50% (18,19,20,21,22,23,24,25,26,27,28). A recent multi-institutional study in the United States reported that out of 1,263 pediatric deaths, 12% of the children died despite ongoing interventions, 23% of children were declared dead by neurologic criteria, and 65% had do not attempt resuscitation (DNAR) orders initiated or had therapies withdrawn (29).

For patients whose death is anticipated, a question may arise about whether it is appropriate for the patient to remain 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 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 an 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 appropriate for a patient with a DNAR order to be admitted to the ICU. Even when procedures 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 who 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 (e.g., 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 available 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 based on a best estimate, with an acknowledgement 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 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 he could breathe 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.

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 terrifying 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. While studies have shown that more pediatric patients are using home hospice services over time (30,31), many ICU patients have clinical instability or a need for minuteto-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 technology, or for whom decisions are made not to escalate after arrival in the ICU.

Occasionally, a family feels strongly that they would prefer their child to die at home 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 (32,33). Merely arranging for a transport 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 agencies 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 subsequently pursued degrees in both medicine and social work in order to better advocate for comfort and dignity for dying patients (34). Her efforts led to a worldwide movement to improve care of the dying. In the United States, hospices are independent agencies structured to be compliant with Medicare guidelines (35,36). Although there are hospice agencies dedicated specifically to the care of children in some large urban areas, most care predominantly for adults. Many will consider caring for children if a pediatric medical team works with them to offer advice or co-manage. Hospices are dedicated to providing comfort and psychosocial support to patients with life-limiting illnesses. This care is often provided in the home, by a team of nurses who are on call 24 hours a day to come to the home in order to help a family assess symptoms or manage a change in status. Hospices do not provide “shift” nursing care for a patient who has long-term, minuteto-minute needs in the home, but can often provide “continuous care” for up to 72 hours for a patient who is actively deteriorating. Many of the agencies also have inpatient beds in hospitals or in their own facilities, which can be used when a family needs respite or when a patient’s needs cannot be met in the home. Hospices are also invaluable in managing the logistics of having a patient at home, can arrange for the delivery of medications and equipment, can help a family maintain a “nonmedical” atmosphere, and can provide a mechanism for allowing death to be declared in the home. In addition to the team of nurses, hospices have a physician medical director, social worker, a chaplain, a bereavement support team, and the ability to provide some hours of assistance from nurse’s aides or volunteers. 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 important for a family. In regions or countries where structured home care systems are less available, a primary physician or hospital team may need to be much more closely involved
to transfer an ICU patient home, and it may not be possible to do so. There is wide variability in the development of hospice and palliative care services by country (31,37,38), and many economically developing nations do have robust systems in place. Challenges to providing such care in much of the developing world include inadequate infrastructures, extremely impoverished patients, restrictions on opioid prescribing, and few educational opportunities for healthcare staff (3).

Medicare regulations in the United States require that a physician certify a patient’s disease process has a typical life expectancy of less than 6 months in order to qualify for the hospice benefit. Pediatric patients are not usually covered by Medicare, but hospice agencies typically still require that such a form be completed for every patient. Because the trajectory of disease processes are much more difficult to predict for children, parents may need to be warned (or reassured) that providing such a certification is not an accurate prediction of life expectancy for an individual patient.

Concurrent care refers to the concept of providing hospice support to patients while they are simultaneously receiving ongoing curative or life-prolonging therapy (39). A quandary often arises when patients or families wish to pursue ongoing treatments such as experimental cancer therapies but would also prefer to remain home as much as possible rather than being hospitalized. Referral to hospice is often the best way of supporting the latter goal, but in the past this benefit was usually unavailable to patients who wanted ongoing disease-directed treatments. Recent legislation requires that state programs support concurrent care for children (40), and most private insurers have followed by adding this benefit. It is not always clear, however, when timing of hospice referral is appropriate for children (39).

Palliative care teams are distinct from hospices. These hospitalbased clinical teams focus on pain and symptom management, and psychosocial and decision-making support for patients with potentially life-limiting illnesses and their families. Many of these teams work closely with hospices to help assure smooth transitions of care between inpatient and outpatient teams, but not all patients followed by palliative care teams are enrolled in hospice (14). Pediatric-specific teams are not available in all institutions, but the numbers are increasing (41).

Palliative care teams certainly do not need to be involved in the care of every patient who dies in an ICU. Managing pain and symptoms, navigating difficult decisions with a family, withdrawing life-sustaining technologies, and handling the logistics of a death should be core competencies for any ICU team regardless of whether a palliative care team is available. A consultative palliative care team may be most useful when a transition to home or a prolonged survival beyond the ICU stay might be anticipated, when focused expertise on difficult symptoms is needed, or when significant time devoted to helping a family make decisions becomes necessary. Most palliative care teams also have a strong multidisciplinary focus, with possible team members including physicians, nurses, social workers, chaplains, psychologists, therapists, and bereavement coordinators who can continue to support families following a child’s death.

The medications used to treat pain and symptoms at the end of life are common tools in the armamentarium of any intensivist. When goals of care shift to comfort rather than life prolongation, medications may be titrated and escalated differently than in other patients in the ICU. Clinicians are sometimes concerned that medications administered to treat suffering may hasten death (42). The principle of double effect (see also Chapter 15) justifies using medications to treat suffering when necessary even if a patient’s respiratory effort is compromised (43). In typical practice, it is rarely necessary to invoke this argument as both neonatal and adult studies have suggested that doses of medications used are not associated with time to death (44,45). If doses are titrated on the basis of symptoms (often a 20% increase in a dose or infusion for mild symptoms or a 50% increase for severe symptoms (46)), then symptom control should usually occur before respiratory depression (47). In end-of-life care, it is particularly important to recognize that there is no “ceiling” on the doses of medications that can be used, particularly for patients who may have become tolerant to medication effects over time. If the patient is still in pain or is dyspneic, the dose can be increased, rapidly if needed. For patients who may go home with hospice, it is important to coordinate with the agency regarding which medications are available to them for home use.