68 Even when death is likely to occur in a hospital, as for a newborn infant with a fatal condition, families and clinicians should consider which hospital makes sense, a local community hospital nearer family, or a referral center with more palliative care resources. Dussel et al found that when families had early discussions about preferred location of death, the child or adolescent was more likely to die in the preferred location, and if that location was in the hospital, the death was more likely to occur outside of an ICU. 66, 67 Some children and adolescents and their families elect to be at the hospital for end of life for a variety of reasons, including familiarity with the institution and staff and concerns about symptom management and support at home. 46, 63 Although data suggest that adults prefer to die at home, 64, 65 the pediatric data are less definitive. Regardless of the location, the mindset and compassion in the care delivered to the dying patient and family is fundamental. Helping children and adolescents and their families think about whether home, hospital, or elsewhere is the preferred location for end of life is key to meeting their goals of care at this stage. 42 Engaging continuity care clinicians is key for these patients, as their families may have faced multiple serious decisions over time and may benefit from clinicians who can place the end-of-life considerations in the context of those prior decisions. 41 The importance of SDM is also heightened for children and adolescents with complex medical conditions or disabilities, as outlined in its own AAP clinical report. Inclusion of the adolescent patient in SDM at the end of life requires a particular skillset. 28, 40 SDM at the end of life requires attention to cultural and community norms, religious beliefs, impact on siblings and extended family, and prior experiences with death. 39 The SDM process includes exploring patient and family values, providing medical information in an individualized way, and then recommending a treatment course to align with what matters most to the patient and family. 22– 30 Some of the key communication needs are summarized in Table 1.Īs noted in the AAP policy statement on forgoing life-sustaining therapies, when clinicians engage in partnerships characterized by shared decision making (SDM), it can reduce the often overwhelming burden on children and families contemplating end-of-life care. 21 Multiple studies have assessed the communication needs of families of children and adolescents with life-threatening conditions. Consultation with a specialty palliative care team is often about facilitating communication and/or providing decision-making support.

18, 19 The AAP recommends specialty PPC “should be consulted for advanced clinical treatments and complicated decision making and for social and spiritual needs beyond what the primary care team can provide.” 20 Palliative care teams can help to optimize complex pain and symptom care, quality of life, appraisal of prognosis, conversations about shifting goals, and family and care team support. The AAP first endorsed a commitment to palliative care with a policy statement in 2000, 17 and the reach of pediatric palliative care programs has grown since that time. The crucial partnership between patients and families with their pediatric primary health care teams can be complemented through the involvement of subspecialty PPC.

End of life decisions ethics