“Palliative Intensive Care” at the End of a Child’s Life

Robbie is a 9-year-old boy with metastatic osteosarcoma, recently found to have significant disease progression with bilateral pulmonary involvement and diffuse bony pain. When his symptoms were unable to be managed at home with concurrent hospice care, he was admitted to the pediatric ICU for intensive symptom management. His pain was finally captured with a hydromorphone infusion, steroids, a nonsteroidal anti-inflammatory medication, and a dexmedetomidine infusion. For dyspnea, he used frequent bolus doses of opioids and low-flow nasal cannula oxygen. Any attempts to wean him off his dexmedetomidine infusion resulted in worsened pain that was minimally responsive to escalating opioids. He and his family elected to stay in the hospital for end-of-life care, and in thoughtful conversation with his medical team, decided to limit intubation and resuscitation. Robbie and his family felt connected to and well-supported by the ICU team with close relationships with Robbie’s primary nurses, the ICU attending physicians, the ICU nurse practitioners, and the ICU child life specialist. The ICU was nearing capacity with high acuity, prompting leaders to frequently review patients who could be transferred to another unit. After a period of days, when Robbie’s symptoms were well-controlled without significant changes to medications or respiratory support, the medical team acknowledged that Robbie no longer had acute critical care needs and began to consider transferring him from the ICU to the floor.

After an acute period of intensive management aimed at prolonging life, patients nearing the end of life (EOL) may no longer meet the criteria for ICU management per critical care medicine guidelines¹  and yet may still require elements of care that are only achievable in an intensive care setting. In fact, the ICU is the most (and sometimes only) appropriate location of care for actively dying pediatric patients with high symptom burden and for patients whose families elect to protect them from further life-sustaining interventions (eg, discontinuation of mechanical ventilation). In such cases, intensive care can be crucial in supporting a child’s comfort even when ICU interventions will not impact survival.

We call on the pediatric hospital medicine, critical care, and pediatric palliative care communities, including all clinical leaders, administrators, and bed managers to consider the role of “palliative intensive care” in supporting diverse goals of care, including those that are noncurative. Recognizing that EOL care in ICU settings is not a novel idea,²  we offer 6 axes of “palliative intensive care” (Table 1) operationalized by 7 key questions (Fig 1) to guide clinical teams’ ICU triage for children approaching death:

1. Institutional Policies and Regulations: Many hospitals require certain analgesic and/or sedative medications to be administered only in the ICU setting (eg, dexmedetomidine, ketamine). Other medications that may be available in an ICU are not quickly accessible on the floor. Clinicians outside of the ICU may be uncomfortable using these medications, especially at high doses (eg, rapid titration of opioids and benzodiazepines for worsening symptoms). Certain forms of respiratory support, such as a high-flow nasal cannula or non-invasive positive pressure ventilation (NIPPV), are often restricted to ICU settings. (Question 1)

2. Nursing frequency and intensity: ICU nurses know how to adjust staffing (ie, 1:1 or 1:2 ratios) to assess and attend to intensifying symptom burden experienced by patients with deteriorating clinical status. ICU nurses have primary palliative care skills not typically in the toolbox of nursing staff on the general floor (eg, expertise, comfort, and autonomy in managing symptoms amid hemodynamic instability, experience with coordinating diverse interprofessional perspectives to support family communication). (Question 2)

3. Capacity for rapid mobilization: ICUs are designed to rapidly escalate symptom management and quickly pivot to ICU-level, life-sustaining interventions (eg, initiation of mechanical ventilation). The ability to provide intensive life-sustaining therapies may be important even as a child approaches EOL when life-sustaining interventions are consistent with family goals and may have some benefit (eg, time-limited trial to evaluate new treatments or time for family members to say goodbye). (Question 3)

4. Experience and expertise in providing EOL care: Most deaths in children’s hospitals occur in the ICU, far more than on the floor.^3,4  ICU staff, therefore, have more experience walking with families through the dying process. Given critical care medicine’s tight hold on physiology, death in the ICU is often more controlled and predictable, allowing for anticipatory guidance and preparation.^2,5  ICU staff are experienced in nuanced assessment at the EOL, as well as symptom management, including outside-the-box, nonpharmaceutical approaches. ICU team members are uniquely positioned to assure families that all reasonable interventions were considered when exploring and potentially exhausting all possible interventions aligns with patient and family goals. (Questions 4 and 5)

5. Bidirectional familiarity: For many children with serious illnesses, the ICU is a familiar place. The ICU staff often know the child intimately, optimizing surveillance of clinical status, interpretation of symptoms, and patient- and family-centered responses to distress. Familiarity yields trust in the clinical team, which correlates with decreased decisional regret.^6,7  (Question 6)

6. Accessibility of psychosocial care: Given the higher frequency of EOL and stressful events, ICUs often have around-the-clock access to psychosocial care providers, including social workers, child life specialists, and chaplains. These clinicians offer crucial support for children with serious illness and their families, as well as for the staff that cares for them. In addition, psychosocial clinicians covering off hours are experienced in working with ICU teams, facilitating collaboration in support of patients, families, and the clinical team. (Question 7)

One important effect of “palliative intensive care” is improved symptom capture (especially of pain, dyspnea, and agitation). By anticipating and attending to sources of suffering, the patient and family are able to spend more comfortable, meaningful time together, a goal that many hospitalized families articulate when anticipating their child’s EOL⁸  and that many bereaved families convey when reflecting on their child’s final days.⁹ 

Even as we call for consideration of “palliative intensive care,” we appreciate the capabilities of robust inpatient teams who provide excellent EOL care for children outside the ICU. Pediatric palliative care teams, increasingly present within children’s hospitals nationwide, play a crucial role in supporting many of these axes outside of the ICU. Palliative care teams have a longitudinal rapport with patients and families, expertise in EOL anticipatory guidance and symptom management, access to interprofessional psychosocial support, and effectively mobilize and intensify care for actively dying patients. Nonetheless, we recognize both the limits of consulting teams and of the floor care teams to act on consultant recommendations. Sometimes, EOL care needs surpass the palliative care consulting team’s capacity and warrant support in an ICU setting. Although consulting palliative care teams offer an invaluable layer of support to children and families navigating EOL regardless of location, bedside staff in pediatric inpatient units face major limitations in training, experience, and staffing models when tasked with the moment-to-moment care of a dying child. Often, inpatient pediatric units staff 1 nurse to every 3 to 5 patients, which is profoundly insufficient for the intensity of care required by a dying child and their family.

We recognize that in calling on our health care systems to imagine “palliative intensive care” for children at the EOL, we must work within resource and staffing limitations. Despite the belief hospital metrics (eg, ICU mortality) should not drive decision-making that could negatively influence patient care, many ICUs across the country are pressed to care for all children who require critical care, iteratively reassessing which children continue to require intensive care. We are not recommending that all or even most children should die in an ICU; in fact, studies evaluating EOL care suggest death outside of the ICU is an important quality metric.¹⁰  Yet, emerging evidence indicates that ICU death is associated with decreased parent-perceived suffering compared with death at home; multivariate analysis suggests that parental preparation for EOL is associated with decreased suffering.⁹  Therefore, although death outside the ICU may be preferable in many ways (ie, without intrusive sounds and strict visitation policies), death in other locations may fall short of meeting some children and families’ needs because of limited medical and human resources. Critically and iteratively evaluating whether such resources are available in any setting where a child may die is key.

We recommend using the concept of “palliative intensive care” to shape institutional policy and clinician education and practice. Educating pediatric critical and inpatient care teams, as well as palliative care clinicians, how to consider facets of intensive care that are especially conducive to, and even critical to, palliative care is essential from the beginning of training. Institutions should prioritize interprofessional trainings, staffing models, and policies that support “palliative intensive care.” Pediatric palliative care teams can work with and empower ICU clinicians to identify children and families who would benefit from “palliative intensive care” and help titrate that intensive care to best support them through the child’s death.¹¹ Figure 1 proposes a process for evaluating a patient’s need for “palliative intensive care.” Collaboration and regular communication between the critical care, hospital medicine, and palliative care medical and nursing teams are essential to ensuring that patients and families receive the highest quality, patient-centered care in advanced illness and at the EOL.